Moving.

Today - for the end of #LimbDifferenceAwareness month - I have to talk about moving. The opposite of stillness.

Every day with #MightyWoody is at moments an exercise in doing the things you think you cannot do. Albeit most days are quite mundane, but there are times for me when it is a feat of some magnitude to act normal. To move. To move on. To allow my quest for meaning in this occurrence to conclude and to move.

In my final weeks of pregnancy with #MightyWoody, I was working on imagery to help me get through the labor and delivery process. At the time I was doing the stereotypical nesting and spending a lot of time in the kitchen. So I hung this by my window (I got it from a book attributing it to Anais Nin but not sure that is accurate...forgive me!) I haven't been able to take it down.

“And the day came 
when the risk to remain tight in a bud 
was more painful 
than the risk it took to blossom."

I thought holding this image of a blooming flower would help me do the blossoming I needed to do physically to shepherd #MightyWoody into the world. And while that was true, I had no idea what the blossoming would truly be. I also needed to acknowledge that there would be pain.

Blossoming is moving. As much as I want to stand still as a parent - to perfect each precious moment - I want them to go quickly too. I want to know how it ends. So I can let go. (Yes, I am sometimes the person who reads the last chapter of the book to get over the anxiety so I can go back to the beginning and enjoy what's happening.)

It has been painful. The holding on. The hoping and wishing and praying that it is maybe still somehow going to be different than it is. This holding on hasn't been denial, although there has been plenty of that. This has been my desperate clutch for sameness in a sea of overwhelming difference. Having children is an expression of seeking sameness. The sameness (selfishness?) of wishing to re-create oneself in children. And despite the similarity of hairline, eye color or expression, we can only truly be different from one another. And the truth is, I belong to my children, not the other way around.

I am a doer. Which makes moving my natural state. But it has been in the stillness that I have experienced with #MightyWoody - the forced stopping of the whirlwind of my locomotive life - that I have come to understand that my constant need to be a taker of action might be my tool for mitigating the pain of blossoming. That in moving I keep my bud tight. And that the slowing down of time I experienced first at Woody's birth and now on a more regular basis through the shock and awe of him is the risk. He is the risk.

The blossoming seems to be allowing the loss of sameness to become the acceptance of difference that will allow my child - my children - to plant their own buds and invite me to water them. To let the tears come as I hold the right hand of my older son and the left hand of my younger. To see them both as highly individual and unique and yet so much the same that it hurts to point out the primary difference.

So I go on moving. But invite the awareness, the generosity, and the acceptance that this first year has taught me. I embrace the risk of my imperfection to bloom, together, with my family.

To move.

#DifferentIsAwesome

This is perhaps, my favorite photo of #MightyWoody. And easily my favorite photo of #BigBrotherAl. Who knew our hearts could be so big.

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I am dreading his first fall.

My older son hasn't even started going on the monkey bars so my fear feels pretty irrational. I've watched amazing videos of kiddos with limb differences doing all sorts of things. I know #MightyWoody will figure it out. But I'm still terrified. The moment will come when he falls and I don't reach him to catch up and it's more than just a scratch. And he will be hurt and screaming, probably bleeding. And after that I will want to keep him from going out on that playground or to that friends house or from climbing the wall or playing basketball or from even leaving my side. And it will be hard.

About a year ago, I had the privilege of hearing the Lt. Gov. of Washington - Cyrus Habib - speak at a Young Elected Officials Network conference. It was extremely moving for me. #MightyWoody was in attendance at he conference with me so everything that was said was just that more poignant. Lt. Governor Habib has been blind since he was 8. And he told a story that has stuck with me. (I apologize here for paraphrasing and perhaps not getting it exactly right...Lt. Governor Habib is a very moving and dynamic speaker!)

At recess, his teacher wasn't letting him play on the playground but made him sit out on the side because the teacher was afraid he would fall and get hurt. Eventually his mother found out about it. She told the teacher that he needed to be allowed to play. “It may happen that he might slip and fall, and he might even slip and fall and break his arm — that’s a fear that any mother has. But I can fix a broken arm; I can never fix a broken spirit.”

At the time, and still most of the time today, I identify with the teacher. But I know, over time, I will eventually be able to be as assured as the mother. It is clear to me that I was meant to hear this story when I did. Cyrus's mother helped him learn the equipment at playgrounds so he could be comfortable and included. This was the first time I started to realize that I may need to be an advocate for my son and that I should start preparing myself. Because what I will be teaching #MightyWoody is how to advocate for himself. How to make sure that he is included and that everyone around him is too.

Today, this means swallowing my nerves and openly talking about his arm even when I don't want to. It means allowing awkward questions from strangers and seeing the true intent behind them without getting mad. It means speaking up if someone I don't know chooses an unkind word and helping to educate that person without judgment. It means taking the step to meet new people in my geographic community and in the limb different community. This has definitely enriched my life.

What I want most to teach my children is to be kind and take care of others. And to do that I first need to teach them to be kind to and take care of themselves. And to do that, I need to be kind to and take care of myself. It is a cycle that requires patience, love, and partnerships. But I know that I agree with Cyrus's mom - its our spirits we have to cradle with love.

