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.


26 thoughts on “Cure

  1. Your daughter is amazing, teaching all of us. I hope you all had fun with Charles, but WOO HOO for research to help cure Faith. Trece Wyman, Clifton Park, NY. I found you thru Ashley at Little Blue Boo.

  2. What disease does she have? My daughter was diagnosed with FAP at 1 and eventually she will have to have her colon removed.

    1. Faith has hypoganglionosis & sma syndrome. She’s had all but a few inches of her colon removed. And was that the best thing we ever did. She had chronic enterocolitis & she hasn’t had it since we removed her colon. We will be thinking about you & your daughter.

  3. I just stumbled upon your blog and wanted to tell you you are doing an amazing job! Faith is so lucky to have you! And she is such a brave fighter!! I pray your team of doctors will find more answers for your precious little girl!

  4. I want to say how absolutely beautiful your daughter is. As adults, it’s sometimes difficult to step back and find the good things amidst all the bad, but hearing a child’s perspective makes us realize how ungrateful we are so often. I have a permanent ileostomy and am positive about it most of the time, but on my next “down day,” I’ll think of your daughter and remember to focus on the positive. 🙂 -Charis Kirk, VP, Girls With Guts-

  5. Your daughter is amazing. My daughter was born with a double colon and had most of her colon removed as well. We do washouts as well and I know exactly how you feel and my daughter knows exactly how your daughter feels. We travel to Cincinnati Children’s Colorectal Center and they are excellent.
    Anyways, is great to read about your amazing daughter and learn about what she has to deal with each day as well.

  6. Your daughter Faith is a remarkable young girl and it is clear she must have gotten that from you! It is so refreshing to hear of someone so selfless and caring. I thank you for sharing your story and hope Faith receives the best care out there. I will be thinking of her when she is busy worrying about everyone else.

  7. Faith is truly an inspiration. I have a colostomy and have had an illeostomy in the past. Additionaly I am a RN. I find it difficult to manage on some days too.. When I have an issue, I just call it a wardrobe malfunction, and try to move on. I know that as a child, this must be very difficult to do. However, Faith has the right attitude. As a parent, all you want for your child, is to be happy and healthy– if I had to choose one, I do not know which I would choose. God Bless you and prayers for your entire family.

  8. Your Daughter Faith has a beautiful soul. Her name in Latin, Greek and English mean the same thing: Confidence, Truth and Belief. After reading a post on Facebook about how she got to model for Persnickety Clothing, I believe the post shared was meant for my feed. Why? to pray for Faith. The other day I heard the Holy Spirit speaking to me saying that I was a peculiar person. I have heard this one other time about three years ago addressed to me at a woman’s conference. It may have been for me that morning, but I believe it was meant to share with you. Your Daughter Faith is a peculiar person. Meaning, she has compassionate heart like no other. An extremely special love that she loves to share and give to others. She doesn’t look at her illness as if it is a curse. The strength she has is for her family, her friends and for those who don’t have enough strength. She reminds me of the story of the Centurion Soldier in the Book of Luke 7: With his great faith and that he was not worthy even to come unto Jesus for the healing of his servant. Jesus marveled about the Centurions faith and knowing his authority. Faith knows of her authority in her illness and who has the control. The scripture given to me I give to you for Faith. Deuteronomy 14:2; For thou art a holy people unto the Lord thy God, and the Lord hath chosen thee to be a peculiar people unto himself, above all the nations that are upon the earth. Proverbs 17:8; A gift is as a precious stone in the eyes of him that hath it; whithersoever it turns, it prospers.

  9. Is it Dr Dan Teitelbaum?? He was our surgery resident back in the early 90’s at Columbus children’s Hospital. Such a great Dr. -Glad to hear he is doing some great research. I wish for a cure too.

  10. Wow, you have a way with words. You and your daughter are more than an inspiration to me you make look at my life differently. I have a son born with a great heart defect and other various problems. We too have spent way too much time in the hospital and even when he is out and people ask how he’s doing I can only say “better” because he is not doing great. He also has tummy tube with bolus feeds and way too many meds. Somedays I just hate it but he is such a magical being at only 3 years old that I somehow also feel so lucky to have him in my life. Anyhow thank you for your courage and strength and for your beautiful blog it brings tears to my eyes. Thank you thank you thank you.

    1. I’m so sorry that you & so closely relate to what we deal with. Life with a chronically ill child can be so challenging. Ill be thinking about you both. Stay strong mom!!!

  11. Wow your daughter is an amazing little girl! I will keep you all in my prayers. Also i want to make her a doll. I started making them for my nieces a couple years ago and its turned into something bigger. I LOVE when i find someone i can make them for and i would love to do that for Faith. If you can email me ill give you the link to my fb or blog. That way you can help me pick out what she would like 🙂

  12. I came across Faith’s photo shoot today, and I am at a loss for words! And not because I feel bad, but because your testimony literally reached my soul! I can’t begin to put into words how grateful I am to have outgrown my complications of being 9 weeks early.. All i can say is thank you from the bottom of my heart, and I will be praying for your family!

  13. Thank You so much for sharing your story! My 7 year old Son had cancer as a baby and now has a Urostomy and Colostomy bag. He struggles with feeling “normal”. I can’t wait to share Faiths story with him. I wish this one tiny post could truly express my gratitude for Your family’s willingness to share. Faith your amazing!

