Haleigh's Story: March 2013

Saturday, March 23, 2013

And that's a reason why.

My heart is heavy tonight. Another family is grieving their child. A child similar to Haleigh.

I will not use his name as I haven't been given permission to do so.

A little boy, just 17 months old died today. About an hour ago actually. He was born with the same type birthmark that Haleigh was born with. His was more involved than Haleigh's, but in some ways it's the same.

I am so scared that will be us one day. I'm scared of losing Haleigh. I always have been. Since the day she was born there have been things that I've asked. " can she die from that?" Most of the answers have been no. A few were i don't know, and one not right now but we don't know about later. It's scary to not know the later. That something can just sit there and be " abnormally normal " for years and the be cancer. The baby that grew his wings tonight from what I understand had cancer when he was born. Where is the since in that? How do you make since of why or how that even happened?!? I surly don't have that answer.

I truly don't know what the risk are to Haleigh. Everyone you ask will have a different answer for you. We've heard anywhere from 1-25% and then double at puberty. Most doctors agree the chance goes up at puberty but not by how much. It's hard to know who to listen to and who is right. They can't all be right. There is not enough research for me to know what's exactly right either.

That's why we chose to remove early on I knew that we would, even if her cancer risk stayed low that we would remove. I am more scared of what may happen if we don't than what could happen while we do.

I know there are parents who chose the opposite. There is not right or wrong answer. Just what is right for your family and this is right for us.

I can't imagine losing Haleigh. I've already lost Joshua. I don't think if survive losing another child in anyway.

So we have an appointment with her surgeon on the 9th of April. To see how she's healing and when we can get started again. I'm not excited about more surgery or more expanders and screaming durning fills, I am however excited about the risk being lowered. I'm excited about not being so scared all the time for her to be in the sun. I'm excited to stop giving her vitamin D because at the moment I'm pretty sure she doesn't get any because she's always lathered in sunscreen. I'm excited to be done and have it behind us instead of waiting infront of us.

Saturday, March 16, 2013

Yard sale #2

Today was our yard sale to benefit Haleigh. We had a yard sale a couple years ago and made a lot of money. We didn't make as much this time but we did make over what I was expecting. We still have so much stuff left so we are holding another sale next weekend at my sisters house. The sale today was at our house.

Our grand Total for the day was 150$. That will cover gas for 1 round trip to Birmingham. That's so awesome. I'm am very grateful to everyone who donated their stuff and who came out to help me today. I couldn't have made it with out the support I've been giving. So Huge thank you.