I know it is irrational but I keep running in my mind all the times that I have had an experience with alopecia or baldness in my life. I think it is more than average since the disease affects such a small percentage of people. Somehow I think it was foreshadowing all this.
When I was 8 I was a pretty good swimmer, well a good swimmer for the Valley in California. I had won almost all my local meets and competed in the all city meet. That is where I saw this girl that had no hair, bald. I had to swim against her. At the finish line I realized that she was FAST, faster then me. My immature 8 year old self didn't like her that much, I was mad that she shaved down and won. I realized that she hadn't shaved she was bald. But why. it couldn't be chemo she was to healthy and fast. Now looking back it probably was alopecia.
In high school I learned that my old piano teacher lost all his hair to alopecia. That year we had an assignment to give a persuasive speech in English class. My topic BE BOLD, BE BALD, BE BEAUTIFUL. I wore my swim cap and gave all these statics on how much we spend on hair and that we were just all conforming to society. I did get an A on the speech but no one ended up shaving their head including me. Around that time a girl in my stake was diagnosed with alopecia, My brother was good friends with her. Latter in life we became good friends. We even went to Europe together and hung out when Kevin and I were dating. She now lives in AZ, we see each other every once in awhile.
When we moved to Arizona I met an amazing woman in our ward that also had alopecia. And this last November Kevin's co-worker found out that his daughter has alopecia.
Logically know that all these are just coincidences but part of me thinks that it is my fault. If I only had been nicer to that 8 year old swimmer. If I had only chosen another topic for my persuasive speech. If I only was more compassionate to those who had it.
I was doing some research today for support groups and conferences. I just cried looking at all these beautiful children totally bald. We will most likely be one of those families. I need to chill for awhile because I want to talk about it to death and Lilly is done talking about it. She can't see a change so she doesn't care. The doctor called and said that all her tests came back normal, so that means that Lilly is healthy and has no other underlining disease. We have an appointment with the dermatologist for the being of March, we couldn't get in until then. We will see if there is any treatment that will work for her.
11 comments:
I wish I had something insightful or helpful to say. But I just want you to know that my heart really is going out to you hearing about the pain you feel as a mother hurting for her daughter.
I don't have anything helpful to say either except keep your chin up and cross whatever bridges are in your future when you come to them. We're here if you need us.
What ever happens, just know that Lilly is one of the most beautiful little people (inside and out) that I have ever met. And Davin is still in love with her.
Perhaps all these experiences you had are to help you help support Lily should she face going bald. I know as a Mom we worry about others reacting to our children, but through all this I know that you'll be such a strength to your sweet Lily. And I know that you both will grow closer together with this experience. Hang in there. And if ever you need a shoulder to cry on or someone to vent to I'm a phone call away, or a few streets away.
As a mother, I know we just want so badly to solve all of the problems that our little ones encounter. It is so hard not to have a quick fix. So I can understand the frustration you must feel. (not from this particular instance but from other experiences.) Just please know how many many people love you and your family. You are in our thoughts and our prayers.
Take Care!
Laura,
No one expects you to accept this trial over night. You should talk about it until you feel ok with it. Lilly is going to be fine; she has you as a mother. You are strong and will be able to guide her through her struggles with grace and dignity. We wish you guys the best!
You're awesome, lady. Cry when you need to, and pray when you don't want to. And know that your friends love you, and we're here for you! And if you have a spare moment, smile. :)
I started to write a comment yesterday, but wasn't sure it was the right thing to say. I don't know if what comes out today will help either. But, here goes: I think you are great and I think Lilly's great and no matter what comes you can handle it -- that doesn't mean there won't be tears and pain -- but you'll get through it. You are confident and beautiful and you can teach her to be the same. Plus I think if Lilly went totally bald she could rock that look. And I would shave my head in support. No joke.
Laura:
I had to go back a few posts to figure out what was going on. I'm sorry! As moms we want to envision our children having an easy and happy childhood. I know I've cried my share of tears and frustrations with Tommy's delays.
I guess we just have to have faith in the Lord's plan for us and take it as it comes. You and Lilly are strong, and you'll be able to help other families down the road.
Hugs :)
So sorry that you guys have to deal with this. You and your little Lily will be in my prayers. I know how you feel about the hair thing...when Lucy's first clumps of hair came out, I was very emotional. We ended up shaving it because it was so patchy and while we were doing it, I cried and cried. Here is my post about hair http://stanclifffamily.blogspot.com/2007/10/few-words-on-hair.html . Lily is absolutely goregous with or without hair. Love you!
hey, just wanted to let you know i've been keeping up with your blog but i've been slacking with the comments. we've been thinking about you guys so much. and i agree with the comment above. it was actually the first thing i thought when i read about lily - she IS "absolutely gorgeous with or without hair"!
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