#LimbDifferenceAwareness

(#MightyWoody with his devoted daddy Thomas Macker in Seattle)

 
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Letting go of expectations for our kids is challenging, but I believe it can be done. The real challenge is to teach them to have the highest expectations for themselves, to do the things they think they cannot do, and to forgive themselves if - and when - they fail. To teach #MightyWoody that his difference is not an excuse to expect anything less from himself, nor is it the reason that he will inevitably experience failure. 
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#expectations #limbdifferenceawareness 
#tenfingersareoverrated

 
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The Before. The After.

Before I had kids, I thought our big challenges would be getting them to eat vegetables, potty training, and all the teenage stuff. Before I had kids, I thought all the things that could happen - aka "go wrong" - happen to other people. Before I had kids I thought I was invincible.

Before we met #MightyWoody a lot of focus was on my health because I had preeclampsia & HELLP syndrome with #BigBrotherAl. In some ways not getting the birth experience I had hoped and planned for the first time, made the second time easier because expectations were gone. The stuff that happened to other people had happened to me and we came through to the other side. Sure, I had hopes for round 2, but I had the experience to know that anything was possible and to prepare for my ideal and expect just about anything. Which is to say, I spent most of my second pregnancy waiting for the shoe to drop - the shoe being finding out that my body was revolting again. So, you can imagine my relief at the news that I was past the danger zone and could proceed with my hopes for my labor and delivery process (while still expecting anything!). Maybe we were in the clear. Maybe we had done our part in the universe's wheel and we had paid our dues.

My struggle with round 1 had been the "it doesn't matter as long as baby is healthy" mentality. It does matter what moms experience getting healthy baby into the world. And while I felt that, I also had placed a lot of stock in what my experience of bringing the hopefully healthy baby into the world would be. At the time, it was earth-shattering what happened. I was shell-shocked after Al's birth. My world was tilted off its axis. I wanted it back. I wanted a do-over. I had been wholly unequipped to ponder my mortality as part of the birthing experience, and ultimately, it left me with really complicated feelings about my capacity to care for my new baby. But the "as long as baby is healthy" is one of those things we say because we want it to be true when we know it can never really be enough.

When I was pregnant with #MightyWoody, the bubble had already been burst in the pursuit of experiential perfection. The After with #MightyWoody was a wholly new sensation. It was the complete and utter thrill of getting the birth experience closer to what I hoped for paired with the most amazing heartbreak followed by unexplainable (likely hormone-induced) bliss. The After was the chaos of a room after delivery, the tossing of the baby onto my belly, but the complete stillness as I stared into my husband's eyes at the moment we both saw #MightyWoody and simultaneously realized - as stated before - that life is like a box of chocolates. When we entered the twilight zone together (FYI we're still in that twilight zone...).

It was the thumping in my heart as I waited for the rest of his non-existent arm to unfurl. (It never did.) I must have just seen wrong. Could babies be born like this? Could I put him back in to go to The Before so he has time to grow it? Could I put him back in The Before so we can go back to before the shattering? I want a do-over. There must be some mistake. I did everything right.

It was my fear as I looked to see if he had feet. He did, sigh of relief. Why was that important? It was the pulsing vibration in the air as the people in the room waited to see how I would react so they would know what to do. It was definitely a fake it til you make it moment. I didn't want to make the same mistake as the first time - the mistake where I would seem surprised about all this. I didn't want to give away that there was anything happening here that I wasn't perfectly poised to handle. All that matters is that he's healthy right? It's no big deal.

It was a big deal.

The After After was the realization of odd coincidences of life. It was the realization that the pregnancy carpal tunnel I had in the last six weeks had given me a numbness in my right arm and hand. Was I getting a signal from Woody?! It was the conversation we were having moments before Woody when my OB was sharing how someone had told her wouldn't it be great if she had extra hands and we were talking about what we would all do if we did have them. Extra hands! Who knew that having two would moments later become such an amazing gift. An extravagance.

The After After After is now. The awareness of the fragility of it all. The switching of the rotational axis that would have changed the entire trajectory of the history of Earth. I still dream at night where it is the day before he's born and I'm still pregnant. I still day dream the minute by minute of those last few days of innocence, not to change the outcome, but because that expectation and excitement was such euphoria.

Parenting is the constant reminder of mortality. #LimbDifferenceAwareness for me so far has been awareness of human fragility. And learning to live fully despite that.

We are not invincible. And I prefer it that way.

#TenFingersAreOverrated

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"We did it! He's here. He's perfect. He only has a left hand."

Cue record scratch.

This was our birth announcement. Sent via text (2nd kid!). It's confusing.

For some reason, I kept blurting it out. I can't imagine what it might have been like to receive this message from me. I think initially I wanted to ward off any of the usual "ten fingers and ten toes" chatter that is typically part of the discussion. And perfect just felt like the word to use. The word we used a lot in those early days. The word everyone used to reassure us not that he was perfect, but that he could still be perfect in his imperfection. Don't worry, he's still perfect.

