How to Cope With Uncertainty and Fear During a Pandemic

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How to Cope With Uncertainty and Fear During a Pandemic

I know that a lot of folks are struggling physically right now, and all I can do for them is pray (which I am). I also know that so many more people are struggling emotionally and psychologically (my practice is booming). For those folks, there is a little something I can do; and that is to offer some some suggestions of how best to cope during this time of uncertainty and fear. Here are a few:

1) Take care of yourself physically - eat well, get plenty of sleep, and EXERCISE. Not only will you strengthen your immune system to fight off this evil virus, but your mental health is very closely tied to your physical health so do what you can to take care of both.

2) Take a time out. Tell anyone that is quarantined with you to leave you alone for a little while.  Slow down, put on soft music, and pray, meditate, journal, or whatever it is you do to center yourself and stay grounded. You can't change what happened yesterday, and you can't control what may happen tomorrow; so focus on this moment in this day. Sometimes it helps to think about what you are sensing, hearing, tasting, and smelling right this moment.

3) Avoid exposure to TOO much news. Set a timer for yourself if you have to. I know it is important to stay informed, but too much consumption can just cause anxiety. 

4) Stay connected with family and friends. Reach out through all the virtual venues we are so lucky to have. Voice your concerns, listen to theirs, complain to friends, and just vent!!! Video calls are great! Consider using zoom or houseparty.com to host a group chat with current or even old friends. Also, use this time to be with family, and actually enjoy this quality time together; have those family dinners or game nights you always say you'd do if you only had the time.

5) Get outside. Nurture yourself with nature! Take advantage of the beautiful spring days, and get some fresh air and vitamin D. Studies show it boosts mood and mental health in general.

6) Did I mention exercise? Exercise works as well or better than antidepressants, with no side effects. Use the body's natural morphine (called endorphins) as a preventive measure OR a treatment to get through this pandemic - when you finally come out of this house arrest, you'll be looking fit and fabulous, or at least you'll avoid the quarantine fifteen.

7) Do not be afraid to reach out. If you find you are needing some professional help, or if you are a healthcare worker that is overwhelmed right now, contact me. I will get back to you within 24 hours. Promise. If we know each other too well, I can point you to another counselor that might be a good fit. But don't hesitate to reach out! 

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No Barriers 2019

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No Barriers 2019

Another No Barriers Summit under my belt!  (For a recap of previous Summits, click here or here.)

Last month, Brook and I traveled to Lake Tahoe to join my favorite group of people for a weekend of inspiration and adventure. The last time we made the cross-country journey, we had five kids in tow, so this time, our day of flying seemed easy and short. We made it to the Squaw Creek Resort, had a quick dinner, and turned in early since we knew we would need every bit of energy over the next few days.

The next morning came quickly, a California sunny sky with a cool mountain breeze. Mornings don't get better than this.

After greeting some old friends and meeting a few new ones, we set out on our first adventure of the weekend — an “easy” four-mile hike. Four miles up and down, over and around on a rolling and hilly trail may seem easy to some; and five years ago, I would have actually been bored during this half-day jaunt. But on this chilly June morning, I was admittedly a bit intimidated by the distance to come and downright scared of all the roots and rocks underfoot that threatened to trip me and throw me face-first into the dirt.

Then I looked around and was comforted to see what we at No Barriers call a rope team — a physical support group of sorts who is willing, able and eager to help you through any feat. A good rope team will push, pull, protect, catch, or carry you through any barrier. I knew in that moment that, with them, I could do this!

As we set off, someone tossed me a hiking stick, about which I had conflicting thoughts…

First: “Do I look like I need a stick to help me up that measly, little hill over there?”

Second: “Yeah, well, maybe I do.”

Swallowing a tiny bit of pride, I smiled and accepted it, “Thanks.”

amputee hiking
hiking with no barriers

And so, we were off. All of us. Short, tall, skinny, round. All of us were off for a hike.

As young as one year, and as old as “I'll never tell.” All of us.

A handful of amputees. A bunch of folks with all four limbs. All of us.

Some of our limbs didn't “work”— due to strokes, disease, pain, or just plain… because.

But all of us would hike.

A few people in our big rope team were blind. One was deaf.

But together, we would hike. All of us.

We brought wheelchairs, canes, crutches and sticks, and we embarked on our four-mile hike.

All of us.

And hike we did.

I don't know about everyone else, but for me, it was a short four miles. Too short.

Not only did I meet new people, but, at the prompting of the hike leaders, I also had meaningful conversations with them.

We learned about the local flora, not only gorgeous but also life-giving. It was right as I was noting their beauty, however, that we were all given blindfolds to stimulate being vision-impaired … Suddenly, the roots and rocks and fallen branches became monstrous in my mind. What if I fell, got injured, and the rest of my trip was ruined?

But soon Brook was tying a blindfold around my head and gently tugging on my arm. Then it dawned on me. My rope team! I had nearly forgotten! (And isn't that always the way?). On the hike, like in my life, Brook was my partner; and I'm so grateful to have him on my rope team. He led me down a large hill and even over a tiny stream, announcing each rock, its size, and how best to avoid it. He also gently pulled me along — otherwise we may still be on that mountain! It was nerve -wracking to not know what was coming next, where a good foothold might be, or how steep the next step would be; these fears are only exacerbated fire me because I have no sense of touch on my prosthetic feet. And it was not lost on me that I was taking the easy way out of the exercise by choosing my “trust partner “ to be the one person in this world who I trust the most.

We switched partners, and it was with my eyes wide open that I was made fully aware of all the folks guiding and encouraging each other. Almost back to our busses now, I looked back up the hill and noticed the last few hikers and their partners, working to communicate, foraging their best paths, and encouraging with positivity. If only I could bring that spirit back to Charlotte, back to the real world…

Luckily, we did bring it back to our hotel, because next up was kayaking! We enjoyed a beautiful afternoon rowing on Lake Tahoe, where we could see straight to the bottom through sixty feet of crystal clear blue water. I had tried kayaking a few years ago at the Summit, but it hadn't worked so well because I had to be tethered to the oar, and the tether was, at best, awkward, and, at worst, dangerous. This year, they'd improved the design and had velcroed the oar to my arms, making things work so well that we could travel that much faster along the water! The adventure only grew when dark clouds suddenly rolled in, long bolts of lightning decorated the sky, and rough waters forced us to shore earlier than planned. 

amputee kayaking
amputee kayaking

The next morning, I had two hours of instruction, practice and competition climbing the rock wall - and I have to brag that I rang the bell at the top of the tower four different times! Who knows, this could be my next sport? But there is a clear differentiating point between the way I might have climbed before my illness and how I climb today. Before I became sick, my mindset would have been to beat the other climber to the top. Nowadays my main goal is for BOTH of us to reach the top! I've learned that, when we all reach the peak, we all peak!

amputee climbing
amputee climbing wall

In addition to participating in the adventure activities , Brook and I were inspired and entertained from sunrise until way past our East Coast bedtime for five days straight. We heard seven speakers, each one better than the last. We viewed two documentary films on giant screens under the stars. Then we were introduced to the Magic Giants, a folksy and fun rock band that (though new to us) is hugely popular on the West Coast. We even got treated like VIPs when Brook and I went backstage to meet the band mended! In short, The No Barriers Summit of 2019 was an entertainment hit!

magic giants
magic giants

Back when I first learned about No Barriers and its world-famous Summit, my reason for interest was to become a speaker. With stars in my eyes, I'd emailed their event planner to apply. We exchanged several emails; and she let me down easily but encouraged me with constructive tips, invited me to attend the Summit, and then even walked me through the process of applying for my whole family to become scholarship recipients. And the rest is history!  Moments before I spoke at this (the 2019) Summit, I got to meet, thank, and HUG the event planner who first convinced me to attend.

At this, my third Summit, I finally got to claim my dream of being a mainstage speaker! I got to share my experience of No Barriers with a slew of folks who needed encouragement to join (or rejoin) the workforce. My specific task in speaking was to not only introduce myself and my story but also to reframe disabilities in the world of work.

Instead of thinking about what people with disabilities CAN'T do; I spoke about the need to focus on what we can BRING to an organization! Instead of dreading how they will ever meet the quota for inclusion, employers should celebrate in hiring people with disabilities for all they can bring to an organization - determination, creativity, and compassion, to hand just a few. I  used this platform to persuade people of all abilities that including people with disabilities in their organizations can increase morale, motivation, and their bottom line. Pretty cool, right? 

I've written in previous blog posts of how much I enjoy being on stage, holding a microphone, and spreading my story of hope and resilience. My talk in Tahoe was no different, except that it was even more fulfilling because I got to share the stage with a new friend Kathy Martinez (pictured below). 

Kathy is a top executive at Wells-Fargo in San Francisco who has been charged with making Wells an organization that is attractive to people with disabilities and where people with disabilities can easily succeed. In a similar way, she made it her job to make me, a disabled woman, shine on stage. That she did. (And in one of my favorite No Barriers photos below, I tried to return the favor - LOL).

kathy martinez and kristan seaford

Kathy is fun, she's funny, and she put me at ease right away. She asked good questions and allowed them to flow naturally. Kathy "got" so many of my fears, frustrations, and failures but also shared in the increased rewards I feel when I surmount struggles in order to succeed in this world of able bodies. You see, Kathy understands. She has a disability herself: Kathy is blind. 

speech
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IMG_4608.jpg

This doesn't sound like the typical bus trip for the elderly or disabled, does it? Well, it's not. As I've learned over the past three years, the No Barriers Summit is for people who aren't defined by physical abilities. It is for those of us who truly believe that "What is within you is stronger than what is in your way."

At the No Barriers Summits, every person I meet is more inspiring than the last. In fact, Brook made the comment one day that he was feeling like a second class citizen and sort of wished he was disabled too! My friends at No Barriers inspire me to keep reaching and to keep achieving more and more. One night while at dinner in Tahoe (without kids, hooray!), Brook and I decided that I need to step up my game if I'm going to keep up with the group! It didn't take long to decide on my next goal… So… (Drum rolls?) My goal for this year is to participate in Cycle to the Sea— a local charity event where I will bike 180 miles over three days — from Charlotte to Myrtle Beach— in April of 2020. Watch out Myrtle Beach, here I come!

II am so grateful to many who have mentored and motivated me over the past few years, but No Barriers has exceeded any other in providing the biggest, most supportive community as well as the largest number of adaptive activities and sports. If you are ever feeling philanthropic and have any amount of money to spare, I highly recommend donating to No Barriers, USA. And if you are ever in a rut, need a bit of inspiration or are starved for motivation, let me know. I'd love for you to join me at a future Summit. You won't be sorry.

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One Last Cooking Feat

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One Last Cooking Feat

In the previous two posts, I've recounted some accomplishments (for me anyway) that I've recently been able to achieve. (See Back in the kitchen and Bread That's Really Cake)

Baking my dear old bread was one of the last items on the running list I’ve kept of things I wanted to do again after losing my hands. I always say that obstacles are opportunities to overcome and that conquering one obstacle gives us the drive, the confidence, and the skills we need to tackle others. So, inspired by this new confidence, I decided to at least approach another item on that list of things that (before my disabilities) made me, well, me -

Cooking for other families who might need my help (imagine that!). Of course, my very favorite example of that is a family with a new baby.

Now, in truth, I have brought meals to people since my recovery, but I've mostly used things prepared at the grocery store or one of my dear mother-in-law's famous chicken pies that usually grace my freezer. (I think she knows I've done this once or twice, or I at least know she wouldn't mind, right Megie???)

But this time, this time, I vowed to do the whole meal myself!!! We have some new friends at church who have quickly won my heart. Plus, they'd just had a set of TWINS!

Remembering how hard it was when I had newborn twins (at least the parts I haven't blocked out) I truly wanted to do something to help them.

Check out this picture of us when Lauren and Maizie had just come home:

seaford twin babies

Now look more closely. See the enormous dark bags under my eyes?

Yes, I wanted to do something to help the dear Carter Family. Plus, let's be clear: making them dinner was my admission ticket to their home so I could see their little bundles! My motives weren't all altruistic...

So, here we go. I wanted to make a dish that was something

a) I used to make all the time to bring to others,

b) I'd not made since becoming an amputee,

c) not pasta/lasagna,

d) easy (I'm ambitious but not an idiot).

