Well I was asked to share my daughter’s story with you guys, and I gladly will. My hope is that it can help parents out there who are new to this and feel completely alone. I, myself am pretty new to this whole thing, but feel like I have come a long way since we first figured out what was happening. But we have a long way to go, as Abby is only 2. I’m sure there will be bumps in the road, but I’m hoping that the love and support I give her will be all the cushion she needs for those bumps. Here goes:
Abby Rose Williams. Born to me and her daddy on May 10th of 2010. She was a big girl….9 lb 8 oz! She was my second of 3 girls. From the beginning she had a mind of her own and what she says is the way it’s going to be. When she was born she didn’t have much hair. Never thought twice about it. By her first birthday, she had just peach fuzz. Never thought twice about it. My husband shaves his head, so we got lots of comments about how she has “daddy’s hair cut”, but I knew it would eventually grow in, so it didn’t bother me. By 18 months it had started to grow in quite a bit! Much more on the top than the sides, but again, never thought twice about it. In February of this year, my husband and I started noticing a round spot on the top of her head that was thinning. We thought maybe she was rubbing her head against her crib while she slept….we had no clue what was going on. Finally I decided to look it up. I saw some stuff about alopecia that I just glanced over, cause there was no way it was alopecia. I was sure it was something else. Well when I came up with nothing else, I decided to look more into alopecia.
I looked up the signs and symptoms of alopecia and when I read “25% of people with this condition also have pitted nails” my heart sunk into my stomach so fast I could have passed out. My world stopped at that moment. I knew that was what it was. I had always wondered what those markings in her fingers were. Now I knew. From there, the hair all over her head continued to thin. We had the official diagnosis from the dermatologist is March. By then, her head was essentially bald. For days and nights I would cry. My husband would cry. I felt so alone. Like no one in the world knew what I was going through. Even worse, that no one in the world would know what my beautiful baby is going to have to go through. Abby was our world and the thought of the world being cruel to her was too much to handle. I wanted to put her in a protective bubble and never let her out. My heart ached for her. My heart still aches for her as I know she will have a lot to overcome in the future. Fast forward to today. Her hair started to grow back in, very patchy in back and in the sides, but is now falling out again. But I expected it. She is still the queen and ruler of this house-alopecia or not 🙂
I have finally accepted that this is how she will be. Somehow, this is Gods plan for her life. And if this is the plan He has, He will see her through, and so will I. She is like every other little girl out there, just without hair. And that’s ok. She will be ok. She will be ok. She will be ok.
We as parents need to just keep telling ourselves that. We need to make our communities aware and knowledgeable about alopecia. Kids make fun of, and are scared of what they DON’T understand—so you know what—let’s MAKE them understand! Let’s spread the word. Let’s get involved in organizations like This Is Me, and CAP. CAP has been amazing and the love and support they have given so many cannot be measured. We as parents need to support each other and be here for one another. It’s hard to stay positive at times, but for our kids we HAVE to be. It’s not an option. We are their crutch. So to all the parents out there who are new to this, there are soooo many people out there who are there for you. Don’t be afraid to reach out. We all need to be here for each other!!!
Sorry it was so long, but honestly this was a condensed version 🙂 I could talk about my lovie all day long 🙂
Thank you to Abby’s mom Katrina for sending this story!