In January, when we discovered that Jack had Osteogenesis Imperfecta, it was nothing short of traumatic. Just a month earlier, I had gone through unmedicated labor for the fourth time. I was much older than the last time I’d done that and frankly, it was miserable. I’d spent a day in the hospital, trying to keep it together as I sent my baby off for a circumcision for the very first time and again when we discovered that Jack’s legs were unmistakably bowed and his left arm not moving properly.
I’d spent the first month of Jack’s life visiting with lactation consultants who were as mystified as I that Jack could not nurse effectively enough to get more than an ounce out of one feeding (on both sides). I’d been nursing, pumping, and tube-feeding round the clock all while feeling immense pressure to maintain some semblance of normal for my family despite my sleep-deprived, emotionally-depressed state. During the holidays, no less! It was nothing short of crazy. I was nothing short of crazy.
Either way, shortly after Jack broke his femur at the tender age of four weeks, and we spent a couple of days in the hospital to let Jack recover, running tests on possible explanations for a femoral fracture (up to and including an albeit brief investigation by social services to rule out abuse) I was completely calm. I had stayed up most of the night doing my own bit of homework and had ruled out enough possibilities that when the pediatrician reported the most plausible explanation being osteogenesis imperfecta (brittle bone disease) I was neither blown away nor devastated.
Despite my utter exhaustion, I was as lucid as ever, communicating effectively with doctors regarding the tests, procedures and care Jack would need over the weeks he was in a cast and beyond, since OI is a genetic disorder with no cure that would require long-term monitoring and treatment. By the grace of God I felt no anxiety, no desperation, only peace. Peace that everything would be all right.
So what would my advice be to those who suddenly have to absorb a difficult diagnosis regarding a child?
- Pray. You can’t do this on your own. So enlist the help and comfort of the One who knows all and in whose plan you can trust. He listens and will provide comfort and answers.
- Breathe. This is no time for what ifs. Don’t second-guess what you may have done to prevent this diagnosis. Don’t dwell too long on what the future may hold. It is what it is. Breathe deeply and move forward with a sense of peace that though life is full of factors beyond our control, we have the power to choose our reaction to its challenges.
- Count your blessings. I know, I am discounting the whole grief cycle and the value in embracing one’s sadness. There’ll be plenty of time to grieve. Now’s the time for note-taking. When Jack broke his leg, I pulled out my phone and took notes in spare moments throughout the ordeal, knowing that if I did not record every kind act or small miracle I experienced, it would simply disappear and get locked up in the recesses of my memory. Big moments often swallow up the little ones, so make sure to record the little ones because it is often in those that we see the hand of God. I thanked the Lord for many things in those first few days, most notably the gift of having a child with special needs. God often sends his strongest spirits to less-than-perfect bodies. Be grateful and you will begin to see even more of the beauty in life.
- Allow others to serve you. Write down what you need, from grocery shopping to child care, to help with cleaning and laundry and meals. People came out of the woodwork to rally behind us during the initial month and it was tremendous to see the goodness of my “tribe”. Let your tribe help you. It will humble you. And, you will better learn how to lift up others when they have needs they cannot fulfill on their own.
- Do your homework. If you are fortunate to live in an area with a wide variety of specialists, lucky you! Regardless, start reading. You will be your child’s advocate, you cannot expect the doctors to do that for you, well-intentioned though they may be. Ask them lots of questions. Find the top authorities on your child’s condition and scour the research for the best course of treatment. Find a local support group, if possible, so you can benefit from the experience of others who are going through similar medical issues. Knowledge is power and your child will benefit greatly with wise parents as his advocates.
A child with a serious medical condition can be a hard pill to swallow. I look back on those first few months after Jack’s diagnosis and wonder how we ever got through. And yet, I DO know. It was first and foremost through my faith in God and trust in his plan for us that I was able to maintain the presence of mind to plow through those dark days. It was through the generous souls whom I call friends and their kind acts of charity.
This year I have spent more moments in hospitals and outpatient facilities than I ever imagined possible. The strength of parents with special needs kids is a sight to behold. They are inspiring. To be counted among the ranks of these parents is an honor. I pray that our family continues to be equal to the task of raising our sweet special needs son and brother as he navigates a world that is not designed for him. With the proper attitude and tools we can and we will.