I got out my trusty old recipe binder and chose Turkey Enchilada Grande, and it fit the bill. It was an old favorite that we haven't had in five years, it has no noodles, it freezes well, and I remember being able to throw it together in less than thirty minutes!

I convinced one of my twins (only appropriate), Maizie, to do the can-opening so as to avoid cutting my "hands" with the can opener again (yes, that happened) and to be my photographer; but I was otherwise solo in this endeavor...

I started out by browning the ground turkey and managed to add the beans, tomato sauce, spices, and enchilada sauce without incident; but it was also without speed!!! We were going on 45 minutes, and it hadn't even simmered yet!!! Ugh.

simmering sauce

But, a slow runner is still a runner. So I kept going.

While I waited for the sauce to cook, I wiped all of it off my "hands," which would prove to be useless because they just got dirty again, and I knew the tomato sauce would stain anyway.

washing hands

Then I lined the dishes with tortilla shells and opened up the packages of cheese.

Once the sauce had simmered, I tried to spoon the sauce on top of those tortillas; but I just couldn't lift the pan with one hand and scrape the sauce into the dish with the other! My photographer (Maizie) offered to help, but my stubborn self was determined to make this a solo run - I tried several different positions; I even tried to lift the pan with both hands and pour the sauce out. But then I *almost* dropped the entire pan on the floor!

Poor Maizie tried to help again, but I almost bit her head off in a true toddler-style "No, I do it myself!"

"Fine," she said, "but I can't bear to watch."

And, with that, Maizie left the room to go practice the piano.

"Hmphh," I thought. Thanks for your vote of confidence, Maizie. And I went back to work. After a few false starts, I finally decided to spoon the sauce one little spoonful at a time.  It took a whole lot longer, but it did work. Still, I knew Maizie was right; I should've just accepted her help...

After sprinkling the cheese and then repeating the process for layer two, I had clocked in at 2 hours 40 minutes for my  "less than thirty minutes," easy meal. Still, I'd proven to myself (and Maizie) that I could "do it myself!" Triumph!

enchiladas

So a bag of salad and a store-bought dessert would have to do. (I'm not super amputee girl, who're we kidding?)

Now for the really fun part: cashing in my meal for a visit with the Carters! I couldn't wait to see their sweet little babies and give them the adorable, tiny, coordinating outfits I'd picked out as gifts!

Maizie and I arrived at the Carter's house, expecting to find a set of tired, frazzled parents in a mess of milk, diapers, and dirty clothes. What we found was quite the opposite!  

We walked into their gorgeous, sparkling clean, and surprisingly quiet home to find that Lauren and Chris are the calmest, most well-adjusted new parents I've met. They are pros at this, I swear!

And those babies! They are absolutely delicious!

And it's so cute that Benjamin looks like daddy (Chris) and Madeleine looks like mommy (Lauren). In other words, they are beautiful.  

When Lauren offered that I could even hold one, I didn't miss a beat— I quickly sat down, took off my "hands," (those same ones that my toddler-aged Jeannie once deemed "not so snuggly") and reached for that bundle of joy.

And for the next few minutes, the world stopped. Oh, I do love babies. The warmth they emit, the softness of their skin, the smell of, well, baby!

Lauren so easily shared her little miracles with me. She never blinked when I threw my prosthetics to the side, and she even normalized it by offering to snap a quick photo of us.   

kristan with twin

I loved being able to help out a friend in need, something I took for granted those years ago.

With each passing day, I understand more fully that I took my everyday life for granted. Now I see that even obligations quickly turn to gifts when seen from my new perspective. Cooking dinner, holding babies, driving carpool, signing permission slips, chaperoning field trips… the list goes on. These are all things that, from my hospital bed, I feared I'd never get to do (or complain about!) again.  

But slowly, slowly, I'm taking these things back. Just in this past month, I've been able to cook, bake, make a meal for a friend, and savor the ultimate reward of time with a baby!

My heart is full.





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Bread That's Really Cake

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Bread That's Really Cake

A couple of weeks ago, I wrote about what it has been like for me to get back into the kitchen after losing my limbs. (See Back in the Kitchen).

Being able to put a (very) simple meal together is one thing, but baking is quite another.

For five years now, I’ve mourned that (another) one of my greatest joys was taken away with my limbs. But underneath that sadness were other emotions as well. There were glimmers of hope - each time I conquered a difficult task in the kitchen, I became more hopeful that maybe I could bake my favorite Amish Cinnamon Bread. But something was stopping me. Upon reflection, I realized what was stopping me. It was fear.

I was afraid that my memory of baking would be forever tainted with a new imprint of baking as a frustrating failure.

Or that I could logistically perform each step of the recipe, but it would be so slow and arduous that the joy would be gone.

So I sat on the hope. I allowed it to be smushed by something that we counselors and psychologists like to call "negative self-talk." Mine sounded something like this:

"You'll never be able to do it by yourself!"

"It will be a huge mess of flour, sugar, and egg shells!"

"You'll never be able to stir that thick batter!"

"Who has time for this? It will take all day!"

"It won't even be worth it. When I try to lick the batter, all I'll taste is the plastic and rubber of my fingers. Bleh."

"Amputee Amish Bread? Ha, try Colossal Crippled Fail"

The idea of trying to bake again was sounding worse and worse. And my hopes were dashed - almost.

Sometimes all we need is a tiny nudge in order to make us give something a shot.

Mine came in a little square Tupperware container, given to me by my sweet, seven-year-old niece, Anna. Inside the container was a cloudy, milky liquid. It looked almost like... Well, almost like... A SCIENCE PROJECT!

…..


It seemed that my niece Anna has taken to baking! Unbeknownst to me, she had discovered a recipe for Amish Cinnamon Bread, aka Friendship Bread; she had baked the bread and was sharing starters with three friends - one of which was ME!

I figured that if she could bake Friendship Bread, then so could I! This was just the encouragement, just the “starter” that I needed.

And so it began. I added the milk, flour, and sugar on day three, stirred it on day five, and on day ten...I BAKED!

Early in the morning on day ten, as soon as "The Littles" (what I call my three girls who are ten and under) left for school at 7:00 am, I got started. I was sure to do it while everyone was gone to avoid the temptation of asking for help - I wanted to do this all by myself.

I knew I needed to leave for work by 11, but I was sure that FOUR HOURS would be enough to bake bread, a task that used to take all of 25 minutes. Let's just say that I was a few minutes late for work...

But I baked.

baking mess

I really, really baked!

I measured, I poured, I cracked three perfect eggs; and I stirred the thick batter.

Then it was time for the taste test:

I dipped my fingers in the bowl and licked the batter, expecting cinnamon and sugar and...Yuck!!!! it tasted like dirty rubber.

But when I licked it off a spoon, the batter tasted just as delicious as I remembered. And Bite 15 was just as good...

Although it was awkward and messy, I managed to coat the pans with cooking spray, cinnamon and sugar; and I sheepishly poured in the batter.

Then it was time to put the loaves into the oven and watch to see if the bread would rise and turn golden brown.

20 minutes passed. The batter still looked  heavy in the pan.

10 more minutes. No movement at all.

OK, OK, wasn't there some old adage that a watched loaf never rises? No, that was boiling water. No matter. I decided to let it be for the entire 55 minutes.

I went to dress for work, and soon I heard an oddly familiar DING!

I opened the oven door, and...

amish friendship bread

Voila! Out came three loaves of (almost perfect) Friendship Bread!

Oh, and it was just as yummy as we all had remembered. Straight from the oven, it was  warm, moist, and sugary sweet! I gotta say— I was proud of my accomplishment. And my batch definitely earned it's name...

It was Bread That Was Really Cake!

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Back In the Kitchen

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Back In the Kitchen

When I became an amputee, there was one other lady who lived in Charlotte who was a quadruple amputee. Her amputations resulted from sepsis as well, but in her case the infection began after a kidney stone. In my early days as an amputee, this dear woman came to visit me on multiple occasions to provide encouragement as well as instruction on how to use my (then) new prosthetics. She drove to my house, which amazed me because I did not think I would ever be able to drive. She showed me how she could use an adaptive fork to eat relatively gracefully. With light in her eyes, she bragged about her young grandchildren and told me about how they've adjusted to her prosthetics. Apparently, she was even able to babysit them with little problem. And she even told me about how she was able to go back to work full-time!

This woman gave me hope in so many ways - it seemed like there was nothing that she couldn't do! But she also shared with me the things that, after six years as an amputee, she still found impossible to do on her own. Between her husband and her home health aide, she still received help each day with showering, dressing, and preparing meals. She talked of how, in her early days of being an amputee, she had tried cooking and such, but "it was too frustrating, so I just told my husband that it would be his responsibility from that point on.”

In those early days, I was awed by her abilities and, while I was hopeful that I would one day reach equal "footing" with her; I never would have aspired to surpass her abilities.

As such, I resigned myself to never having the ability to cook, meaning that I was perfectly proud of myself when I managed to heat up some leftovers.

Before I became disabled, I would not have called myself a gourmet cook; but I could get dinner on the table most nights of the week, and I could prepare something special now and again. But baking. Baking was something I could do. And it was something I loved to do. Cookies, cakes, banana pudding. I especially loved making and decorating birthday cakes.

And then there was my “Amish Cinnamon Bread.” We also lovingly referred to it as "Bread That's Really Cake." This title came about because Ben one day referred to it as "Bread" when he asked for a piece at breakfast. Then Brook firmly told our boy that it was not bread at all but that it was truly CAKE because it was sugary and had the nutritional value of a of a piece of cake, meaning nil. From that day forward, Ben called it "Bread That's Really Cake." That title rolled off his tongue as if that were the most natural of names - just like "Tom John Tom" was the most normal of names for a Christmas elf during advent...

My mouth still waters when I think about the batter for Amish Cinnamon Bread, which is also called "Friendship Bread," and began with a “starter” that consisted of a concoction of flour, milk, and a whole lot of sugar. My husband Brook lovingly referred to the starter as my “science project.” He was never very fond of the gallon-sized Ziploc bag that, in his eyes, cluttered the kitchen countertops and became disastrous the few times that it leaked.

What follows is THE recipe - even after five years, I am writing this by heart (and I purposely don't refer to it as “from memory”).  

This “science project” always sat on my kitchen counter in a gallon-sized ziplock bag. I imagine that, once I was comatose in the ICU, someone had to throw my bread starter in the trash. I am fairly confident that Brook didn't perform this task lightly; doing so would have been an admission that I would not be home again baking any time soon.  

There was a rather complicated  process wherein the day you bake is assigned the title of “Day  One.” Each day you pick up the bag and squishy-squash it around. On Day Three you add a cup of sugar, a cup of flour, and a cup of milk. On Day Seven you repeat the process. Then on Day Ten, you pour the concoction into a rather large bowl. With a wooden (not metal!) spoon, you stir until the mixture is combined but still lumpy. Pour one cup of the new mixture into each of four new ziplock bags.

Give three of the bags to three different friends so that they, too, can bake —hence the nickname “Friendship Bread.” The fourth bag becomes your new starter, and what’s left in the bowl becomes the start of the bread batter for what you’ll be baking!

In order to get the “rest” of the recipe, you’ll have to PM me…

For many years, I baked this bread consistently every ten days (give or take a day or two). I never got sick of this bread, though Brook was consistently sick of having my “science project” cluttering up the kitchen countertop. I added pumpkin to the concoction from October through December. I brought this to family gatherings, potluck dinners, PTO gatherings, school and church bake sales, new neighbors, families with new babies or sick loved ones. One year I started baking and freezing loaves in September so that I’d have enough for family, friends, and teacher gifts that Christmas. If memory serves me correctly, I had close to forty loaves frozen for the holidays. But even more loaves were sacrificed to my cravings for sugar and sweets; I would plan my long runs for “baking days” so that I would have zero guilt for my bowl-licking tendencies.

One of the things I miss the most about having human hands is my ability to bake, specifically baking my Amish bread. I would love to try it again, but something is holding me back. Possibly the fear of ruining it, or at least the memory of it? Or perhaps the fear that baking will be full of more difficulty, pain and frustration than joy - much like what has happened with running.

