You never really know what you have lost until you realize that it has gone. The thought that I could have two little boys with special needs, who are not able to speak; still doesn’t seem real to me, but it is. I love them equally, love them just as much as before, maybe a little more because I know what may lie ahead as I have been travelling this road now for almost six years.
With Conor it was obvious straight away there were huge problems that somehow amplified as often as each day came to a close. It was almost as if we were waiting for the news for someone to just tell us why. The shock that came with his diagnosis was life changing but in a way it brought closure eventually for all the questions that had been left unanswered.
With Jack I made a mistake. I am not sorry now for that mistake as at least for a little while we had real hope. The mistake I made was that I hoped and I believed he would talk, he would not have special needs. He would say Mama, he would call out for me at night when he woke, run up to me when he needed me, grab my hand, hear me, know me, love me.
I am not sorry I had those hopes, I still do, I hold tightly on to my hopes and dreams for the boys but they are tinged now with the sadness that reality brings.
This week will be a tough week as we will finally have in black and white Jack’s full diagnosis, in print, black and white words telling me and anyone who needs to know that my most lovely Jack has Special Needs. In a way the fact that I already know that come Thursday morning I will be handed a list of all his problems and prognosis doesn’t make it any easier, maybe a little worse.
With Jack he has never slept a full night ever, he did say mama, dada for a little while. He hasn’t said mama now for almost 6 months, he may randomly make “Mmm” sounds or out of the blue shout dada when he is mad but not to anyone or about anyone. It brings a blanket of sorrow that lays heavy on my heart as I am almost too afraid to keep hoping that words will come in case they don’t come back.
Jack met many of his milestones on schedule then just before 18 months the regression started and I knew.
His words faded, he stopped recognizing his own name, wouldn’t play any more, that sparkle in his eye faded more each day when I could catch it I would stare and hope to never forget it in case it would be the last time I would really see him.
He is obsessed now with lining objects up. He is so happy when he line things up properly I help him. He always has to have two of the same objects in his tiny little hands as they make him feel safe. So I always have a little supply in the press ready for him in case he can’t find any in his toy boxes.
I spent ages yesterday lining up blocks with him. He would smile away to himself when we got them in the right order and it warms my heart to think he is so happy just then. Sounds so silly to even write that but to just spend another moment in his smile I would line up every block I could ever lay my hands on to make him happy.
This week will be tough because when I read that Report it will challenge all my hopes and dreams for my lovely Jack. Reading that Report will be like officially starting over with Conor but now with my lovely Jack, his first ever real official paperwork will say he has Special Needs. It will break me for a little while, the tears will come, it may take my breath with it for a while but not for good.
I will always have hopes and dreams for Conor and Jack as I did when I first held them close to my heart on the nights each were born. They are still the same handsome boys I love and will love forever. I may be starting over come Thursday morning but I am not alone this time, Conor and Jack will each take my hand to guide me home.