Someone once asked me if it was the pits to be gluten free. Didn't I miss all those things like bread and pasta. I have spent a lot of time thinking about it. Sure, I miss that delightful taste of home baked bread. I may never find a substitute for my grandmother's ravioli. But, do I wish I could go back to those carefree days when I could eat anything I wanted, fix anything for dinner, choose foods without limits? The simple answer is no.
When Paprika was six she came to me and told me her foot hurt. Probably like a million times before, I shrugged it off like every other childhood bump or bruise. Within a day or so she began to limp. I then noticed her foot was swollen. The doctor thought it was perhaps a little fracture that an x-ray couldn't pick up and that would heal with time. The problem was that it just never healed. It just kept getting worse. Three months and five different doctor opinions later she was put in a cast. My little star soccer player hobbled around on crutches and had to be carried up the stairs. I would trade every pastry and donut we ever ate to erase that memory.
That Halloween, Dan carried Paprika when they went trick-or-treating. Her foot hurt so badly that when she was home, she crawled rather than walked. We still had no idea what was wrong. February came and Dan and Paprika flew to Children's Hospital, where after eight months we finally had an answer: juvenile rheumatoid arthritis. What I thought must surely be an ending, only ended up being the beginning.
Paprika was started on medications. Every three months we would travel across the state for her appointment, hoping she was better, knowing she was not, finding out we were right. She just seemed to be getting worse. Now her knees and her chest hurt. I would tuck her in at night only to hear her scream that the sheet hurt when it touched her. I found myself in that hard to be place as a mother who can't fix her child. I would have passed on the basket of rolls to fix her.
Medication after medication was tried. More and more joints were affected. Some I didn't even know about. Once we went out to eat and Paprika looked up at me with tears in her eyes and said I can't eat. I asked her why and she said because she couldn't hold the fork. It was only then that I realized that our handles at home were "fat" and that's why we hadn't noticed her hands hurt and she had trouble holding things. We changed toothbrushes, pencils, crayons, scissors, anything she had to hold, to help.
By the time she was in second grade life had become a new routine. We would get up each morning and turn on her heat blanket to warm her up while I started a hot bath for her. When it was ready, I would go back and get her. I would slowly help her sit up and move her feet to the floor. We would walk across the hall to the bath. You would have thought she was ninety. Some days a bath helped and the stiffness eased up after a couple of hours. Other days it lasted four hours or more and then returned in the late afternoon. I would have skipped the pasta and bread sticks to see my seven year old out running around rather than curled up on the couch.
Year after year seemed to bring us similar struggles. New medications. New joints that became affected. New symptoms like dry eyes and swollen optic nerves. New procedures like joint injections and physical therapy. One thing remained constant. No matter how many new medications we tried, we could not get her arthritis into what they would call remission. She hurt almost daily, was stiff a lot of mornings, and was tired all the time. Some days seemed better than others, but you never knew what to expect.
The unexpected. It made us look at things differently. We couldn't plan like we used to. We couldn't take things for granted. We had to change things. We started homeschooling all three kids when Paprika was in third grade. It made sense and I know it helped! What a blessing from God. I would have never imagined homeschooling and looking back on it, I couldn't imagine any other way. We were and are so blessed.
God is very important in our lives. I couldn't have made any of this journey without His grace. Deep in my heart, I knew He had a plan. On those days that were hardest, I held on to a simple prayer, not for God to take the pain away or to fix it, but to help us endure, to give us strength to live out His plan.
Nine years later, He opened our eyes and hearts to new friendships and new knowledge that has led us on this gluten free journey. In the last year we have almost forgotten what life used to be like. I think it is sometimes good to remember. To remind us of our blessings.
So, I think about that question. Is it the pits to be gluten free. The simple answer: sometimes. Who doesn't look at that Krispy Creme Donut and salivate? Who doesn't look at that lasagna, or the hunk of chocolate cake, or smell that fresh baked bread and sigh? Would I love to go back to those days where I could eat anything I wanted? I look at where I am and where I have been and I wouldn't change it. None of it. It was necessary for us all.
I have learned that God is always with us, in the good, and in the bad. He is with us now and will be in the future. I know that Paprika could relapse any day. I know there is the chance that we could find out we are gluten free for no reason at all. But, I also know that God is there beside me through it all. He gives us strength on each and every journey He asks us to make. In knowing that, I find peace.