I’ll never know unless I try. However, if I never try, then the hope and possibility will forever remain. In some ways, I don't want to ruin the good memories I have with my baking by trying to replace them with the new (and probably slower, less graceful moves). It is analogous to not wanting your kids to see your ailing and failing parents; you want them to remember their grandparents from when they were young, vibrant, and strong! Why should you ruin their memories? And why should I ruin mine?

Still, what if baking is like driving? What if it comes back easily? What if I realize that, with it, comes freedom? What if it allows me to prove that I still have abilities? Somehow though, I doubt that would be true…I have the stinking suspicion that baking is more like running and cooking than driving and walking.

Now, as for cooking. I do not have these amazing memories of certain dishes I cooked. I've always been more of a pragmatic cook. I'd rely on tried and true family recipes, most of them fairly easy, rather than seek out new dishes on the Internet. If I tasted something I liked at a friend's house, then I might ask for the recipe; but that was the extent of my "stepping out of the recipe box."

When it comes to cooking, it has always been more about taking care of people. Comforting them, helping them, celebrating them. Or simply filling their bellies so that the whining subsides.

Unlike with baking, I have begun to "cook" again. Mostly heating things up; but still, I can get dinner on the table. Ladies from my beloved CMG (which stands for Christian Mothers Group but is better known as the Christian Mafia Group because they "always have your back.") provided meals for my family for over three years. Then they progressed to making us freezer meals - packed in ziplock bags so that I could simply defrost, warm, and serve. These meals were wonderful, not only for their convenience, fresh ingredients, variety, and gourmet quality; but also because they allowed me to feel like I was actually feeding my family those meals myself, like I was a "real" mom. Don't get me wrong; just serving these meals was difficult for me and my prosthetic hands. It took me quite some time to be able to open a Ziploc bag. It's also dangerous for me to take hot pans out of the oven - burning my hand may not be physically painful, but it doesn't look too great on my prosthetics

IMG_0275.JPG

But there's also side dishes to consider; even a salad can be tough. Here's what happens when I try to cut vegetables!

There have been other snafus as well. One day I was going to make a chicken salad using canned chicken, and I cut both "hands" straight through the glove AND shell of the prosthetic. So much for canned chicken being cheaper than fresh. That was the most expensive can of chicken I ever bought.

But all in all, I am doing much better than I ever would have expected. Simple meals I can do, with a bit of effort and a sous chef (a.k.a. Seaford kid) of the day. I can do chili, most crock pot meals, and my new favorite one-pan meals with chicken, roast potatoes, and broccoli. And I have to say that I have gotten pretty good at cheese quesadillas.

As for the Amish Cinnamon Bread...To be continued.

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Mercies in Disguise

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Mercies in Disguise

mercies in disguise.jpg

My sister, Brittany, put together a gorgeous book — Mercies in Disguise — of all the CaringBridge entries and comments made during my illness and recovery back in 2013-2014. Thank you Brittany for this thoughtful gift; which, I'm sure, quite an arduous task! What a labor of love and kindness—  not only putting the book together but also the beautifully written journal entries, the comments posted, the prayers lifted, and the acts of love towards me and my family that it recorded. One comment noted that, during one 5-hour period, over 1,000 people had visited the site. Wow. 

There were literally thousands of people across the country praying for us, praying for me! It is no wonder that I recovered to where I can enjoy my life and enjoy my family! Truly, I'm surprised did not grow new hands and feet!

As I read and reflect on the stories (of which there were many) in this book, I am struck with a myriad of emotions --   But mostly I am grateful. Grateful for my life, my faith, my husband, my children, my family, and friends.  I could never in a million years thank everyone for their part in my story. All I can do is face every day, every struggle, every failure, every success, and every miracle with gratitude, perseverance, and HOPE. Whether your contributions were physical, spiritual, or financial in nature, I thank you. And I’ll continue to thank you all the days of my life. 

Mercies in Disguise covers that first year of experiences from my family’s point of view. And it is beautiful. But I am also writing my own book, from my perspective. So Mercies in Disguise won’t be the last book you’ll see with my name on it.  My dear friend Judy Boles has been helping me transcribe my story, my experiences, and my thoughts. It’s slow-going, but it is coming. My book is on its way!

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Dreams, Fairy Tales, and Superheroes

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Dreams, Fairy Tales, and Superheroes

I have always dreamed of having my own private counseling practice. That was what I had always planned to do once the kids were in school. I dreamed of a quiet office in a little old house, full of character and love. I'd have a nice big desk and a place on the wall for those hard-earned diplomas and awards. It would be peaceful and relaxing, complete with a big chair and yes, the therapist’s couch. (Little known industry secret: we don't hate it too much when we have a “no-show” appointment because that presents a perfect opportunity for a nap!) 

But back to my dream. In my dream, I'd love to work. I'd love my clients, and I'd love my office-mattress. I would go home at night exhausted but fulfilled in the knowledge that I had helped someone that day. 

I'm here to tell you that dreams come true. Prayers are answered. Things might not look exactly the way we pictured, and the roads to get there might be longer, curvier, and more arduous than we’d like; but dreams can and do come true.

There was a time there, a few years back when I thought the dream was over, that I might just as well let it die. Even if I was able to physically get to an office and hand someone my business card, who in their right mind would dream of hiring me as their counselor? Some folks would immediately dismiss me for the assumption that my disabilities would prevent me from doing my job, or doing it well. Others would take one look at me and run out the door because of the assumption that I'd judge their struggles as too petty or small next to what I've been through. Ironically, I was projecting my own doubts.

But, no, I'm a fighter. And fighters like to win. And winners hate to lose. And this is my dream, so butt out, doubters and demons!

These days I am seeing more and more how my traumatic experience, my pain, my suffering, my difficult journey back to life, even my daily struggles with ornery robotic hands - they all have purpose.

I've discovered that the struggles I've endured give me a window into the experiences of loss, pain, frustration, fear, shock, denial, guilt, shame, anger, blame - the myriad of emotions that I “get” in ways I'd rather not.

But these new understandings help me empathize and sympathize, because there is one feeling no one should have to endure. And that is loneliness.

Now, as a counselor, I can struggle with clients. I can more easily sit with them in their pain, uncertainty, and disappointments. This is empathy. This is a way of being present that you can't learn in any textbook. I had studied, trained, practiced, and, to some extent, succeeded as a therapist before. (Getting a license in Counseling is no joke). But sepsis, amputations, pain, loss - these have been my teachers.

What happened to me in 2013-2014 was (and still is) horrendous. But God makes good of all things. Indeed.

Being a counselor, in my own office, is joy. It fulfills me like nothing else. Recently, I was catching up with an old friend on the phone, telling her about my business. (We hadn't talked in a long time so she obviously didn't know I'd gone back to work.) Like me, she had recently rejoined the workforce after a hiatus to care for her young ones. Our experiences of going back to work are hilarious in their similarity - we were completing each other’s sentences in no time at all. 

Through the course of our conversation, we developed a terrific analogy (I love analogies), and nothing better describes my experience of living out my career dream:

I love being a mom. I've been incredibly blessed - I've gotten to (mostly) stay home with my babies for fourteen years! I cherish that time with my little ones, and I'll always treasure the years I've spent at home. 

But going back to work? It's been nothing short of exhilarating! And it feels like I am leading two separate lives. I'm still the mom that the kids have always known, and I am extremely lucky that, on most days, I am here to welcome them home off the school bus, help with homework, and drive carpool. Not much has changed in their world. Little do they know that I have a secret identity - I'm actually a superhero! Sshhh! 

Sometimes I announce that it's time for mommy to go to work! I'll leave the house as  their sameoold mom, but then I stop at the nearest phone booth, change out of my mom jeans and into clothes that match, and then “Off she goes to save the world!” - one client at a time.

I'll head to my sanctuary (aka my office) and meet with several clients, using all my superpowers... My head and my heart!

All too soon, the latest dames and damsels in distress are taken to safety, and it is time to return to my other identity. So I change back to wife/mom mode, messing up my hair and makeup for effect, tiptoe through the back door, and finish out my day without anyone being the wiser. 

Ok, so admittedly, this fantasy is a bit much. (And a bit hokie). But the exhilaration is real. I truly do feel like I have secret powers - skills and knowledge that no one knows (or remembers) I have. Not even me. And I've worked hard to get to superhero status. So I deserve the costume and cape, right? 

So, for my newest baby’s (my business) six-month checkup, so to speak: the results are in! 

Kristan Seaford, LPC, PLLC is a healthy new business! Her growth is slow and steady, just my speed! I'm still speaking to groups large and small, so keep  sending opportunities my way. But, for now, my focus is on counseling.

My clients have had issues ranging from chronic pain to general anxiety and panic disorder. I'm working with several couples on strengthening and enriching their marriages. And I seem to be developing a specialty with high school and college students who need help managing stress and anxiety in this world of pressures that my generation never had to face. 

I accept most insurance plans and am contracted as a preferred provider with Cigna and United Healthcare/Optum. My schedule is happily filling up, and I have even managed to successfully submit claims electronically and receive payments from both companies. (For those who have not worked with insurance from the provider side: this is quite a feat!) I also work with Open Path for uninsured and underinsured clients, and I happily accept private pay clients as well. 

Last week marked the four-year anniversary of my hospital homecoming. Everyday, with every step I take, I'm reminded of all that was taken away from me and of all the things I can't do anymore. But this. This is something that's been given to me. 

My job reminds me of how blessed I am. I can still listen. Be present with a person. Grieve with a person. Calm anxieties, increase self esteem, help people make changes in their lives. In short, I can help a client reach his/her full potential. Now that I can do. After my illness, God not only left me with the ability to be a counselor, he left me better equipped to be the counselor I had dreamed of being.

God makes good of all things. Indeed. 

Every day I get the honor of knowing someone deeply; and, as I earn their trust, clients often share things with me that have never before crossed their lips. I get to see the world from new and different perspectives. I learn at least as much from my clients as they learn from me. I step outside of myself and whatever struggles I might be dealing with that day. I change the channel from the endlessly looped list of my own worries and stressors, to my client's channel, whatever it may be that day. Oftentimes I'll sit down, and the next time I look up, it will have been over SIX hours! Time flies when you love what you do. On top of that, I almost always wish I could stay at the office longer. But when the clock strikes dinnertime, working moms of five turn into pumpkins. (Wait, wrong fantasy world…)

When a client session comes to an end, I often marvel (get it, Marvel?) when someone pulls out their checkbook to take care of their copay. All this, and I get paid to do it! I feel so good when I can hand Brook a little pile of checks at the end of the week. I'm starting to do my part! Oh that feels good. Dreams really do come true.

And God makes good of all things. Indeed.

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Update

Anybody out there wondering how I am doing? (Aside from my husband's string of comedic updates on social media?) 

I have not blogged in months. Months! My excuse? I've been busy.

Now, it is normally a big pet peeve of mine when people say they've been "busy." (I've often been the person standing in line at Starbucks behind the lady saying, “Oh, I’ve just been so busy.” As if busy was code for “important.” She goes on complaining - in this case humble bragging - she has just been promoted at work, she'll be managing hundreds of employees, little Johnny has started practicing for his traveling soccer team; and she has to balance all of this with Katie’s ice skating career, which is really taking off! The conversation goes on to sound like a Christmas letter of the worst kind. All because the speaker is just so "busy!")

But in this case I truly tell you that I've been busy out of sheer delight because all the things that are making me busy are positive things! No surgeries, no devastating doctor's appointments, no prosthetics that are broken beyond repair. With a little fear that I am tempting fate by saying this, I want to report that I finally feel like I have hit a marvelous plateau and sense of “normalcy.”

In my case, I say I am busy with a huge sense of gratitude. I am still sort of amazed that I am driving carpool and making dinner for my family. I've always been given a “pass” when it comes to contributing to the church potluck or bringing an appetizer to a dinner party. Well, I am excited to report that last weekend I brought a (very simple, but time-consuming for me) pasta salad to the covered dish lunch at church. All the other ladies simply slipped their dish into the church kitchen before service and called it a day.

But don't think I didn't loudly and proudly plop mine in there so that everyone would notice. I did everything I could to draw attention my way, announcing: “Here's MY pasta salad! Where shall I put it?” When no heads turned, I cleared my throat and repeated loudly: “Here's MY pasta salad! Where shall I put it?”  

