Sunday, December 11, 2011

alopecia 101

I've kissed this little boys' head so many times the past 3 days that anytime I make kissy noises at him, he shoves his head in my face...not his lips. Love.
First I want to start by saying I have the most wonderful friends and family in the world! Everyone has been so encouraging and I can tell they truly embrace my beautiful little bald baby boy and see his beauty-even though he has a new doo :) Not everyone knows about alopecia. I didn't...so I want to explain. Most importantly, I want you to know our perspective and approach we plan to take as his parents. We know that this can and will be his greatest asset with our guidance--and yours too if you are a part of his life. It takes a village, right?

I've known he's had alopecia since August. I really have been fine with it all along. The only thing that has been hard for me is the initial shave because although he's so stinkin adorable, I fear the outside world and now it is time for me to start thinking and planning for my parenting approach. People can be so skidish about anything different from normal. Who wants to be normal anyway? Thankfully he's a boy so as of high school, he'll look like half of the boys anyway and won't have to deal with the shaving! I've just gotta get him through the primary school years.

So first of all--I want people to know what it is so they can tell their kids about it--especially if they are friends with Luca. Kids are very formative and accepting of anything they understand and are not fearful of. So even though it's obvious, tell them that Luca doesn't have any hair! God made him perfectly-he just doesn't have hair! Plain and simple. I can't protect him from everything, but I dread the day he hears someone say, "why doesn't that kid have hair"as though it's not a good thing.

So here is the diddy...There are 3 stages of aplopecia. Areota, Totalis, and Universalis. So far it appears that he only has the areota which is the least extensive version of the DISORDER. It's not a disease. No one can catch it. He's not sick. He is not in harms way. It's simply an auto immune kink and his immune system overreacts to hair follicles. That's all.

This is the most important thing I want everyone to know---our perspective and approach. We invite you to take it as well if you are a part of Luca's life!

1)  Luca is marked by God to be noticeable and memorable. He is special. God made no mistake when he made Luca that's for dang sure! He can do something amazing. He will be amazing because he will take pride in who he is as a person and in his character and find that most important. This is a lesson most kids learn a little later. He will make friends that love HIM. What a blessing.

2)  We will pray with him and give THANKS to God for that smooth and oh so kissable bald head. We will pray that because he doesn't blend into the crowd, that he will use that to do great things. These are the things we will pray in front of him. I am so so so thankful that he is healthy, I get to keep him, I am not in fear of losing him, he's not sick, he has no need for medicine, no treatments. He is PERFECT! Never have I ever been so thankful for healthy children in my life.

3)  In private, I will pray for him to have hair, or a season with hair. As a parent, you never want to see your child ever have to face anything...especially anything that may bring adversity. Even if it could make them an even better person. I know those times will be ahead for both of my kids. It's unrealistic to expect that they will never have to deal with anything or face anything. I'm the mom that gets on to other kids at the playground if they cut in front of my kid in the line to get on the slide. But still, I will pray against anything that may bring them adversity until the day I die. I will pray that he owns whatever he's got at the time. I will pray for a strong confident character that doesn't really give a flip. I will pray that he is caring/sensitive and not wussy/sensitive. I want him to have thick skin. I want him to have GRACE for others that may try to tear him down. I want him to have a ridiculously mature understanding of the things that matter in life. I will pray all of these things in private.

4)  I never want to make him feel that he is not whole without hair. Not gonna lie...I'd rather him be a little vain :) He's a good looking little boy and some day he'll be a good looking big boy with or without hair. Go with it and be proud! Work it! That's all I gotta say :)

5)  While he is a baby, we will explore different treatment options and diets that may help him. If they work, great. We will keep at it. If they don't-that's fine too! When he comes to the age to realize he's going to doctors, we will stop. I never want to give him the impression that there is something about him that needs to be different or ''fixed". If he's older and asks about treatments or wigs, I'll do anything (ok most things) for him. But I will not take him to specialist after specialist like he's sick or something is wrong. I truly believe that this is how it would seem to a child. And quite honestly, there aren't any proven treatments to the disorder. There's not a lot of research because it's purely cosmetic so I guess there's no sense of urgency.

I am thankful it's not my daughter. Could you imagine? I am thankful that his onset was early. He will never have to give up his hair. Treatment is more effective in patients with early onset. Out of all of the personal stories I've read, women have a harder time. Men that had it later in life have problems with image and acceptance. Men and children who have always had it are in a much better place. They've had friends and have grown up to marry and have families of their own. They faced snide comments from random bullies at school, but unfortunately that happens to everyone. I'm so so so thankful for this mother I have been introduced to. Her son has universal alopecia (no hair on body at all). She has provided me a lot of wisdom and insight. She is a few years ahead of me in all of this and gives me such great perspective, advice and encouragement. Her son is beautiful and happy.

For those of you who are a part of our lives, we just ask that you rejoice in the specialness of our baby boy. Rub his head. Kiss his head. Don't feel sorry for him. This boy is blessed. The only "rules" are what to talk/pray about in front of him. Please know this is not an effort to shelter him, but to raise him to own the right message about how amazing his is.

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