By: Sue Anganes
To say that the past few months of summer have been fun, relaxing, and rejuvenating would be a lie. None of the activities that I had blogged about back in May were checked off of my summer to-do list. Instead, we have been to numerous doctor’s appointments, physical therapy appointment, and were often home bound. I couldn’t bring myself to write a blog post this summer. I was struggling so much with my emotions, and every time I wanted to write it seemed like it became an overwhelming task that I was unable to face.
Medical issues are always hard, but somehow when they affect your child they become overwhelming. My two youngest sons, Ray and Ted, have an undiagnosed metabolic or neuromuscular disease. Ray, who is fifteen, is more affected than his twelve-year-old brother Teddy.
Ray’s issues have become much worse in the past few months and have limited him to mostly staying at home. He has virtually no energy, not even enough to participate in everyday activities. Our one summer-fun excursion to Barnes and Noble wiped him out physically for days, even despite the fact he was using his wheelchair. He often is too unwell to eat and has lost a considerable amount of weight. At current count he has seen fourteen different specialists in Boston (some he visits every three months) over the past ten years. No one can figure out what is wrong with him. He has had many, many genetic tests done along with scans and biopsies and various types of studies.
In December of 2011 one of Ray’s specialists submitted all his medical records to the National Institutes of Health’s Undiagnosed Diseases Program. The program is federally funded and accepts approximately one hundred patients a year. Almost nine months after we submitted Ray’s records we got word that Ray was chosen for the program. At the end of this October, Ray and his brother Ted will be admitted into the NIH’s hospital in Bethesda, MD for a week of testing and evaluations by twelve or more researchers and MD’s in various fields of medicine. We are hoping and praying for a diagnosis and a possible treatment. It feels as though time is quickly running out for us, and we are viewing this trip to the NIH as one of our last hopes for an answer. I will try to write about our experience at the NIH and let you all know how things work out.
I know there are other moms reading this blog who have similar struggles regarding complicated medical issues with their children. We can feel very alone at times and often have a hard time talking to others about our worries, struggles, and fears for the future. I can honestly say that finding one or two friends that are good listeners made a huge difference in my emotional well-being. I am so thankful for my friends, who often let me cry on their shoulders and are there just to listen. There are many things in life that cannot be “fixed,” but it makes a world of difference knowing that there are friends who will be by your side for you during the tough times as well as the good.
He gives strength to the weary
and increases the power of the weak.
Even youths grow tired and weary,
and young men stumble and fall;
but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.