Thursday I went to have my blood drawn to see if I carry the Noonan Syndrome gene. I expected this to be a quick in and out test but my veins had other plans. All my veins decided to hide and it took 4 people, 6 sticks and an hour and 15 min later before the 14 cc's of blood they needed were drawn. I was praised for not crying, screaming, kicking, hitting and biting anyone and was offered a sucker and graham crackers. I will admit, it started to hurt a few times and I wanted to kick but I didn't. They even brought in the vein finder and still my veins were nice and deep. For this, I owe my mother...thank you for my deep thin veins, each time I have blood drawn I think of you! Love you Mom! Now I wait and see if I "gave" NS to my son or if it was a spontaneous mutation. If my test is negative then we go on to test Jason. If he is negative it stops there. If one of us is positive then we test Jonathan and then have our hearts checked. The bruises I have today are so pretty!
Zachary is who he is and I love and adore him for who he is but when I see kids younger than him or his own age doing things that he isn't, my heart breaks a little. I know many people ask what he is doing out of concern and curiousity but some people aren't so kind. They ask to compare children and it hurts. Most people are not trying to hurt me and I know that. I see my Z with babies half his age and I see them doing things he can't and I feel so bad for him. Don't geet me wrong, I love hearing about what other little ones are doing and I am proud of them, I just wish Z was doing them too! I know he doesn't care but I feel like I have let him down somehow. He fought so hard that first year of his life and now he has to struggle to do normal baby things. It isn't fair. He is the sweetest most precious boy and I adore him and love him for who he is and wouldn't change him one bit. I just don't want him to struggle to "fit in" or "keep up" the rest of his life. I am not sure how to get over this and not worry about it all so for now I will just keep doing what we are doing and pray he continues to get stronger everyday.
Z will be 20 months tomorrow and he is cruising along the furniture, climbing up and down steps and might just be the fastest army crawler in St. Louis! He sees steps and will turn around to go down them. He will sit on his step stool (with my help) and stand up and take a step to me. Kelly, the PT, gave us this exercise to do and he is so proud when he does it. So yes he is improving and he will get there in his own time. He is talking more and says "please", "thank you", "I do", "all done", and signs more. He adores his cousin Arianna and is learning so much from her.
Jonathan is struggling w/his new preschool/day care. I know it is normal and I also know it is the nap time (no tv) and the lunch time (he has to eat what they serve) that is stressing him out. I just keep telling him that I will always come back but he said he still misses me. He is a sweet heart when he isn't cranky. He will ask me why God picked me to be his Mommy and I tell him that he picked me. So we now talk about how before he was born he and God looked down and he saw me and his Daddy and he told God he wanted us to be his family so God gave him to us. I love it when he talks about picking us. This kid has a great memory and a wonderful imagination. He is something else.
Well the NS tests can take up to 4 weeks. As I learn more I will share it with you all.
1 comment:
I know it doesn't really help but we know what you're going through - the anxiety of 'where did this come from?' and 'did I do this to him?' but yet wanting it to be you so that there's a viable reason.
We know too the internal devastation felt when we see our little ones falling further behind instead of running ahead like our first children did. Often I'm on the verge of tears considering what Lauren's going to go through as she gets older.
She, though, is completely happy and oblivious...
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