"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

Monday, September 8, 2008

Feeling a bit of hope...

The more I think about what my new son will be like, the more excited/nervous I get. I'm excieted to see him, and get to know his personality, but I am nervous about the disabilities and pain he will have to encounter as he grows.

I do have better feelings now that I have talked to a neuro sugeon and gotten more of an idea what spina bifida can "really entail". I still need to see an orthopedic doctor about his club feet.

I think the biggest hump for us is the financial one. I'm hoping that I can find the time between work, dr appts, and family to explore any and/or all avenues that may be of some help.

I know that no one plans on having a special needs child, but God apparantly chooses who he thinks will do the best job. Now that I am over most of the anger, I still wonder what in the world God is thinking somtimes. Because at times I really wonder if I am going to be able to do this. It's a big leap of faith for me!

I admire all of the strong Moms who have gone through this before me! They have all helped me so much in being understanding, loving, and supportive in any questions I come up with. And by also just being a friend!

I found a couple of great support groups online. The spina bifida support group on www.babycenter.com (my favorite) & www.dailystrength.org
Both have been the best thing for me! I have been shown through others experiences that it will be hard, but it really isn't impossible!

Sunday, August 31, 2008

Getting past the emotional stress.....

As I think about things from day to day, some days are better than others. In some ways I still blame myself for this, and in other ways I know I didn't do anything to cause this. Today is one of those days that I just feel like there is no way that I can do this!

I think in the long run I am just plain overwhelmed. Overwhelmed about where to start, who to contact first for help financially and/or emotionally. I've had a lot of suggestions, and have done a lot of research on the net. A lot of it is encouraging and helpfull in understanding what may be coming up for me, but it also seems to be such a daunting task.

At times I still think that I must have done something wrong to deserve this, or maybe I'm just being tested by God.

I guess what I really need to figure out first is how to get out out the emotion stressing rut that I can't seem to get myself out of.

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.

Thursday, August 21, 2008

The day we found out about SB

On Thursday 8/21/08, Ray & I found out for sure that our little boy has spina bifida and club feet. He is also borderline for the Hydrocefelus, where the fluid does not drain properly in the spine, and is collecting in his head.
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 all the extra challenges with my son. I'm not sure I can handle all that is to come.

I now have to do monthly ultrasounds and blood tests. In the next couple of months we 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. I'm wondering if that is normal, but I guess its for the good of the bab. 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 after he is born.

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.

Ray really doesn't say much about it. He 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 so scared, sad, angry, and am not sure where I am going to find the strenth to handle this. I'll just have to handle it. Otherwise why would my father in heaven send me such a special child?

As of yet 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.

This Blog

This blog was created to celebrate the life and challenges of raising a child with special needs. Also to allow family and friends a glimpse into our crazy life!

Thursday, August 14, 2008

Bad News - but still a Miracle


I found out on 7/24/08 that my new baby boy growing inside me has spina bifida. I first felt shock, and disbelief. But the disbelief soon turned into massive sorrow. I don't think I've ever cried so hard or long in my life! He is my first child, so I was already scared, but now I'm terrified.

It's been 3 weeks since I found out, but I still wonder if I could have done anything to help prevent it. Sometimes I blame myself, or think God must be punishing me for something.

I've been trying to put up a strong front and tell myself that there are worse things that could happen to my son. Trying to convince myself that I can do it, and it won't be as hard as the doctor's say it is. Or at least I'm hoping that it won't be.

I have a follow up ultrasound next Thursday 8/21, to try to find out the extent of the spina bifida and where in the spine it is located. I'll be 23 weeks, so they said that should help, cause he will be bigger.

I just have so many questions. I'm not sure where to begin or where to ground myself. I need some stable information so I can start preparing myself. I'm hoping the follow up ultrasound will give me that.


I know that every child is a miracle. I just wanted my child to be perfect.