I definitely mentioned to some folks in the lunch line that my pasta salad was “further down the banquet table, so you should save room on your plate.” You could even hear me humbly bragging and fishing for compliments: “My pasta salad was edible, huh?” I even received the best compliment of all - I was asked if we could use what was left over for the funeral reception that would take place the following day. “Of course,” I said. “It was just something I threw together. I've been so busy.”

In short, I am overjoyed when I tell you that our household is crazy and chaotic and busy - just like any other family of seven!

Conquering everyday feats is becoming more and more common for me. In fact, I often forget to notice them. Or feel grateful for them. Or, most importantly, give myself props for them. From time to time (OK, most days), I get overwhelmed by my full plate and tend to focus on how long things take, how slow I am, how messy the house is, and all the things I still can't do. 

But I am doing things now that I never would have thought possible! I truly am living a more normal life than I ever imagined - so if you see me around some day soon, say, “Kristan, did you ever think you'd be able to… Grocery shop, volunteer at school, hold down the fort while Brook went out of town, hold down a job, fly to New York at the drop of a hat?” Remind me how lucky I am.

And that, all things considered, my update is that I am doing pretty great.

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Back to Work

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Back to Work

Plans. Ha.

My husband and I had plans. Brook would continue working as an insurance executive. I’d stay home with the kids until the twins went to kindergarten, at which point I'd go back to work 25 hours or so a week as a Licensed Professional Counselor. I'd then be able to contribute to our monthly budget, AND we'd be able to save for college. Ha.

Ha. Ha. Ha. That's God giggling.

Then Jeannie Bean came along. Not planned.  (Though embraced.)

New plan: I'd stay at home with the kids for four or five more years, then I'd go back to work. Secretly, I was thrilled. I love babies, and I loved staying home with my babies. I knew that not everyone gets to stay home with their babies, but Brook and I had vowed to make it work for as long as we could.

Then God called Brook to be a Lutheran Pastor. Not planned. So we made a new plan: Brook would continue working full-time as an insurance executive while going to a distance education program at Luther Seminary until it was time to do his one-year internship, at which point he'd quit his day job and dive fully into seminary. One year later, he'd be a full-time, full-fledged pastor. Somewhere in there, I'd go back to work full-time as a Licensed Professional Counselor.

Ok, life just got a bit harder. But Brook would be fulfilled and happy as a pastor. We'd be fulfilling God's plan. It was a new plan, but we still had a plan. We could do this. Ha.

Ha. Ha. Ha. That was God giggling again.

Then catastrophe hit. Suddenly, I got so sick that I almost died. By a miracle, I lived. But my hands and feet did not. Both hands were amputated below the elbow. One leg was amputated below the knee. I got to keep the other leg, but that foot was ”compromised,” meaning that I lost my toes and part of my heel. That heel would never fully heal, so it caused all kinds of problems and and all kinds of pain.

Plan? Umm…

Could I take care of myself? Could I take care of the kids? Could Brook continue to follow his dream (and, more importantly, God's call) of becoming a pastor? Could I work? How could we pay for our medical bills and prosthetics? Moreover, how could we support our family? How could we (financially and physically) get dinner on the table? How can we take care of the kids?

Plans? Umm…

Our family, friends, church, community, even strangers chipped in and not only got dinner on the table but they also raised a ton of money to pay for my medical bills and some pretty amazing prosthetics. With God's help, I recovered. I worked hard, and I figured out how to (mostly) take care of myself and the kids. Brook worked extremely hard, all the while taking care of me and the kids. He graduated from seminary! He got called to an amazing, local church. So, he does get to be a pastor after all! And we don't even have to move, so our family and community can continue to put their arms around us and help us take care of the kids and get dinner on the table!

Brook’s salary will cover most of our expenses. But, because I had been a stay-at-home mom when I got sick, I did not qualify for social security/disability pay. This could/should be a whole different blog post, op-ed, and fight against the federal government. But who has time or energy for that? We're choosing to face forward and remain positive.

But what's our plan?  Umm…

Can I physically and logistically handle taking care of the kids and holding down a job? Definitely not full-time, but possibly part-time. Can I make enough money to fill the gap between what Brook earns and the family needs? Will anyone hire me? Do I have something to give this world?

Damn right, I do.

I have an amazing education. I'm intelligent. I have a passion for helping people, and I'm good at it. I have a purpose. I've been through hell, and I'm living to tell about it. I have a message to spread. I'm a great speaker. And I'm a great counselor. I can do this.

Ever since I got sick, (once I could get out of the house and walk to a podium,) I've been speaking to groups of all sizes. I've been shouting my hope and joy at all types of events, everything from corporate to Christian. I've built a bit of a business in motivational and inspirational speaking. Now that I've done so much of the hard work in the process of healing, I'm ready to help people on an individual level as well. I've helped new amputees through the tough parts of healing on a volunteer basis. But I've missed counseling as a career.

I've kept up my industry knowledge, my skills, and my licensure as a counselor such that I'm completely qualified and capable to work as a counselor.

But, like many moms out there, I've been out of the work force for a number of years.

I've been extremely lucky that Brook has always earned enough and has been willing to join me in a lean lifestyle so that I've been able to stay home with our kids up until now.  The promise and the expectation has always been for me to contribute to our bottom line once the kids were in elementary school. 

Whether or not I have a disability, it is time for me to go back to work. I no longer have this “choice” in the matter; we now need two incomes to make ends meet. Unless I work, we cannot pay our mortgage, our medical bills, or our grocery bills (even at my favorite store in the world, Aldi).

I've adored those (many) hours and days of snuggling my (many) babies. But I've also missed the sense of efficacy and accomplishment, satisfaction, and adult conversations that working brings. Most of all though, I've missed using my natural leanings, intellect, and professional skills to help people.

All through my years as a stay-at-home mom, I've retained my licensure just so I'd be ready when the time was right to go back to work. And I am ready. Except I'm missing just a couple of substantial tools — I'm missing hands. They come in “handy” when filling out the necessary paperwork, taking case notes, and presenting myself as capable.

Still … I can do this.

Let's talk about the specifics: I want to keep speaking and spreading my story of miracles and hope. But I also want to fulfill a dream I've had for twenty years -- to open a private practice for therapy and counseling. Maybe not with a full case load. That was never the dream anyway. I want just enough clients to fill my heart and bring home a living. But not so many that I'm too stressed to simultaneously take care of myself and my family.

This won't be easy. It would be a big feat for anyone to master, let alone a quadruple amputee!

Still, if I can beat sepsis, learn to walk again, climb to the top of a rock wall, travel across the country, downhill ski, paddle board, and ride a bike along Lake Tahoe, I CAN do this. And I'll picture all of these things as I plunge back into the workforce. 

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amputee rock climbing
amputee traveling
amputee skiing
amputee paddle boarding
amputee kayaking
amputee biking

I can DO this!

So, yes! I'm headed back to work. I'll continue to speak to larger groups, but now I'll also be working with individuals on facing their own challenges and difficulties. I'll be subletting a friend/colleague's office, and it's located exactly where I'd want it to be – downtown Matthews.

As of August 1st, "Kristan Seaford, LPC" is open for business! Which is simultaneously exciting, exhilarating, and terrifying, 

Please pray for me to attract enough clients, to help people and contribute to society, to adequately care for myself and my family, and to join my husband in financially supporting my family. Here I go.

To express an interest in individual, couples, or family counseling, click here

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No Barriers - Recap

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No Barriers - Recap

Hmmm...As I sit here a week after returning from my trip to the No Barriers Summit (it has taken me this long to recover from jet lag and the chaos that is called the last week of school in a house with five kids), I have so much to recount and so many conclusions I've drawn. But I have no idea where to start...

 So, the beginning seems like a good place, right?

The flights out to CA were as uneventful as things get for a family with a disabled mom and five kids on their first airplane rides. Meaning that our day of travel was hilarious, to an outsider. We must have looked like a gaggle of geese, each with our own rolling suitcase. 

At the Charlotte airport, the kids delightedly turned circles, in awe of all the unfamiliar people, sites and sounds. (Except for 14-year-old Ben who was already a travel expert and practically bored after his one-way flight to Ohio a few summers back.) Even our firecracker of a four-year-old, Jeannie, glued herself to my side for most of the time.

Yes, there was excitement (and questions flying) in the air among the Seafords. As we walked down the aisle of the cabin in the plane, Brook and I just kept making eye contact with our fellow passengers, smiling and apologizing, smiling and apologizing. We imagined that the other passengers must be gritting their teeth and wishing they'd taken an earlier or a later flight. To them, the bus system must have been looking better and better. Or at least quieter! 

But truthfully, everyone was incredibly gracious and understanding of our chaotic crowd, even when there were more than seven spats over who was sitting next to Jeannie. (I was not innocent in this department - I just wanted to see her reaction when we actually left the ground, OK?) Even the flight attendants offered us mercy - in the way of continually feeding my husband Brook free biscotti and bloody mary's.

Jeannie was wide-eyed and mesmerized at take-off, yet I was dismayed at how quickly she was “done with that show;” she wanted to shut her window shade and play on my iPad. I kept trying to divert her attention to all she could see out the window, but she kept returning to the topics of her next snack, lollipop, or dollar-store prize. Unbelievable.

We had a few blips with connecting flights not leaving enough time for meals; but luckily I had stocked my back pack with granola bars and gummy bears, so we made it to Lake Tahoe without a child fainting from pangs of hunger and thirst.

Yay! We made it Tahoe! And we began to meet some folks who didn't look like the majority of the population. Walking sticks for visual impairments, ASL interpreters for hearing loss, prosthetics, and wheelchairs all became commonplace. But my kids were much more impressed by all the service dogs, who they all knew by name within minutes. Our favorite dog of the weekend, Potter, was a yellow lab who could carry groceries, open doors, and (best of all) take his owner's socks and shoes on and off!

Almost as soon as we got to the resort, I met Sophia, my new seven-year-old hero with several prosthetics that fit on to her shorter arm. She chooses a different one each day, depending on her level of activity. Sophia even has a "sports arm" that she wears to play baseball, basketball, soccer, or to "cirque" practice. Yes, you read that correctly -  this little girl who was born without a hand participates in "Cirque De Soleil," specifically aerial dancing and acrobatics. I love her! She has no barriers to sports and no problem making quick friends with my girls. Her mom and I had an instant connection as well. I was going to LOVE this weekend!

And I did. Oh how I did. I think my eyes were opened wider to my surroundings than Jeannie's were when our airplane left the ground! And, a week later, I am still flying.

As I had hoped, I was able to participate in several adaptive adventure sports. I tried an adaptive bike (recumbent-style with hand brakes customized for my prosthetics) on a 15-mile trail that sidled along the Truckee River. I climbed on a rock wall, an activity I'd tried before. But this time I summited the wall, and I gloriously rang the bell at the top!

I kayaked and canoed; and then I surprised even myself by standing on a paddleboard and paddling on Lake Donner. (Praise be to God that I didn't spill into that ice-cold water like my older kids did!)

After three years of obstacle after obstacle, words can't describe what it was like to cycle, paddle, and climb without barriers again. Exhilaration! Laughter! Fear! Gratitude! Reward! Joy! Yes, I experienced all of those! I was amazed that after all this time my muscles remembered what it felt like to have two hands and two feet again! Not only was I able to do the sports I used to do, but I also found myself trying things that I never had before. I was taking more risks, not less; and I felt more confidence in my abilities than ever before. On several different occasions I actually forgot that I was disabled. 

I've had the opportunity now to see a few pictures and videos of myself from last weekend. Interestingly, I was almost surprised to see the adaptations, equipment, and people that were assisting and allowing me to cycle, paddle, climb, and move. Because, in the moment, all I'd felt was able! Those adaptations were merely part of me.

Even though I noticed all the help I required, I didn't consider myself "less than," "dis-abled" or "unwhole." Instead, I felt stronger! I knew that, with my team, I could do anything. And I am eager to discover what adventure awaits!

My experience at the No Barriers Summit left me forever changed. But, even more than the adventure sports, it was the personal connections I made that proved to be the most defining of moments. My family and I, we met the coolest, most inspiring people! Paralympic athletes, singers and songwriters, artists and innovators. 

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We met people like Sarah Herron, the first contestant with a disability to compete on The Bachelor, who now spearheads a nonprofit that builds self-confidence in young girls with disabilities.

