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.

Thankful

November is the month we all look over our last year and realize how much we have to be thankful for. I am no different in that. 

Christmas 2010

I wish I could remember everyday to be thankful for all that I have, but the reality is I don't. I get annoyed at the house and forget there are those that have no house. I get angry at my kids and forget how blessed I am to have all 5 of them. I get mad at paying the insurance co pays, when there are those that can't afford a doctors visit at all. There are so many more examples to this that I am sure you could add to my list. 

I wonder what world we would live in if everyday we all thought about everything God has given us to be thankful for. I have to say I would like to live in that world. So when December comes don't forget to still & be thankful for all that God has blessed you with, not only in the holiday season but all year long.  

UPDATE ON HALEIGH:

Halloween 2011 "Nemo"

I found a dermatologists that I have researched for a while here in Mobile. She seems like a great doctor and is in with a plastic surgeon, not saying I would change surgeons but they are in Mobile so I called to see about an appointment. They are not taking new patients with out a doctor referral. So I called Haleigh's primary doctor to get one. I have never  had a problem with them before, but this time he said he will not allow us to see another doctor and we need to go back to Birmingham. 

I was a little taken back. I explained that I can never get in touch with the doctors there and that they never call me back, along with how rude they are. On top of the extra wear and tear on the cars doesn't make since if there is a doctor right here in Mobile. While I respected his choice I am Haleigh 's mom and have the right to decide where we go for treatment. I was told I have the right to take her where ever I want but that he would not help us get in with this other doctor and to go back to Birmingham. I am glad I was just on the phone because I was so so mad. 

I then sat and tried to think of what to do. I will not go back to Birmingham they did not treat us with respect while we were there and I have made calls to them about different worries of mine, those calls have never been returned so I have had to rely on Dr Google for input and that is not fair to me and Haleigh.

So I decided Haleigh needs a new primary care doctor.  

Finding a new doctor is scary to say the least, but I know Haleigh needs to see a dermatologist and I know we can not get the kind of care I want in Birmingham so I called around and researched some doctors. Since Haleigh has a birthday next week we have an appointment for her 3 year check up with a new primary care doctor. 

County Fair 2011 (Haleigh w/ Stormy, Maddie's friend)

I am scared and nervous to take her somewhere new. She has seen the primary care doctor we are leaving since birth, but I know this is right.

I am thankful I live in a county where I have a choice on my daughters health care. I am thankful I have insurance that allows me choices with out questions. 

Assumptions

Sometimes when you over hear people talking your can make assumptions about what they aretalking about, and most times you would be wrong. A lot of times what you over hear are people talking about what they have assumed has happened in the 1st place. This is how a rumor is started. This is how friendships end and how adults get their feelings hurt.

We recently learned that we are being talked about by people making assumptions about things that are truthfully none of their business. I have tried to clear things up simply by a statement, but I can not stop thinking about how people that were suppose to be our friends are acting, so while I am not going to use any names I feel I must lay somethings out, even if they are our private business.

In January of this year 2011 we like a lot of Americans got our W2 tax forms in the mail and our 1099's, early Feb. We filed our taxes 2 weeks later we got our refund and decided to buy a boat. Why? A few reasons actually 1. It was a great deal, 2. It was something we had been thinking about for more than a year. 3. We knew that we would be dealing with Haleigh's surgeries for a while and we would be unable to take a real family vacation because of it, we also knew we could take the boat and go camping and have a ton of family fun that way for cheaper than say Disney World, 4. We wanted it. So with all that we got it! And we are so glad we did.

A couple weeks later my van motor blew up and because of how old it was, we needed to decide to either rebuild the motor and risk something else major going wrong, or crushing it and buying another used van or SUV. After finding out the cost of the repairs and what all else was actually wrong with it. We decided to buy an SUV, we put it on hold while we went for Haleigh's 1st surgery. 3 weeks later we took most of what was left and put down on our SUV. We have 5 kids so a car was not a choice for us, and we had to have a vehicle that fit is all with seat belts. While jason has a truck, it seats 5, there are 7 of us! If we would have know our van was going to mess up, would we have got the boat? Not at that moment, but eventually yes we would have.

There is a lot of talk about what we choild have done or what they would have done with that money, while raising money for surgeries for our daughter and something no one has thought of is, our income tax returns no matter how big or small has always went to all of our kids, not just one. The boat and SUV is something they all wanted and needed. My kids need to have fun, my kids deserve to have nice things, and have a way to get to and from the places we need to go without sitting on someones lap!

None of the money we used to do these things were raised for Haleigh's travel. Therefore is really not anyones business, and if anyone has problems with the way we spent our income tax money then I feel you should just withstand from donating to her.

I have never assumed how anyone is paying or has paid for anything, and the fact that I have to justify everything we did and see doing to people who I thought were my friends has hurt me more than I have been in a long long time.

Not my choice

As a disclaimer, I can only give my own view on my on life, and my own choices, I would never yet to make a choice for another mom.

