Then, on the fateful day of June 3rd that our little guy was going in for surgery--specifically for a tracheotomy and a g-tube--we heard the diagnosis: Marshall-Smith Syndrome. Wait a minute--how can he have a syndrome? His genetic screening came back normal! And the kicker: the gene mutation for Marshall-Smith Syndrome hasn't been identified yet (clinically), but Kai has all the markers.
I remember our grief, so raw, and they asked us once again if we wanted to continue--continue letting our little boy live. There wasn't much hope for a future, and many believed even with all the intervention, that he still wouldn't make it. J and I had discussed, sought council, and prayed about Kai even before the diagnosis. We knew without a doubt that there is a reason he has come to us, and we would take care of this precious spirit as long as he wanted to be with us.
Honestly, at times even we doubted he would make it to his year mark. Those first few weeks it really seemed to be a daily struggle for Kai. As he put on weight, he was able to get a little stronger. Once he had the trach, we were able to wean him off the ventilator before he was sent home. We had a few months of "peace" before he started going into his "blue" spells. During that time, which happened to be around the holidays, I started having the feeling that he wasn't going to make it. In fact, February kept popping into my head, and I went into a mild depression. Our insurance was telling us that we didn't have enough points to keep our night nurses; there were times that he would be turning blue every five minutes. Add to that he would scream every time he pooped because his poop was so acidic that it caused his bum to bleed. Those were rough months--I remember times when I would just cry as I begged Kai to just "breathe, please breathe" as I was doing everything I could to get his color back. I would change his bum with him screaming and writhing and turning blue, just to have to do it again five minutes later as more poop came. There were times that I would literally be changing his bum for over half an hour period--I would change him, not even get the next diaper on and more would come out.
Despite all that, we fought the ventilator just as much as Kai at first--even though we knew it was the right decision. It wasn't until they discovered the tracheal-bronchialmalasia that we finally accepted the ventilator; I still believe that Kai wouldn't have made it past February without it. Since then, he has thrived.Not to say we haven't had our hiccups since then. There was his eye injury in the hospital, the surgery to close his eye so it would heal and the resulting amniotic membrane popping out, his spinal surgery, his g-tube popping out, and little incidents in between it all. In fact, we had an incident just last week where his trach got plugged and we had to do an emergency trach change.
Even with the hiccups along the way, our situation has dramatically improved. With the addition of the ventilator, we were able to gain enough points to keep the night nursing and we got bumped up in the list so now we have daytime respite hours available throughout the month. Suddenly, we have a semblance of a life again and we don't have to wonder on a daily basis whether today will be the day that we can't get him breathing again.
Amazing how much can change in just one year. In so many ways it feels as though this last year has been a lifetime. Learning, accepting, growing.
While Kai may not be doing what 12 month old children typically do, he has come a long way in the last several months. He is smiling, has managed to vocalize (coo) past his trach, he can roll from his side to his back--back to side, his legs are strong enough to support his weight, and he has a strong core. He cannot hold up his head for more than a few seconds, but he makes an effort. The neurosurgeon said that it could take several months, but with the spinal surgery, we should start to see an improvement in his motor functioning. He loves to blow raspberries and suck on his fingers but refuses anything else in his mouth. He is most content when being held and rocked. Lately he has been taking blankets and soft toys (if they are placed into his hands or near his head) and snuggling them into his face. The softer, the better. He will snuggle right into a blanket and fall asleep. He has a habit of thumping his legs when he wants to be held or is upset, but will instantly smile once he is held.
Now, I want to show my special boy to all the world. I want him to experience all this life has to offer--within his own capacity, of course. He may not be able to swim, or play basketball. He may not understand physics or go to college. I understand that he won't be able to fall in love and have a family of his own. He will never be able to be independent and live on his own. He may not live to adulthood.I have accepted all that, and in that acceptance has come a new understanding of what it is to be a mother. In having this special boy I have learned about true unconditional love. I am proud of the little accomplishments that he makes. I still have hopes and dreams for him, but they are different. Each day with him is a gift and they joy he has brought to our lives is immeasurable.
Happy 1st birthday, Kai!
