Sheila Sims Iding
This weekend we went to Denver, Colorado with Joey. He was in one of his best friend’s wedding so the three of us went to Denver together to celebrate David Vogel and his marriage to Lara Conley. It would have seemed like a normal long distance wedding…parents and their son taking a trip together to celebrate a childhood friend’s wedding. But this was more than just a straight shot to Denver and back. This trip completed a full circle.
Ironically, the story started in first grade when he met David Vogel, his life long friend. Joey had been diagnosed with cystic fibrosis in kindergarten. His life expectancy was only 15 years old. In first grade, even with the treatments, he became very sick. One of the reasons he was so sick is that his body reacted to the medicines he needed to fight the infections and to slow the progression of CF.
These weren’t allergic reactions. That we could have handled. They were a serum sickness reaction where his body treated medicine like a poison. We gave him Tylenol for fevers and his fever would go up. We gave him antibiotics for his infections and they gave him severe hives that made him sicker than the infection. We gave him steroids for his hives and the hives got worse. We gave him breathing treatments to help his lungs and he developed tachycardia and had trouble breathing. His heart rate was over 230 with each breathing treatment. He was hospitalized more for drug reactions than for cystic fibrosis. His serum sickness caused kidney damage (blood in his urine), joint pain (he couldn’t hold a pencil) and made him sicker than the horrific disease he was trying to fight. It was more than serious. We had to find a way to help him tolerate the medicines he needed to fight cystic fibrosis to have any hope to keep him alive to even get to 15.
National Jewish Hospital in Denver, Colorado offered some hope of answers. And since we were running out of hope we took Joey to Denver. As soon as school was out and first grade was over we headed to Denver. He left his friends, including David Vogel, his pets, his brothers and beloved aunts to spend the summer in the hospital. We made a quick stop in Minnesota for Meica’s graduation open house. We left Adam and Tim with Auntie Carol. I had to figure out how to say goodbye to two little sons for the summer without crying. My heart was breaking but I had to make the goodbye easier for them. Tim, who was only 6, actually found the song “Somewhere Out There” and that helped (a little) with the goodbyes.
So…Pat, Joey and I flew to Denver so he could be admitted to the hospital. Pat would stay with us to get us settled and then he headed back to Minnesota to pick up Tim and Adam and drive home alone with them. It was hell for him…two little kids on a 14-hour car trip with a son in a hospital hundreds of miles away. My heart broke for him and his heart broke for me. We were crushed.
The summer was a nightmare. I am not going to pretend it wasn’t. First of all Adam was only 4 years old. And he was sick with an immune deficiency and fighting 26 infections a year. (That is every other week.) Tim was only 6 years old and he was very sick….very sick…with the same immune deficiency AND cystic fibrosis. Being without your mother is hard when you are only 4 and 6 years old. Being really sick and not having your mom there is devastating…even with a loving family to help Pat care for them.
National Jewish Hospital was hell. Parents were not allowed to stay with their children overnight. Can you even believe that??? Here in Lansing I know parents at Sparrow Hospital who got written up for neglect for not being at the hospital with their child. At National Jewish I got written up for fighting to stay with Joey…a scared, sick seven year old forced to be away from family, friends and alone at a hospital at night. So…I promised to stay with him until he fell asleep each night. And I promised to be there when he woke up in the morning. I paid a lot of money for a hotel I barely used and for a rental car that went to and from the hospital each day...and night. I would leave at night in tears and a kind nurse told me “Don’t worry, it gets easier.” About the 3rd week when I was still leaving in tears, I told her she lied. It doesn’t get easier. It gets harder.
And to make matters worse, he was on the 8th floor and the first night there they had tornados and we watched 7 funnel clouds form from the 8th floor windows. A healthy kid with his parents at home is scared of tornados. A sick kid far from home forced to be alone is terrified. And…they had no evacuation procedure in place so I was terrified too. So every night I comforted his sick little body and calmed his realistic fears and prayed as I drove away and saw his balloons in that 8th floor window. It was hell.
And then it got even worse. They had to create the drug reactions to see how to combat them so they filled his little body with medicines that made him sick and he ended up in ICU. AND I still wasn’t allowed to stay with him. What??? A 7 year old kid in the Intensive Care Unit and I wasn’t allowed to spend the night. I tried to stay in the chairs in the hallway but they kicked me out. Wrote me up again. And made me talk to the head of the department about my “behavior”. They didn’t understand my behavior and I told them I hope to God I never understand their policy. So…I left each night in tears. I got in my rental car, looked at his balloons in my rear view mirror, drove to my hotel and called Pat to check on Tim and Adam who were both…sick.
