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!

Of course we are thankful

So this post is not directly related to Haleigh and her nevus, but More about children and family and health concerns.

Having a larger than average family these days gets you a lot, a lot of stairs and questions that is. I have never in my life told anyone how many kids they should or should not have. But I must admit I love big families and I do not understand when people choose to have just one child.

For some reason some people think it is OK to comment on how many kids you have, and not people your close to, because even if they do not agree with you decision they most likely respect it and therefore keep their mouths shut!

     Last Easter
My 5 and their 3 cousins (their cousins are in matching dresses)

I have gotten a lot of comments about my family size over the years, since I have gotten older I don't get the "your too young for all them to be yours" but I still get asked what I am going to do with "all them kids", If we are done, if we wanted them all, and less often I get asked if they are all healthy, because apparently since the dugger family has 19 kids and the last one was born sick, that means every family with more that 3 kids have a very sick child. ( I in no way believe that)!

So what do I say to these people so strangers? It all really depends on how my day is going, sometimes I say nothing, other times I joke and if I have had a rough day I get defensive. On those days my answers are, Yes I am a young mom, but at least I am not as old as you, of course my kids were wanted and very much loved what's your point. What are we going to do with them? Well we needed a maid so we had a girl then we needed yard work done so we had boys too. Are they all mine? Nope picked them up on the corner. How do we do it with 5? The same way you do it with 2 just 3 extra times a day!

The heath question usually comes across as "wow with that many there is no way they are all healthy" when I say yes actually they are all doing great and have a clean bill of health. Then I get "well be thankful for that" um yeah cause I was not already!? I don't understand how people can think since I had more kids that I was not thankful for the ones I already had.

In birth order Madalyn was the picture of a healthy baby we were and are thankful for that, Collin was a bit early and had asthma as a baby, we would not trade that and see thankful for him. Aden was early too and spent some nicu time, he put grew his problems too and we are thankful he did and for him. Landon was lucky we lived in a city with a major nicu that could handle him at 31 weeks, he is now almost 5 and we could not be more thankful he's healthy. Haleigh has had health issues and was early, she also has her nevus, but with all that she is a healthy baby and we are thankful all her health issues are manageable, but even if they were worse we would be thankful just to have her, she is such a light.

None of that changed just because we had other kids. And it would not change if we had a 6th child. That brings us to the "are you done" question. This one really gets people sometimes. I feel as of eight now that our family is completed. I felt complete after Aden was born too, but after Landon I knew someone was missing. I think we have very little to do with our family size. I believe God gives us the children we are suppose to have and even if we are on birth control or get our tubes tied or make our husbands get the big V, I believe we are going to end up with the family God has planned for us, even if that means raising children we didn't give birth to. And I am not sure what he has planned for our future.

I wish I could say that is what I tell others when they ask. Most of the time I say yeah! Or heck no I want 10 more just like these! And the truth is I feel our family is completed and so does Jason, we are thankful for all our children and if God was to think we (for reasons I would not understand lol) needed and could handle another child we would be thankful he had chosen is as parents again, but that would not make us any less thankful for the 5 wonderful, loving, healthy children we already have.