Friday, June 15, 2012

Life with Finley, 10 month update

I love my son.  My heart, my soul and my entire life is dedicated to his well-being and happiness.  Let's just get that out there right off the bat. I'm positive that anyone who knows me and is aware of how my son came to be would never question this - not for a minute.  
And, even having gone through a thousand hours of pain, worry, heartache, anxiety and fear I would not trade him for anything… and I mean anything because that would make him a different child and I don't want a different child, I want my Fin!  Ok, now that that's been established I shall move on to the raw reality of having a child with special needs.  And, no, he doesn't have special needs in the way that the average person thinks of as special needs.  He is not neurologically impaired and he's not, for example, confined to a wheel chair, so I do realize that there are many families out there who have it worse off than we do and I'm definitely sensitive to that fact.  However, I only know what it's like to care for my son and it's from that perspective that I write these words.

Fin is fed 100% via his gastric tube (g tube). At this point, he doesn't take anything by mouth.  Following his surgery to place his g tube and the nissen fundoplication to correct his severe reflux, he suffers with horrible retching and gagging.  Now, I could write a book explaining why he ended up with the feeding tube in the first place, but suffice it to say that it was and still is absolutely necessary.  His feeding schedule is relentless.  He can't tolerate large volumes of food so we have to feed smaller amounts more often.  That, in combination with his GI issues and poor weight gain has basically made our lives centered around eating.  

Fin, during a tube feeding.
I guess the best way to explain our struggles is to imagine a typical newborn.  A typical newborn begins eating almost immediately.  They exercise their natural inclination to suck and swallow and nourish themselves without hesitation.  Yes, some babies take a little longer to get the hang of it and some prefer different modes of delivery, but successful eating is usually the result and moms can pretty much go on about their lives not giving it too much thought.  In Fin's case, he was not able to try to eat by mouth until he was 7 weeks old… he was not even held until he was 6 weeks old!  His entry into the world was tumultuous and the first several weeks of his life were like a war zone.  His throat was literally assaulted with tubes.  Fast forward to 10 months of age and he protects his mouth and throat like a most sacred place.  His therapist calls this part of his body "hallowed ground".  If this post is going on too long, please hang in there, I get to the heart of things another paragraph down.  ;)

In addition to the feeding problems we also have some developmental delays due to his long hospital stays.  Again, imagine a typical newborn baby that comes home from the hospital a few days after being born.  In normal day to day living, this child is passed around from mom to dad, rides in a car seat, rides in a stroller and is placed on a changing table.  Normal movement that takes virtually no thought.  The vestibular system, or inner ear, is engaged and the child learns that "movement" is nothing to be fearful of and things like reaching, sitting up, crawling and then walking happen organically.  In Fin's case, these natural progressions did not happen organically.  He was literally on his back for the first 6 weeks of life and when he was able to finally be held, he was still chained to his crib with all the monitor wires and oxygen and wound vac tubes… he was either in his crib or held on my lap and that was about it until we finally brought him home at 3 months old.  Bottom line, he has some sensory issues.  He has gotten past his fear of sunlight (yay!) and now loves being outside. 

He's never really had too much trouble with touch or sound, but he's by no means typical in that regard.  His biggest problem is with movement.  Without going in to too much detail, he has 3 hours of therapy a week and we do structured daily play that helps him to strengthen his muscles and overcome his fear of movement and positional changes.  There was a time when we could only hold him in one certain way and now he tolerates different modes of being held.  He sits up beautifully and even reaches so far that he topples over, which is for him, is a huge milestone.  He rides in a grocery cart and sits in a high chair at a restaurant like a little champ.  These are things that don't really sound like that big a deal but for Fin, they are miraculous. 

Fin at Whole Foods... he loves riding in the cart!
 If you've made it this far and are still reading, now is where I get to the heart of what I'm trying to say.  Deep breath… being Fin's mom is hard and sometimes I feel a bit trapped! (Refer back to the beginning of this post where I talk about how I love my son).  Yes, in my case it's probably a bit harder than what the average mom has to deal with.  But, in general, being a mom is not all "running through a field of wildflowers with the wind blowing through my hair".  Even though Fin's milestones are different, it doesn't change the fact that all moms worry, "is my child verbalizing at the right time, is he crawling at the right time?"  etcetera etcetera.  When we go out, Fin is always so bright eyed and so visually curious.  People are so drawn to him and inevitably ask me how old he is.  He's quite small for his age, so when I say he's 10 months, I get an "ohhh really?"  Recently, I decided to lie and say that he was 6 months old, which I suppose is more believable for most people, and the response was "oh he's so advanced!"  Stupid, right?  I won't be lying about his age again, because in no way am I ashamed of where he is developmentally.  

Fin, in his '"tub o' beans" working on sensory therapy.
Considering where he's been and what he's accomplished, he's exceeded all expectations.  He's thoughtful and curious and ridiculously courageous.  His Occupational Therapist recently commented that he is an old soul.  Sometimes you can see it in is eyes that he's been here before.  Through one of the windows in our living room you can see a palm tree that sways in the breeze.  I catch him gazing at that tree all the time.  He looks at it with this very calm and peaceful look usually during therapy when he's being asked to do something that is particularly difficult.  Don't get me wrong, he's' not always calm, he struggles and cries and protests…. but in his heart he is wise, courageous, fierce and humble.  I use the word humble because I believe that he doesn't take anything for granted.  And that is one of the biggest lessons I have learned from him.  So, the next time you're worried that your child isn't on the highest percentile on the growth chart or hasn't quite reached that latest "milestone", remember to look in his eyes and see him for who he is.  Fin surprises me every day and when I look past the hardships, I'm able to delight in every little thing he does.  He's my perfect little rule-breaker and I wouldn't change a thing.  I love you, my little love bug.