Yes, in the mythical, wonderfully ethical, amazingly aspirational world we are perfect in our imperfections. Our imperfections are what make us. But it was - is - still hard to swallow after I met my perfectly imperfect son. Especially if one is a perfectionist. Easy for all the people with perfect children to say in reassurance to us. Easy for me to smile, fight back my tears, and snuggle in closer while I wrap the swaddle so I don't have to look at it. Oh the competitive nature of the human spirit, competitive even in grief.

What I think I was really doing was blurting it out so that I wouldn't have to say the words out loud with my mouth and shaking voice when people eventually met #MightyWoody. It was just too much to say it out loud. It would instantly reduce me to a puddle and make me feel sad for my newborn when all I desperately wanted was to celebrate his birth and fall completely, madly in love with him.

I also didn't want any questions at the beginning because the answer to all the questions was "I don't know" and that is not the answer you expect to have as a parent, especially the second time around. Don't know why. Don't know what caused it. Don't know when or if he'll need surgery. Don't know if he'll want/need a prosthetic. Don't know if he'll tie shoes. Don't know if he'll want to tie his shoes. Don't know if he'll blame me. Don't know if it will ruin his entire life. Don't know if it will make his entire life. Don't know. Don't know. Don't know.

So I blurted it out. And I bought myself some time to find some of the answers and to get a little bit more comfortable with the "don't knows" of it all. I found answers with the doctors, with the #LuckyFinProjectcommunity, with the limb different and adaptive sports communities, with amazing children's books, with other women (some moms, some not), with research, with prayers, and especially with Thomas Macker and #BigBrotherAl.

I also found more questions. Every answer really produced another question. So many questions constantly piling up that I decided not to pursue them. Questions like genetic testing. Possible "amplifiers" that could have increased likeliness but need more research by the scientific and medical community. Which is the best location to get prosthetics. How much do prosthetics cost? (apparently you outgrow them at the same rate as shoes) Is this a pre-existing condition? Will he be able to wear pants?

And then other questions about #MightyWoody that I kind of knew the answers to, but was afraid to ask myself. Questions like, how will we hold his hands and swing him like kids love if he doesn't have a hand? Who will cut meat for him when he's a teenager? Will he find a partner in life who accepts him? What if he gets mad at me? Will I be too indulgent of him because deep down I feel sorry for him or blame myself? Will I let him get away with everything? Will it make me expect more from his brother? From him? What if his brother makes fun of him? How will he respond when kids tease him? How will I respond when they do? And the biggest, loudest, constant one, just why?

And then fun questions. Will he get a bionic arm? Will it be super strong and enable him to do things that others can't? Will he write about being one-handed for his college essay? Will that feel weird because he didn't choose it? Will there still be college essay questions when he applies to college? Can a kid with one-hand join the military? What will his children think of it?

I blurted it out to try to help the awkwardness of all of us being human. So you wouldn't have the awkwardness of wondering what to say. So we all could try to move past the paralyzing fear we experience when we encounter a person with a difference or disability. The fear that our own children will say something that could be perceived as rude. So you wouldn't know that inside my head on constant repeat was "FIVE fingers ten toes FIVE fingers ten toes" and please please please don't say ten fingers ten toes. Not that first day. Not probably for a year. Not til I learned that #tenfingersareoverrated. Sometimes still not now.

I was angry and frustrated too. Why did I need to worry about how other people would feel about #MightyWoody only having one hand? Why did I think it was my job to make it ok for everyone else? Who was going to make it ok for me? There are still days when the fact that he has one-hand is so unbelievable to me I am speechless. Is this really my life?

Would I have asked for it, no. Would I change it, no.

It is pretty overwhelming, parenting.

So I blurted it out and decided to enjoy my sweet special time snuggling with my nugget. And it worked. I fell completely, madly in love. And also developed a more intense mama bear shield than I thought possible. The questions remain and grow. The don't knows multiply daily. But we push on and let him show us the way.

#limbdifferenceawareness #perfectlyimperfect
#DoingItMyWay #DoingItHisWay
#parenting #mamabear

(And this was one of our favorite pictures because you could see his right arm but it wasn't all about his right arm. #MightyWoody at 48 hours)

 
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And just like that #MightyWoody is heading off into the sunset. Pretty sure he’s become a toddler while I’ve been trying to keep him swaddled in my arms. He’s conquered the cul de sac. He’s trying to keep up with #BigBrotherAl and he’s melting my heart. Every time I see him do something - even something that has nothing to do with his arm - I marvel. It reminds me that our bodies are truly amazing and that we need to be good to them. His #luckyfin is exceptional at digging in the dirt. The end of his arm looks like a really intense “innie” belly button and he literally collected rocks and dirt in there. Pretty cool trick. #limbdifferenceawareness #tenfingersareoverrated #doingitmyway

 
 

Clothes.

One of the first challenges we started thinking about addressing with #MightyWoody was clothes. It was a practical area to focus on so that we could stay productive. This may seem trivial and like the least of our worries, but for me, it was all I could think about sometimes. And again, practical and actionable can be really great gifts when you in the midst of grief.

