Have hope, and Make-a-Wish

This is the speech I was honored to present at last night's Make-a-Wish Cheers for Wishes Gala.

I am not the most eloquent of speakers, but since I am a passionate writer, I decided to put pen to paper to help you envision how our family arrived here tonight.

While I cannot convey to you what it feels like to be a wish child, I can tell you what it means to be a wish mom.

Our family’s story is one of hope. Losing hope, then finding it in the most unlikely of places.

The word rare is defined as something unusually good or remarkable. Yet, when you combine the word rare with the world illness, you quickly find yourself adrift, desperately searching for answers. In our daughter’s journey, we discovered many doctors were hesitant to admit they did not understand what was wrong with her. This behavior only compounded the frustration we experienced from not having answers. However, when it is your child who is sick, that once pointless frustration transforms into sheer determination. This determination guided us to discover the answers Jayde desperately needed.

You have heard the saying, “Be careful what you wish for?”

When you spend every waking moment attempting to uncover what is wrong with your child – then the frightening questions are finally answered - an entirely new path unfolds. It is a road you are unsure you are prepared to travel; still, you blindly venture down any path which will relieve the suffering of your precious child. Along the journey, you find hope is a scarce commodity, then there are the moments you are frightened to allow yourself to feel such a powerful emotion.

To fully understand our daughter’s story, I must take you to the beginning.  Jayde was two years old when she suffered her first migraine. Though her pediatrician told me she was too young to have migraines, I understood firsthand what she was experiencing. A few years later, she was placed with pediatric neurology, giving us her first diagnosis – complex migraines. Other than her neurologist, we would spend the following ten years sparring with doctors and beating our heads against a proverbial wall.

Our daughter lives with four rare invisible illnesses; they intertwine like a puzzle. We refer to these illnesses as the ABC’s of Jayde. POTS, which is short for Postural Orthostatic Tachycardia Syndrome, EDS, also known as Ehlers-Danlos Syndrome, SMAS, which is short for Superior Mesenteric Artery Syndrome, and NCS, which stands for Nutcracker Syndrome. Each new diagnosis, was like finding a missing piece of her puzzle.

For many years, our primary care practice dismissed my concerns and Jayde’s erratic symptoms. Her normal heart rate hovers between 115 and 120 bpm on a normal day. When she goes into a flare, it has spiked over 180 bpm - that is double what the high end of a normal heart rate should be.

Each time we visited Jayde’s doctor, I questioned why her heart rate was high, and each time I was told a variation of, “Children get excited or anxious when they visit the doctor.” My intuition told me something was wrong, but I thought, I am just a mom—not an MD.  

Jayde endured years of extreme fatigue. I am not referring to, she has a cold, and is exhausted. I am speaking of bedridden, cannot muster the energy to play or go to her favorite dance class type of exhaustion. The third time her doctor attempted to test her for mono, I told her to shred the lab form and figure out what was wrong with my daughter - because I refused to have her be a human pin cushion.  Jayde’s doctors ordered testing for diabetes, lupus, thyroid disease, and several other illnesses.

The good news, she did not have any of those illnesses, the bad news - no one knew what was wrong with our child. Her doctor told me her chest pains were heartburn and prescribed Zantac.  Her nausea was dismissed as a side effect of her migraines.

Despite the eight-hour vomiting episodes every seven to ten days, we were told, “Well that doesn’t make sense, but it is better to have a thin child, than one who is obese.” From the moment Jayde could articulate her feelings, her relentless joint pains were written off as growing pains. Jayde's doctor believed her illnesses were all in her head, in turn, she attempted to place Jayde on Prozac before the age of twelve.

A chance appointment, with a new doctor in our practice, would eventually lead us to answers. After the new doctor examined Jayde, she left the exam room, returning with a pulse oximeter.  I became worried.   She explained her concern regarding Jayde’s high heart rate. After everything checked out, she discussed what to watch for and sent us on our way. Less than three months later Jayde experienced her first fainting episode.

