Special Needs

Many months ago my husband and I made a decision. It was possibly the biggest one in our lives. We decided to add another child to this home. Not just any child. We held our breaths and jumped into the Special Needs line. I have to say that now, it was easy. Really and truly easy.

I knew in my heart that we could do it. I will not go into the dark days we had while filling out the Medical Conditions Checklist- some things are just ours. I will say that you can have some pretty awful moments when you look that closely at your own flawed heart. Mostly it was the worrying over this and that. What procedures would be needed- that sort of thing. But after that MCC, it was good. It felt right.

You now what? It still does. Easy in fact.

I am not trying to belittle the physical state of my son's "Need". He has a very significant cleft in that mouth of his. And as a matter of fact all of my false hopes for " a tiny hole" or " maybe it was already fixed" have been dashed. I have had a couple of rough afternoons when the reality of just how bad his speech situation is going to be. It's like this, if that boy is saying anything that resembles English, it is so garbled and scrambled that we have no idea. My heart broke for him today because I realized that he was pointing at a picture on my wall and I said,  " oh yes that is a picture" and he made a sound that I KNOW was meant to be "picture". But it was not. I looked at him and the light in his eyes and I realized that he did indeed say "picture"- just like any child his age would have. But if I had not been looking really hard, right there at that sweet little mouth? I would not have any clue that he is trying his damnedest to meet us half way. And that was the saddest moment of my life. Because I saw this big hill in front of him and I know that he will have to climb it.

What I am trying to say is that the loving him is easy. The choosing to care for him is and was easy. The hard part is going to be watching him fight and struggle to be understood. Before we met him, I would read blogs about children with clefts and how they struggled terribly with their speech and I would think "Liam's speech won't be that bad". Naive? Yes. 

Because the fact is, his speech is that bad. I have come to terms with that and I have set my heart to fight mode and I will struggle up that hill every bit of the way with him and I will be proud and happy to do it.

We have yet to see a Surgeon (it's scheduled) and we have yet to see a Speech Therapist (working on getting it scheduled) so, in our daily lives right now? There is no "Special Need". Physically.

I do however find myself looking at the fact that you just don't get a post-institutionalized child home and find them unscathed. The fact is that I thought Liam was "better off" than Ev. And, yes, I am going to say it, in many ways, he is. It's that he's not as well off as I originally thought.  He is hurting. He worries. He wonders how long this will last. He laughs and charms his way through the day because he feels so insecure. He needs me to smile at him so he can feel like the next few minutes will be okay. 

I have found a streak of stubbornness in this child that is a thing of biblical proportions. I know in my heart this stems partly from personality but also partly from pain. These children MUST maintain a certain amount of control. They MUST. 

And so the need I find myself stepping around and fretting over has nothing to do with the cleft in his mouth, it's the cleft in his heart. And there isn't a surgery or a referral or a vitamin or a therapy for that. It's just us and him, stacking time together. Smiling and loving and being as predictable as we can be so that one day he will decide that no matter what, he can not rid himself of us. We are in this for the long haul and he is the only one not in on that secret.