Adrift

Home again, home again, jiggidy jig.

The funny thing about getting home (after you have been in the hospital for chemo, and picked up all six of her refills) is you are suddenly EXHAUSTED. Even so, you often stare at the side of your dresser while your husband sleeps. It's sort of funny how trivial a thing like sleep is to me at this moment, however; I don't care much if I am not sleeping as much as I am letting on. I SHOULD call my doctor and tell him the sleep medication isn't working, but I can't bring myself to care enough about it. So I just continue the insomnia cycle, and let my mind wander, which is always a dangerous thing.

Kathy and I briefly talked about holidays this year, because it is going to be complicated. Everyone is so optimistic that she won't need more than four cycles of chemo, and for the life of me I just can't get on the same page. I WANT so BADLY to be like everyone else that is so strong through all this- I WANT to say, OH, I'm sure she WILL walk and use her legs, or OH, I'm so sure she will be the baby that beats the odds and only needs four cycles of chemo, and LOOK! we are already half done... But it is SO HARD when you look at her and her legs just lay there, not being kicked around carefree like other babies. And hard to think we will need only four cycles of chemo when the tumor is so big, and we constantly worry about her catching some kind of illness. Which brings us to the holidays- and everyone will tell me how far away Thanksgiving and Christmas are, but you have to see it from my point of view...

I have NEVER missed going out to the farm even before I had kids, and it kills me to think we can't celebrate Christmas as a family because Charlie can't be around everyone with her counts so low. What kind of first Christmas is THAT for a baby?? Even if we had people come visit US, it's just not the same...

Kev and I were chatting about her prognosis last night, and it got me to thinking that we have never really ASKED that question... Kevin says, "All they keep telling us is that she is doing really well...".

Well, pardon my french, what the hell does that mean, really? She's doing well for cancer? She's doing well for chemo? She is doing well because she is still breathing and smiling?

I want a straight answer about MY CHILD. And we can't get one. No, really. All we ever hear is, "Well, we will have to monitor her progress, and see how she does." What is THAT? This is a human baby, OUR human baby, we are talking about. Not a car, not a newspaper column. I don't want to sit around and wait for the reviews to come in to see if a movie bombed at box office. I want to know if she is going to LIVE, and if things will go back to NORMAL. Will I ever have a toddler that is running around getting into stuff with her big sister?? Or do we need to mentally prep ourselves for a wheelchair? I know what you are thinking... You are thinking, as long as she beats this cancer, what else can you ask for?

I have a newsflash for you. I am EXTREMELY selfish about my children. It's not going to be GOOD ENOUGH for me if she gets better. I WANT her to be able to do everything she wants to do. I WANT her to grow up, get married, have babies, and be able to look through these pictures and hospital bracelets, and baby hats and blankets and say, "Hey, I was SICK. And I BEAT that. And look where I am NOW!".

We got denied for SSI. It was like a slap in the face. I have a baby who qualifies as a paraplegic, but couldn't get government assistance because Kevin and I make too much money.

Two questions about that- one, it's not ME applying for benefits, it's my five month old, so PLEASE tell me why income factors into that?? How can you possibly make TOO MUCH money for your LEGS to be worthless? Hey, you don't REALLY need your legs, they make WHEELCHAIRS, so the government is going to stiff you.

Other question- WHO CAN LIVE ON UNDER $2400 A MONTH???

According to Joyce, our caseworker, the government hasn't updated the cutoff since the 70's, so if you make more than $900 a month, you make too much.

Well, THANK YOU VERY MUCH USA GOVERNMENT. My faith is renewed in the United States once again.

No, we don't need the income from Social Security to get by, but I think that Charlotte is ENTITLED to that money because of everything she is going through, and it should have been put in a savings account for her for medical expenses and school when she gets old enough.

Joyce was going to look into it, but I'm not holding out any hope. If your own government would come to you in your time of need, you realize pretty quickly that the only people you can really rely on are yourselves.

Speaking of Joyce, she stopped by to help me fill out grant papers yesterday, and commented on the hat Charlie was wearing. Apparently, she had picked it out- even though Lisa Keller had given it to us earlier in the day and told us SHE had picked it out. We called her out on it at rounds- it was hilarious! Her and Joyce were laughing about it. Here is a picture of Charlie with the Joyce/Lisa hat:



The story is that when Joyce saw it, she immediately thought of Charlotte and nabbed it. Charlie is really popular at the hospital now- our nurse Kali even stopped in on her day off to see her. Words cannot express the happiness the nursing staff has brought us in the special care they give our daughter. And Charlie LOVES the attention... She just wouldn't be a Rufener/Christen if she didn't!

We also had Joyce stop by during Charlie's Hickman surgery to give us a pink crocheted blanket donated by Hunter's family. Hunter is a little boy (12 months old) who also went through Neuroblastoma, but is now in remission. I got to meet him and his mom Kristine while Hunter was here for his six month scan. The blanket is beautiful, and we send well wishes and hope for his continued remission. I also sent Joyce this picture of Charlie with the blankie per Kristine's request. Joyce had said that that's what Kristine had wanted in return for the blanket, but because of privacy rules she wasn't technically allowed to request that... Well, of COURSE Kevin and I were 100% okay with getting a picture to her. It's the least we could do!




So thanks yet again to everyone on staff at the American Family Children's Hospital for Monday and Tuesday- for making us feel like we are at home even though we were half an hour away, and for helping us to cope every day with the hardest decisions ANY parent will EVER have to make.

And thanks to our families, who keep in touch and remind Kevin and I to take a break for ourselves once in a while (Kathy).

We love all of you, and vow to repay the kindness that has been shown to us.

Kristi Rufener