This post comes on the heels of Drew’s newest accomplishment of swimming across one of those circular above-ground pools while coming up for air between strokes. I wish I could post the video directly here, but there is an extra annual charge for that so you’ll have to visit YouTube here to see it. It’s hard to tell, but he does, in fact, swim from one side of the pool to the other. He’s swam before, but this is the first summer he’s been able to get his face above the water’s surface on his own.
My favorite part, which isn’t on the video, is when he decided to swim back to the other side. His Yaya, with whom he’d been swimming with, acted as his launching pad. He stood on her hands, underwater, and Drew would “dive” off. However, much to Drew’s dismay, Yaya would instinctively provide a little boost. But, Drew would instantly return and would reprimand her. “You’re cheating! I want to do it by myself!” He would not complete the pass until he did it with no help.
That statement, “I want to do it by myself!” perfectly epitomizes Drew. From the very beginning, Drew has always been independent and determined. Perhaps it’s nature. Having been born with limb deficiencies, maybe he has an innate instinct for survival. I guess you could call it the “fight” response. Perhaps it’s nurture. Daddy and I agreed at the beginning and have been stalwart advocates that Drew figure things out on his own. We both new that it would be a huge disservice to him to make him a victim of TAR Syndrome. Even as a young toddler, we rarely intervened when Drew struggled with a task. He would fumble with an object and wouldn’t immediately accomplish his end goal. Sometimes an object was seemingly out of reach, even being at his immediate side and as parents watching we wondered how he’d be able to reach the toy with his short arms. He couldn’t lean forward far enough to reach it, could he? As hard as it was for us to sit back and watch him struggle, we resisted the urge to do it for him. We would have to sit on our hands sometimes it was so tempting to just go pick up that toy for him. But, we stepped back knowing it would be important for him to learn to adapt. And, he always did. His therapists always commended Drew for his patience, a trait that some people with limited mobility don’t have (he certainly didn’t inherit the trait from me. It has to be his Daddy.)
That has always been our game plan with Drew. And, we’ve always made it clear to those around him that that is how we want them to interact with Drew as well. Anyone that has spent any time with Drew has gotten the “Let him do it by himself” speech from me. We worked hard to ensure his independence and determination flourished at home and we didn’t want anybody to undue it. Not that I thought people were malicious or uncaring, but I understand the perception of inability and I know it’s very difficult to watch a toddler fail at something multiple times. I just had to reassure them that he would fail a few times, but he would eventually do it. He always did. And, that satisfaction of overcoming his disability would be far greater than having something handed to him.
It was also important for us to instill this in him because with such a striking disability, I had to accept that at some point in Drew’s life, he’d be the target of stares, pointing, judging and my worst nightmare, bullying. I wanted to build his confidence to a level that would help compensate for some of the emotional beat downs that bullying may inflict. My hope is that we’ve boosted his confidence and self-esteem through allowing him to figure things out on his own enough so he’ll be able to ignore taunts and proving bullies wrong, thus shutting them down.
What I didn’t expect though was such a warm welcome from nearly everybody. Not a day goes by in which we are out and about – a park or shopping – when a kid doesn’t spot Drew and shout with glee, “Dreeeeew!!! Hey man!” They give him high fives and they chat. Drew is the most popular boy I know. I am proud of our community for being so receptive of Drew and the friendships that Drew so easily develops. I really feel like he’s made friends for a lifetime that will always have his back and shield him from any negativity.
I’d like to think that all of this is what has helped Drew be an overcomer. Drew has overcome more in six years than many adults have in a lifetime. Let’s start with the obvious: his arms.
Drew has short arms, no doubt. Even on the TAR Syndrome spectrum, his arms are short. There’s long arm TAR and short arm TAR (these are not official medical terms, these are terms that we TAR parents use). Many people with TAR do have forearms (the part of the arm below the elbow). Drew would be considered short-arm TAR. He doesn’t have a forearm (ulna or radius) on either side and is asymmetrical in the fact that his right arm has a shortened humerus (the bone between the shoulder and elbow) while his left arm is much shorter without the humerus. I don’t know the statistics regarding the occurrence of short-arm TAR and long-arm TAR, but Dr. Paley has said that Drew’s shortened arms alongside his leg anatomy has made him a one-in-a-million occurrence.