The 4th of July weekend Pat brought Tim and Adam to Denver so we could all be a family again for the weekend but…when they arrived at the hospital to see their brother, Tim had a fever of almost 105! He was very sick. So I took him back to the hotel (after Joey’s doctor checked him) and Pat stayed with Adam at the hospital to visit Joey (hoping Joey and Adam wouldn’t catch whatever infection Tim had now.) So much for the family weekend together. When Pat left to return home, we all cried. There were no cell phones, no skyping, no internet to look up medical terms. There was nothing but hell. I would commensurate with the other moms there and remain friends with some of them to this day…but we were all in this hell together.
Joey and I found joy in little things. Micro machines were big back then so we played and played with them. Sometimes there was a phone call from home (Grandpa Joe called him a lot) or from my sisters or from Minnesota. Sometimes there was a package from his aunties. Sometimes, if he was strong enough, we could walk outside. Once when he was doing crafts with fellow patients I left to go for a drive just to get away. During this drive I came upon this store I had never seen or heard of before. It was called “Target”. It became my haven. It is part of my love for Target to this day and why I have to make a weekly visit…I never lost the need for a Target fix. It was my therapy.
Things did not get better. They made Joey sicker but never had any answers to help combat the reactions. They came up with one unique way to fight his sinus infections to limit his need for medications. They used antibiotic eye drops in his nose to help kill bacterial germs. And that worked. He had fewer infections and fevers which meant a reduction in medications which meant a reduction in reactions…but still no answers or a way to end the reactions.
After almost 8 weeks we had no answers and we were running out of hope and we were running out of time there. They gave him a goodbye party (because he was there so long) and we left the next morning. I had to carry him to the car because he had a fever of 102 and I couldn’t give him Tylenol because he would react to it. I cried tears of happiness to leave the hell and tears of sadness because I brought a sick little boy into that hospital and I was bringing a sick little boy home. When we got home we tried to salvage what was left of summer. We went up north. Went to doctor appointments. Tried to comfort Tim fighting two illnesses and tried to help Adam recover from separation anxiety… kind of hard for a four year old whose mother keeps disappearing to hospitals with his brothers. I thought of Adam this weekend more than once when Joey was doing face time calls with Brooklyn. That would have made a world of difference for Adam…and for me.
Despite the hell, there were many positives tucked in the adversity. Something my dad always taught me to look for. He was already in heaven but I swear I could hear him say “Keep your face to the sunshine and look for positives.” Something that is hard to do on the 8th floor of a children’s hospital with tornados and storms both inside and out. But my dad taught me well and I saw the positives including the special time I got to spend with Joey. The conversations we had together, the fear we worked through, the stories we read, the games we played and the prayers we said all created a bond most mothers don’t get to have with their child. It was more than a positive…it was a blessing…to this very day.
That is why this Denver trip was a blessing. Even some of his friends at the wedding remember him being in the hospital here in first grade. Twenty-eight years later we go back to Denver together. Just like before, after a visit with Meica last week, Pat, Joey and I headed to Denver. And just like 4th of July weekend 28 years ago, we are together in Colorado. But this time we are not looking forward with fear of a horrible disease and even worse prognosis. We are looking back at all we have been through together, the bonds we created, the prayers that were answered and the miracles we have witnessed.
Driving from Denver to Keystone on Thursday night was hell for us. Our GPS had us take Loveland Pass (the shortest route) and it was dark, raining and foggy. We didn’t know this was a “forbidden route”. We just trusted the GPS. Joey was driving on cliffs with no guardrails, no reflector lights to guide us and zero visibility because of the fog. He could barely breathe, he could barely see the yellow centerline and I could barely see the white line on the edge of the road…the edge of the cliff. A deer had already run in front of us and there were elk warnings too. There we were again…the three of us…facing fear and uncertainty…together in Colorado. It wasn’t until the next morning when Joey went running in the mountains in that thin air without any trouble, when he talked to his two year old who was missing him, when he realized with that drive on the cliffs he had been to hell and back, when he put on his Michigan Soccer alumni fleece, when he was heading to spend the day with his first grade friend…it was then that I realized this trip to Denver wasn't just for a wedding. This trip to Denver meant we had come full circle.