It’s rare disease week. Actually, rare disease day falls on the last day of February every year…ironically the very next day we celebrate Faith’s Birthday.
Faiths disease is rare. Rare enough that when you try to research it you will come up pretty empty handed. You see many times, even in our case on the legal medical papers and diagnosis they call it by a related disease. Pseudo-hirschsprungs….when in fact she isn’t a classic hirschprungs case, Faith has hypoganglionosis . Hypoganglionsis is believed to be a congenital defect, caused as she was developing in utero.
Faith struggled for the first nearly 5 years of her life undiagnosed. Thankfully, when we took her to The University of Michigan Mott Children’s hospital they had her diagnosed in days and she began to receive life saving treatment. There were three physicians taking care of her in the beginning, and our primary surgeon sat us down and let us know that this wasn’t going to be an easy road, but a long one. And that they were there to make the ride go smoother.
You really have no clue what that means when someone says that to you….I was so taken back. These were the days in my life where I wanted to hear the good news, and wish away the bad. I loved this woman already, but I remember thinking to myself that someday, I would give her feedback that that is such a harsh reality to say to a parent whose child just got out of an operating room after a 6 hour surgery….looking back I realize, she was so gentle with her words…she was so hopeful…there was absolutely no way to prepare us but to let us know, it wasn’t going to be easy.
And it’s not easy. It is a struggle, everyday. I’ve thought so much lately about what makes it so hard. I think because I’ve realized lately that what makes it so hard for me is so different than what makes it so hard for her.
I think for me, what has always seemed so overwhelming is her care, and making sure I am doing everything I possibly can to give her the best shot at good health. Faith has a broviac, a feeding tube, an apendicosty, and a colostomy bag…she requires a great deal of health care and many things 24 hours a day to keep her in as good of health as we can. We receive 14 large boxes delivered to our house every month filled with medial supplies. We deal with 4 pharmacies and 3 medical suppliers, she sees 5 specialty doctors.
And when you have a rare disease, so much is trial and error….thankfully we are in the hands of physicians who answer emails around the clock and as Faith says, they never give up on me….
But the care isn’t what is hardest.
Faith’s birthday was two days ago and her friend Addy had a snow day, Faith was so happy as we headed to pick Addy up. The girls were going to play with dolls all day long. But all day long she kept going into a room by herself acting as if she was angry about something. Finally, I called her into my room and asked what was bothering her, truthfully, I was a bit irritated as I worked so hard to make the day super special…..She burst into tears crying saying to me, I JUST WANTED ONE DAY…..finally, when I calmed her down we talked and she explained that normally she’s fine with feeling crummy….that she’s used to it, but she had prayed and asked god to help her feel good just for her birthday, and she was crushed that it didn’t happen.
So that’s it..it is crushing to me, it is hardest for me that I can not fix this…I can’t give her the one good day she asked for….she told me that night when we were doing her treatment that she didn’t remember the last time she felt great. And she hates the fact that she feels better when we are in Florida than in her own home. I stay so strong when she talks to me, because she hates to see me cry, but that night she said, its ok mom, I know this makes you sad…I don’t think sadness describes it best, I think helpless…because while it makes me sad all of the time, the helplessness is what hurts me the most.
For Faith its simple, she just wants to be a regular kid. She wants to have more than one or two friends that never forget about her (boy am I thankful for them) because with kids, its out of sight out of mind….but not for her. I plan the only free time I have in my day around picking up her brother so she doesn’t have to come and see the school that she cant seem to get well enough to attend. She just wants to be a regular kid, and people tell her all of the time she is, well news flash….that might be the PC thing to day but it is also 100% untrue. There’s nothing regular about the way she lives her life and by telling her there is, tells her you totally have no clue what we are dealing with.
These posts aren’t easy to write…I sit here with tears streaming down my face and a lump in my throat that burns every time I swallow. But this post, is important. It is important for you to know that there are children suffering from rare disease and we need advocates.
For Faith, we have the Charles Woodson Clinical Research fund…There is no private institution that will ever fund research to cure Faith’s disease because there is no money in curing rare childhood diseases. Which is why we are so grateful for The Woodson fund and the research it allows.
Faiths disease has no cure, but since her diagnosis there has been advances in medicine that help her everyday. There are safer drugs, there are new treatments, mainly thanks to advances in medical technology made possible by people who want to make life easier for children like Faith.
I have a dream for Faith that when she is older she is able to say, I had a bad day today, but that’s okay, because it was JUST ONE DAY. With the help of great Doctors and great people who believe in medical advances I think we can make my dream reality.