It’s also obvious upon inspection of his arms that his fingers aren’t like yours and mine. I’ve never pursued detailed investigation of his hands, but his fingers appear to be missing a joint since he can’t completely close either hand into a fist. Both of his thumbs are what’s called, hypoplastic meaning they are underdeveloped. Since he doesn’t have a radius bone (the defining feature of TAR – which is an acronym for Thrombocytapenia Absent RADIUS) on either side, he has little to no movement of his thumb since they aren’t connected to the ever important radius. They rest unused in the palms of his hands (if you use your hand to demonstrate “four” as if you were gesturing to somebody that you wanted four of something using only you fingers, this is how Drew’s thumb sits naturally in his hand.) I’m sure he’s got to be missing bones in his hand and wrist. And, though I’ve never asked, I think that his shoulder and upper back might be anatomically different.
Because Drew is missing his radius, he’s unable to rotate his hand upright as if to accept something into the palm of his hand. I never knew that the rotation that we have in our hands, our ability to turn our hands palm-up, was the work of the radius and the ulna. Since Drew lacks these bones, he’s unable to put either hand palm up. I have also noted that Drew is unable to lift his right arm up (his left side just contains a hand so to try is moot) higher than shoulder level. When he scratches his ear or raises his hand in class, he has to curve his chest and abdomen and turn upward to compensate for the inability to fully raise his arm.
He’s stronger and more adept at using his right arm though he’s not completely inept at using his left. He uses in fingers in the cutest of ways holding things between his index and middle fingers and occasionally between his middle and ring fingers. He points with his middle finger. You should see him use his fingers to count. So adorable. And, when he does the chicken dance and gestures with his fingers. It’s too much. You have to avert your eyes from the cuteness.
Truth be told, I think his little arms are adorable. When he dances or uses his hands for everyday tasks, I just can’t help but think how mind-numblingly adorable he is doing it. With thoughts of arm lengthening or other corrective surgery, I’m on the fence about his future choice of surgical intervention because his arms are what makes him so grand in my eyes.
So, with these short arms he’s surprised many with what he’s able to do. A short list:
- brushes his own teeth
- feeds himself (most items. Foods like hamburgers and pizza must be fed to him.) He is able to use a fork and spoon
- Plays Playstation video games like a boss. He uses a standard controller.
- Manipulate any of his toys: activate sounds, pump-action, press buttons, build, flip switches, etc.
- Writes and colors. In fact, his kindergarten teacher told me that she often uses his handwriting as an example of excellent handwriting examples!
- As I mentioned before, he can swim and can even come up out of the water for air, albeit for just a second.
Some things he needs help with, but I’m confident he’ll learn to manage. Just try having an itch on the top of your head or the bottom of your foot and not being able to scratch it. Just think about that place on our back that we can’t quite reach when it itches and its maddening effects of persistent irritation. And, I can’t tell you how many times Drew has asked me or Daddy to scratch him in areas that you typically don’t have anybody but yourself scratching. Yeah. Drew’s inaccessible area is much wider. This is where a back scratcher comes in handy.
I mentioned before that he’s a top handwriter, but he does experience hand fatigue quickly. One day, we’ll be able to incorporate special devices to help him dress himself and for bathroom needs.
All in all, his shortened arms have been little issue. He’s always found a way.
Though there have been times that he’s questioned something that highlighted his limb deficiency. Such as, he once asked, “Will I be able to climb a tree when I’m older?” As a person with normal arms, I am unable to see how one could do it, but I was born with my arms so I can’t possibly think how I’d do it without them. I, of course, told him that he could definitely try and if he practiced and worked hard at it, I bet he could do it. I’ve always been extremely careful to NEVER say, “No, because you have short arms.” I have never faulted his arms for anything as I don’t want to undo any of our effort of instilling confidence and a “can do” attitude. This was very difficult the other day when Drew asked, “Can I be in the Army?” From my knowledge of the US military, people with disabilities including limited mobility aren’t eligible for military duty, which I’ve always considered a plus since I’d never have to worry about Drew going to battle. But, how can I answer his question without making him feel inadequate? Ugh! I wish I had a wise answer but I took the coward’s way out and said, “I don’t know…maybe one day.”