At first, it was simpler because he was small and sleeping all the time and often bundled up anyway so it didn’t matter. But since day one, it was always important to me that he have his right arm accessible so that it would move just as much as his left. (I had horrible visions of his arm not being used and shriveling up. Post-baby hormones are awesome!)

What this meant for the first 6 months was that we were either rolling up his sleeve on that side or cutting them off. And generally, this worked for an infant. We were certainly not the best judge of what the length should be and cut everything like a first grader might, but it got the job done. And it kinda felt good. Like “I’ll show you pesky shirt for two regular arms...watch me with my dangerous scissors attack you.” And fortunately, warmer weather came along and we discovered the beauty of t-shirts.

However, as things progressed in months 10-12, Woody was getting busier, and clothes were getting more frustrating for me and for him. I also started to feel maniacal about the cutting. It was a weird neuroses of “I don’t want to ruin the outfit by cutting off the sleeve” paired with “My kid should not have to run around like a hooligan with cut off sleeves” and finally “Who cares what he is wearing as long as he is happy?! But I am caring and so I'm going to bug you until the sleeve stays rolled up.” This stuff gets engrained in your mind and it is hard to let go of.

I find those questions a little bit absurd now. But at the time, I cared not so much because of how it looked but because I wanted him to feel like there were clothes for him. Like the items he would literally be living his life in didn’t remind him of his difference or exacerbate the challenges at every moment.

There are some clothing companies starting to make adaptive clothing with magnets, zipper alternatives, and access points that support a range of different abilities and needs. This is awesome. Some companies are also starting to use models with limb differences. I haven’t yet found manufactured clothes that accommodate for a limb difference. And I know that eventually if he has a prosthetic when he is older, he won’t need adapted clothing. But because we are waiting for him to want to pursue that - and because we want to encourage his full development and expression of his arm - we have adapted our own.

A few weeks ago I took a giant basket of clothes to Calla Grimes to alter for us. I don’t know why I had been so hesitant to do something like this. Probably denial. But I finally took them. They were all of Al’s clothes plus a few that were gifts to Woody that we expect him to wear over the next 8 months or so. It was a fairly inconsequential thing to do at the outset.

But then the day came when I got to go pick them up. And it was magical. The feeling of calm and okay-ness that came over me after picking up a jacket and pair of pajamas that had been exquisitely adjusted for Woody brought tears to my eyes. Like I had been holding my breath for the past year. It was perhaps one of the first moments since Woody was born that I truly felt like I knew exactly what to do for him. I felt like I belonged to him and that he had taught me something. I was able to put him in a coat that fit him perfectly and watch him play in the driveway with his brother without me chasing after him. It was so normal feeling.

It is small. And yet so huge. I still have so many questions about why and what is yet to come and what he will need. But for now, I feel really good about where we are.

Also, it’s almost t-shirt season.

#LimbDifferenceAwareness
#5Fingers10Toes
#10fingersareoverrated
#LuckyFinProject

 
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"How will he write?"

A new young friend asked this question a few nights ago in regards to #MightyWoody. I gave my answer - which I have been giving since he was born - that he'll be left-handed. Normally, I wouldn't have thought twice about this. At the beginning, this is probably a question I would have been proud to answer simply because I have the answer unlike so many other questions for which there are no answers. This wasn't a tough one.

I've actually loved knowing that he'll be left-handed. Thomas Macker and I both have left-handed relatives (his grandmother, my dad, just to name the ones immediately coming to mind). In the early weeks I loved doing my internet searches of historical figures who have been left-handed. There are so many good ones! Today, my favorite is Ruth Bader Ginsburg. Other favorites include, Leonardo Da Vinci, Helen Keller (!), Albert Einstein, Marie Curie, Gandhi, Joan of Arc, Winston Churchill, Babe Ruth. And a surprising number of U.S. Presidents.

My understanding of brain hemispheres, laterality, side-dominance, and other related brain science is just at its nascence. And from my limited research, it seems that there is quite a lot that we don't really know or understand about this because the brain still leaves so much learning to do. How exciting!

It seems from the interwebs that 85-90% of all humans are right-handed. Research indicates that there have never been any societies throughout the existence of our species where the dominant side was the left hand. It has also been shown that primates have no discernible hand preference - meaning it wasn't until we evolved to walk on two legs that our handedness came into play. (aka the way primitive tools were used indicated side dominance). There is a lot more out there on this subject.

Back to the question in my driveway - I absolutely would have just responded and moved on from this as one of the normal inquiries. But my mom sent me a video recently about a 6-year old kiddo who was born just like #MightyWoody and seems is on his way to a stellar golf career. Here he is at 3 (https://yhoo.it/2GxJJyI) And here is at 6 (https://hrld.us/2DpLbkN).

This little boy is right side dominant (at least in golf - where the percentage of lefties is lower, only around 5%), and so he plays on that side. But he was born without his right hand so it is only his left arm that is holding the club and swinging.

Wow! This really got me thinking about #MightyWoody.

There is much interest in how the brains of left-handed humans function and/or differ from right-handed humans. I think I have taken for granted the right-hand/left-brain correlation. That correlation doesn't really help understand a left-handed person. Some research suggests that being left-handed makes one more adaptable (or at least your brain more adaptable) and able to recover from certain things faster (like a stroke). Some suggests that there may be an increase in certain challenges related to mental health. Who is really to say. The human body is both increasingly known to us and as deep a mystery as there ever was.

