need to get it out
KYmama9286
member
I don't post on here often but I lurk a lot- I have a 2.5 year old DS with Russell-Silver Syndrome (genetic growth disorder). He has GI and feeding issues and is tube fed. Anyhow- I just needed to post somewhere and get some of these fears out b/c I need people who will "get it" and understand how easy it is for me to be irrational about some of these things since I know much of this is irrational.
I am SO nervous that something is going to be wrong with my baby- I am pregnant with #3 and I am near convinced (almost feel like I've already accepted that its inevitable which is silly) that there will be some sort of health issue with my baby. There is basically no genetic link that would make me having another baby with RSS a risk (its a random genetic/chromosomal mutation- not something that we could be 'carriers' of). Since having DS I have had SO many close friends/family members have serious health issues with their kids that I feel like its inevitable. In the last 2 years we have close friends and family have kids dx with: Noonans Syndrome, EoE, Cerebral Palsy (2 separate cases), tuberous sclerosis, club foot, spina bifida and I am probably forgetting some. These are just out of kids in my group of close friends and family. Then to add to my irrational fears a mom in my moms group just had a uterine rupture and lost her baby in labor which is incredibly heartbreaking and sad and I just can't stop thinking about it.
I think what scares me most is that the cases of Noonans & EoE are my sisters 2 kids- coupled with me having a child with a genetic issue I am kind of convinced there is just something wrong with my family genetically and we are destined to have babies with issues. Add in that these kids are all young and could still potentially have other issues that haven't been dx yet- gah! I am just worried- I am trying to not think of it, trying to not be convinced and trying to remember that even with DS' health issues I have had a wonderful experience parenting him and I wouldn't change him for the world (well honestly, if he could be healthy that would be awesome but I don't "hate" the RSS like I used to). I dunno- sorry this is a jumbled mess I just had to get it out there to people who understand the reality of a SN kid since many of the other boards I post on would just go on and on about how much of a blessing all kids are regardless and link me to Welcome to Holland and just stuff that isnt helpful. Did anyone else feel this way?
Re: need to get it out
Thought I am in a somewhat different boat, I totally understand the feelings you are having.
I have 3 boys, the older two both have autism. From the moment I found out I was pregnant, I was worried. Then I kind of let it go for a bit. At the 20 week U/S, my oldest begged us to find out what we were having. When we opened the envelope the tech gave us saying it was another boy, I burst into sobbing tears. I knew that the chances of the sweet little baby I was carrying having autism just got even higher.
Of course the verdict is still out on this one, as he is so young. I still have days where I freak the F out. I just want to know what his life is going to look like.
It is so hard. Big hugs to you.
I think the part that is most ridiculous is just that I have really learned how strong I am and how much I can handle in the last 2 years- there has never been a time that I thought "I can't handle this" that God hasn't given me the grace to get through it- you just do! It's like, when people ask "oh I don't know how you do it" uhmmm I don't have any other options? I parent b/c that is what my job is as a parent...
I totally understand your fears as well- I feel like even if I have a healthy a/s, a healthy delivery, healthy baby I will still be concerned that something could come up...I just keep reminding myself that if something comes up I will just do it- I will make it through- I know how to navigate some of these systems SO much better now...it wont be as hard as the first time around just b/c I am more experienced, kwim? You have that in your favor as well- you are an old pro...granted new things come up everyday still with my DS but it tends to be much less scary since I know its just one more thing we will figure out and make it through.
It's a crappy perk of being in this club. We're no longer jaded. We don't have memories of bringing home our babies from the hospital without NICU stays or watching them grow without the nagging "something's wrong" feeling.