Now, his legs. It’s no secret that he has mobility issues with his legs. He was born with rotation below the knee and contractures that prevented extension of his leg. These distortions of his legs prevented him from standing or walking. But, he overcame that and even before the surgeries he was mobile. Soon after learning to sit on his own as a baby, he learned to thrust his hips forward and would inch along. That soon evolved into his beloved “booty scoot”. Hopping on his butt, he could keep up with his peers and was so endearing. (Side note: as happy as I am that he’s walking now, there are times that I dearly miss that “booty scoot”. I, of course, have it documented on photo and video and I tear up watching it. Watch below)
Who would have guessed that he would be as mobile on his butt as kids were on their feet? He was even able to swim before the surgeries. He even used his feet as hands on occasion. He would use his feet to transfer an object from one hand to the other, he could pick things up with his feet and bring it to his hands. When I think about him doing that stuff before surgery, as he doesn’t use his feet this way at all since the surgeries, it reminds me of how amazing he is.
And, those are just the physical aspects of his body that he’s overcome. He’s also been poked and prodded more than me or Daddy combined our whole lives. I can’t even begin to estimate the number of needle pokes he’s had. Think back to when you were 3-6 years old and that terror of that mean ol’ doctor coming at you with a needle. Chances are you experienced terror the likes of Laurie Strode.
Drew has had so many surgeries that I find it difficult to even count them:
- Open heart surgery 2009 just before turning one year old
- Six corrective leg surgeries (this links to the post after the very first leg surgery)
- Open heart surgery 2013
- At least three surgeries to place/remove ear tubes
- Sigmoidoscopy and colonoscopy
And, I think I might actually be forgetting a couple because Nathan and I counted a few weeks ago and I think we got to around 15.
Don’t forget that there is another surgery for Drew on the horizon. We leave next week for Florida for yet another surgery. More to come.
During the surgeries, Drew overcame insurmountable pain. His chest was cut open and rib cage pulled apart. It was so invasive and traumatic to the body that we weren’t even allowed to pick him up from underneath his arms for a full six months afterwards. Drew wore a heavy, rigid, metal device on each leg for three to five months. Each device was slowly, painfully twisted and turned on a daily basis rendering him writhing in pain. Meanwhile, undergoing extensive and strenuous exercise on the very leg with thick metal pins drilled through skin, muscle and bone. Therapy was so strenuous that a bone was actually fractured during a stretch. If nothing else I have said illustrates how difficult the leg surgeries were then I hope that the fact that his leg was broken – slowly! – during a routine stretch shows what Drew has overcome (ack!!! I still get the chills thinking back to that moment! Ugh!!!). And, Drew’s daily life didn’t consist of the standard 6-year old fare. Sure he got to enjoy toys and hide-and-seek outdoors, but unlike other kids his age, he was undergoing daily physical therapy for over two years. A responsibility that no 6-year old would enjoy.
After the corrective leg surgeries that left his legs marred with scars and atrophied muscles, Drew exercised and pushed to rebuild his strength and stamina. Slowly but surely he bounced back from the surgeries. He stood by himself, fully extended. He began to walk in a gait trainer. And, then he took his first steps. Ever. In his life. He walked. Today, he walks and “runs” places we’d never thought we’d see.
If anybody is ever feeling pessimistic, unmotivated, uninspired, disadvantaged they only have to look to Drew. Even after all that I have described to you, Drew is a shining light of positivity and happiness. He makes instant best friends. He’s always smiling. He’s ambitious and thoughtful. He’s clever. Mature. Funny. He always looks on the bright side. He is a real likeable little guy. He truly is a miracle. He has overcome pain, surgery, disability, perceptions, limitations, the list goes on. He’s six years old. He overcomes and carries on.
On another note, we are a week away from our next trip to Florida for yet another surgery. This one due to a stress fracture on his left leg. He’ll have surgery to correct the rotation by placing an internal plate and then casted so poor Drew is going to spend the rest of the summer in a cast. Bummer. Daddy and I were discussing the trip and I just had to say, “You know, here we are taking about flying to Florida…not for vacation, not to visit the beach, not to spend some quality time together and enjoy a new place, we’re going to Florida to have more shots, surgery and a cast. That can’t get wet. Or sand in it.” 😐