  14. Your daughter is beautiful and amazing!! My son at the age of 23, who was never chronically ill, became extremely ill last spring. He was in the hospital for over 25 days in LA where he had recently moved to after graduating from college in Buffalo NY. He was starting his life where he wanted to be a film maker and what better place then LA! I got the call 3,000 miles away that he had been admitted to the hospital. He told me that he wasn’t feeling well, he mentioned he was losing some weight and had been having a lot of GI issues. Being 3,000 miles away from him I had that mothers intuition that something wasn’t right, I called a good friend of mine who lives in LA, and she drove over to check in on him. When she saw just how sick he truly was, she rushed him to the emergency room and there he stayed for the next 25 days. Turns out he was diagnosed with Corhns disease, which he never had any symptoms up to this point in his life. The doctors tried to calm his colon done which was beyond inflamed, after a week in the hospital his colon began to perforate and he had to have emergency surgery to remove most of his large intestine. He made it through all this and now has a ileostomy bag. His attitude is a lot like Faith’s. He said to me shortly after the surgery that this will now make him more unique then he already was. It’s been a year since that all went down and to this day he still amazes me and I’m in awe of this child of mine. He’s a young man, stepping out on his own, and this happens to him. Yes he had to take some time to recup from it all, but he told me I am not moving back to NY I’m staying in LA to continue on with my life. There a far worse things that could happen to me. He also added, think of all the money I will save from not having to buy toilet paper anymore!! He is wanting to learn to surf, he goes to the beach, swims, does everything a typical now 24 year old does!! I think when you are faced with situations like this, your heart aches for your child. However what I have gained from all this is knowing that my child is a fighter, one who is not going to let this ‘change’ of life stop him. We learn so much from our ‘babes’ and I’m so proud of him, he truly is my hero.
    So to Faith and all the people face with this disease I applaud you and have so much respect for you. Never in a million years did I ever think that my child would be faced with this life altering way of life. It’s people and stories like Faith and my son, and so many other stories I have read since a year ago, I know all these people do see life in a different way, and care in a different way. You never know what is around the corner for any of us. So stay strong, positive and never give up!
    Thank you for sharing your story, as a mom it really does help knowing there are others out there and knowing I don’t have to face this alone. No mother likes to see her child sick or hurt, but it does give reassurance knowing that we are all here supporting each other!!

  15. I have had my ileostomy for 26 years this summer because of Crohn’s disease. I was 21 when I got sick. It was extremely hard on my mother. So I can understand how hard this must be on you because you can ‘fix’ this, but your love and care are what she needs most. And obviously she is strong because of you. I understand more since because of my surgery I was able to move past the disease and carry a healthy child of my own. I say this for all those reading these posts that are facing ostomy surgeries now. The UOAA has excellent resources available to parents of children with ostomies, young people, teens, any age group or type of ostomy. Check them out. They certainly helped me back in the day, and I am still active in the local group now, to help new people that have ostomies all the time. Good luck! And remember you aren’t alone, there are lots of folks out there, you sound like you are raising an amazing girl, you should be proud.

  16. Thanks for sharing. My daughter has chronic intestinal pseudo obstruction.. she’s 5. We also have a bag ans gtube. I can relate to a lot..that’s a good thing esp u don’t hardly know any other child w nearly the same condition

  17. Stumbled upon your story through Facebook. I’m an Ohio mom of a medically challenged little girl, and I love your daughter’s spirit. I look forward to continue to follow Faith’s journey.

  18. I fell onto your story on a ileostomy group on facebook. I was a patient of Dr. Teitalbaum a couple times, but Dr. Arnold Coran was my doctor. I was diagnosed with ulcerative Colitis at the age of 9 and Mott, a posse of docs and some of the best nurses save my life. My UC was very agressive. I too grew up at Mott, know all about the 8th floor..Mott has changed so much..I should tell you that I am 45 now and a grandmother and have a perm. ileostomy for the last 27 years now. You are with a great team and they will find a cure. Your daughter is the cutest thing and tell her from one ostomate to another. WE ROCK. My kids, friends and even my granddaughter now have never known me without my ostomy.

  19. My daughter at age 17 had to have her colon removed and a colostomy we went thur heck with this. As a mother I truly understand we are suppose to be able to fix our childrens aches and pains .When I had to sign those papers at the hospital for her surgery i had left her room and went out side to smoke a cig,so i could go pray to god to give me a sign that i did the right thing was there a better way help me find a different cure for this and this lady walked up to me and was asking directions into hospital Vanderbilt in Nashville tn is scary if ya dont know where u are going so we began to talk she ask me why I was there and I just broke down after I told her all my daughter had went and was going to go thur she looked up at me and said my uncle has a internal bag he empties with a tube she even gave me his name there s a doctor in St Pete Florida He is amazing you get a hold of Susan at the B.C.I.R and you will be amazed at what he can do . after my daughters surgery and she had healed up from that she wasnt on any more high powered meds that has been 10 years ago she lives a normal life she has a 3 year old daughter her spiting image to. So parents of children with having to wear outer bags there is another way It dont hurt to look at it just at least look it up

  20. i saw picture of your daughter on crohns desire for life page on fb. i then got directed to your vlog. your daughter is very beautiful and strong. i have an ileostomy due to uc. i make bag covers. i wouldd love to make a cover for yur daughter. i have a son and daughter, my son has health problems so i know how isolated they feel. if you email me which bag she uses and an address to post to. i have princesses or fairies. i have others but there my girls covers.

  21. Thank you so much for your posts. You cannot imagine how your blog helped me cope with what I am going through right now. My daughter has a similar condition to your girl. I rarely cry except in the beginning when she had her first surgery. After reading your posts, I just could not stopped the tears from flowing.

    My daughter is currently still warded in hospital..7+months had past and I felt nobody understood me, nobody – not even my immediate family but after reading your post. I felt I was not alone.. I have not been able to stop crying since…guessed I have been holding them back for too long. Thank you so very much…

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