For as much as we live in a two-handed world, we also very much live in a right-handed world and most objects are designed for right-handedness from cars to scissors. I've been concerned with all the two-handed things that he will have to adapt to do and am eager to see how he continues to find his own way to do those. It appears that genetics have a role to play in handedness although I don't quite fully understand it. Something approximating our genes either have a predisposition for right-handedness or a predisposition is just absent (so not a choice for left-handedness). Science explains this better than I do. But if his one-handedness is a genetic blip, did his genes talk to each other enough to know that they needed to make him left-handed? I'm not quite sure what to make of the idea that he could be a right-handed kiddo born (genetically) without a right hand!?!

My conclusion at this point is still that #MightyWoody will be left-handed. Although he could end up with a prosthetic one day that allows him to function with more dominance on the right side. But my recent experience has been a good reminder that I probably shouldn't assume too much about either of my kids in a number of areas. So my rephrasing, I expect that Woody will write with his left hand, but that doesn't mean he will be left-side dominant. It could also afford him the opportunity to exercise his brain differently from all of us right-handed regulars. This could make some things easier and some things harder. Welcome to life!

#LimbDifferenceAwareness
#TenFingersAreOverrated
#LuckyFinSquad
#Lefty

(I can't resist - this is one my fave reads on why lefties are rare...because humans favor cooperation over competition...I wonder how this will play out with siblings! https://bit.ly/2DoFBPS)

 
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When I say that he will never know the difference (because he was born this way) I think what I am saying is that right now, today, this past year, has been my journey. It’s been my thing to get over or deal with or whatever. One day, I think so much of this will transition into being his journey. I guess that is what awareness is. I’ve been aware since the first day. He seems every now and then to catch a glimpse and notice his arms are not the same. He definitely knows he can do different things with them (cue his walk around the house tonight laughing hysterically with a bottle cap stuck on his right arm). But he doesn’t know yet he is different. I imagine my role will change quite a bit then. I am so grateful for this time I have had for my own processing and awareness raising. I am getting prepared. Also, he gets that hair from me. Sorry #MightyWoody😍
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#limbdifferenceawareness #tenfingersareoverrated

 
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When #MightyWoody was first born, I had a lot of anxiety about the social isolation of having a child with a difference. I had not considered it before. We didn’t know about his arm until the moment he was born, and so we hadn’t done any processing prior. In those early weeks and still periodically even today, I get pangs of isolation and even shame. Not a feeling of being ashamed of him, but the shame that periodically comes up in parenting because I’m not perfect. Because there are no answers and there’s no “why” or explanation, it can be hard to move beyond this. What this has done for me - for which I am so grateful - is teach me about the team that is family. I understand the depth of family and what that truly means so much more now. And not just relatives, the extended family of the broader community. While it has been a struggle, this is where the gift comes in. And of course, my brilliant college roommate and dear friend @quinn.t.c.leslie knew this even before I did. So we had #TeamWoody from the beginning. He’s the captain leading us all down this bumpy and fascinating journey.

#limbdifferenceawareness 
#luckyfinsquad
#luckyfinproject

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"I had to prove them wrong"

2018 was an interesting year to give birth to a child with a limb difference. I am admittedly not a sports person, but over the past year I've found myself being pulled into sports story after sports story. Also I have boys, so I figure I need to get educated so they'll think I'm cool later.

It began with Jim Abbott, the MLB player in the late 80s/early 90s who, like #MightyWoody, was born without his right hand. He played for the New York Yankees and pitched a no-hitter in 1993. (And I literally had to look up what a no-hitter was when I was reading his autobiography, I say again, I am not a sports person.) I'll have more on Jim later this month. But I want to turn to one of the athletes that is now part of my daily existence and is hopefully changing things for this generation.

Until 2018, I honestly don't think I watched an entire NFL game ever. #MightyWoody and Shaquem Griffen changed all that for me. Shaquem played his first NFL season this past year with the Seattle Seahawks. His twin brother is on the same team. They have an amazing story that has made it into various realms of mainstream media, including a 60 Minutes special.

For me, it all started with one video. I'm sharing it here. You'll be able to learn a little bit about Shaquem directly from him. It's the video that has led me to the word UNDEFEATED. That word has perhaps taken over my life. It would definitely be my word of the year for 2018. And maybe for the next decade if not the rest of my life.

But there is something else in this video too that relates to the earlier conversation on comparisons. There's a point where he says "I had to prove them wrong." And then later, "I had to prove that I belong." I love everything about this video, except those two statements. Now, I believe those two statements are true. For my son, I just wish that they weren't. And that is where I have to ask more questions.

Why is it Shaquem's job to prove something? Why isn't it our job to accept him? To accept his difference by not treating him differently? If someone makes, let's say, a series of choices that have negative consequences and then has to earn their way back into a specific environment, then that person may have something to prove. But fundamentally people don't need to prove worth as a means of existence. Especially children.

