I've been struggling to write this post. It's been four
years since I delivered my boys and sometimes it feels like yesterday. Some
memories just don't fade. I woke up this morning with a pain in my chest and I
think it's pure heartache. Heartache from what I lost, from what will never be.
Ryan and I put up a good front, but it's tough when we see little boys Ben's
age running all around and talking. We don't even have to say a word; a shared
look says it all... We should have two little boys running around and wreaking
havoc in our lives. I will never understand why God decided to take Stephen,
but I am forever grateful to him for letting us keep Ben and I try to believe
Stephen is by his side all the time.
I've also come to accept Benjamin for the amazing boy that
he is. As my dad says "he's our Ben!" Don't get me wrong, I'm not
ready to make my home handicap accessible, and I'll probably throw out my back
a dozen more times before I cave. At this point, I don't think he'll walk or
talk anytime soon. However, I do cling to the evolution of medicine and the
great strides we'll see with stem cell research within the next 5 years. The
possibilities keep me going in addition to Ben's awesome smile.
His smile will turn anyone's frown upside-down. Such a corny
saying, but it's true. It's absolutely infectious. Every morning when he wakes
up, I sing the same song to him and I always get that smile. It's become our
little ritual. He also smiles when he gets on the bus to go to school. No more
screaming and sleeping through the day while he's there either. An occasional
meltdown isn't out of the ordinary, but he knows what he wants / likes and what
he doesn't which everyone says is a good thing.
I can't say enough about his school. From day 1 I've been so
impressed. He's making small progress, but it's progress nonetheless. He's
lifting his head up more and more. He wears a somewhat bulky supportive soft
brace every day that makes a world of difference with his posture. He's able to
sit in a Rifton seat so he's not always stuck in his stroller (which I rarely
call it what it is, a wheelchair). Although his eyesight is still extremely
poor, he'll briefly fixate on objects in front of him and he seems to like the
color red the best.
The seizures (eye flutters and eye rolling) are still an everyday
occurrence. I think we've found an okay mix of meds to shorten the length of
the seizures while not doping him up too much. He's had two breakthrough cyanotic
seizures the past 3 months which were scary, but we're hoping they were illness
related since he had temps when he had them.
He loves laughter. The more we laugh, he laughs. A boy who
had what I compare to colic for 3 years can now chill. It's so nice to be able
to put him in his "special seat" while we eat. We had become pros at
eating with one hand! Which reminds me, Ben passed his swallow study last April
and can now eat by mouth. Two days ago he actually ate almost half a cup of pureed
pasta for dinner! Doesn't sound like much at all, but for Ben that's huge!
Speaking of huge, we have a big vacation coming up. We're
going to Disney!! Ben was selected by the Make a Wish Foundation. Jadyn is
beyond excited and it's just what our family needs. I'm nervous about taking
Ben on a plane. If our flight was later in the day, I would definitely order
myself a nice alcoholic beverage to ease my anxiety! Not sure I can do that at
7:00 in the morning though. Now that I think about it, might be nice to have people
staring at me instead of Ben for a change so maybe I will do it!! Note to self: ask Ryan how he feels about
possibly having to carry both me and Ben off the plane.
As Jadyn says on Ben's communication switch "that's all
for now!"
