Monday, January 21, 2013

What to expect when your expecting....

Written by Heidi:

"I know Kris has written in the past about their experience during their pregnancy. Within the support group on Facebook it feels that we all share such a similar story of our RS pregnancies and mine is no different than Kris's. As I first read hers I thought "did someone steal my story"! As we were going thru it we felt so alone! We were told by numerous and highly educated doctors that basically we were alone. There was essentially no literature to educate ourselves with. The one doctor who we thought would give us answers from handed us our son back and  told us he had never heard of it and if anyone told us they did they were lying to us. This was when Ethan was just 1 1/2 years old.

But let me back up: at our 5 month prenatal check up we took our 6 year old soon-to-be-big-brother with us to find out if he was going to have a little brother or sister. Little did we know we would be leaving with heart breaking news that his little brother had cerebellum issues, along with spina bifda occulta enlarged ventricles  and we were introduced to large words that would become a second language to us. The next weeks were a blur of appointments with specialists that knew nothing, had little advice with answers of 'we don't know' and 'we suggest that you terminate'. We felt like they were suggesting this because they didn't want to be held accountable for the unknown. We scheduled the next appointment and moved on trusting that God gave us this baby for a reason and we would do what we needed to do.

The next scheduled ultrasound left the specialist yet again scratching their heads as Ethan's ventricles had decreased slightly as they told us this doesn't happen. The pregnancy and his birth continued on this trek with highs and lows and lots of scratching of heads.

I got to thinking about this as I was messaging another new RS mom the other night. She was with her new baby and they are going through another major procedure so soon after being born. It seems that nothing goes easy for these RS kids. But somehow they trek thru it. How alone and isolated we parents can feel and have felt during it as the medical staff hasn't been able to offer much in this in the past. But I believe that won't be the case in the future. If I could of had another mom message me who truly went thru some of the same rare things that I did back then. Wow!. I can remember when I first read Kris's words. I got goose bumps! Finally I had a connection with someone! There was a family out there that got it! And thru face book I  have found many families that get it!

So if you are expecting and you have found this blog because you and your little one have been given the news with some pretty big words....and all those pregnancy books are now out the door come find us facebook. You can message me Heidi Swartz (Larson)"

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