"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with special needs doesn't take a special family, it makes a special family."
" Faith makes life possible. Hope makes life workable. Love makes life beautiful."

The Winwards

The Winwards

Saturday, August 23, 2008

Official Diagnosis - But still a child


On Thursday 8/21/08, my husband & I found out for sure that our little boy has spina bifida and club feet. He is also borderline for the Hydocefelus (spelling?), the fluid in the brain one.

The estimated location of the spina bifida as far as they can tell on the ultrasound is L4-L5. I'm trying to study what that location entails, but feel very overwhelmed. I know that every child is different, and they all do things in their own time. This may turn out to be minor, but I am really nervous about caterizing my son. I'm not sure I can do that.

We now have to do monthly ultrasounds and blood tests. In the next couple of months we also have to go see the surgeon that will do the back closure surgery, and go from there. Once I hit 8 months, I'll have to go into the doctors office 1-2 times per week to monitor the babies heart rate. Is that normal? We were told that the club feet can be fix via surgery, and there are remedies for the fluid, such as a shunt. It just depends on if he has issues with the fluid.

I also found out that I will definitely being giving birth via c-section. I am a bit disappointed, cause this being my first child, I really wanted to try it the other way. But I know that the c-section is best for my baby.

My husband is very upset about it, and refuses to talk about it. When I asked him about it, he said, "What should I think about it?" "It sucks" "Leave me alone". He also told me that I would be the one researching it all, cause he is preparing the babies room. I guess that's "fair".

I am scared, but deep down I know I can handle it. Otherwise why would my father in heaven send me such a special child?

As of yest we have not decided what to name him. We really want a name that means something to us. A name that is strong.

Things for me are hard right now as I try to come to terms with all this, and what is means for the start of my family. The feeling and sadness sit right under the surface, and its amazing how the smallest things can bring them out.

We have not told all of our family yet, and I am wary of what the reaction will be. Does anyone have any suggestions? I just don't want to keep explaining it over and over.

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