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When does this stop consuming your life?
My daughter Charlotte was diagnosed with AA 3 days ago. She has 3 patches, 2 being quite obvious but not unless you knew that she had AA. Obviously the waiting game to see if it gets any worse is quite difficult and I feel like it is taking over my every thought. I know that I need to be strong for her and she seems to be coping as well as a 4 year old can given that she doesn't really understand what is going on. She drew a picture today and brought it to me to see. It was of her with big bright yellow hair. No attention was drawn to that part of the picture, but it was the only coloured part of the picture, so it must be playing on her mind. I am sure psychologist would have a field day with that one. her other concern is that if she goes bald she will be a boy. But I have convinced her that that will never be the case. I have been upset around her on the first day, but have kept my emotions in tact when I have been around her since (or so I think....). I just want to know that as parents who have no control over the situation, when will it get easier. I have adopted the worst case senario so that if things get better, then thats great, but if it doesn't, I'll be prepared, but I don't know if that is the healthiest way to go about it. There are no support groups where I live, so I am hoping this site will become my "support". I just want to stop this from taking over my life, and yet, I don't know how I can do this. I need to be strong, I just dont know how to. I know it is early days, but I feel like it isn't going to get easier in a hurry.
Replies to This Discussion
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Permalink Reply by Lisa Hargreaves, Charlotte's mum on -
Wow - thank you so much for your reply. It is amazing the strength we have as mums or as dads. I love what you wrote about this being our journey as parents as well. It is true. Jack will cope with his journey because you are there beside him. Thanks for the virtual hug - one is coming to you too!!
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Permalink Reply by stacey on -
hi lisa yousound exactly like me my 4 year old little girl was diagnosed 2 weeks ago and since this has consumed my every thought. I cry myself to sleep and i am so stressed and filled with guilt did i do something , then i feel like it could be worse but then feel so sad and scared what the future may hold. My daughters name is samantha and she is beautiful she has a dime size spot and another one starting has had injections in the dime size one and cream on other smaller one, I hope and pray that it clears and does not come back but on line you do not hear many of thise scenerios which freaks me out even more. I like you also try to prepare myself for the worse and if that does not happen great but if it does i feel if i am prepared i will be able to accept i better. Almost accepting it before it happens. I am 2 weeks in and I am more of a mess than ever. She is such a sweet easy going little girl. Her 8 year old brother has been told what may or may not happen and he has been telling her every day that she is a princess no matter what she has no idea why he is suddenly says that but just looks at him and says I know. I hope this gets better or i can somehow deal with this better
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Permalink Reply by tash on
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be honest with your kids. it might all fall out. she might grow up and want to shave her head. support her. be her support. be open and truthful. she doesnt become a boy, but she might lose her hair. she needs to be ok with whats ahead. and so do you. you need let her know anythigns possible, but focus on the good, how great she is, and dont draw attention to looks, more so of her personality. thats really what matters. dont let anything get in her way of accomplishing anything. it is not the end of the world, nor should you treat it that way.
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Permalink Reply by Amanda Crichton on
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Quick question do you live in NZ? Thanks
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Permalink Reply by Debra (Alex's Mom) on -
Lisa, I am with Cindy, I have a boy as well. My son started out with patched and within a couple of months, he had Universalis. It is hard as a parent to watch our child go through something that we have no control over. My son is an identical twin, and it hurts that his twin has hair that needs to be cut every other week. You would be surprised as to how well our children take it; much better than we can. Hang in there and remember one thing: there is nothing that you did, and nothing that you could have done to stop it. That was the hardest thing for me and my husband.
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