Justin Damien Sears
We knew that we had a 1 in 4 chance of Justin being affected with Krabbe's Disease. So at 10 1/2 weeks of pregnancy we had genetic testing done. (This is when they go vaginally to take a sample of the fluid from the baby.) We had complications before the genetic testing and thought that we would not be able to test this pregnancy. There was no way I was going to be able to carry this baby full term and not know if this child would be affected. So against our doctors advice, we chose to test. We were all ready at high risk for a miscarriage, but we felt we weren't able to handle the emotional roller coaster if we didn't. I am so glad that we did. When Dr. Wenger called and told us we were having a healthy baby, we were very surprised. (Haley had passed away only 5 months earlier and we just had a healthy baby who was 4 months old.) I don't think Greg and I ever realized at what a wonderful God we have. All of these special babies in our life.
Justin was diagnosed at the age of 10 months with a skin condition called Mastocytosis. What this means is that his mast cells like to clump together. Everyone always thinks that he has chicken pox or measles. Many parents pull their children away from Justin and the kids don't care what he looks like, they just want to be kids and play together. This skin condition is NOT life threatening, they say he should out grow it by adulthood. It is still hard to see your baby with all of these spots everywhere, but at least I can still see my baby everyday. He is a very happy and healthy little boy who loves to eat everything and anything. He has such a wonderful personality. Hopefully as he grows up he will see that his "spots" make him different than everyone else and help others around he learn to accept people who are different than they are. He is our little "Spot, Spot polka-a-dot", he is one of our beams of sunshine. It is hard for some parents to understand that his skin condition isn't heart breaking to us, losing a child to Krabbe's is more than heart breaking. Justin will be able to grow and achieve many of his dreams, his spots will not hold him back or us. We have had more practice than others with the strange stares and comments about how a child may look, but when I look at my baby Justin, all I see is a beautiful little boy who makes me proud to be his mommy.
Whenever I start to wonder why I was given such a beautiful baby girl named Haley, I look at these two baby boys. God showed me through Haley that there is nothing more important than unconditional love. I am able to give that to my children now. Haley taught me that, and that is something I will always be proud of.
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