How We’ll Always Remember 12/12/12.

I’ll always remember the date 12/12/12.  It was the day we found out Noah has Lowe Syndrome.  As you know, I’ve suspected it for a long time and we finally had him tested.  I was on the way home from taking Isabella to school when I got the phone call from the doctor that the test results were finally in.  I decided to pull off into a shopping center while I got the news just so I could concentrate on what I was hearing and when I heard it was positive for Lowe, I broke down and cried.  I knew I would.  It’s one thing to suspect.  It’s completely another when you know for sure. 
I waited until I got home to tell Jeremiah, so we’re both in a mode of realizing this is real and our son has a syndrome that could give him an early death.  No one wants to see anything “wrong” with their child.  I know he’s developmentally behind and he has Glaucoma but he’s also the happiest baby I’ve ever encountered.  The way he grabs my face and gives me (his version) a kiss on the cheek or how sometimes when I’m holding him, he holds me tight, like he never wants to let go.  I know that’s Noah’s way of telling me he loves me.  His sweet, sweet, smiles and laughter, and the way he loves on me, I can’t really ask for more.  I just don’t want anything to hurt him. 
Now, I guess we need to continue seeing doctors to monitor his health but now my mission is to find out if there are other doctors he needs to see and we need to get him on the right diet.  He’s still having issues digesting and going to the bathroom.  It just breaks my heart to see he wants to go and he just can’t.  We went through that again last night.  I have begun putting a tiny amount of kids laxative in his Pediasure, just so he can go but I hate doing that.  I want to know WHAT he needs to eat just so he can go to the bathroom like a normal child.  Just changing the flavor of the Pediasure stops him up and I just don’t understand that.  Well, I guess I somewhat do now, knowing his has this syndrome and that must have something to do with it since he can’t eat food normally like other babies and digest it the way he needs to. 
I’ve been in the mindset of “He may have this syndrome” but now I’m trying to readjust my thinking to “He does have this syndrome” and go from there.  My husband and I both felt we were in sort of a fog yesterday, trying to digest what we had just found out.  Well, that was after the tears from both of us and each wanting to take some blame as to why Noah has this syndrome but we both know we didn’t cause it.  It’s just one of those things that if we could, we would trade places with our son in a heartbeat.  Period. 
All I want for Noah is to continue to be a happy boy and to always feel loved.  This blog will continue.  Now, it will be about how he’s doing with this syndrome and the road(s) we travel to get the best care for him possible. 
Thanks to all who have read this blog and kept up on his progress.  Please keep him in your prayers.  He’s the sweetest little boy in the world and deserves all the love we can give him. 
Trying to stay in the moment, Jenna