What Happens When...

We're in the middle of National EB awareness week and I really meant to blog about it more, but I've been too busy living with it to write about it. Instead, I've decide to write about something that I'm sure will be controversial and might just get me labelled as an ungrateful jerk. I guess this is just my week to kick the hornet's nest. But with the holidays coming up, this has become a topic of ongoing conversation in my household, and maybe some other families have been through this, so I'm going to post. What's the worst that could happen?

I want to talk about what happens when your terminally ill child doesn't die on schedule. Yes, that sounds terrible, but it was also a miracle. A year and a half ago Cassie was discharged from the hospital with an antibiotic resistant infection and the desire for no more active treatment for her condition. She hasn't had an IV antibiotics, any blood transfusions, and only a handful of cursory medical exams since then. Yet miraculously, amazingly, she is still here. We managed to beat back the infection with exemplary wound care and keep it from entering her blood stream. It's still present, we chase it around her body from one wound to the next, but it hasn't gotten the foothold everyone expected it to. It still could, at any time, and she will become septic and die. But for a year and a half that hasn't happened. It's been a beautiful, amazing year and a half and I'd give years off my life for every minute of it we've carved out.

For the first several months after that last trip to the hospital, when my 15 year old daughter chose to have me sign a DNR order for her, there was a torrential flood of support from every corner imaginable. There were fundraisers to benefit our family, cards and packages in the mail, visitors from all over. I don't have the words to express my gratitude for each of those things. My family would not have survived 2012 without that support, emotionally and financially. Cassie would not have had the medical supplies she desperately needed, I would not have had food on the table or gas in the tank. Wonderful people saved us, and that's a fact. Cassie felt so loved and supported and yes, she and Walt got a bit spoiled by the presents and treats, by the fact that I broke down and got cable tv for the first time in many years. For the first time in a very long time I could decide I just didn't want to cook dinner and could order a pizza instead. It was alarmingly easy to relax into the comfort of the first period of financial security I can remember in the last ten years.

But like all things, it can't last. It didn't. People give generously because they want your dying child to feel loved, to have some magic even if that's just a doll, a card, a hug. But they can't keep giving, because people aren't banks. There are other children just as sick, sicker, in greater need. Other demands on their time and attention, and eventually the cards stop coming in the mail, the visitors don't drop by, the donations that fund a girl's Monster High obsession dry up. Life goes back to some semblance of normal, which for this family includes a pretty simple lifestyle out of financial necessity.

And the marvelous and grateful teenaged kids, who are grateful to be alive and no longer that sick, can't help feeling a little bummed that the spotlight is gone. That the Christmas last year that was truly lavish thanks to the generosity of some amazing people gives way to this year when there's no money for anything and the cable has to be turned off again and we can't go to any Halloween parties because the car needs brakes. They're not greedy kids, but they're kids, and it's hard. Sometimes it's hard for Cassie to feel like all of those people who told her what a brave, smart, angelic creature she was and how lucky they were to know her haven't just forgotten about her.

Sometimes she comes to the conclusion that they weren't really her friends, they just felt sorry for her because she was sick.

I have always tried to teach the kids that when you are most in need, you should give more to others, and that kindness will be returned to you. Walt still thinks that's bunk and wants an iPad, but Cassie seems to have gotten the message. So last night we decided that this year, we're going to spend Christmas Day volunteering to serve Christmas dinner at the shelter. Cassie is working on a design that we'll have put on t-shirts and try to sell them. The money will be used to buy toys for the kids at the shelter. Cassie has ordered me to take up the knitting needles and provide a hat and scarf to every homeless person in Baton Rouge for Christmas. I think she's reaching, but we'll see how far we get.

The kids won't be getting a game system for Christmas this year, but I've already gotten my present; seeing Cassie learn that service to others is the most powerful medicine of all.

National EB awareness week

It is National EB Awareness week. It's a week that always causes me to have a lot of mixed emotions, as I think about my kids' accomplishments with great pride, but also stop to think about all they have been deprived of because of this condition. I think about how I would give anything just to be a "soccer dad" whose kids' schedules were full with sports and activities and friends. EB is a very socially stigmatizing disorder. People stare. Other EB families have been asked to leave restaurants and other public areas. We once had a hair salon refuse to cut Cassie's hair. People just can't believe that the horrifying sores aren't contagious.

We live at a severe economic disadvantage because of the high costs of living with EB. Not just the bandages and ointments that aren't covered by insurance, but even the little things like needing to keep the AC at 70 year round because Cassie overheats from all the bandages.

EB has affected pretty much every aspect of our lives. It has a very similar affect on the lives of everyone who lives with it. There is currently no cure or treatment other than protecting the skin as much as possible through bandaging. The experimental bone marrow transplant is still years away from being a viable treatment. The only chance of medically improving the lives of those with EB is through research, and research takes money.

A few links to share for awareness week:

Cassie's Google Page by Sean Fannon

The Butterfly Fund -- Our Family's Favorite EB Charity

PUCK- Pioneering Unique Cures for Kids

Heal EB Foundation

Cassie's hands, or her "paws" as she calls them since her fingers are bound to her palms by scar tissue. This is called a "mitten deformity"

Epidermolysis Bullosa Awareness 2013

Birthday boy

My beautiful son turned 15 on Tuesday. When I think back to the very hard years when he suffered from Reactive Attachment Disorder I'm in awe of how far we have come as a family. This boy clawed his way to sanity an inch at a time and has grown into a funny, kind, sweet young man who anyone would be proud to call a friend. He still has lots of challenges in life. He has Epidermolysis Bullosa as well as a mild developmental disability. It is not likely he'll be capable of completely independent living, but given how far he has come and the sheer tenacity it's taken him to get here, I wouldn't count it out completely. He's a great kid, and I adore him, and I'm so glad that he's mine. He forced growth in me that I wouldn't have believed I was capable of either. He taught me patience, and the meaning of unconditional love. He certainly forced me to examine my own temper, my own actions, and to dig deeper and do better when I thought I couldn't anymore. It's been a wild ride, but it's worth every second of it.

Walt in 2003

Walt in 2013