What I love about Shaquem is that he just repeatedly blows us all away with his strength and perseverance, and it literally has nothing to do with his hand. 
(Google Shaquem Griffin 40 yard dash)

Now don't get me wrong. I LOVE this video. I cry when I watch it. I love all of those kids. I can't wait to show Woody when he is older. It inspires me. Makes me feel like I am getting a hug. All the things. But...I just can't shake feeling that if we don't examine and unpack the responsibility that we may intentionally or unintentionally lob onto ourselves or our children, we might miss a huge opportunity for growth.

I get that with the NFL and any sport that there is by necessity competition. And this is where the later quote comes in - I had to prove that I belong. We all have to do that. And I just wonder if there will ever come a time when we don't? (maybe when social media is over...) And, how great is the danger in demanding of a child that they prove they belong?

The good news is that what I see with Shaquem is that competition has moved beyond proving something to someone else. His competition is just where it should be, with himself.

We all live with the dichotomy of wanting to belong/fit in and wanting to stand out. But we want to have the freedom to choose what makes us different and usually (hopefully) it isn't our appearance.

My prayer for my son is that he will find his way, like Shaquem, so that he too can say:

What made me different was 
my heart, 
my mind, 
my will.

@ShaquemGriffen18

#Undefeated 
#IAmShaquemGriffin 
#LimbDifferenceAwareness

 
 

Today kicks off a celebration of the Week of the Young Child, created by the The National Association for the Education of Young Children (NAEYC)Governor Mark Gordon signed a proclamation today and Teton County will be considering its own resolution tomorrow. (Come at 10am if you want - I'm hoping to fill the room with young children and their caregivers!)

We have been so blessed with the people who have helped us navigate our journey and experiences with both of our children. From occupational therapy for #MightyWoody at the Children's Learning Center to parent education from Growing Great Families to our trusted childcare at Sweet Peas Babies, we are both blessed and very lucky.

We know that not every family has the security we do when it comes to childcare, healthcare and early childhood development resources. This was one of my first fears as we started to understand what might be needed with Woody. And it was so easily resolved because we know we can access whatever we might need to. And that knowledge illuminates that we know not every child or family facing a challenge can.

Whenever I try to put myself into the shoes of another family that faces stress around childcare or health care for their child, I know that I will never truly understand. I can only hope to empathize and do what I can to improve access.

Tonight, I just want to say thank you. A community of caregivers have helped us embrace, understand and process first becoming parents, and then facing the new challenge of parenting a child with a limb difference.

Thank you to every caregiver, whether you are a relative, neighbor, friend, sibling, nanny, educator, administrator, you are part of making sure that every single one of our kiddos gets what they need, whatever that need is.

Thank you.

(Can you find #MightyWoody playing in the balls at the Children's Learning Center?!)

#LimbDifferenceAwareness #WeekoftheYoungChild #ItTakesAVillage

 
LDA April 8.jpg
 

Since meeting #MightyWoody for the first time, we've learned some new vocab words. It seems appropriate to share those now as everyone thinks about getting back to school from spring break tomorrow. Here are some of our #LimbDifferenceAwareness words (with a special thanks to Dr. Julie Ann Zitterkopf Larson for her book "I Have A Doll Just Like You" and to Katie & Paul Leatherwood for the book "Look What Kate Can Do"):

Limb: A word that can mean either arm or leg

Congenital limb deficiency*: When a baby is born missing part or all of a limb(s).

Acquired limb deficiency: When part or all of a limb is lost to trauma or is removed due to a medical condition such as infection

Prosthesis: An artificial body part used in place of a body part that is absent

Amelia: Congenital absence of one or more limbs

Amputee: A person who has part or all of an arm or leg surgically removed

Amniotic Band Syndrome: Occurs when the fetus becomes entangled in fibrous string-like amniotic bands in the womb, restricting blood flow and affecting the baby’s development. (more on this in another post...this is what caused NFL player Shaqueem Griffen's limb difference)

Symbrachydactyly: a congenital abnormality where a child is born born with short fingers, which may be webbed, or they are missing fingers. Usually this happens on only 1 hand, and the other hand looks typical.

Nubbins: little stumps of skin and soft tissue where the fingers would be (aka tiny "fingers" that do not have any bones in them). In some instances it is recommended that these be removed. (#MightyWoody has nubbins. We have left them in place for now.)

Residual Limb: the part of the body that remains after an amputation has been performed (more commonly called a "stump")

*One of the words that we have struggled with the most is "deficiency". In my opinion it serves a purpose as a medical definition but it is a challenging one when you translate it to a person. Same goes for "birth defect." We are still deciding what we think about nubbins and stump. I've heard them before and never thought anything of them.

It's made me ponder other words in our language that are simply inadequate at capturing the complexity of human beings and the human spirit. Words that become shortcuts for describing a circumstance that are ultimately translated to actually describing the person. They can become engrained into a person's identity, for good or bad. They can also be co-opted and used by others to tease or bully. Ultimately, the problem I see is how one overarching characteristic or fact about a person consumes an entire human being's identity and then that word is used to encapsulate an entire existence. I'm seeing more that this happens in a number of different ways where we seek shorthand through language. Some days language just feels woefully inadequate.

