Dear Warriors,

Have the last five years of chronic stress and uncertainty been accompanied with hope? There are varying degrees of hope, and I will share what ours have been. We have had hopeful years. Hopeless days. We have hoped the ongoing nightmare would come to an end, hoping all along that the end of course would be a great one!

Each time we consult a new doctor and they only add a theory but cannot confirm a diagnosis, it feels like a little hope is lost. This used to burden me in a way that it affected most aspects of my attitude and ultimately my life. Not just my life, but also the lives of all four of my young boys, ranging in ages two to eight years old, and that doesn’t include my worn-out husband.

Something clicked at a point in our journey that taught me that our hope for a diagnosis and solution does not solely rely upon physicians, and thank goodness for that! That clicking could have been the instance where a doctor who promised us the world suddenly, disappeared. Or it could have been the one who refused to listen and ignored symptoms. Whatever it was, the truth is the doctors are not the only source of hope.  Don’t get me wrong, I am very thankful for them and have stood in awe at times by the diligence and concern of a doctor literally caring for my son.

A consult occurred three years ago with a world known specialist at Boston Children’s Hospital. The night before, I couldn’t sleep out of anticipation of what he was going to say. He basically concluded, I do not know and we may never know. I did not understand at this point that this was even possible. How do the doctors not know? There must be a mistake here… I wasn’t even aware that there was an undiagnosed population. I think it took another year or so for me to comprehend– they really do not know what is wrong with our son.

Is being the mom of a child who is suffering one of the greatest challenges of my life? Absolutely. Not only am I watching and hurting for my precious son, but I have also inherited the grueling job as a parent advocate. As many of you know, this job becomes priority over every other thing in your world. The predictability in your life is lost. The single most important pursuit becomes putting your child on the road to healing and in some cases, keeping him or her alive. Life becomes a full-blown battle with disease, insurance companies, nurses and even doctors. That is why I addressed you as a warrior. That is what you are! All the hard work feels like it goes unnoticed, but that doesn’t matter in the big scheme of things. What remains in our hearts as parents who long for a solution and a better life for our children is hope. What we are willing to do to find that hope is anything!

When I reflect on the hopeless days… I see frustration, exhaustion, depression and broken spirits. When I look at the hopeful years… I could write for days. Some of the hopeful things are the blossoming of my faith and a love I never knew existed. I have watched miracles unfold before my eyes. I have learned about love. Love from friends, family, loved ones and even perfect strangers. Before this illness, I didn’t know what compassion looked like. I never saw this type of love. Nothing compares to the moments where my son is feeling good and is enjoying a day. Would I appreciate his smile as much if I didn’t see so many of his tears?

After four and a half years of traveling the country and the local hospitals repeatedly searching for answers, I reached a dead end. This wasn’t the first time it happened, but at this point, it seemed like the energy was depleting. There was a physician involved who was watching and knew what we were up against. This doctor meant well. He called me one afternoon and told me to stop looking and make my son’s life as “happy” as I could. What? Stop looking? I know what you’re thinking…  I did not like his advice either, and I told him he was “crazy” if he thought I was going to give up on my son. I told him that I do focus my energy on making my son “happy,” but did I? Months later, the stress heightened in our lives and it was then that I realized, the doctor was partially right. Not the “stop looking” part, but the finding happiness part. What he really meant was we needed to “dance in the rain”– or shall I rephrase that and say “dance in the storm?” It was time to take a step back, re-focus and prioritize everything. It was time to put some of that energy into living!

My son is still sick. I do not know if the sunrise is going to bring a symptomatic child who will be rushed to the hospital, or if he will be feeling okay. I do not have great treatment options and the ones that I have are not guaranteed. There is no journal where I can read about my son’s condition(s). I do not have a prognosis. The time frame for my child’s illness at this point is forever.

He may be forever sick but he will NEVER be abandoned. He may go through things that other children do not, but that is why he is so strong. His pain has made him one of the bravest children in the world, next to yours. He may live a chaotic life without easy solutions but that does not mean that he cannot still be happy! He may too have hopeless days but his hopeful years will be in more abundance. He may come to a point in his journey where he doesn’t have much energy left but he will ALWAYS have hope. He can still dance, even without clear skies and without a diagnosis and so can you!

With much love,

Rebekah Adler

Mother to Gabriel, who has been undiagnosed for five years.

 

About the Author: Rebekah Adler

There is never a dull moment at my home located in the Great Lake state of Michigan and situated in Royal Oak. I am loved times 5 by 4 little boys and my hubby of 10 years.  I treasure quiet peaceful moments to write and it usually entails locking myself in a closet.  Music is my outlet.  Jesus is my inlet.  I’m a fighter but not always a winner.  Coffee lover. Disease hater.  With a full plate, I notice other plates are bigger. Inspiration is my motivator.

3 thoughts on “Time to Dance in the Storm: A Letter from the Mother of an Undiagnosed Child”

  1. Angela says:

    So sorry it took three years for a doctor to tell you they may never know. We heard that early on after many genetics tests and genome sequencing. A ray of hope is that advances are made through scientific research daily. Have faith that science wil catch up to your son one day and live each day like there’s no tomorrow. Don’t look back, just move forward and Enjoy every moment. I also have a son with an unknown disease.

  2. Karen says:

    I cam across your blog via FB>
    We have a DD who is also undiagnosed. 🙁
    global delay hypotonia and g tube fed because of aspiration pneumonia.

  3. Rebekah says:

    Hi Angela! It was 3 years ago so about 2 years into my son’s illness that we realized it was something most likely never seen. His picture has been very confusing and the condition(s) have mimicked many known and described cases but there are always one or two things that do not add up. We are heading to the NIH in the fall so I hope that they may be able to connect the dots or, have more answers than we’ve been able to get. Thanks for your encouragement and Good luck with your son!

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