Finding out about Hyrum

Well when we got our ultrasound in Novemeber to see Hyrum they had told us that everything looked great and he was a healthy little boy. On December 20th during my second ultrasound to check on his heart we got some bad news. I felt the need to ask the ultrasound tech to check his eyes, it's something we have always asked as more of a joke than anything, but when she went to check I knew something was wrong. I couldn't see the orbits at all and I could tell the ultrasound tech wasn't sure what to tell us. My doctor made it clear to me about an hour later that they believed that Hyrum is suffering from the same condition as makayla. He has no orbits or very small orbits and would more than likely be blind. James and I were devastated and felt so confused and angry. Originally we had been told that Kay's condition had nothing to do with genetics and it was a one in a million type thing and our other children had been proof of that. Well....they were wrong.  That is probably what made the knowledge so difficult, because it had never crossed our minds that it would happen again. Also they did not know much of Kay's condition back in 2007, she was a rare case period. 

After the ultrasound they made an appointment with a fetal specialist at the hospital. We saw him after Christmas. He did another more advanced ultrasound and confirmed what we had been told. We were for some reason still hoping the doctor just hadn't seen correctly or gotten the wrong angle, but that wasn't the case. He does however believe that Hyrum may have micro orbs on both sides, but right now it's difficult to tell. He did tell us though that every other part of Hyrum looks healthy and well. Certain things will not be known until his birth in April, and I am very anxious about that. I'm not sure what Hyrums future will be but I'm praying that he can be part of our family and will be well enough to know he is loved. 

We also have met with a genetic counselor who believes that James and I both carry and autosomal recessive gene that has made this condition appear in 2 of our six children.  It cannot be pinned on one or the other since we will have two sexes with the same condition.  Which means even if we have passed down the gene to the kids the only way they will have a child with this condition is if their spouse also carries the gene. So it will be rare either way. They will be drawing blood for Kay first in hopes that she may have the key and the other children may not need to be tested at all. If nothing is found this might be a long process that may take years to figure out. We never have felt prompted to push genetics before, but would like the kids to have some idea about their children in the future if they choose to have them. 

The transition of believing that my last child would be whole and complete to knowing he will not has been really hard on me. I've been trying to find peace and loose my sense of guilt, and it will take time but I'm trying. It's hard to say how well I will deal with the stares and terrible reactions rude people tend to have when they see our blind children for the first time...it was a very difficult time when Kay went through it and I pray I will handle it better. 

But through this I just wanted Hyrum to know that we love him so much. All my dreams of him make more sense now, and it does feel like destiny that he was placed with us. Although it's a struggle I never wanted to have to relive for me or my last son, I'm still grateful we will go through it together. We love you Hyrum! We know there is sooo much you will teach us.