We heard amazing speakers like Marlee Matlin, the beautiful actress who stars in the show "Switched at Birth" and won an Oscar for her work on the movie Children of a Lesser God.

Then there was Liz Murray, the author of Homeless to Harvard, her memoir about spending her high school years living on the street but breaking barriers to achieve great things despite the economic, educational, and cultural differences she faced.

And, of course, I need to mention the founder of No Barriers, Eric Weihenmayer(I got to have breakfast with this amazing man!) Several years ago, this born adventurer wrote a book about his experience as being the first blind man to summit Mount Everest.

His latest book, No Barriers, chronicles his days as the first to solo kayak through the Grand Canyon. He is a quick-witted gentleman who makes everyone in the room feel like their own "barriers" are mere mirage - when Eric is in the room, obstacles disappear.

The Seaford Seven also heard performers like Mandy Harvey. You may know her as the winner of last week's America's Got Talent! She's a deaf singer who takes her shoes off to feel the vibrations and "hears" the tones that help her sing on pitch and in time. The band X Ambassadors played as well; Ben had (of course) heard their music before; and, for about an “instant,” being with his family was cool enough to post on social media. We had arrived!!!

We met people who recognize "No Barriers" standing in the way of their dreams. Because, like the motto claims, "what's within you is stronger than what's standing in your way." Not everyone at the conference was "disabled." Some people and corporations attended for the sheer inspiration the weekend provided. Most were there to financially, physically, or emotionally support some person or group who is disabled. But all attendees were there to live a life without barriers.

Cabinets to Go was the corporate sponsor who donated the funds to bring my whole family to the Summit. A national company, they sponsored one person (or one family, as in our case), to travel to the conference. We had breakfast with the attendees representing Cabinets-to-go, and they thanked us for coming jusr as greatly and just as often as we thanked them. Their generosity and compassion was truly humbling.

An entirely unexpected result of our trip was what No Barriers did for our family unit. Yes, it helped my children learn to accept and interact with all sorts of people from all walks of life. Yes, it celebrated my kids' adventurous spirits and their courage in untried and unproven activities like archery, kayaking, and paddleboarding - even trying new foods! And yes, it increased my kids' self-confidence as they talked to new people of all ages, ethnicities, and abilities.

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But the No Barriers Summit weekend also changed the culture in my family to that of a team! We worked together to find gate C6 in Phoenix, to keep each other's attitudes in check when we hungrily awaited the extremely late shuttle bus to the hotel, and to plan our days so that everyone got to do an activity they enjoyed. Before I knew it, I was commenting to Brook that the kids were all playing well, together!, in the pool. They didn't fight over who sat together on the flight home. And don't tell anyone this; but Caroline's head exhaustedly fell onto Ben's shoulder on the car ride home from the airport. (Don't worry: they are back to fighting like cats and dogs.)

Even before our weekend in California, I knew that my family could survive all kinds of trauma. But, for three years now, (ever since I got sepsis), we've been operating with an underlying tension in our family, always looking over our shoulders for the next trauma to hit. There was grief and healing that had yet to occur.

The No Barriers Summit taught us that, together, we can not only survive after a trauma, but thrive. Collectively, we've learned to let go, relax, take risks, trust, help others, and have fun together. We're looking forward to the next adventure that life will offer.

The point is (and perhaps this is the point) that our family unit is stronger than anything that may come in our way.  With organizations like No Barriers, and with inspiring heroes like Sophia, Marlee Matlin, Mandy Harvey, and Eric Weihenmayer to inspire me and show me the way, I am stronger than my amputations. With innovators like Ottobock Prosthetics, Adventure Sports, Cycledifferent and more, we come away stronger than whatever’s in our way! And with nonprofits and foundations like No Barriers, people with disabilities like mine are encouraged and underwritten to have amazing experiences like this one as well as my ski trip with Adaptive Sports Association in Durango, Colorado, as well as my First Cycle, First Swim, First Dance, and First Climb experiences through OPAF (Orthotic and Prosthetic Activities Foundation). See my blog posts, "Independence" and "I Am A Skier".

What a weekend, what a trip.

Thank you, Cabinets-To-Go. And thank you, No Barriers.

** If you would like to donate or to co-sponsor a participant for the 2018 No Barriers Summit (in New York City!), click here.

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No Barriers

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No Barriers

Several months ago, I discovered an organization called No Barriers, whose tagline has now become my mantra and part of my email signature –

"What's within you is stronger than what’s in your way."

No Barriers is based on the idea that, for people with all sorts of abilities, participating in and conquering adventure sports increases self-efficacy and self-esteem. By offering over 50 adaptive adventure sports for people with disabilities, they empower people to break through their barriers, find their inner purpose, and contribute their very best to this world.

No Barriers' biggest event each year is called The Summit. They invite people with disabilities to come to a place of beauty and adventure. The locale changes each year, but this year it's in Lake Tahoe, California.

 On their website, The Summit is described and promoted as follows:

 "At the 4-day No Barriers Summit, you’ll be embraced by a community that knows what’s within you is stronger than what’s in your way. There will be speakers who ignite your passion, innovations that push your perceptions, and activities that shatter barriers...with a supportive community to help you along the way.

As many know, I have been trying to build a business of public and motivational speaking. So, I decided to 'shoot for the moon' and apply to be one of their speakers.

With high hopes, I sent an email to a mutual friend to introduce myself, as well as send a link to my website and speaking samples. Unfortunately, the event planner wrote back with the news that they had already lined up the speakers for this year's Summit. 

However, this event planner was incredibly helpful with constructive ideas for improving my skills, target audiences, industry contacts, and promotional materials. She also said that I should definitely attend the event, even bring my whole family! She just knew we would love it and be forever changed by it.

"Ha! Ha!" I thought. "Like we could ever afford for me to go, let alone bring my whole family." In what I thought was a pretty snarky and sarcastic tone, I replied to her email with the question,

"Do you have scholarships for stay-at-home moms from suburbia, North Carolina?"

 "Yes;" she wrote, "actually, we do!" And she included a link to the application.

"What?!?!... Seriously?!?! I was really sort of kidding!" I thought.

But, of course, I applied. Maintaining my "shoot for the moon" idea, I applied for a full, all-expenses paid, (even all the adventure sports!), trip for my entire family of seven.

It was a pretty extensive application process - reference letters from friends, colleagues, and doctors; essays, photographs, pay stubs (the scholarships are need-based in addition to the other qualifying factors), and a link to my web site and blog. Honestly, I was a bit overwhelmed by it all, and I knew that getting the full scholarship was a long shot.

Regardless of my low chances, I applied.  And the waiting game was on.

But then I had a lengthy phone conversation with the director of development; and she explained that there are actually some extremely generous donors who love to sponsor whole families! I couldn't imagine this level of generosity; but I sure was moved by it.

The sweet, kind, development director told me a story of the first time she attended the event. She herself is blind. And she had grown accustomed to vacations with her own family where she would sit on the beach and wave goodbye to her family as they would leave for a nice long walk (or any of the big vacation activities, for that matter). She had grown acccustomed to waiting around while everyone else got to participate. She explained how, on the No Barriers trip; for the first time, she was the one participating while her kids sat back with eyes wide open at seeing her soar over all the barriers that had previously stood in her way.

After talking to her, I couldn't help but feel encouraged. And empowered. And hopeful.

"If we get to go," I thought,  "it will be the epic family adventure. Four of my kids have never even been on an airplane before, let alone gotten to see or do things like skiing, mountain biking, white water rafting, or kayaking. In Lake Tahoe of all places!!!"

And so I waited. And dreamed. And waited. And waited some more.

But, eventually, I was starting to look for the thin envelope in the mail - the one with the letter that would thank me for applying, tell me there were a record number of qualified applicants this year, and encourage me to apply again next year.

But then, it happened. I got the phone call. That call I'd been waiting for!

We won!!! We get to go!!!

I'm a bit embarrassed by my reaction. I must have sounded like a schoolgirl... But here's what I said:

"For real?"

"I mean, like, for real, for real?"

 She must have laughed out loud.

 But, it's  FOR REAL!

** Post Script: We leave tomorrow. It's a good thing that excitement and anticipation produce adrenaline and energy. Because I'll be up all night packing for myself and five kids! Check back here for details of my trip. Or just follow my husband on Facebook or Instagram...

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An Aldi Angel

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An Aldi Angel

Today I met an angel. At Aldi. It's true!

These things happen everyday, but sometimes, sometimes, they slap us so hard that we actually recognize them.

Today, I met an angel.

Let's back up a minute...

I have a lot of strengths. I am good at a lot of things. Driving is not one of them.

I take that back. I am a decent driver. I am just not a good parker. And this is nothing new. I was just as horrible when I had hands! Most of the time, it has more to do with my being distracted by children giggling, fighting, whining, or screaming. But my husband would say I'm just a little spacey.

You can tell this just by glancing at my van. There are so many scratches and dents that even my husband can't discern whether I've bumped or scraped the garage door again. (Bonus of an having an older vehicle!)

Suffice it to say that I "bump" things a lot.

However, today's "bump" was an unusual one. There may not be a new dent in my van, but I am forever changed.

It had been a typical Monday morning of running around with the kids. My older girls missed their bus, so I had to hurriedly drive them to school. I dropped Jeannie off at preschool (on time, for once); and I got Ben to his doctor's appointment (almost on time) to get the cast off his arm, just in time to receive the phone call that Maizie was sick and needed to be picked up. Tired yet?

With Maizie in tow, I raced in and out of Aldi, just in time to make it back to preschool for the one o'clock pickup. (Yup, it's still only one o'clock.)

angel at aldi

While inching out of my parking space, I had turned around to look out the rearview window. All coasts were clear.

But then, BUMP!

I felt it louder than I heard it. Nothing more than a little tap really. Still, it was enough to scare me! I made sure Maizie was ok (she was), then jumped out of my van to see this LITTLE car, so little in fact, that its size explained its invisibility from my rearview mirror. (I have to admit my great relief that I couldn't have avoided her). It reminded me of an old-school Datsun, and its condition made my car look like I had just driven it off the show room floor.

Driving this LITTLE car was a LITTLE lady who jumped out and walked around to check her car for dents as I shouted my apologies and asked if everyone was OK.

I, too, scanned her car for an extra ding or dent, but it was impossible to tell because her LITTLE car was nothing but dents and dings. (It's probably not worth mentioning, but I never did check my own van - maybe I should get on that...)

That's when she saw me, I mean really saw me, disabilities and prosthetics and all.

She raised her hand and told me to "Stay put!" while she pulled into a parking spot. Anxiously wondering what would happen next, I followed her command and waited.

She got out of her car and walked towards me with purpose. And that's when I really saw her.

The LITTLE lady wore a toboggan on this warm-ish Spring day and had bits of gray hair peeking out around her face. She had leathery, well-worn skin and dressed in an eclectic mix of well-worn clothes. The one thing that stood out to me was that her shirt had big lettering on the front. It was written three times, one on top of the other,

 LOVE
LOVE
LOVE

I have to admit, I was afraid. This LITTLE lady had a gleam in her eye. She was forming the words she wanted to say to me. I thought for a moment that she might yell at me to "watch where you're going!" Then yell that I had no business driving with fake hands and feet, that I was a danger to society and to the child I drove around...

But, instead, her face softened, she smiled, and she proclaimed,

"Go. Go with grace."

"What? Really?" Was all I could come up with.

"Yes." She replied. "I humbly tell you to go with grace. I am humbly honored to say to you 'Go with grace.' Just go."

"Well...thank you," I mustered.

I almost turned around, jumped in my car, and sped off before she could change her mind. But, almost in a trance, I was drawn to her.

"I can see that you have been through enough in your life without having to worry about my old car. Everything is forgiven."

She went on...

"I want you to know that God had no part in this."

Pointing to my leg, she continued, "He doesn't do this kind of thing out of punishment or anger. He only wants good things for you. He only wants you to have every gift imaginable."

This LITTLE lady had big things to say. She kept repeating for me to go, yet something wouldn't allow me to leave. She kept telling me she wanted me to have grace and mercy.

She wanted to assure me that she was "not doing this out of pity, for that is a whole different thing all together." Instead, she wanted to "extend mercy. They are two entirely different things," she says. "No one wants to feel pity. Child, I am humbly honored to meet you, to know you."

