"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Tuesday, March 11, 2014

March 11, 2014

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!"