The Child Leads

My daughter had an organ transplant (a kidney) at age eight. In fact, the “gift of life” was literally a gift, as the transplant happened on her actual eighth birthday. It was an uneventful kidney failure, if you can say that, because she didn’t have complications, she wasn’t near death like our son, and she was doing fairly emotionally well, although she had some anxiety (obviously).

Since her transplant, her life hasn’t been as easy. A  year after transplant – about 4 years ago – she got a skin condition called molluscum, which is in the wart family, but small and faster spreading than your typical wart. Her immune system compromised now and unable to fight off a simple virus. We started seeing a dermatologist and we aggressively fought the virus for months going every two to three weeks. Then years. Finally two years later she was molluscum free. Unfortunately, she developed other skin conditions as a result of immune suppression no matter how hard we worked with the transplant team, this issues didn’t let up.

She had severe eczema. She would scratch all night in her sleep (affecting sleep quality) and a lot of the day causing serious, infected, open wounds all over her legs. No matter what we tried, we couldn’t relieve the itching. She’s been in misery for over two years dealing with this and it’s heartbreaking to say the least. A few months ago, it moved to her arms and I saw her change her shirt one day and there were 20 more wounds. She’s developed intermittent alopecia as well, causing her hard to fall out in small patches we’ve been able to hide.

We’ve tried every treatment. Natural, chemical, everything. We have a cabinet full of failed creams, nearly all prescription and all expensive. We’ve landed on a treatment of applications of a salve and a lotion. One to fix and heal, one to help the symptom. It’s imperfect but with religious morning and night generous applications, it is improving.

It’s left horrible scars. At least a hundred dark-colored spots that cover her lower legs, go up the back and front of her thighs and are scattered all the way up her arms. It’s increasingly gotten worse. Last summer she was able to explain them away because she didn’t have as many and they were smaller.

It’s hard being thirteen with a perfect set of circumstances let alone a set of imperfect ones. It’s been a stressful year. A lot of her friends last year moved onto high school this year, so she felt more alone. She had the skin issues, creating her to want to hide her body with long sleeves and jackets, no matter what the weather. She wanted to cocoon inside something that would keep her safe, keep her from being noticed. Like I said, bad year.

This year during the winter, she started pulling out her hair. At first, I thought she was only scratching it and the hair was falling out. We were applying lotions and potions and nothing seemed to help. On a drive home from school one day she confessed she’d been pulling it out. Trichotillomania. So far, a hair cut to cover two spots and it stopped for a bit. Recently she’s had a bout of it, leaving a large section hard to hide when she’s swimming this season at our neighborhood league.

Leaving me to tell you about her swimming. She needed a little encouragement to swim on her team this year because we knew she’s be exposing what she has spent the last year covering. We talked about it a lot leading up to the first practice with her say, “I want to swim and I don’t want to swim.” Finally, early May, she had to don her practice swimsuit and walk around the pool, legs completely showing and she did it. I was crying for her, not because of the issue but because she was so damn brave.

Brave. I am almost sure I wouldn’t have done what she did. I know I can often say my kids are amazing because I truly think they are with all they have had to and have to deal with, but facing the skin issue in a swimsuit? Wow.

My daughter stuns me. With each time over the past few weeks walking around the pool to get in line for practice she puts a foot in front of the other and just did it. She didn’t complain, she just did it. Head up high like nothing was wrong.

She and her dermatologist talked about what she would tell people when they ask about her legs and arms, because you know they will ask, as if it’s any of their business. When I asked her on that first day of practice if she was prepared with an answer if someone asked about her skin, with no hesitation she said, “I’m going to tell them while I was skydiving I fell into a bush.”

That was that.

I know we expect to help our kids through their issues, because we want to make sure they are prepared and we work really hard to do that, as parents. Then sometimes, like when my girl told me how she would deal with people talking and asking about her skin, I think, that girl is teaching me. 

I like her approach. As I struggle with personal, ongoing issues, she’s reminded me that among kind and compassionate, I should take her lead and keep moving forward, with a bit of a sense of humor and a bit of in your face.

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Please refrain from sending me strongly worded emails about me talking about my teenager’s health situation on the internet. She didn’t mind. In fact, she wanted me to, to help explain that things aren’t always as they seem and sometimes people need to keep their mouths shut. She did, however, ask that I not use a picture of the spots on her legs.