June 24, 2020

I often think back to 2002 when my oldest girlie was getting sick frequently. At one point, the doctor told me that she believed my child might think she’s sick but really not because nothing was coming back “wrong”. I got to the point where I started wondering if she was just saying she had to use the bathroom so much but didn’t really need to.

I found myself frustrated at the situation but also thought what six year old would want to stop being a child to sleep often and asking if she could make to it grandma and grandpa’s home 20 minutes away without having to stop at a restroom on the way.

I. soon began realizing what it was going to be like to advocate for your child. I told the doctor that something WAS wrong, and we needed to find out. She said she would make appointment with a Gastroenterologist but since it wasn’t an emergency, it would be six weeks out. Soon after, it was July 4, 2003, and I remember sitting there on a blanket in a field waiting for the fireworks to start as the kiddos ran around to play, and once again, she had to use the restroom.

I remember my mom took her at least one of the times to the restroom. My thoughts as usual, tried to control my emotions. I was so confused because no child is going to stop playing that often to walk all the way to the bathroom just for the heck of it.

The next business day, I called to the specialist to try to move her appointment up because she now had blood. The question asked was whether it was dark or bright. I don’t even remember now but I do remember the person on the other line said that one was better than the other and made it sound like this was okay, I thought, “ANY blood is NOT OKAY!”

I was able to get her in little sooner. When we met with doctor she spent much time with us asking many questions. Then she took bloodwork. I asked how the bloodwork would be different than what already was done and came back all normal She said she had specific tests and numbers she was looking for. She called later that day and said, although my girlie looked really healthy, she was very sick and we needed to get her in right away for a colonoscopy, so we did.

A friend had come with me just so I had two sets of ears. I was able to go back with her and the anesthesiologist told her that he’d put a mask on her so she’d be put to sleep. My girlie started freaking out, eyes huge, screaming, and reaching for me, I was holding her and telling her she’d be okay. I asked the anesthesiologist and nurse what was happening as she wasn’t going under but instead fighting and looked scared to death. Someone else told the nurse to “get mom out of here!”

I will never forget my girlie’s fearful face and feeling so hopeless. I should’ve never so willingly left but I thought something must be wrong that I had to not freak out myself but instead leave. Later we found out she thought she was dying because my parent’s dog was “put to sleep” and he died so she was assuming that was what was happening to her. The doctor said she’d never use those words again. That was gut wrenching.

Later a nurse came out for me to sign for a further procedure to be done, an endoscopy as well as biopsies. I felt like something more was wrong at that point. I don’t know how much time passed but eventually the doctor came out and asked to speak to me in private. She diagnosed my girlie with Crohns disease, saying it was one of the worst pediatric cases she’s ever seen in all her years. She said that if she wasn’t so young she’d consider giving her a “bag”.

Our lives turned upside down. She learned to swallow pills and had many a day. She got so good at taking one at a time, two, and then a handful and she’d feel pretty proud of how she was able to do that. She had much lab work on a regular basis and many doctor visits. We started going to Mayo because her doctor was transferred there so we followed plus she had different doctors she needed to see in the beginning and they had better testing equipment; it was convenient for everything to be in one place.

I tried to make the most of our visits and found myself taking her to the mall and buying all sorts of things. I remember one evening sitting at Barnes and Noble and she was laying her head on the counter, she was always so tired when she was in a flare, and I look back thinking, “WHAT was I thinking taking her out when she just needed to sleep?” I know that I was trying to make her temporarily happy knowing the days would be filled with pokes, tests, and long doctor visits.

Since, I’ve learned that anytime I am stressed, I will go out and buy anything, Years later, I’d see tags on things I just bought to buy, “Retail therapy: a little happiness to try to replace a lot of pain”

Even though I was told there was no cure, I told her that God was going to heal her. I told friends and family, too! Anytime she’d go to get blood drawn, she’d tell the technicians, “God is going to heal me!” At one point early on, her labs were normal. I remember standing in my grandmother’s living room while talking to doctor and was told she was in a state of remission. I was so thankful because I thought, “I knew it! God healed her!” And she was only seven years old; eight months after being diagnosed,

I told her doctor I had been researching and would keep her on a good balanced diet and not give her the fast food “poison” anymore and that I’d give her supplements. She said that if she goes off the medications, her disease would go into a flare again. I said I believed it wouldn’t, and we’d keep her doctor and lab visits so we’d stay on top of it.

The next five years was such a roller coaster of emotions for her, for all of us, handling the stress in different ways. I was upset that I couldn’t seem to control the disease with diet alone as she was sick and then not. I found myself wondering why God hadn’t cured her.

