The Grass is Always Greener

People very often point out how it’s easy to get lost in your own problems, focus on the negative things in life, dwell on what’s going wrong instead of what’s going right.  Well I have to say, the opposite is also true and can be equally damaging, especially in our household.  We’ve already been told that Aleck’s chances of walking without assistance are very good, to the point where I won’t even let myself imagine his life in a wheelchair.  Why focus on the negative or even acknowledge it when the chances are it won’t be our reality?  And his upper body has been making so much  progress.  His fingers have been unfolding bit by bit, we’ve found his elbows and he can make very small bends in them all by himself.  His shoulders have loosened up a ton and it seems like he’s reacting very well to the splinting, stretching, and therapies we’ve instituted on a daily basis.  It’s been very easy to get caught up in this progress, excited by his hard work, and as long as I stay in my home, loose myself in the day to day life of my smiling, laughing, happy, normal baby boy occupying all my time.

But then it’s time to venture out, visit friends and their children, have play dates with other mom friends who have babies close to Aleck’s age.  I arrive at shoots of new parents with their bundles of joy and at some point I get to pick-up, hold, this baby unencumbered by splints, casts, or braces.  Immediately I’m struck by how easy it is to hold them, move them, how naturally they curl into my arms.  I can’t help but be mesmerized by how their arms move, their fingers move, their legs move, knees bending, feet kicking, easily reaching out for anything that catches their fancy. To me they feel foreign, almost alien, miles away from what I now consider normal.

So then maybe it’s time to meet someone who’s a little more like us.  Dealing with some of the same struggles we are dealing with, working with our doctors, making friends with the ladies in Orthotics.  When Aleck was born we immediately discovered the one main support group for AMC and reached out in different ways.  My mother emailed them asking about families in our area who are dealing with Arthrogryposis and we were connected with a family in Palatine, 2 mothers working through all of the issues with their son, now 5 years old.  After months of emailing back and forth we set a date to get together, simultaneously eagerly anticipating and completely dreading this first meeting.  To prepare ourselves I asked for pictures of them and their son so we wouldn’t be taken by too much surprise when we met.  And even already knowing the list of different surgeries this poor boy has already been through we still weren’t prepared to meet their son.  He is truly a worse case scenario.

Adam* was born with his feet facing the wrong direction and I’m not talking about being pigeon toed.  He was also born with a cleft lip, cleft palette, one leg shorter than the other and didn’t move his arms at all until he was 6 months old.  But as his mom says, with a good hard swing, he can wack himself in the head.  His writs flex up yet are locked down and his fingers are very contorted.  Recently he had a tracheal tube removed so he speech is significantly impaired and he eats from the G Tube which has a portal in his stomach.  During the day he wears big boy underwear, but at night he wears diapers, and needs assistance going to the bathroom.  There is nothing to suggest that he isn’t an intelligent boy and his mom assures us he has lots of friends.  In fact, she chose to move back to her hometown knowing that they would have to stay in the same place for all of Adam’s schooling.  She wanted to make sure that he grew up and went to high school with the same kids so they wouldn’t think of him as being different or strange, but just as Adam since they will always know him like this.   Making sure that we have our roots firmly planted right before Aleck starts in the school system will be of utmost importance, and where that will be will greatly depend on how mobile he is, and on what the different school systems will see as his path for the future.  Will he be placed in Special Education classes, held back a year, or will he be able to enter kindergarten seamlessly with all of the other kids his age?  The answer to these questions will play a huge part on where we end up for his schooling.  Adam’s moms are already working with the school system to ensure he’s placed in mainstream classes but has an aid to help him overcome his physical limitations without disrupting the entire class.  It was very important to them that Adam wasn’t placed in Special Education since his intelligence is on par and potentially on a higher level than his ambulatory peers and that his special needs are only physical.

As we are all sitting in my parent’s living room I couldn’t help but constantly look at Aleck, feeling relived and even a bit guilty over how well he’s already been doing finding those elbows, moving his arms, and gripping with his fingers.  There was also a huge sense of relief that even though they technically have the same condition, physically then couldn’t be more different.   We started to talk about the conference in July in Indianapolis for AMC.  Craig had been talking for a while about how he wanted to go there with Aleck and meet other parents, other kids, see full grown adults who are dealing with AMC.  I’ve had my reservations.  Do I really want to be in a hotel filled with contracted limbs, wheels chairs and walkers?  Will it be too much to see how hard life is on so many of these people?  Adam and his mom have been to these conferences before and she said that one of the great things about them is that you see so many different types of people living with AMC there.  Yes, there are a lot of people like Adam, but there are a lot of Aleck’s as well, people who are ambulatory but still deal with AMC on a day to day basis.  I actually found myself perking up at the idea that we could find more kids who look and function like Aleck could look and function and maybe going to this conference would be a good idea.  However we did a flip-flop and Craig is now scared of facing a room of kids who look like Adam.

I’m filled with so much hope for Aleck, so much optimism about who he is and what he can accomplish.  There is a part of me that is scared to glimpse into what his future could really look like, I know I need my optimism to get us through these next couple of years.  It’s literally the fuel for my fire when I don’t feel like strapping on the splints or I’d rather just lie down and watch TV instead of working on his therapies.  Basically, I’ve talked myself into believing that his condition is treatable, that he’s already made so much progress we can only go up from here, that his fingers and elbows are going to continue to stretch out and one day when he’s running around the playground he’ll look just like any other kid, swinging on a swing, sliding down the slide, or climbing the jungle gym.  I imagine Aleck in high school, meeting new friends, going out on dates, and it’s only when you look closely at his hands, only when you watch really carefully how he moves his upper body that you’d ever know anything was off.  I imagine telling him about his condition, about how he overcame so much of it, and now he only has small remnants of slight twisting to a finger or two to remind us of how far he’s come.  For my own sake, I need to imagine that he’s just a normal kid almost physically indistinguishable from the rest of his class.  Adam’s parents can never imagine that for their son.