I try and keep this blog only about Galactosemia . . . so parents have a place to go to only learn about Galactosemia. There are things going on with Gregory that may or may not be related to Galactosemia. I haven't been posting them as much but I think I need to more in case other parents are experiencing what we are. Maybe its just therapeutic for me to write it . . .
Gregory was diagnosed with Sensory Processing Disorder at one time. I think he is more mild to moderate with it. He will be getting evaluated again so we'll see what a second opinion means. To learn more about this go to http://www.sensory-processing-disorder.com/
There is too much to go into about it now . . . hopefully you will learn more about it as I share more . . . I really only wanted to use this post to share a moment(s) I had with him today.
To put it mildly . . . Gregory needs to feel everything "more". Certain things just set him off. Or he'll need to just come and push me really hard from behind. I am not a "rough" person by nature so I would take this personal even though I knew he wasn't making it personal. It would hurt my feelings. I have since gotten over that and recognize it for what it is . . . his body isn't getting the "rough" in put it needs so he's satisfying a need. Nothing else. So that was good. But then there was the, "No mommy, stop. Go away." when I'm in his presence . . . and other "hurtful words" (i feel silly saying my 3 yr old is hurting my feelings but you know what I mean.). But for the first time today I didn't take it personal. I can't. I know he loves me.
One hard thing for Tommy and I has been that he hasn't been into the snuggly type of touch and cuddling. We are very much this way and to not share that with your child is really hard. We're not getting that physical need that we need.
This morning Gregory woke up and crawled in bed with me to watch cartoons while I had coffee and read my magazine. I asked him if he wanted to snuggle a couple times and he remained on the other side of the bed sucking his thumb, holding lamby and said, "No, my side." in a stern voice. Then 10 to 15 minutes later he slowly scootches over to my side and gives me a big hug. That moment will hold me the whole day. Its has to. Who knows when I'll get another moment like that. I didn't realize how much this was bothering me until I'm sitting here typing with tears rolling down my face. I love the moments when we are out and about and the only way for him to get out of the truck (because he's too scared) is to hold on to me and I put him down. I look forward to this each time as I hug him really tight and a few seconds too long. I miss him. I keep telling myself that this too shall pass.
I know I should proof read this right now before I post but am crying too much. But knowing the anal part of me I will later. :) Got to make me and my little man some lunch. Ta ta for now.
Gregory
This is a beautiful expression of your true heart and life. I love you sis.
ReplyDeleteOne of the best things to do is to express your your thoughts and feelings with this, it really does help! miss you :)
ReplyDeleteAhh...he loves his mommy...just remember that. I have four children, ages 6, 4, 1, and our newest baby, dominic is now 6 months. Our first three are perfectly healthy so we were shocked when dominic was on his death bed at 6 days old. At day 10 he was diagnosed with galactosemia. He suffered a lot from the contamination and he is a now a very happy, snuggly boy.
ReplyDeleteMy two daughters on the other hand (ages 4 and 1)...can't stand to snuggle at all. In fact my one year old will tell you "no" with a firm slap one the couch if you ask her to sit with you. She tells her big brother to "stop it alex" if he tries to hug her. Its actually become a game in the house as to who aubrey will allow to hug her or sit with her. Of course, when's tierd or needs help, she'll sit in you lap (no hugs or she'll stand and run), and I get to enjoy her warmth then.
The point to all this is that every child's personailty is different. Doctors are always on heighten alert when there is a "disorder" and usually will try to relate the two even if they are unrelated. If your son is "mild" and has not suffered from his illness (seizures, liver failure, blood failure etc)...it may just be his personality and the fact that he is 3 and tring to understand independance. Its harder when its your first and your already dealing with galactosemia. I don't know how I would feel and handle this if dominic was our first.
I'm not sure if you are having more, but maybe the comfort that we have 3 healthy kids can provide other moms hope in having more :).
Meant with pure sincerety :)