March 27 is a special day in our home. It's a day to thank God for intervening and healing our son. It's a day to celebrate, retell a story near and dear to us, and remember.
Today marks the five year anniversary of when Hayden got to eat dinner with the rest of our family.
Five years ago today we ate spaghetti with tears in our eyes and an epipen on our kitchen table.
Five years ago Hayden ate all his spaghetti, stayed alive, and declared noodles and sauce the best food ever.
Five years ago God healed our son.
We will celebrate this day for as long as we live.
Spaghetti Day, March 27, 2006
Hayden's skin was nothing like that. His skin was not normal baby skin. He looked like a burn victim. We kept his skin covered at all times. If not, he would scratch his skin and would quickly get secondary 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 with blood all over them. His skin was such a source of misery to him that if he had any access to his skin he would claw at it, quickly causing gaping, bleeding wounds. Socks were sewn into his pajamas. He wore socks on his hands. For years he lived his life in long-sleeve, long-pants pajamas and with socked-hands. 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, food, etc.) he would break out, his nose and eyes would start running, he'd have to be given benadryl, and his skin would have to be covered in topical steroid. With major reactions, it would take a week for him 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 definitely pay for it for days later 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.
We took Hayden to all sorts of doctors. We were sent to specialists. I've written about what our life was like and some of the things God taught us during this difficult time. There was a lot of suffering. 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. 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 keep this child alive. 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 completely shut down. We rarely left the house with Hayden. I cooked all of his food. I fell into the bed every night exhausted trying to keep him safe, the house swept and mopped every single day, and the house dusted from top to bottom. Every. Single. Day.
What more could we do?
The next Sunday I shared with our church what we had just found out from the allergist. They prayed for Hayden. The most beautiful part of this story happens now. Don't miss it. 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. I wanted that. I wanted our family to be a flannel board family. One minute a wreck. The next minute healed. The people said, "Amen"...I opened my eyes and Hayden looked the same. I was so disappointed. I was used to being disappointed. This was not the first time we had begged God to heal our son.
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 just started visiting our church. The father of that family was a doctor. He listened. He prayed. He later contacted us and asked if he could see Hayden's chart.
As a church body we began praying for Dr. Bacak. God help this man help our son. Dr. Bacak found that Hayden had an amoeba in his body that he had probably gotten in utero during our trip to Mexico when I was seven months pregnant. It had gone untreated for three years. The results were life debilitating for Hayden. To make a 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. Hayden was wearing shorts! 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 will never forget.
Exodus 13:8-9 and 14
On that day tell your son, 'I do this because of what the LORD did for me when I came out of Egypt.' This observance will be for you like a sign on your hand and a reminder on your forehead that the law of the LORD is to be on your lips. For the LORD brought you out of Egypt with his mighty hand. "In days to come, when your son asks you, 'What does this mean?' say to him, 'With a mighty hand the LORD brought us out of Egypt, out of the land of slavery."
We remember this day with a spaghetti feast and a retelling of the story.
This day causes lots of thoughts to hip hop around in my head. Thoughts about suffering. As a three year old Hayden suffered with such joy. That touches me. It teaches me. I have thoughts about the church. How God uses people. I think of the sin and selfishness I saw in my life parenting a child so needy. How God's grace covers those dark places. I remember how human I am. How weak. How it didn't matter how much I wanted to serve my child selflessly...I was selfish. I tried hard, but I was no hero. I think of how loved we felt by our church family. How God gave us not only an incredible doctor, but great friends through the Bacak family. But mostly I think of the things in my life that seem hopeless right now. The things I think are too big. The things I feel frustrated and hurt over. I think of those things on this day and remember....God is powerful. He restores. He frustrates science. He takes situations that have been labeled "hopeless" and completely changes them. There are places in my soul that need to be reminded of that truth today.
I don't know why God allowed Hayden to suffer for three and a half years. I will never understand it. But I do know that for some reason, God wants Hayden to remember that He is big. He is strong. God is faithful.