"You are amazing! Look at all you do, and you exude such joy! People see you, and their attitude immediately changes from complaining to just gratitude!"

"And I have a message for you. I am here to tell you to write your story. I know you have one."

This LITTLE lady was not the first to tell me that I need to write a book. And, don't get me wrong, I would LOVE to write a book. I've thought about it, and I've even started to write a book. Several times, in fact. But it is overwhelming, to say the least. I have trouble with basic life skills - grooming, showering, and dressing! How can I possibly make time to write a book? Plus, need I remind you that I don't have fingers?

The doubts abound! Even if I could physically write a book, with dictation apps and such, who would publish it? Agents are not banging on my door, to say the least. Hiring a book shepherd or choosing to self-publish cost thousands and thousands of dollars. Dollars that aren't covered by a pastor's salary! In fact, I need to get a job and be bringing money in to the budget, not taking money out, for heaven's sakes!

As if she could read my thoughts, the LITTLE lady takes me by the shoulders, looks me straight in the eyes, and says,

"God loves you. He only wants the best for you. But He wants you to share your story."

"I will," I promise.

"What is your name, dear child?"

I tell her, and she goes on,

"Kristan, I've had a hard life. Nothing to this level, but I know your story is powerful because you, Kristan, are powerful."

At that point I ask for her name, and she replies,

"My name is Love."

I smile, for this had to be a joke. 

"Yes," I say, "but what is your name? "

"Love is my name," she tries to convince.

I shrug and offer that I've always thought the words "God" and "love" could be used interchangeably.

She points to the word on her shirt, nods, and repeats, "My name is Love."

I tell "Love" that I had dreamed of writing a book and traveling around to share it, but that now I would definitely do it. I want to ask for more details (like how do I fund it!), but I also know that I am on a time crunch for preschool pickup. (Anyone who has ever had a child in preschool or daycare knows that you can not be late for pickup!)

"Love" then repeated, "Write your book. Spread this story. You have to tell people. Promise me you'll write that book. It will be big. It will be like Big Mike, that movie with Sandra Bullock!"

I smile and shrug again with nervous laughter, "Sure."

Again - "You need to speak, Kristan, go all over the country doing speeches, tell your story."

(Mind you, she couldn't even have known my story. For all she knew, I had lost my limbs trying to bomb a daycare!)

She sees Maizie and comments, "And you have a child! Through all of this, you are raising a beautiful child! I can take one look at her and know how happy she is!"

If only she knew that I actually had not one, but five children! But she never asked, and she never wondered aloud (like most people do), "what happened?"

This is when I just had to leave - it was past one o'clock already. The director of our preschool is an angel herself, and I knew she wouldn't mind my being a few minutes late; but still, I could not take advantage of her kindness.

I wanted to talk to LOVE more. I felt torn; but, in the end, I had to go pick up my baby girl.

So I hugged her, thanked her one last time for her kindness, and said goodbye.

Maizie, my eight-year-old, somewhat anxious child, was mesmerized. As we got back into the car, I was predicting that Maizie would soon burst into tears and tell me she was terrified.

But, no. Maizie was calm and collected.

"Gosh Mom, that lady was nice! Don't you think? She didn't even call the cops on you, and then she was just so....nice!"

When I got to Jeannie's school, I hugged her extra tight. And I plopped onto the chair in the office of Miss Tara, the preschool director. I must have looked pale as a ghost; and, by this point, tears were streaming down my face.

"What's wrong?" Miss Tara worried.

But then I told her that I had (literally) run in to "Love."

"You met an angel, Kristan!" she exclaimed. "Today, you met an angel!"

If anyone would know an angel when she saw one, it would be Miss Tara.

So, yes. I met an angel.

I know this story is unbelievable. It sounds crazy. Had you been there, you might have thought that "LOVE" was delusional, or that "LOVE" was my delusion.

But I have never witnessed something so real.

Still, I know that many will shake their heads and dismiss my story. Some will laugh out of nervousness and discomfort with the topic.

My own husband, a soon-to-be-pastor, was not particularly moved by my telling of it either. (His attention to the story ended with his relief that I wasn't getting punished for bumping Love's car!)

Even my Bible Study Class's reaction was mixed. Some shook their heads and turned immediately back to our course material, as if they were two unrelated topics. However, a few did believe that it was a "God moment" and that I should follow the command to write my book.

One woman was excited and smiled with pride, "Kristan, I think you have the beginning of your book."

Yes. Yes, I do.

And yet, I could have gone on with my day and my life, dismissing "Love" as just another crazy person I'd met at Aldi (believe it or not, there have been many).

But I didn't.

Today, I heard "Love"'s message, loud and clear. But I am fairly certain that there have been other occasions where I've ignored or dismissed people and things that were speaking to me. Have you?

What is the dream you've been putting off for someday? What is your "book"? 

Tell me. I'd love to hear from you.

In the meantime, I'll be writing my book.

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Stockings, Blessings, and a Christmas Kiss

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Stockings, Blessings, and a Christmas Kiss

This morning I visited the dollar store to gather all the candy, small toys (my husband Brook so generously calls these items,"landfill"), school/craft supplies (more landfill) toiletries, and other treats that I love to buy to stuff the stockings for five kids, one husband, and (this year) one cat. What fun!

The items flew easily off the shelves and into my cart with superhero speed! Time passed all too quickly, and a glance at my watch told me that it had been over an hour since I'd arrived. I knew I had to hurry if I was going to accomplish all my planned tasks on this last school day before winter break! My cart and my heart were FULL as I imagined the looks of surprise, joy, and glee on the faces of my family next week.

Time to head to the checkout! Unfortunately, my euphoria came to a halt as I attempted to transfer my purchases from the cart to the rolling checkout counter. Physically, logistically, and financially, my purchases had suddenly become more difficult to handle. There was a fairly long line of customers behind me, and I was all too aware of how long the process took when using robotic, prosthetic hands.

Consider my task at "hand":
1) Open hand.
2) Place hand over the bag of candy or trinkets.
3) Close hand lightly around it, careful not to smoosh the M&M's or cheaply made toy.
4) Pick up hand, hoping that the stocking stuffer was attached.
5) Hold hand over the scanner and open it. Exhale with relief that I hadn't inadvertently dropped said item back into the cart or onto the floor.
6) Celebrate that I'd successfully transferred an item.
7) Repeat above process with the other >100 stocking stuffers.

I smiled lightly at the sweet lady who was the next customer in line, tacitly apologizing for how long this process was taking and how much of her Christmas shopping time I was eating. But, instead of being annoyed with me, she kindly and graciously offered to help! And I knew she was doing this from a genuine place of goodwill to men (or women, as the case may be).

Thankfully, I often receive such offers when I am grocery shopping, etc. But I am not naive. I know that some of the people who help me at the time of checkout are merely expediting the checkout process for themselves.

Every single time I shop, I am aware of how other shoppers notice my struggling with the checkout process, not only of putting my items on the countertop but also of retrieving my debit card from my purse, sliding it through the card reader (or more recently pushing it into the chip reader - yet another new thing I've learned), and finally entering my debit code or signing my name. Sometimes my prosthetic fingers are recognized by the touch screens; but more often they are not. In these cases, I am forced to use my elbow or the stylus pen provided, another lengthy process all its own.

I usually try to reassure people that it is harder for them to watch me struggle than it is for me to struggle. Many kind people must suppress an enormous urge to reach out with their own hand and do this whole process for me - to take away my struggles, if only for that one moment. My heart goes out to them; it truly does. The whole debacle just makes it awkward for everyone involved...

But I digress...Back to my story.

The sweet lady behind me, let's call her "Beatrice," was actively and authentically helping me. But the rest of the people in line were not quite so patient - they were using their hands and feet to tap their watches or their toes. At this point, I felt the need to explain that I was filling stockings for five kids, not just spoiling one or two. I thought this might somehow make it less annoying that I was also "deciding against" items here and there, trying to remember that we are on a "pastor budget" these days, and attempting to keep things "fair and even" between each child and their bounty. 

But you'll never believe what happened next:

Beatrice gracefully swept the things that I had set aside back into the pile of items to be purchased. She looked into my eyes and told me I was a blessing to her. She quietly told me not to worry about the items I'd set aside because she'd be paying for my whole order!!! And she softly said, "You just go home and take care of those babies. I'll take care of this."

I tried to argue, but she'd have nothing of that. With tears in my eyes, I thanked her and hugged her. I told her what an incredible blessing she was to me and my family this Christmas!

What an incredibly generous gift Beatrice gave my family. I can only imagine the expressions of surprise and delight that will appear on my kids' faces this Christmas morning! Oh, what a blessing!

When I returned home, the first thing my husband did was ask me who I'd been kissing! "What?" I asked. I thought maybe he was referring to the way I was glowing with joy. But, as it turned out, when Beatrice and I hugged, she had left a little reminder of her gift that morning. A simple kiss.

Who has kissed you this Christmas season? How will you kiss, or bless, someone else's life? I challenge you to take away someone's worries, be it through a warm smile given to the cashier in Walmart, a financial gift, or just taking something from their plate of burdens. Be that blessing in someone else's life, just like Beatrice was in mine.

I hope you have a merry Christmas, and blessed New Year.

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Amputee Humor

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Amputee Humor

WARNING: Brash generalization coming…amputees are hilarious people. 

If you don't believe me, check out these t-shirts.

Or better yet, check out this web site of amputee humor, complete with some great Halloween costume ideas.

There are plenty of comedians and comediennes who use their disabilities as their main source of material. And amputees are no exception. 

But the normal Joe amputee is just as funny. My theory is that many of us use humor as a coping mechanism. If we make the joke, we can ensure that people don't laugh at us, but rather with us.

It’s either that or it’s just that our lives are so stinkin’ weird; they are funny! We all have random arms and legs strewn across our homes, for goodness sakes! Weird. Funny!

I picked up on this "amputee humor" pretty quickly after becoming an amputee.  In fact, one of the first pieces of advice I got from another bilateral upper body amputee (missing both hands) was to "drink white wine instead of red." (It's easier to clean up when it spills) I knew there was a good reason to drink white...

I quickly came to agree with amputees that you gotta laugh - if we can't laugh at ourselves, we're not going to make it very far.

One of my recent Friday afternoon's FaceBook posts is a great illustration: 

"Funny story. I literally had just made it to the (Harris) Teeter checkout line, and my hand (literally) died as it was wrapped around the handle of the grocery cart. The cashier AND two baggers had to hold the cart still so that I could yank my hand off of the cart! The best part of the story is that I just continued to check out because I really needed the bottle of wine that was in the cart."

It was no exaggeration when, on my forty-first birthday, I mentioned that, in the previous year, I had gotten stuck to three grocery carts and five minivan doors when my "hands" malfunctioned.

Sometimes my humor is a little dark. If you don't know me, it might catch you off guard. You might not know how to react. 

Example: If you accidentally use some figurative or colloquial language like, “Oh, can I carry something for you, Kristan? Do you need a hand?” I might respond with, “Actually, I need two. Do you have any extras laying around?”

That’s a little mean of me, I know. It’s dark. And some people’s eyes grow big; and try to swallow their tongue. Let me have my fun. Laugh.

You just HAVE to laugh when you are at the neighborhood pool, and suddenly you realize that you have no way to pick your wedgie out, because you don't have hands!

You have to laugh when you find yourself late for a dentist appointment because you can't find your hand! It's a bit hard to drive one-handed - it's not like with a bike, when you wave your arm, and yell, "Look, Ma! No Hands!)

It is just impossible to keep a straight face when you are roaming around your house, asking everyone if they have "seen your hand!"  But the funniest moment of all is when you have to explain to the dentist that you couldn't arrive promptly because you couldn't drive, because you only had one hand, because you couldn't find your other one, until finally you came across it in your sock drawer. Really.

And then there is the day that you are teaching a step aerobics class at the YMCA, and your prosthetic hand FLIES off your arm! When your arm gets sweaty, the prosthetic tends to slip off. You know this, but one day, you get carried away and forcefully move your arms up and down. (the more muscles you use, the more calories you burn, right?) That's when your arm slips off and SAILS across the room, almost hitting your favorite class member! You can't make this stuff up!!!

