"He has it." I said to my midwife.
Matt got off the phone and confirmed that I was right. The first thing I felt was a heaviness. Here's this perfect baby boy nursing in my arms, and now we know that he has a severe bleeding disorder. Of course, I was not shocked or suprised. We knew he had a 50% chance of inheriting my gene mutation. However, knowing it's a possibility and finding out it's a fact are 2 very different things. I didn't cry. I just felt some heaviness in my heart as I thought about what was ahead for this sweet baby.
Our midwife left. Then, Matt called Eli into the room. Both of us wanted to tell him first. When he heard that Silas had hemophilia just like he did, his little face softened in a way that I'd not seen before. He moved over to Silas, and warmly said, "Aw, Silas!". He had the most loving smile on his face.
Perhaps even sweeter than Eli's reaction was Isaiah's. When we told him that Silas had hemophilia, his face lit up with excitement. "Really?!" he exclaimed, and he jumped up and ran to Eli. (He was unaware that Eli already knew, and ran out before we could tell him.) "Eli, guess what?! You have a little buddy now. Silas has hemophilia just like you!"
Of course, Silas didn't have to have hemophilia to be Eli's buddy, but we knew what he meant. It was so precious!
I had my cry later that week when I checked facebook and read the tragic story of a little boy with hemophilia in the Philippines who recently died because he couldn't get the factor he needed so badly. It was too much! "That's our boys, honey! If we ever couldn't get factor, this could be them!" I cried to Matt. I really cried. It's been a while since I cried that hard. We talked for a while. I asked Matt, "Is it ever hard for you?"
He replied, "No, it isn't. I just look at it as something God has put in our lives for a reason, and we just need to make the best of it. That's why I am going to nursing school to be a nurse and help." Matt wants to be a nurse manager in pediatric hematology. He wants to help other families the way our nurse helped us.
"Why did God have to mess up my X chromosome?!" I sobbed.
Matt said, "I don't know, but honey, look at what you are able to do because of this (BWB) and all the people you've been able to meet."
I said, "But, honey, I would give it up in a heartbeat in exchange for my children's health!"
After more crying, talking, and hugging, I started seeing something I didn't see so well before. God gave this to us as a gift. He put us right in the middle of a special group of amazing people. It is our blessing to know them and love them.
No, hemophilia does not define Eli or Silas or our family for that matter, but it is a part of us. It's a very special part because it is not just a bleeding disorder, it is a new family into which we were welcomed with open arms. God bless you, dear hemophilia family. You are a gift from God to us, and I pray that we can be as much a blessing in your lives as you are in ours.