In the past week I was messaged a question that I had actually never thought of before. This was the first time I had ever been asked this question though, I am not sure if others have wanted to ask, or what they would think, but with out using any names I want to answer the question. So what was it?

If I knew before Haleigh was born that she would have her nevus and all that we would go through would I have had an abortion?
Short answer No.
Long answer, I would not have an abortion unless it was too early for the baby to survive and I was going to die if I continued with the pregnancy. I can see no other reason I would be ok with myself. I did have all the prenatal testing for different syndromes, and I did want to know what the chances were for me having a child with a syndrome so that I would be prepared for the medical needs of that child. All of my test always came back normal and I am very thankful for that. If there was a test for the nevus I would have gotten it and I would have been prepared. Instead I didn't even have a name for haleigh's birthmark until she was 6 months old. I would have been informed and would not have waisted so much time. But I would not change having her. If God came to me and asked me if I wanted him to go back and for haleigh to be born with out the nevus, I would tell him no. Haleigh is such a light in our lives and she has changed our family and the way we think, the way we do things, the way we are things, its all changed and we are better people for it. Yes I hate that she has to go through the surgeries and I would do it for her if I could, but I don't want to change her, I never think we shouldn't have had her, I never regret being picked to be her mom. God chose me to be Haleigh's mom and I am proud that he did.

Being Haleigh's mom has tought me that no matter how much we plan and no matter how much we think we have under control, we are not! God has is all where we are suppose to be and woth who we are suppose to be with. I would not try to change what he has planned for me and my family. Not only is that a complete untrust for God's plan, but it also would not work very well for anyone. I know I am where I am because this is where God needs me to be. And its not for me to understand, its for me to follow.

So do I regret having a 5th child, NO. Children are a blessing for the Lord!

As long as it's healthy.

I bet you have heard almost every pregnant woman and maybe even some expectant fathers say that they do not care if they have a boy or a girl, as long as the baby is healthy that is all that matters to them.

So my question is what is the difference, in wanting a boy, a girl, and healthy? No one wants to say they want a girl because if then they have a boy people will say aw sorry you didn't get what you wanted. So goes for if you wanted a boy. But what if you say all you want is a healthy baby?

What if your baby is not healthy? What then all you wanted was healthy and you didn't get it, so do you love your baby less because they are not healthy? What do you say to a new parent who for 8 months have said all they want is a healthy baby? Then they have a baby who is not completely healthy?

We didn't care if Haleigh was a boy or girl and yes as every parent we prayed she would be healthy. But I never said all I wanted was for her to be healthy, because really being perfectly healthy is not all that important. I wanted nothing more than a child to bring into our home and love. That is all that mattered to me. I think a lot of parents would agree with me on that.

I think people that have children that never have a health problem, will never truly understand how much some other parents go through. Having had children that were and still are healthy from the moment of birth and then the other side too. I can say as different as parenting a sick child is your love for them is the same and your protection for them more!

Money Savings

Tomorrow morning at 9 am I will be in a coupon class at church! I am so excited, the coupon lady is hopefully going to teach me how to buy stuff for pennies on the dollar! Its going to be so helpful to be able to cut our grocery bill by more than half. With our trips to Atlanta getting closer any where we can cut back is wonderful, and before we cut out other things I think starting with coupons and food is the smart way to go.

We are also making sure everyone turns the lights off when they walk out of a room and water off while brushing teeth, and believe me the youngest kids do this the best, the older ones I feel like I am telling all day everyday.

One other thing is the heater, I wish I had one that locked, my kids get cold and do the put on a sweater, um... No they bump the heat up! I always set it for 68 and down to 65 when we leave the house. But now they know how to use it. I got up the other night sweating, the heater was on 78! Who needs it almost 80 to sleep? No one would say who did it either. So we are all learning something new, to save money. I hope its enough! Oh we got our paint and pals check today ready 360$ YAY!!!
On another note can everyone please pray Haleigh's great grand pop, we would be very grateful! He is sick and in the hospital. We are not sure what all is going on yet, thanks!

E-mails

When I talked to Dr. Connors at Emergence Surgical Gifts, he asked me to send him some pictures of Haleigh, both by mail and e-mail.

I looked and looked and realized I didnot have any pictures of her in the past 2-3 months of just her that were not under a copy right.

So my mom and I got her all dressed up and took some. They turned out a lot better than I really thought they would.

They were e-mailed to him thursday and we heard back Friday. I snail mailed them out friday too. The e-mail back told me how pretty Haleigh is (knew that lol) and how he is excited about helping her, and that he will keep me updated on everything that is happening with geting her surgeries done.

I am so glad this doctor want to help Haleigh, and I am glad he is willing to keep me informed on what is going on, instead of me just sitting here waiting. I at least know that he is trying, that someone in this world that can do something is doing something. I know that someone other than me is working as hard as I am at this.

I do not think I will ever be able to tell these people exactly what they are doing for my daughter, all I can do is pray from them, and pray they know how much they are going to inpact Haleigh's life, now and for her future.