One of the terms that I did learn shortly after #MightyWoody was born was "differently-abled." I really like this term. But I've come to see that some identify potential challenges with it. I understand some of those too, although I still find this a better descriptor for him than others we could use. And to be honest, I'm trying to stop with the whole describing all together. I probably need to make sure I don't get into a habit of saying this is my one-handed son. Rather, this is my younger son, he was born with one-hand. But this is difficult.

Part of what makes this so challenging is that Woody is not yet old enough to tell us what he wants. But I guess that is all of parenting! I had this problem when deciding names...your name is perhaps one of the most intimate parts of your entire persona...it was a big deal to think about making such an important decision for a new person.

Anyway, I went in search of the origins of the term differently-abled and the interwebs brought me to a fascinating page on recommendations from the National Center on Disability and Journalism at Arizona State University. You may find it interesting too.

#LimbDifferenceAwareness #DifferentlyAbled #LuckyFinProject

**Some of these definitions are paraphrased from very complex descriptions. I welcome clarifications or corrections but have tried to make them simple to understand. And I am still learning.

 
 

A few days before #MightyWoody was born, we went to see The Greatest Showman. I adore this movie. I have been part of live theater and dance my entire life, so it is no surprise that I love this movie.

When Woody was born just a few days after we saw it, I realized that seeing this movie was just one of a few events that occurred right around Woody's birth that feel like more than just coincidences. It is not a stretch to say that this movie - and its music - were part of my healing process.

I would have loved The Greatest Showman because of the music, because of the dancing, because it is about the heart that goes into making people smile by sharing your fun. But the reason I fell in love with this movie at this time was because of Woody. It The Greatest Showman celebrates differences. It takes the people that don't fit in - and in some cases people who have been hidden away by others because of their differences - and gives them a home.

It is what the theater has always been for me personally. A place for the misfits. A place where the point is to work together to make sure all the perspectives can be heard. A place where we can study our own humanity because human beings are the essence of the art form. Where the smallest character in a play still has a full, rich story. Where we learn to empathize with people whose experiences are different from our own. Where we watch vulnerability and in turn, hopefully, learn something about our own.

Owning our differences is not easy. Neither is owning our sameness. Some of us spend a lot of time trying to stand out. To rise about the pack. To be accepted and through that acceptance somehow noticed. It would be unfair for me not to admit that I have often been this person. It is then an emotional curveball to catch myself wishing for sameness as the parent of a "different" child who will most likely always stand out in some way. Oh the complexities of being a human!

My prayer for my son with a limb difference is for him to know that he is whole. After that, I want his life to be filled with his choices of how to express that. To choose how to be noticed (or not).

#LimbDifferenceAwareness #ThisIsMe #WeAreGlorious

For all of this...my anthem is THIS IS ME from The Greatest Showman

I am not a stranger to the dark
Hide away, they say
'Cause we don't want your broken parts
I've learned to be ashamed of all my scars
Run away, they say
No one'll love you as you are
But I won't let them break me down to dust
I know that there's a place for us
For we are glorious

Another round of bullets hits my skin
Well, fire away 'cause today, I won't let the shame sink in
We are bursting through the barricades and
Reaching for the sun 
we are warriors
Yeah, that's what we've become

and I know that I deserve your love
'cause there's nothing I'm not worthy of

When the sharpest words wanna cut me down
I'm gonna send a flood, gonna drown them out
I am brave, I am bruised
I am who I'm meant to be, this is me

Look out 'cause here I come
And I'm marching on to the beat I drum
I'm not scared to be seen
I make no apologies, this is me

 
 

In the early days last year when Woody was just weeks old, I remember feeling like I needed to just stare and stare at his arm so I could get used to it. He would be wrapped up tight and I would forget about it. There were so many emotions from the hormones and the expectations and the reality. All the things of having children. And then he would become unwrapped from his swaddle and I would literally be surprised. At times it felt unreal. Like if I just kept him swaddled it would turn out that this wasn’t happening. I would like to say it took me days to get used to it. But honestly, I think it took almost a year for it to be natural to me. For me to not keep feeling like I would wake up from the dream and that I would go in and pick him up from a nap and he’d have a hand. #limbdifferenceawareness #MightyWoody

 
LDA April 5.jpg
 

"It's just his hand"

I can't tell you how many times we've heard this. We have even said it ourselves. It's "just" his hand. It is only ever said with love and compassion, but it still strikes a nerve with me that I want to try to explain.

Also,
"He was born this way so he'll never know the difference"

I call B.S.

There are two things that I always want to ask back to these types of comments:
1. Would you give up one of your hands?
2. Which one of your limbs or senses is the most valuable?

To #1, as a mother I would say of course I would be willing to give up a hand if it meant #MightyWoody would have his. But I'm not even really sure what that means or if I say it because I am supposed to because that is what unconditional love is supposed to be. I've never even broken a bone so I can't really speak to the loss of movement and ability. What I know is that one day, I am confident that to Woody, it is going to mean so much more than "just a hand."

