The Rare Disease Lull: Coping after the Storm

January 27, 2014

Coping with Rare Disease

My Son Has Russell-Silver Syndrome

It isn’t every day I think about it. Not like it was 10 years ago, a constant on my mind, with much worry and concern. Yet still, there are the occasional days that bring reminders of those earlier moments, wondering what symptoms and ailments will rise to the surface once again.

My son is much healthier today, compared to three years ago. There are no cures for my son’s rare disease, but the constant hospitalizations, surgeries, therapies, and mandatory physician appointments have diminished greatly over the last several years. The chaos and storms have subsided, along with the ongoing adrenalin buzz.

But – such is life, there are always the occasional bumps in the road – and rare disease is no different. So, when those bumpy days materialize where my head is filled with future challenges, and second-guessing our current healthcare methodologies, my heart once again is laden with a heavy sadness. It seems worse when you have reached the point where the individuals directly affected were actually coming to grips with your son’s rare disease. Yet, because of the lull, the up and coming issues once again become a battle. You find yourself having to train your physicians, your family and your friends all again, establishing the requirements of what it takes to manage a child with a rare disease.

I enjoyed the break. I enjoyed not having all that worry and trying to convince with great results how to care for my son. But, the rollercoaster has started again – with great effort it chugs along, barely moving, and with frequent, sudden jerks to rise to the top. And once it gets there, it’s inevitable that the ride down will be a fast, flurry of challenges that will happen so quickly, the fear of indecision, wrong decisions, and wrong turns will ultimately cause an onset of more grief.

And there are those who barely know you, or understand what rare disease is all about. Those who have come into your life during the “lull”, and their comprehension of rare disease is entirely empty, causing the memories of a distant challenging past to raise it’s ugly head – again.

I remember feeling important and worthy of being a mom while taking care of my son during those challenging years. A bit of emptiness had filled me during our break – wondering what my worth would be now that I had kept him literally alive during those delicate times. And yet, the need for my champion spirit and desire to succeed in the ultimate care of his health is needed again, and I wonder if I will have the same positive results. I wonder if I will be able to play games with the emotional caretakers with similar issues, and the battle to fight for the best healthy outcome – so that when my SON is older, he will be proud of my decisions.

And that is now my greatest fear, that my son will be proud of MY decisions. He is 10 now. And the decisions we make over the next 10 years – will prove to be more impressionable now, then when I was just trying to keep him alive. I want my son to be happy, content and confident. And the decisions going forward will rest delicately on a line, like a tightrope walker dancing 10,000 feet in the air. One mis-step and my son will either have to choose to be content with the outcome of the healthcare decisions, or be ultimately disappointed in the results.

Disappointed in the decisions and more importantly, in me.

Yes, my child will live a normal life, notwithstanding his rare disease. We are blessed knowing there will be more “lull’s” in his health, fewer storms and less crucial decisions. But, we never truly get over all that we have been through. We will never truly know if every decision were a good one or how people in every facet of our lives will react to my son’s needs……

My son has a path that has and will venture through many a lull and many storms. And that is why I have to let God continue to take control. I must continue to put faith in the Lord to guide me to those decisions – for whatever outcome the Lord chooses for my son. God willing, I pray I listen intently to His direction – so that the path He has determined for my son will be chosen wisely through me. Faith is all I have. My relationship with God is so precious – as is the relationship with my son. All I can do is Pray. All I can do is find peace during the pause, and prepare for the roller coaster ride through the next storm – all the while, with the Lord by my side.

“The Lord is with me; I will not be afraid…The Lord is with me; He is my helper.” Psalms 118:6-7

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