Friday, December 20, 2013

Where are you Christmas?

We are not exactly getting our jolly on this holiday season. The bright spot has been the astounding success of the kids' toy drive, which raised almost 700 dollars, and allowed us to donate a van full of toys to St. Vincent DePaul. The kids loved seeing the "workshop" where volunteers were wrapping and sorting the gifts, and meeting a few of the children at the day shelter.

That's the good. And it's very good. But the bad is unfortunately pretty darn bad. Cassie's been sick for a week now. We thought she might have pneumonia, but fortunately it's only an upper respiratory infection. But she has coughed until she's vomited a few times, coughs all night long, and her throat is so raw that she can't eat. She hasn't felt well enough to go out, so we missed the Christmas parades and are pretty much housebound.

Our financial situation is pretty bad. Okay, make that gravely bad. Ever since I bought the van in September, I've been robbing Peter to pay Paul each month to make the payments, and then the brake repairs, the increase in insurance premiums, and now my bank account is several hundred dollars in the negative and I have about 40 bucks in cash for the next month. I can't really knit fast enough to make much money at it. I wish I had six hands. So while the kids were happy to sacrifice getting a lot of gifts this year, the lack of funds for baking, activities, or a real Christmas dinner is a downer. Walt ran over some glass on his bike and needs a new tire, and that's going to have to wait. I have no idea how I'm ever going to catch up. I'm considering turning the van back over to the dealership and living without a vehicle.

Between Cassie being sick and worrying about money, my anxiety has been at Defcon 12 and I'm not getting much sleep. She wakes up 2-4 times a night needing me, and when I try to go back to sleep my thoughts run around inside my skull like adhd monkeys on Red Bull. Joy to the world, right? Unfortunately I think I'm just ready for the holiday season to be over.

Monday, November 4, 2013

Tuesday, October 29, 2013

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.

Saturday, October 26, 2013

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"

Wednesday, October 23, 2013

Friday, October 4, 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

Monday, September 23, 2013


The Wrong Side of 6 A.M.

Cassie has been up all night in pain. I just gave her a fourth round of meds, and pulled out the heavy artillery, the Versed. I then informed her that if she doesn't go back to sleep, next time I'm coming back in with a cast iron skillet. She retorted that I'm lucky she's too tired to get up and call Children's Services. We get kind of weird after a night of no sleep, but I'm glad she appreciates my sense of humor.

Friday, July 26, 2013

Cassie hasn't been feeling great this week. She's been very sore, especially on the bottoms of her feet, and extremely itchy. She's needed a lot of pain medication the last couple of days, much more than usual. Sometimes increased pain can be an early sign of infection, so I'm crossing my fingers that's not the case this time.

Last week Cassie went to the roller derby with her friend Rachael, but wasn't able to stay very long. She said the heat was just too much for her. I hate that not only pain, but simple things like the weather deprive her of opportunities to go out and have fun.

After eagerly stalking the internet all week for Monster High news coming from San Diego Comic Con, she got a very special surprise in the mail today; a SDCC exclusive Wydowna Spyder Monster High doll. I'm so grateful to our friend Sean for connecting us with his friend Rita, who picked up the doll for us, then insisted on sending it as a gift.

Wednesday, July 17, 2013

The Little Things

Cassie has two friends over spending the night tonight. They have played video games and had ice cream and giggled all night. It's amazing to see her light up, to see what an extrovert and true social butterfly she is. It's so hard for her to get out of the house and enjoy herself, so I have tried hard to have the kind of home where all the kids want to come over and hang out so that Cassie's friends feel comfortable coming to her. It's harder on her now, most of her friends her age are now driving, have jobs, boyfriends or girlfriends, or camp, or other activities that she just can't participate in, so she gets to feeling very isolated. But tonight she's happy. She's got two of her best friends here and she's just a regular teenage girl staying up way too late during summer vacation. I'm eternally grateful for these moments when she gets to feel normal and alive.