this is not normal…

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In April Faith had an NG tube placed in her nose for tube feeds. Because her digestive system doesn’t work, and hasn’t worked ever in her five years she doesn’t eat nearly what a child her age should be eating. The solution to this tube feeds. She has an IV pole at home and she wears a backpack when she goes out of the house. The issue of course was the tube that was always taped to her face. When ever anyone would try to take her picture she would cover her tube up with her hand. The tube really bothered her.

The surgeons soon decided it was a long-term problem and admitted Faith for an insertion of an G-tube, a more permanent tube that goes directly into her belly. She was ecstatic! She said, “now I will look like a normal kid.” She told everyone, “I’m getting my tube out of my nose, everyone with think I am a normal kid now.” The response of just about everyone…”Faith you are a normal kid already.” I am sure it seems wise to respond in this fashion as an adult. I am sure it seems that’s what she would want to hear. I am also very sure as adults we see things very differently.

At five, she is the wise one. She is not normal. This is not normal, it is our normal, but it is by no means what a healthy five-year old kid is doing. She gets her nutrition thru a tube that is inserted into her belly. That nutrition is a formula that comes in a can and is carried around with her all the time. Part of her colon is in a bag on the outside of her body. She takes medicines around the clock, we do colon washes twice a day, her ostomy bag has to be changed, her stoma has to be cleaned, her g-tube has to be flushed, her incisions have to be cleaned.

We’ve converted part of my bedroom into a treatment room. I have to time her colon washes around when I have another adult, who is on Faith’s pre-approved allowed to see my colon list, available to hold her hand. She needs that person, because even though we do that procedure 2x everyday, sticking a rubber tube into your colon and washing it out is a very scary thing. She has to pee on a schedule, because her bladder is so enlarged from this disease she can carry around massive amounts of waste in her bladder with no clue at all its there. We have to keep track of everything she eats, every calorie, so we know how fast we need to run her feeds so she gets the amount of calories she needs.

The worst part is the pain, and the pain control. She wakes up every night crying that her tummy hurts and I have to turn off her feeds. I give her pain medicine and I hold her up in bed until she falls back to sleep, sometimes it takes a couple of hours. She often wakes up an hour later crying in pain again. On a rare occasion she sleeps thru the night. Those nights are the scariest for me, I wake-up in an absolute panic thinking something horrible must have happened while I was asleep. I run to her room to feel her stomach and make sure she is still breathing.

None of this is normal. This isn’t what normal five-year olds are dealing with. Recently, we went out on my friends boat. He drives really fast, and the wind blows, and the water splashes up on to the boat it’s too loud to talk, or to even think. When we got back into the car Faith said to me, “Mom, I loved when we were going really fast on Gary’s boat. I felt totally normal kid and forgot I was sick.” Funny thing about that was, I had too.

So in the midst of all this chaos I have to look for things that help us to forget what our reality is right now. Because sometimes its nice just to feel like a normal kid.

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9 thoughts on “this is not normal…

  1. gina

    Hi there. I want you to know how great it is you are sharing Faiths story with us but also the info because it is good info for people who have the same type of illness.I have had stomach issues and missed a lot of school yet dr.s found nothing wrong other than juvenile arthritis after having 4 surgeries on my stomach I am on domperidone from canada and I vomit.dehydrate and very ill. I have been warned it is usually chronic.I am nauseous 24/7. I am sorry this happened so soon in her life or at anytime.it is so painful and like a bad dream.I pray I am healed and am praying for Faith to be healed. Thanks again for sharing. *hugs*

  2. Arlene Genske

    Dear Mary Ann,
    We want you to know that our thoughts and prayers are continually with you, Faith and the rest of your family. You are one strong gal and our hearts go out to you for all that you do for that adorable little munchkin, Faith. Tell her that Mrs. Genske has a bowl of your favorite mac and cheese for her!!! May God lift you both up and heal your little Faith.

  3. Jenny

    You are such a strong woman with a very strong willed little angel!!!! You are both an inspiration to everyone!!!! She has more courage and strength than most adults I know. Both of u and your family are in my prayers every night & I wish her well everyday!!!! God bless both of you!!!

  4. Pat Preston

    Mary Ann – Thanks for all the detailed information you are posting on Faith’s medical journey and your struggle to be there for her 24/7 and spend time with Will and his daily routine. How you can do it all is so amazing! Faith is so strong in all of this! It was great to see you at Grandpa’s big 90th birthday party. The kids had so much fun fishing and Ian will always remember catching that big bass! Scott was so nice to spend that much time fishing with them. Faith was so cute at the party and I got a chance to spend time talking with her. Wish I lived closer to all of you and my dad and family. Stay strong in the Lord and keep good thoughts in your heart. I pray for Faith and your family and Aunt Barb. What a good mom she is to you and a great sister to me. Love and prayers, Aunt Pat

  5. Pat Preston

    Aunt Pat- Hi Mary Ann. In my last post I put “Aunt Barb” instead of “Grandma Barb”. Oops! I had just come back from CA and visiting with Tony, Sara, Isabella, Mia and my new grandson, Joseph David. I had been talking to Tony about Faith, you, Will and Aunt Barb. Guess I was still in ” Aunt Barb” mode when I replied to your blog. I’m sure you knew what I meant. (Sorry Barb!) Just got an email from Barb saying Faith is home but is still having pain management issues. I continue to pray for her!! May God’s healing hands be on her body and make her well. Love to all of you.

  6. I am pretty ignorant about this kind of health problem, so thanks for educating me with no BS. I really feel guilty reading all of it because I’ve always been healthy my whole life and I wish there was some way I could give her a chance at that normal life somehow like I’ve had. If there was one thing of me that’s always been flawless, it has been my health and I know now as adult how grateful I should be everyday for it.

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