Right then, I knew which doctor to call. Three weeks later we met with Dr. Joel Brenner, Jayde’s cardiologist, at Johns Hopkins Children’s Hospital.    

This amazing man is responsible for diagnosing our daughter with POTS and EDS.  

Fast forward to the end of March 2018, when Jayde’s vomiting episodes made it impossible for her to function, Dr. Brenner ordered further testing. After reviewing the results, his words stunned me, “I know what is wrong with your daughter, but this is out of my scope of expertise. I know a doctor who can help you. I need you to remain strong and not give up.”  I interrupted him to reply, “It is not in my nature.”

 He continued, “Good because we are going to need that. We will figure this out together, and we are going to make your beautiful daughter better.”  From the moment of Jayde’s first migraine to this conversation, there is a fifteen-year span. In those fifteen years, all Jayde’s physicians combined had not managed to show the amount of hope, as this man had exhibited during a ten-minute conversation.

I am the first to admit I am a Momma Bear. However, I felt as though I had been in hibernation. After our first appointment with Jayde’s cardiologist, I resolved I would no longer allow anyone to silence my roar, or hers, simply because the letters M D followed their name.

In May 2018, our family met with Dr. Jelin. Though Dr. Brenner had much faith in his colleague, I was skeptical, burnt out from fighting with doctors, and I knew my daughter was terrified to hope this physician held a possible solution.

After we concluded the introductory pleasantries, my mouth opened, and I could not have stopped myself if I wanted to.  I stared at him as I commenced, “Before we begin, I need to say this." As I pointed to Jayde sitting on the exam table my words flowed, "She is exhausted...we are exhausted. You have been taught when you hear hoofbeats to look for zebras, not horses.”

(Even though I knew my phrasing was backward, I continued.)

“I know you are an expert in your field of study, just as I am an expert in this little girl right here, and she is a zebra. If you can understand and respect these facts...great, we will get along just fine...if not...there is no need to waste each other’s time."

As I finished my rant, a large smile appeared on his face as he responded, "That is perfect, because almost all my patients are zebras." I breathed a sigh of relief, secure in the knowledge we were finally where Jayde needed to be.

Jayde underwent surgery with Dr. Jelin on August 17, 2018, for a Duodenectomy. The two of us spent a week living on the tenth floor at Johns Hopkins Children’s Hospital.

 There is no cure for her SMAS, and while her surgery is a bandaid it gives her a quality of life she has never known. When people ask her about her surgery, she laughs and tells them, “I now have two stomachs.”

The stark reality is, one in three patients do not survive SMAS. If this was your child, what mountain wouldn't you move?

When Make-a-Wish telephoned, informing us they were granting Jayde a wish, as you can imagine, I cried. Someone besides my husband and I recognized Jayde's struggles.

You see by the time most families like ours arrive to the Make-a-Wish portion of their journey, they are exhausted, usually cannot tell you the day of the week without assistance and are more knowledgeable about their child’s illness than many doctors.

The words, "My daughter is a Make-a-Wish kid," are words I never anticipated spilling over my lips.

In June 2018, three beautiful women, with humongous hearts, visited our home. As we sat on our deck talking, for a few brief hours, all the stress surrounding Jayde's pending surgery disappeared. We were swept away—caught up in a cloud of hope.

Planning for the future has a magical way of doing that, especially when your child is living with a life-threatening or life-limiting illness. For our family, this is what Make-a-Wish is about—HOPE. Though Jayde had been apprehensive to hope or dream, she shared her aspirations with these three kind strangers...who quickly felt like family. While she could have chosen practically anything, she chose a photography trip to Santa Monica, California. This was her hope, her dream—her wish.

 In the early morning hours of Sunday, October 13, the three of us set out for BWI and jetted to LA, where instead of hospitals and doctors, our family was surrounded by sun, sand, and surf, and the rest is priceless memories captured by our daughter and her camera.

When our family was collectively holding our breath, afraid to hope or dream, Make-a-Wish held our hands, telling us it was alright to have hope and for Jayde to simply make a wish. No amount of gratitude will ever be sufficient for what this wonderful organization did for our family.