I had a moment the other day. I realized just how far Luke has come, how much progress we have made. We were sitting down for dinner and I knew that it was going to be a battle, we were having grilled chicken for dinner and he was going to have to eat it, gasp! mean, mean mommy! We had been focusing so much on potty training I had let the whole food thing slide, but now it is back to the food.
So I put the chicken in front of him and the tears started, then the gagging started just from looking at it. So then 10min later I got a piece in his mouth and the retching started, I really thought he would throw up. (Sounds like progress right?) But then, I stayed calm, he eventually stopped gagging and ate the freaking chicken. To have been able to talk him down, to keep the food down when he had been fighting so hard, THAT my friends is real progress. I started thinking about all the other areas of progress he has made, how typical he now is, how not a lot of people would even know the struggles he has had. It made me think back to the beginning....
I have never had easy pregnancies, this one was no exception but still to me better than the first, no life threatening blood clots anyway:) I ended up on bedrest around 22weeks, in/out of the hospital a few times but we made it to 35weeks. He only stayed two weeks in the hospital and then he was home, boy was he ever home! He was a fussy, fussy baby and that is putting it nicely. I remember a few weeks in thinking he had a weird, high pitched neurological cry but I told myself to stop being silly. He had a milk allergy, ridiculous reflux but we finally got all that worked out by 4months. He never ate very well and as time went on he had trouble meeting his milestones. We started speech therapy at 7months, then physical therapy for low tone, and then we ended up in a neurologists office.
I will never forget those visits. I knew deep down that something wasn't right, that they would find something. I just knew... We had an MRI and then he was diagnosed with a brain injury and mild cerebral palsy. Hindsight tells me that I should have focused on the words mild but the fear that lodged in my heart at those words, the pictures running through my mind, that is something I will never forget. I remember taking a breath and asking OK, now what? I threw myself into doing every therapy they would give me, every exercise, every little tip, I would do it, we would do it, we would get through this. And we did. Month by month things improved and progress was made. It was hard. Everything he did in the beginning was hard, he had to WORK at everything/ eating, walking,talking....One of the things I love the most is his determination and strong will. God knew what he would go through and gave him just the right amount of attitude. (I have a love/hate relationship with that attitude some days, just being honest)
I think if I had known how things would all turn out in the end that it would have been so much easier, but that is always the way. The growth and the lessons are always in the journey itself. We are so incredibly blessed that he is doing so well, that those struggles were so mild compared to what so many others go to. I see others at the specialists offices and I say prayers for them all the time, we truly are only tasting the road that some families walk. However, this has been our road, and for us, it has been a struggle.
I remember a friend telling us early on about control. His son has Down Syndrome and he was so encouraging when we got our diagnosis, when we felt like life was uncertain, when we didn't know how things would turn out. He told us that parents of special needs children lose the illusion of control early. Parents of typical children often are fooled into thinking they are in control of those little lives, that this action will beget this action, that we are in charge. I know we felt that way with Jack. He said that the illusion is shattered in early teenage years but especially in the beginning the illusion is there. For kids with special needs there is no illusion. You are thrust into a world of unknowns, a world that we knew nothing about but were a part of just the same.
I think it was a blessing in the end, not a blessing I welcomed with open arms for sure. I think our faith grew exponentially. I learned that our marriage was strong, maybe not pretty at times but strong. I learned that joy really does come in the morning, that the nights were long but morning always came. I learned that I have a lot to learn, that my faith is deep but my sin nature is strong. I still held (still hold onto, sigh) on to the belief that if I just did things a certain way things would turn out okay, that life would go the way I wanted, if I just controlled every little thing then.....I am a perfectionist by nature, I have systems for everything, that was the hardest. I have learned to let go, that God is big enough, His grace is sufficient. I learned that there is a lot of truth to the saying when life gives you lemons make lemonade. It is sour and tart, but when you add in the good things like sugar and water, it is good. That when God works through a situation He turns it into something beautiful and refreshing.
I have just been thinking a lot lately about where we have come from, where we are going from here. There are so many unknowns right now, we really don't quite know how things are going to play out. I know that it will be okay though, I don't have the answers and I don't need all the answers. I still fight to get them, I still struggle not knowing them but I have a peace. A peace that has been learned and bought at a price. Here is to you Luke! My beautiful teacher, my beautiful boy.
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