On another occasion I was team-teaching with one of my favorite instructors, and we had a bit of a snafu ourselves! We had just finished working our abdominal muscles, so I was laying down on a mat. At the end of our set, she stood up and went to give me a hand, to help me stand up. Well, I knew that my arms were a bit sweaty; but I just instinctively gave her my hand. As she grasped my hand and gave it a tug, she got more than she had bargained for. She stood there, holding my entire (prosthetic) arm in hers, and she gasped, "What do I do?" All I could say, and all I could do, was "Laugh!" 

A good belly laugh. There is nothing prosthetic or fake about that.

*If you are an amputee and are reading this blog post, please post your favorite amputee story in the “comment” section. I wanna hear it!

**If you are a “normal” person (whatever that is), keep laughing with us! It’s OK! You’re allowed. Laugh at our dark humor. Chuckle at our jokes. Help us cope. We need all the help we can get.

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Happy Birthday, Bean!

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Happy Birthday, Bean!

Jeannie turned FOUR YEARS OLD this week! And this girl was celebrated! Isn't there a Bernstein Bears' book entitled Too Much Birthday? Well...we were close. So many people love this girl; it is hard not to overdo. While she did not have the requisite bouncy house party with her friends, she had no less than four parties. The family sang to her and cut four different cakes (two of which were made by her big sister, Caroline wanted me to mention).

My personal favorite was an impromptu party for two that happened several days before the others. After a whole morning at the prosthetic clinic, I decided Jeannie deserved a cookie for her patience and good behavior. So we walked next door to Sunflour Bakery, which just happens to be the best one in town; and I told her to pick anything she wanted from the pastry display (it had been a long appointment). She chose a chocolate sprinkled cupcake; and, then I put it together that her birthday was only five days away!

So I decided that, instead of taking her cookies "to go" and letting her add to the crumbs in the car, we would sit down and celebrate! After a lot of help and even more mess, we had our little party; and I sang to her sparkly eyes and great big smile.

I even went to the trouble of taking off my prosthetic so I could attempt to take her picture! Which snapped just a millisecond before I dropped my camera in the middle of my cupcake. It was a good belly laugh for us both...I guess you had to be there.

It was not lost on me that these special moments of her birthday couldn't have happened in years' past. On Jeannie's third birthday, I wouldn't have dared to take Jeannie out somewhere by myself; I wouldn't have been able to trust that she would stay with me. And a year ago, I did not have the finer motor skills to handle my own food, let alone Jeannie's cupcake.

This is hard to put in print, and it would be even harder to say out loud: But on her second birthday, Jeannie did not accept me as her mommy. She was still a bit wary of me, and she would never have gotten in the car with me, unless her dad or a sibling were with us. She would have pushed me away and yelled if I tried to sing Happy Birthday; I was hardly permitted to attend her party.  

Jeannie's first birthday, of course, was just like any other day -- she was the center of my attention; I just baked her a cake, too. Though her first birthday was a true gift, I didn't recognize it for the blessing that it was. Like so many things back then, I took for granted the ease with which I baked a cake, probably with her on my hip and my phone stuck to my ear. I just expected that she'd look in my eyes and reciprocate the adoration I felt for her. Like I said, it was just like any other day...

But now my girl is FOUR, and I am grateful to my core for all the blessings of the day.

It feels like yesterday that I told Brook about this impossibility-- a baby growing inside me. The baby (Jeannie) has, on many occasions, been the glue that holds our family together. I've often commented that all the kids hate each other, but they all love Jeannie! And I've often referred to what Ben said when we finally got her home: we were all standing around the crib, and the kids were staring at Jeannie with amazement (none of them were allowed to touch her because they were all getting over, you guessed it, the flu). In the gentlest nine-year-old voice that Ben could muster, he thanked me for "finally giving him a sister he loved!" Which is quite possibly (and simultaneously), the sweetest and the meanest thing he's ever said. 

And now Jeannie has gone and turned four! 

She is proving to be the most challenging, intelligent, independent, resilient, resourceful, stubborn, sneaky, and sassy Seaford yet. (I don't know where she gets it.)

The big kids still dote on her; and they still fight over who gets to sit next to her in the car. I wonder each day, when is this unanimous adoration going to fade? When will the kids stop wanting to do anything and everything for her? 

As it stands, Lauren is still flattered if I ask her to be the one to get Jeannie dressed for the day or if I think she can be trusted to brush Jeannie's hair. Even Ben doesn't complain when he is asked to take charge of Jeannie.

The coveted "chore" each night is to be the one to brush Jeannie's teeth and put her to bed. But, what will happen when it's no longer a treat to read to Jeannie and kiss her goodnight?

Well, I'm starting to think it never will...

Jean-bean has become our family mascot - when she's ok, we're ok. Those tantrums? They reflect our family's inner rage at all that has happened in this sweet young child's life. (Let's be real: they reflect her three-year-old independent, mischievous self. But, it sounded good at the time.)

But truly, when the family seems to be falling apart-- when the house is in shambles, the kids are all fighting and yelling and screaming, Ben has escaped to his disaster of a room, I am still dressed in my gym clothes, from two days ago; when the girls' hair is tangled and mangled, we're all running in different direction, and Brook has lost his patience...when the lot of us is falling apart, seemingly to the point of no return...

There, is beautiful Jeannie, with the microphone she stole from that disastrous karaoke set that Santa brought a few years back. She's dancing and singing her little heart out. And we all know the words to her song, 

"Let it go... Let it go."

Happy Birthday, Jean-Bean!

 

 

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Firsts

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Firsts

Many of us moms have keepsake books for our babies' first year of life - we keep track of a baby's many "firsts."  Things like his first tooth or her first haircut. Soon enough, it's that precious first step and the first birthday party. 

Yet, there's another type of "first" that is usually not so joyful.

Those of us who have suffered tragic losses have kept track of things like the "first Christmas since...," the "first birthday, Mother's Day or Father's Day since...," or the "first vacation without her."  Then there is the first night in a lonely bed and the first time coming home to an empty house. Finally, we honor the first anniversary of his/her death.

The "firsts" surrounding our babies' births are usually sweet. The "firsts" surrounding a loss of life are mostly sad, or bitter.

My unexpected turn in life creates a more complicated type of "first" that is both bitter and sweet. Though I am still mourning the loss of my hands and feet, I am also rejoicing at the blessings of my "new" life, a life that was saved. And, while I hate that I can't do things the way I once did, the "firsts" that I experience are accomplishments and thus celebrations.

For example, going to the beach can be difficult for me because I can no longer enjoy an early morning run when my breaths and my footfalls match the back-and-forth cadence of the waves crashing on sand. The same sand that squished between my toes while the sun warmed my skin.

At the same time, I can now experience the beach with a newfound joy. I am incredibly grateful to smell the salty air and feel the majestic breeze as it blows through my hair. On my "first family vacation since...," I did not get to build sand castles. I sat and watched more. But I did build new family memories. And I also took my "first" walk on the beach. I took my husband's hand in mine, and I walked along the shore.


 

Once a year, The Amputee Coalition, a national organization that supports and advocates for amputees, holds an educational, experiential, and social meeting for amputees and those that care for us (prosthetists, physical therapists, and loved ones). It's called The Amputee Coalition Conference.

I've been told about these annual conferences again and again over the past two years. I've heard that they are "experiences of a lifetime" and that "you have to go at least once!"

The Amputee Coalition Conferences are held in go-to destination cities like Phoenix, Vegas, and Chicago, to name a few. While surfing the net, I discovered that the 2016 conference was scheduled to be held in Greensboro, North Carolina at the Sheraton!

Greensboro would not only be a convenient locale; it would be affordable! This was it! My time had come!

I registered early, partly to get the early-bird discount, but also to ensure that I wouldn't lose my nerve. It was fairly intimidating to jump into a new social arena; I'd always been a bit reserved, and that was when I had two feet!

I tried but failed to find a roommate so I could split the social, physical, and financial costs; but, in the end, I invited my eldest daughter Caroline to join me for the endeavor.  (See Road Trip.)

Accompanied by my nine-year-old sidekick who doubled as my personal assistant, I made the quick and blessedly uneventful hour and a half drive to Greensboro and arrived on schedule.

As we pulled in to the hotel parking lot, my daughter pointed and proclaimed, "Mom, there's an amputee! And there's another one! He has a prosthetic leg, just like you!" Stealing her thunder and degrading her observant comment, I told her, "Caroline, you're going to see a lot of 'them.'  It's an amputee conference!"

It was in that moment that, with tears in my eyes and a lump in my throat, I was convicted. And the evidence was obvious - I am one of 'them.' I am an amputee, and I belong here at this conference.

Oftentimes, this whole ordeal seems unreal to me. I'll wake up in the morning, fully expecting to look under the covers to see my hands and feet. But other times (like in this particular moment), it hits me. It slaps me in the face, actually. And I know, without a doubt, that I am an amputee.

The fact sunk in more and more over the course of the weekend. And it began to settle in my stomach rather than just lay there in a pit.

For the "first" time, I felt like I belonged to the group of people who call themselves "amputees." I shared more with them than what we were missing. 

I attended some incredibly interesting and relevant educational sessions - sessions about the body image struggles of an amputee, the grief process for an amputee, and the newly available technology that is improving our lives by the day.

Just as I had hoped, I made some great contacts at the conference, networking with folks who could help me professionally and personally. I went to a "welcome reception" for amputees from North Carolina, so I met some "locals" who are doing amazing things. In seeing all the great things that other amputees are doing, I became excited, inspired and hopeful about a future where I can help people of all different abilities through my speaking and writing.

In addition to business contacts, I also met some wonderful new girlfriends who "get" my everyday struggles and frustrations - some of which are universal and human, but many of which are complicated by this thing labeled "disability." These women can relate to the love/hate relationship I have with my prosthetics (and my prosthetists), the jealousy I feel towards people who are "able," and the corresponding guilt I have for feeling jealous at all.

My new friends share in the circle of grief that I am constantly traveling - one step forward and two steps back, in one direction or the other. And they understand how the ordinary things in life (getting or keeping a job, being a parent, driving a car) become extraordinary when you're disabled - extraordinary in difficulty but also in the feelings of pride in your accomplishment. Though I may not see these ladies until next year or even later, I know they'll be forever friends.

Perhaps the best part of the conference was that I got to try so many new things, as well as some old things that I tried in a whole new way. I would never have tried such things on my own; but, with this crowd, I felt as if anything was possible. I was surrounded, encouraged, supported, and challenged. 

We swam laps in the hotel pool, trained by an Olympic medalist who later became a Paralympic medalist when he lost his leg. 

We learned to line dance, mamba, shag, and even hula hoop!

We even took turns rock-climbing; the line of us wanting to give it a shot wrapped around the Sheraton Greensboro during a summer heatwave. 

amputee rock climbing

We weren't climbing walls to prove anything, either. We were simply having FUN, feeling normal. We laughed - with each other, at each other, and at ourselves. We swam, we walked, we danced. We ran, we climbed, we SOARED!

For the first time, I was proud to be called an "amputee."

It was my first Amputee Coalition Conference. Of many.

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Road Trip

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Road Trip

My inner geek's racing heart and sweating brow threatened to hold me back. I kept thinking we would get "caught" for leaving school early. But we had to get on the road if we wanted to avoid traffic. 

So, with a whispered chant of "I'm the mom, I'm allowed to do this," I marched right up that hill to the school office; and I signed that early dismissal form.

My daughter Caroline and I waved goodbye for the summer and broke out into a run for the car (ok, mine was more of a limping jog).

Windows down...Check.

Sunroof open...Check. 

Sunglasses on...Check.

Seat belts buckled...Check.

And radio blaring... Wait!!! No!!! Not on NPR!!!...

Radio blaring on 95.1 (the popular teen station- ugh), and we were FREE! AT LAST!

We were rebels! We were officially road-tripping! Just us! In my Duke-blue Honda Odyssey! The excitement of it all...the intrigue...the adventure...we were all on our own (meaning I only had one kid with me) We were on our way! All the way to...

Greensboro, North Carolina for The Amputee Coalition Conference!

Hey now, it was cool to us. Well, it was to me anyway. I was losing faith that my nine-year-old thought it was anywhere near cool.

