There’s this unwritten rule in the world of chronically ill children. If your having good health you don’t talk about it. The nurses at the hospital, the other parents, the doctors, even the kids themselves. It’s as if you can somehow jinx the health they are having, the fact that they’ve been hospital stay free for a few months, the fact that it hasn’t been bad enough to take the drive in to see your doctors. I’ve personally adhered to this rule. Not because I believe in luck, because I really don’t anymore, and not because of the fear that in some way they’re all right. Its more that I don’t really feel like staying out of the hospital is enough. That the health she is having is a big step in the right direction, but its just a step. So I will say to no one, Faith is doing great. I will say she is doing better, but she is far, far from great.
Tomorrow night we are attending the Woodson, Griese, Hutchinson Gala at the University of Michigan. It is a fundraiser for Mott children’s Hospital. Last year, Faith was the guest of honor. She was featured as the Charles Woodson Research Foundation child who has a disease for which there is no cure. Last year she was given a pass by her doctors to attend, she had just had most of her colon removed and she had to have another surgery before she was able to be discharged from the hospital.
I remember being skeptical that it was a good idea for her to attend. They had to change her TPN schedule, and I was worried that she would get to tired. That morning Charles came to see her in the hospital, I knew from that moment it was going to be a great night for her. She had an instant connection with Charles and after a a few long weeks in the hospital she was finally starting to act like herself.
The night, was magical. Matthew Stafford and his girlfriend Kelly B. Hall sat with us that evening and literally gave my son a whole new outlook on having a sick sister. He had a new attitude, a new friend, and thanks to that friend a trip to Chicago to learn all about Monday Night Football. The night was as good as it gets.
As magical as the night was, I left that evening and went back to the hospital to face the reality that we deal with everyday. And I considered the event and the money that was raised for research. I remember wishing that night that Faith had a disease that wasn’t so rare. So that I could feel more hopeful for a cure for her.
That was a year ago. And this past year hasn’t been easy. We have learned that Faith needs 2.5 liters of fluid daily to stay healthy. That she needs to stay away from anyone who has a virus, and that she has to stay home when there are sick kids at school. We know now that she can handle about three hours at a time of school, and often that seems to be a stretch. We know that she can’t handle regular illness like the rest of us so we do everything we can to keep her healthy. We know that she needs fluids, or tube feeds every three hours, and that her continuous pump seems to cause more trouble than bolus feeds. We know that she has chronic yeast infections, that are painful and so very frusterating. We still have to do wash-outs and she still after all this time hates them, but is mature enough to understand it is one of the big reasons we are able to be out of the hospital. We know that there is absolutely no rhyme or reason to her ostomy explosions and her stoma doesn’t care if shes home or at school. We know that some days shes just too tired to do anything, and so those days, she rests, because if you push her thats when she gets really sick.
It’s so hard. Taking care of her is the hardest job I’ve ever had. Not because of the work, but because you can’t ever let your guard down. You can’t sleep though feeds, you can’t miss fluids, you can’t skip a wash-out no matter how she pleads.
Shes so very strong. She hates her disease. She hates that she is dependent on a colostomy bag, and a feeding tube. She often says, I just want a normal life. But she is so very strong. Last week she told me she wants to get an RV and drive across the USA talking to kids about loving themselves and having good self esteem. She says, if I can love myself with all of this….everyone can learn to love themselves. The fact that she loves herself, just as she is, is such a lesson to me, & everyone around her.
But I want a cure. Not a treatment, but a cure. Last week she had a check-up and her surgeons are thrilled that she has been doing so well. Near the end of the appointment, almost as we were getting ready to leave the doctor who has been there from the beginning with us, said that they have started research on diseases of the colon similar to Faith’s disease. That they are hoping to find a cure. Right here, at our hospital, Faith’s doctors, who said they were inspired by Faith.
Her doctor who knows me very well at this point, couldn’t have realized that her words made me lightheaded. That I suddenly felt as if I couldn’t breathe. Yes, at this point they are working on rodents. But this is The University of Michigan, and some of the most brilliant doctors in the world are working on a cure for diseases, not unlike my daughters disease. A cure that would certainly change Faith’s unclear future.
So as much as the Woodson event meant to me last year, this year its seems to mean so much more. I want to walk around and introduce my daughter to everyone there, and show them where there money is going. I want them to see the face of the child they are fighting to find a cure for. I want them to understand how much she deserves to be well.
Tonight, I was telling her she would get to see Charles tomorrow. I was telling her that the money raised tomorrow could go towards Dr.Newman’s and Dr. Teitelbaum’s research to help find a cure for her disease. She smiled and said, Mom I can’t wait to see Charles, but what about MIra and Faith? Mira was the other patient featured last year, and Faith is our good friend from Mott who has Cystic Fibrosis…I told her that neither of them would be there. She seemed to be frustrated with me that I wasn’t understanding her, she continued by giving me yet another life lesson…I’m glad they are trying to cure my disease, but we can’t let them forget about my friends, they need a cure too.
These kids who have faced extraordinary obstacles have developed character that surpasses that of many of the adults that parent them. Faith will continue to do extraordinary things, whether a cure is found or not, I just happen to believe that she deserves the very best life has to offer, in the very best body we are able to give her.