Its How Much?

I decided to do a little math last night and remember I am not that good at it. Well with gas prices 40 cent higher per gal since the last time we traveled, I decided I needed to re figure some of our budget. Since we have gotten a newer truck it does get good gas mileage for being a 3 row SUV, but as big as it is its going to cost a lot. So much in fact that is is going to be cheaper for us to go up the day before surgery and just stay until the next week when we take stitches out. That means 8 days in Atlanta, it also means taking all 5 kids with us. We are just going to treat it as a vacation. We had kicked this idea back and forth for a while, but seeing as its going to cost about 160.00 in gas one way so 320 round trip, we know its cheaper to just stay.

Haleigh hunting eggs at the church.

And the kids really want to meet the Dr helping Haleigh and see where we go. Now I need a good 8 night, kid friendly hotel! Or we might actually stay a little out side Atlanta at a camp ground that has cabins and a lake to swim and fish and other activity for the kids.

If gas keeps going up the way it is, her 3rd trip Haleigh and I might go our self and fly! Its scary to think that might be cheaper than driving 320 miles!!

The Unknown

There is so much I am still learning about nevi and how they become. I like so many fear the unknown, and most people have never heard of CMN the skin condition Haleigh has. And for most people myself included your don't start to learn things unless you have to. Before Haleigh was born there was no need for me to know all about CMN, or how it affects lives. But awareness is something I have come to realize is a must.

Last Friday there was a little 2 year old boy who died from a complication of CMN, not from surgery, but from tumors that can develop in the Central Nervus System. Have I know this is a complication of what Haleigh has? Yes, why have I not said anything before? Because what research I can find and believe me its not a lot, has shown that this complication is rare, and mostly seen in kids who have nevi on their spine and tops on the head. Also there is a link between children who are born with a lot of small nevi instead on the one large one Haleigh was born with. Since Haleigh is in neither of these groups I have tried to buy it in the back of my mind. The truth of the matter is though I should be making a voice for it, not hiding it away. We are raising funds for travel and should be raising more awareness than we are.

Words can not express the loss this family has endured, I hope we as a fellow nevus family member can shine a little light on awareness, and pull in some funds for more research on CMN and eventually have a cure.

Its scary to be in the unknown, to not know if your child will be in the very real % that has a serious complication from this skin disorder, or will we be among the ones that only worry about removal?. The research I have read seems to be that if we can get her to 13 years old with no complications including Cancers then she will be at no higher risk that anyone else. That is 10 and a half years away.

Team Haleigh

The Softball tournament this past weekend was awesome. I hope everyone knows how thankful we are for the support our community has shown us. All of the girls that game from all over the county played great, and showed wonderful sportsmanship.

We started the tournament on Friday night, the 12's and 8's had 7 teams each so there was a need for Friday night games. We decided that while our team name is KAOZ we would call them Team Haleigh.

So we had the 1st game of the 12 and under teams and started at 7PM, we won against a team that we are great friends with and both teams played awesome! With that win we would play, Saturday morning at 1030. We won that game and then had a long 4 hour brake that turned into is not playing until 530 that evening.

While we were on brake we met a lot of people, most just wanted to meet Haleigh and give us their support, a few of the vendors gave us free stuff for Haleigh and we got some contacts that told us they would help us with fund raisers, we were a little over whelmed with all the support and love we were shown, but we're so grateful for all of it.

We played and won our game at 530 and were setting up to play in the championship game, team Haleigh wanted to win this game for her and they lost. The great thing about playing a double elimination tournament is that if you have not lost yet the next that has has to beat the undefeated team twice.

KAOZ, Team Haleigh

So at 945, we started the very last game of the night. Our girls were tired our girls were crying our girls were mad! Our girls played all day in the sun and 90 degree heat and we told them that we were so proud of them and that they were awesome. The game started and our girls ripped the ball! They were on their game for sure, the pitcher threw strikes, the catcher caught foul balls, 1st base dove in the dirt, all the girls hit the ball and we won. The other team played a great game too. But our team was team Haleigh and they wanted to win for her and they did it.

I am so so proud of all of them.

Haleigh went on the field to help hand out the 2nd place metals and the 1st place trophies. I was crying and smiling, I didn't even know I had tears until I saw Jason did too. We were just so proud of our girls and so over whelmed to see everyone clapping for Haleigh when they have her her trophy, yes she got one. They all had her name on them so of course she got one.

And that was it, we were told we made a lot of money, but we don't know exactly home much. I do know that when we get the check we will be opening Haleigh her own savings account, and I will transfer the money from our savings that was from the paint party. I will be able to pull it out when ever Haleigh needs it for travel and medical needs. The medical needs that relate to her nevus of course!

Haleigh had a great day playing and having ball park fun. She knew it was all about her and yesterday she was right.

Hitting 4 Haleigh "A Tournament to Make a Change" Thank You & Photos

The tournament was a huge success!

We would like to thank everyone that so generously 

gave of their time & funds to pull this event together.

Also we want to say thank you to each ballpark, team, and family that participated.

And finally we would like to thank those that came out for no reason 

other than to simply support Haleigh.

The outpouring of love that was shown to our family means the world to us! 

Each and every one of you need to know that you have helped change a life! 

THANK YOU AND MAY EACH OF YOU BE BLESSED!!!!!

Prayer took place after each game
with both teams huddled on the pitcher's mound

Jason, Haleigh's dad

Hitting for Haleigh

Tomorrow night at 7 PM the first Hitting for Haleigh game of the weekend tournament will begin!

Madalyn's team KAOZ plays at 7 against the Crushers! These teams are evenly matched and its always a great game. There will then be a game at 8 friday night and all day saturday. I am not sure who all the teams are but last I heard in the 12 year olds there were 8 teams playing! Then there are the 8's 10's and 16's that are also playing! This is going to make a huge difference in helping us travel with Haleigh. And I hope everyone will come out and watch. There is a $1 gate fee and that will also go to Haleigh, along with the fees the teams paid to play.

I am really excited, its going to be a great weekend!

We are also having a pre sale on hitting for Haleigh T shirts! There will be a sample at the park this weekend, they are $10 and the profit goes to haleigh!

One day when haleigh is older I will make sure she know all the people that loved her and helped us through our travels with her!

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!