That may happen on the day he figures out how to do something that ten-fingered folk do pretty easily (ie button your clothes, tie your shoes, cut your food, zip your coat, ride your bike, type, open a jar...you get my point). It may also happen the first time he asks me "Why me?" and I don't have an answer. It may happen when another child or adult asks him what happened for the umpteenth time, and he has to answer (for the umpteenth time) but really he just wants to talk about the book he is reading and not about his arm. And maybe it happens because he is recognized for doing something as a "one-handed kid" when all he wants is to be a "just a kid".

To #2, and to the comment of it "just" being his hand and "he'll never know the difference", I am uncomfortable because it introduces the idea of comparisons. And comparisons are a big part of what has gotten us in trouble in contemporary society (aided no doubt by social media and how we can so easily present all the pretty shiny parts of ourselves and invite the comparisons). It is an entirely different take on the concept of "keeping up with the Joneses."

I am not grateful that my son was born with "just" a missing hand. Is it better to be born with one hand rather than one foot? Is it better to be born with just a missing hand instead of no limbs? Is it better to be born with a missing hand than to contract a disease? I don't know. But I grapple with the idea that we are supposed to compare our children to each other and ourselves and through a comparison somehow feel better about our situation. The answer is yes, shit can always get worse. But is that how we want to live our lives? Feeling good because someone else is feeling worse?

But our society is set up that way. We are compared to each other all the time. It is the same way I have felt whenever I have been asked - or heard other people be asked - how much a baby weighs when it is born. I mean I get it. But what does it mean and what will it tell us? It is one of the first quantifiable things we ask about that starts our trajectory of comparisons. And it makes new parents start the incessant firing of questions and comparisons in their brain that literally never let up. For someone to be in first, everyone else is not in first.

To be honest, this whole experience has made me realize that it is absolutely AMAZING that so many human beings are born without more things going "wrong."

And I get what people mean when they say he won't know the difference because he was born this way. Limb loss and amputation are not the same thing as a congenital limb difference. So yes, he'll never know what he's missing. But will he know he's different? You bet he will. I've seen him see it already in himself, in how his clothes are on his body, and in how he moves things around. And I love it! There is so much fun and good to celebrate. But my caution is to not impose my experiences onto him. To not impress upon him this difference that he didn't choose, we didn't choose it for him, and that cannot be explained.

These ideas are complicated for me. It's the stuff I don't want to have to think about. But it really is the stuff of humanity. I want to tread lightly because I don't have a limb difference. I have a very young child with one and he hasn't expressed any of his feelings about it to me yet. And there are adults and children with limb differences that are perceived as "worse" or "better" than how #MightyWoody was born. And that's the rub.

None of it is better or worse. IT JUST IS. And that's why we have to learn to let go of the comparisons. I'll definitely be writing about this idea of IT JUST IS because that is part of my journey to release perfectionism.

But for now, my hope is that for my son - and for all of us - we can relax with comparisons of all sorts and instead celebrate that we are ALWAYS comparing apples and oranges and so there is really no reason to waste time comparing. Instead, I want to convert all of that churning anxiety that is born from comparisons into love and care for each other and our planet.

#LimbDifferenceAwareness
#BeautifulDiversity
#LuckyFinProject

(This is me and Woody moments after he was born)

 
LDA April 4.jpg
 

Keeping it light tonight...sharing a few questions we have gotten (or overhead as it was asked to another adult) from kiddos about #MightyWoody and his arm. There is something remarkably honest and simple about the way kids think about stuff. And to be perfectly candid, I've had some of these questions myself.

- Who ate his hand?
- Why did he eat his hand? 
- Ouch.
- Why does it look like a foot?
- Why doesn't he have two hands?
- How will he be able to do anything?
- Does he feel stuff?
- Does his arm fit inside his nose?
- Will he wear a glove? 
- When is his hand going to finish growing?

This last question is one I ponder a lot. The human body grows so much from when we are born to when we are adults. I have spent countless nights watching him sleep and thinking that he is going to split so many cells while he grows, so why can't he just grow the rest of his arm now or as he grows?

I've also learned a little bit about hands and am very curious to learn more. One of the fascinating things I learned recently while reading about work being done on robotic hands is that our hands have roughly 1/4 of the bones in our body. They are a very advanced piece of machinery that are linked to our nervous system. Our hands can do unbelievable things.

I am saddened a little bit by that because it makes me realize how versatile and nimble our hands are. At the same time, Woody has one hand that will probably end up doing overtime, and so I worry about it being overworked and want to see him learn to use the little bit of manipulation he does have in his right arm to help him. According to one of the doctor's we saw, people do everything one-handed, and the other hand is just there to help it out. While that is certainly an oversimplification, it has given me pause and made me examine my own behavior more.

For the record, from everything we can tell, it doesn't hurt him in anyway when he uses his arm. We are extremely grateful for this as we know it is not the case with all children who have limb differences.

And so far...Woody is not afraid to get around. He crawls. He climbs on chairs. And he has perfected what I like to call...the "scooch"- as you can see, he uses this one when he wants to be able to carry something.

#LimbDifferenceAwareness #DoingItMyWay #MightyWoody