In the beginning, I even had a well meaning neighbor that told me I needed to go to a priest and confess my past sins because that was why she was continuing to be sick. I told her that I knew that wasn’t true but I went inside my home and just cried because I started wondering what I did to cause her illness. I had already told the doctor I thought if I cooked healthier she wouldn’t have gotten sick but she said that had nothing to do with it.

Although I knew I was going against the flow of the majority of patients, their parents, and doctors when I passionately “preached” that eating healthy was the key to keeping her in remission, I continued.

One of the last times we were at Mayo being at my wits end, I went into the prayer room next to where we were staying, and I was wondering WHY she kept getting sick after I was doing all the “right” things with diet but it wasn’t “good enough”.

Later I told my girlie that God would heal her but I believed that, unless a cure was found, it wouldn’t be on earth. I stopped fighting so much against medications but prayed for wisdom to know what and when. There was a time I went against a doctor’s suggestion about combining some medications when her doctor was on vacation and he met with my husband and I saying, “you aren’t giving her the best quality of life!” Although that hurt, I am thankful we didn’t do the combined medications he suggested because within a year, there were cases of people dying from the exact combination,

When that doctor transferred, we had a new doctor and one of the newer medications he suggested was not doing well mentally for my girlie, A doctor in the Emergency Room suggested we take her off it for a few days to see what happens and soon her sweetness was back. I took her into her doctor and told him she needed something else because it was obvious the medication didn’t do well for her mentally, but because she’d already gone through so many medications, he said it was the best for her at the time. I stood my ground, as I had learned to do with probiotics and healthy eating and said, “No, it was not best for her.”

He apologetically said he could no longer be her doctor, and my girlie and I left, I’m thankful she was able to see all through the years that I was going to help be her voice and stand for her even when it was hard but that we’d get through it together. I didn’t want her thinking that just because something is the most popular doesn’t mean it’s best for her.

It was a continuously learning the right balance of diet and medications that worked for her that would keep her in remission. She turned 16, started driving a lot, being so actively involved in so much, within a few months, she had her first surgery.

The crazy thing about that is she was scheduled and they had placed the IV, already prepped for surgery. The surgeon came to us late because he had an emergency surgery, and he explained to us that more than likely she’d come out with a bag, something we prayed against, knowing it would change her very active lifestyle. The surgeon left the room, soon came back in, and said, “Something of Greater Power is keeping me from doing this surgery.”

He told us to go home , and he would talk to her doctor about doing it in a few weeks and see if she got better during that time since she was presently in a flare. I told him she was finishing up her senior year and would need to wait, at that point, until after graduation in June. He agreed and said maybe she’d be so much better, she may not even need a bag. It seemed so strange yet we believed it was GOD.

A couple hours later her doctor called asking for my version of why surgeon sent us home. I am not sure the surgeon told him the crazy: “Something of Greater Power”. He told me he wanted me to get her back to the hospital, and he’d have another surgeon do it,

This is the same (new) doctor whose office I was calling almost weekly that my girlie was sick and something needed to be done but since I kept saying the only symptom that told me she was in a flare was her irritability, the nurse would say, “THAT is NOT a symptom!”

Well, I beg to differ. When I’d get migraines, I’d get so grumpy and her first gastroenterologist who went to Mayo said that her disease was like having a constant migraine in her stomach, How miserable! So, when this doctor did do labs and saw that her numbers were bad, did the procedures, he then said you’d never expect her to be that sick. Well, when you grow up with an illness, I think your body is use to it so you don’t know what “bad” is. I then told him that irritability IS a symptom and next time he can’t allow his nurse to ignore that. He agreed,

Anyhow, he spent quite a bit of time trying to convince me to take her back, and I said, for whatever reason, GOD stopped this, and I said we’d go back after her graduation but I wasn’t going to allow her last semester to be messed with anymore. He then called me the next day saying he couldn’t be her doctor anymore. Once again, feeling in the out, but knowing my girlie didn’t want the bag, I had to be hopeful that time would heal.

Sure enough, she graduated, had a fun party, and went in for surgery. She had been referred to an adult GI, since we’d been “fired” from the only two pediatric clinics in town. Hahaha. The surgeon was amazing, saying at the appointment that she didn’t need a bag. He said he would remove only what was absolutely necessary,

When I look back on the “devastating” news we received in 2003, although so many tough years, I’d tell my girlie she was making a difference, and would continue to, even if God chose not to heal her in our timing. It is and was all about God in His perfect timing, using everything in our lives, no matter how difficult, for His glory, honor, and praise!

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Blessings,
Jennifer