March 27 is a special day in our home. It's a day to remember. It's a day to be extra thankful. It's a day to celebrate and retell a story of healing and mercy.
Today marks the six year anniversary of when Hayden got to eat dinner with the rest of our family.
Six years ago today we ate spaghetti with tears in our eyes and an epipen on our kitchen table.
Six years ago Hayden ate all his spaghetti, stayed alive, and declared noodles and sauce the best food ever.
Six years ago God brought comfort and healing to our son and our family.
We will celebrate this day for as long as we live.
Spaghetti Day, March 27, 2006
Hayden's skin was nothing like that. He looked like a burn victim. We kept his body covered at all times. If not, he would scratch his skin, begin bleeding, and was prone to secondary skin infections. Some of my saddest memories were walking into my son's room to pick him up out of his crib and finding his sheets covered with blood. His skin was a source of constant misery to him. Socks were sewn into his pajamas. He wore socks on his hands. For three years he lived his life in long-sleeve, long-pants pajamas and with socked-hands and feet. We kept his skin covered to keep him from clawing at his skin, but we also kept it covered because his skin was so damaged that if he even touched things he was allergic to (dust, animals, most foods) he would break out in hives. His nose and eyes would start running. Strong topical steroids, benadryl, and doctor visits were constant friends. With major reactions, it would take weeks for Hayden to recover.
After allergy testing, he could only eat eight foods. Leaving the house with Hayden was always a gamble. The times we risked it, we usually ended up coming home frustrated and in tears. We'd pay for that gamble for days as we watched Hayden react and us have absolutely no real idea what was happening to him. Hayden paid for it the most as it was him who physically had to suffer. Our baby. Always suffering. Always scratching.
We took Hayden to fancy doctors. We were sent to specialists. Hayden was in constant pain. We will always look back and say that watching our child suffer for years was hopefully the hardest thing God will ever ask us to do.
When Hayden was three he was put through his yearly round of allergy tests. This time the allergist called me at home with the results. No nurse. The doctor. I was startled. I remember him telling me that out of the eight foods Hayden was eating, he was now reacting so strongly to four of them that we needed to remove those from his diet as well. Four foods. We were down to four foods. The allergist also told me that I needed to understand the severity of this. He explained that with Hayden's body reacting so regularly that this would cause long-term damage to his major organs. He gently said he'd like to set up a meeting with his team so we could determine how to proceed. They seemed to be finished trying to find a solution. The best doctors had already looked at Hayden and could not figure out what was wrong.
It was a devastating day. I already felt like we were doing everything humanly possible. Our lives had practically shut down. This sickness colored every part of our life. We rarely left the house with Hayden. I cooked all of his food. I fell into the bed most nights exhausted from trying to keep him safe. The house swept and mopped every single day. Dusted from top to bottom. Every. Single. Day. My baby. Socked hands. Socked feet. Me cleaning. Trying hard. Yet constantly feeling like a failure...my selfishness noticeably on display as I attempted to love and care for a child so infinitely needy.
The next Sunday I shared with our church what we had just found out from the allergist. They prayed for Hayden. Standing in the front of the church with people praying for my son, I wanted so badly to open my eyes, look at my three year old son and see his skin had miraculously been healed. Like those stories I heard in Sunday School...wide eyed as a little girl...those stories of when Jesus healed the people with leprosy. The sores were there one minute. Gone the next. One flannel-board lady had leprosy. Then a new flannel board lady appeared whose skin was soft and beautiful. She was shiny and lovely. I wanted that. I wanted our family to be a flannel board family. One minute a desperate wreck. The next minute healed. The people said, "Amen"...I opened my eyes and Hayden looked the same.
God did not miraculously reach down and heal Hayden that day. Instead, on the day I shared about Hayden in front of our church a new family was sitting in the congregation. They had recently started visiting our church. The father of that family was a doctor. He later contacted us and asked if he could see Hayden's chart. Sure. Why not. What would it hurt? Besides, this is a "family practice" doctor. What's he going to know? In Hayden's diagnostic career, "family practice" doctors were so two years ago.
That doctor found that Hayden had an amoeba in his body that he probably got in utero during our trip to Mexico when I was seven months pregnant. This amoeba had gone untreated for three years. To make a very long story short, after a couple rounds of medication, our son's body began to heal. In October his allergist was trying to figure out how to keep the kid alive, and by March...with Dr. Bacak's help Hayden's skin was clearing up. We slowly added simple foods back into his diet. The socks eventually came off his hands and feet. Hayden was wearing shorts. He wasn't covered in hives. We took him places. Healing was happening.
A few months later, Hayden was getting so much better...his skin healing up...that Dr. Bacak said something outrageous at one of our visits. He looked at Hayden. Looked at me. Then he said, "Heather...let's do something crazy. Let's feed this kid." I answered, "Like real food?"
Yes. Feed him real food.
I went home nervous. I held my three year old son in my lap and asked him a simple question. "What is one food you have always, always wanted to eat?" There wasn't even a pause. "Seggi!" Hayden wanted spaghetti.
We ate. For the first time Hayden ate the same thing his family ate for dinner. He lived. We cried. We celebrated. It was a day we never want to forget.
We remember this day every year by eating Spaghetti, retelling the story, and thanking God for mercy. I don't know why there is so much suffering in this world. I don't know why babies sit in hospitals with teary-eyed mammas by their sides or why mercy and healing seem to stay just out of reach. I don't know why my baby is whole today when other mothers with sick kids probably prayed more, fasted more, read their Bibles more, and were over-all better woman than I ever hope to be. Yet their babies suffer on. I don't know why Hayden is here, cracking jokes, slurping up messy noodles when I don't think we ever really learned to suffer well. We did not earn Hayden's healing with clean hearts and bended knees. I was never a rock. I was a doubting, angry, wreck accusing God of terrible things. All I know is that for three long, hard years our life and Hayden's life was going one way...the same old way it had been going for years. Then all of a sudden life wasn't going that way anymore.
Everything began to change.
That's my favorite part of the story. That mercy part.