After trying and failing to find a roommate to split costs, I had decided to invite my eldest daughter Caroline to join me for the voyage. The deal was that she would help me with my prosthetics and with showering in a hotel bathroom; in return, she would get to stay in a hotel room (why do kids love hotels so much?) and watch cable television, as well as order room service once or twice.

No child had ever accompanied me on a trip like this before, and there was much chatter, bragging, and jealous fighting heard among the troops. Suddenly, a weekend in Greensboro had become the trip of a lifetime, and Caroline was the lucky daughter that won the lottery.

You can guess what came next: All of my kids suddenly became Supreme Court Justices. This trip wasn't "fair!" Tough. 

The daydreams that danced in my head sounded something like this: What would my first Amputee Coalition Conference be like? What would I do there, and who would I meet? What new things would I learn? And what new products would I find?

Meanwhile, my daughter's thoughts and dreams probably sounded more like this: I wonder if I'll get my own bed? Is a "Sheraton" a nice hotel? I wonder what channels they get...Disney, I hope! Maybe even Nickelodeon? Will my mom let me stay up late and watch whatever I want? Hmmm...What's room service really like? Does a man in a tuxedo deliver it with a silver dome cover and then unveil it like on "Jesse" (Mom hates that show with a "heated passion," whatever that means.) Will room service deliver cheese burgers? Dessert? I wonder what they have for breakfast? Will my mom let me spend all this money?

As the miles traveled under our car and we got closer to our destination, our hopes only got higher. We sang and danced along with the radio. We enjoyed long, comfortable silences. And she suffered through a few of those longer, awkward, "birds and bees" talks that have to be reserved for when a tween is strapped down and doesn't have to make eye contact - she became my captive audience, and a gulping, gagging POTT (prisoner of "the talk"), not to be confused with a political POW (prisoner of war).

We finally arrived at the conference, and our "Mommy-Daughter" our dreams were fulfilled. Caroline got a double bed, all to herself! To her, the Sheraton was a five-star hotel. They had cable, so she got to watch the newest episodes of all the Disney hits. Its room service measured up as well - cheeseburgers and fries, ice cream sundaes, pancakes, eggs, and bacon were all on the menu (and they were quite reasonable, thank goodness!

One of my favorite parts of the weekend was when I overheard her child-like voice on the phone, apprehensively placing our room service order: (and I quote) "l would like, please, a plain cheeseburger with pickles, ketchup, and a Sprite. My mom would like, please, a plain cheese pizza and Kendall Jackson."

Caroline's favorite part was something she'd never even heard of - an "Expo." She'd never dreamed of so much "free" stuff! Pens, ear buds, pens with a stylus attached, key chains, candy, more pens, t-shirts, food, a selfie stick, and even more pens! The reps for each company were generous, too; we were even able to get enough "free stuff" to share with all the other Seaford kids. So, while mom was talking with sales representatives about new kinds of hands and feet, Caroline was filling up her bag (and her mouth and her pockets) with "free stuff!"

I should also mention here that Caroline truly loved being an only child for four days. She got to sit "shotgun," and she got to make all of life's biggest decisions - where we stopped for lunch, what we watched on television, even what time we went to sleep each night.

I was trying to be the "cool" mom, relaxing all the rules and treating her as an equal. I knew I had taken things a bit too far when Caroline started to instill order herself.

At one point, she told me it was time to turn the lights off and get some sleep as we "had an early event the next day." She kept us prompt for each breakout session, too. Then, on our last night, when I returned from the closing reception; I found her eagerly waiting at the door with her eyes on her watch, mumbling a passive-aggressive comment, something to the effect of "I hope you had fun down there tonight, little lady..." I stifled a giggle when I realized that she had treated the time I said I'd be back to the room as my curfew!

Don't worry. The appropriate order was instilled by our last morning together. Caroline whined about being hungry and complained when I told her she'd have to help me put on my leg, brush her teeth, and pack up her suitcase before we went to grab breakfast. She loudly complained: "Why did we have to brush our teeth when we were just going to mess them up with bagels and cream cheese? Why do we have do go home? Why can't daddy hold down the fort for one more day? He's not really going to run away and leave Ben in charge."

Phew! Order was restored! And Seaford legend has it that I let Caroline watch one more Disney sitcom (which turned into the requisite three) before we hit the road.

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My Fortieth Year

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My Fortieth Year

My fortieth year was fabulous, fantastic, and fun. It was filled with new experiences, new friends, great challenges, and greater love.

I tackled many new things as well as old things in new ways.

I swam hundreds of laps in the pool, rode the elliptical for many miles, and held many minutes of planks.

I learned to ride a bike, climb a rock wall, and dance a mamba.

I began a new career, started a business, and partnered with my sister to develop my web site.

I opened accounts with Squarespace, Twitter, and Instagram.

I wrote a blog, spoke to over 25 groups, and presented my ideas to audiences of children, teenagers, and adults alike.

I cut vegetables, cooked dinners, and washed dishes.

I hiked on trails, walked on sand, rode on chair lifts, and skied down beautiful slopes.

I traveled by plane, car, minivan, and Uber.

I ate dinners out, tried new wines at a vineyard, and even tried to like drinking beer! (Only for you, Brook!)

I saw Wicked at Ovens, Mary Poppins at Christ Lutheran, and Alice in Wonderland at Sun Valley Middle.

I pumped my own gas, swiped my own Red Card, and bagged my own groceries at Aldi.

I unbuckled a car seat, carried a 35-lb child, and happily buckled the seat again.

I donned a prosthetic leg, stayed overnight, and showered, all independently.

I ate over a hundred Poppy Seeds bagels, drank 52 bottles of Chardonnay, and had 700,000 cups of coffee (600,000 of which were prepared by a griping husband).

I made several versions of a chores chart, nagged five children about said chores chart, and paid too many dollars in unearned allowances.

I played Tooth Fairy, Easter Bunny, and Santa Claus, defended their existence to a set of twins, and broke it to a big sister that there were no such things.

I had three surgeries, one hospital stay, and three newly-fitted prosthetic legs.

My "hands" broke exactly 181 times, and I got stuck to three grocery carts and five car doors.

I'm attempting to raise five children with manners, respect, values, and faith. I've tried to model strength, gratitude, and kindness. But most of all, I'm trying to love them as much as they deserve to be loved.

A huge thank you to those who have helped me survive and thrive to see the day that makes forty-one years of age.

An even bigger thanks to the One (God) and the one (Brook) who help me do all the things I love and love all the things I do.

And Brook, baby, you make me want to live to see forty-one more years.

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I Am A Cyclist

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I Am A Cyclist

amputee cyclist

"It's just like riding a bike!" According to the old saying, riding a bike is supposed to come back easily, even when it's been years since your last ride.

However, these little maxims aren't necessarily true: babies generally don't sleep well; and cats don't always land on their feet. So I was cautiously optimistic that cycling could become my new sport of choice, even as an amputee...

Last weekend I had the opportunity to give it a whirl! I attended a "First Cycling Clinic" in Greenville, South Carolina that was hosted by OPAF (Orthotic and Prosthetic Activities Foundation).

In a recent blog post, I mentioned this fantastic organization that provides amputees with opportunities to try athletic activities for the "first" time. It was with OPAF that I had my first experience in the water; now, they put me (and about 30 other amputees) on wheels!

There was a time when I thought that I would never ride a bike again – I assumed that it would be too difficult (and scary) to balance on wheels. And how could I grip a hand brake without hands? Obviously, fall could mean a serious injury.

But, with the adaptations provided by The Roger C. Peace Rehabilitation Hospital, I wasn't required to balance, and falls were far less likely. So biking wasn't nearly as scary as the other activities I've tried since losing my hands and feet – not as frightening as walking, running, teaching step aerobics and weight training, or coming down a staircase. And not life-threatening like swimming or skiing!

The folks with OPAF had several different kinds of bikes that I could try – tricycles, hand cycles, and recumbent bikes. You should have seen some of their contraptions, all invented to allow people to experience the exhilarating freedom of riding a bike.

After talking and brainstorming about my unique challenges, we decided that I should try a recumbent bicycle. This arrangement allowed me to pedal without forcing my right knee to   bend more than 90 degrees.

Wearing all my prosthetics, I held the handlebars that were twisted 180 degrees so that I could push down on the hand brakes, instead of having to squeeze them.

I sat in the hammock-like seat, strapped my feet in the pedals, and off I went! Before I knew it, I was riding my bike around the block. It was so comfortable and even relaxing. Honestly, it felt more like lounging in a LazyBoy than exercising.

Cycling was easy! Easy as pie! Maybe that will be my next athletic endeavor!

To be continued...


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The Shallow End

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The Shallow End

In the blog post that I wrote last week, I described the sheer fear I felt in those first few moments of swimming again.

Without hands or feet, and without any prosthetics to help me, I didn't know if or how I'd keep my head above water, even in the shallow end. But I faced another, possibly greater fear before I even went near the water.

I'm embarrassed to mention this particular fear. But if I am going to be honest on this blog, I have to say it. And there's no flowery way to put it. No talking around it.

I was simply afraid of unveiling my broken body. I didn't want to undress and remove my prosthetics because I was deathly afraid of allowing anyone to see just how pitiful and helpless I look.

My prosthetics normally hide the "stubs" on the ends of my limbs; and, without them, I am naked and vulnerable.

Before tackling this fear, I could only imagine what I would look like, sitting at the edge of the pool: a little, helpless, "handicapped" girl, that someone had possibly left behind.

Being a (relatively) new amputee, I am often shocked myself when I see my own body.

So it is understandable that strangers give me that second glance...

But I do notice it.

I see the stares.

They are not mean-spirited stares. Yet, they are still unsettling. And I certainly don't want to attract more of them. Facing the world without something covering my wounds invites even more stares!

Kids, in particular, stare at me. Or maybe they are just less practiced at hiding their reactions - Most times, children are truly just curious...Who is that? What is that? Could it hurt me? Could it happen to me? Could it happen to my mom? As they look more closely, they often become fearful. They hide behind their moms. Anyone who knows how much I love kids (and not just my own), would tell you just how devastating this is to me.

Yet, most of my hesitation about swimming is on an embarrassingly superficial and vain level. Seeing my body and its challenges reminds me that achieving my "idea" of physical beauty is now even less of a possibility. I have a physical deformity, after all. I am not even whole! And I have many, many inexplicable scars. (I've never asked the doctors how some of them appeared because I truly don't want to know.)

I could never look beautiful. Or sexy. Or strong.

It certainly gives a new layer to dreading bathing suit season.

To think that I used to worry about how I looked in a bikini, or if I should even wear one...

Before buying a new (always black) bathing suit, I'd look in the mirror with angst. I'd examine the circumference of my thighs. I'd pinch the flab on my tummy. And I'd lament my "runner's chest," flattened with each mile.

I was at the gym nearly every day, trying to mold my body into some unnaturally tight and thin figure, without one ounce of fat or flubber. I did pushups and lifted many weights to build my chest, biceps, and shoulders. And the sit-ups. Oh, the sit-ups.

It all seems so ridiculous now.

So silly.

It does make me realize this: Everybody has something. Everybody has some physical characteristic that causes them shame. Some thing that weighs them down. Too fat. Too thin. Too short. Too long.

I guess my thing now is "too robotic," "too fake." (Although one could argue that more of my body is real than those Sports Illustrated Swimsuit models'...)

Unfortunately, we all hold ourselves to the ridiculous ideals that we see in the media. We spend so much time and energy trying to change ourselves. It is so "self-" centered; imagine if we spent this same time and energy on others - women could save the world! Still, I think we all do it, to some degree.

I used to keep my "arms" on while I was working out at the Y. I would use them to disguise my own arms, even though they'd make me uncomfortably hot. Now I just take them off. I know that some people will stare, regardless of what I do. They can just as well stare at my prosthetics as at my stumps. So I may as well be comfortable while they stare.

For me to wear a bathing suit now is a bold and courageous move. It says, "Yes, I am different. I am an amputee. So, stare all you want. I'll be over here enjoying my life."

Once I slip in to the pool, I realize how strong and amazing my body really is. I can still float. I can still swim, lap after lap. I can still enjoy life.

And that is beautiful.

Being beautiful is so much more important than looking beautiful.

So, what is the one fear that holds you back from doing something you love? That keeps you from enjoying your life? How can you "slip in to the pool" in your life?

For when you do, I think you'll find strong, amazing, beautiful things.

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