What is it about a doctor’s appointment that we put so much hope and expectation into it?

I’ve been fairly ill, or at the least, not well at all the last few months. What started out as something akin to doing too much has twisted into the world turned upside down for me. The world is certainly not right from where I sit—33 year olds should not have a cane as a fashion accessory. So when I had to stop the world and get off, the first place I headed was my doctor’s office—as it will, one doctor’s office has turned into a multitude of them. Each visit plagued and burdened with all my great hopes and expectations of walking out with a quick fix and the notion of ‘let me be on my merry way’ again. Each one left me more dejected and alone than the one before.

Why is it that so very much goes into this process?

Over the last two months, I have faced the unknown. Faced the terrifying thought of ALS and the years of my life measured in months rather than decades. Faced the idea that some things cannot be put right again. I have sat in a doctor’s office and cried, begged, and pleaded for anything to put the world right again—only at times, to see the backside of a coat walking out the door.

From beginning to where I sit now, I have had soaring hopes for those I reached out to for treatment to all out anguish and agony over not finding an answer. I have cursed those who sought to help me simply because there wasn’t an answer.

In the middle of all this, my middle child, Ewan went in for a ‘state of the state’ kind of appointment with an EE clinic (eosinophilic esophagitis / EE). Again, my hopes were through the roof that we would get a break from the weight of the world in the form of his restricted diet. As my husband and I watched our son drift slowly into the unhealthily thin area, we again bargained with everything we had to get him to eat and to want to eat. Ewan’s relationship with food and eating has always been complex—it has never once been easy and uninhibited. Every bite, every swallow, every attempt at eating has been gained by only the greatest of efforts. He has had bad times, good times, and even some great ones—but none of them have been easy for him. He faces the task of eating with not only EE, the painful disorder of his esophagus, but also that of a child with autism spectrum disorder. His sensory experiences are not the same as mine—he is not interpreting the world in the same manner as I.

Ewan has gone from eating just a handful of foods to eating a wide variety through Food Chaining with help from some of the most talented individuals I have ever had the pleasure of knowing. But what he faced this time seemed different, seemed as if some part of his brain clicked on and overshadowed all the work we had done. He just didn’t seem interested at all in any of it. If this is the face of anorexia, I hope to never see it again in all my life. As a last ditch effort, we decided to embark on another series of visits with the EE clinic—again hoping against all hope that we would drive 4 hours to return with the world in our hands. Great hopes and expectations to be sure.

Again, we seemed to hope for too much—the easy answer just wasn’t meant to be. We were not looking forward to another round of scoping and biopsying—we had done our time with that and didn’t want to go back just yet. We left feeling adrift, alone, and disillusioned with the whole world. It seems you are never as alone as when you’re walking out of the appointment room to an empty car and a long drive home.

Mercifully, Ewan has a wonderful team already in place and we went back to square one and thought about what is some alternative route that we could try. Swallowed Flovent became our saving grace for Ewan. Although he has done extraordinarily well with the dietary restrictions of EE, he had lost all interest in eating and we needed an ace in the hole to get him back to the table. Flovent has given Ewan his appetite back. His curiosity in food and eating has been piqued again. It is pure enjoyment to hear him ask for food, to ask if he can try a bite and knowing, even for this short period, that we can say yes without looking once at the ingredient list. Flovent has saved us all and has restored my sanity for the time being. I will never in all my life be able to repay Dr. Fishbein, Cheri, Stacey, and Sibyl, for all that they have done for this child. My debt of gratitude to them is greater than I can possibly explain.

As for me, I feel as if the path is beginning to open up a bit again. I was able to sit down with my family doctor—MY doctor, not a specialist, not some unknown person and tell him all my fears and all my expectations and everything that I seemed to have lost. A conversation as old as time has begun again and I have faith that between his guiding hand and that of a higher power, I will once again return to my old self.

I have no answers about why great hopes and expectations are so high for those who care for us. I have no inspirational words of wisdom about coming to grips with any affliction, pain, or illness. I am left only with the idea that healing comes from many places—from deep inside the soul and from the compassion of those with the knowledge to heal. As alone and rejected as I have felt over the last few weeks from those who seek to heal us, it pales in comparison to the prayers I have received from scores of people I’ve never met. It pales in comparison to the compassion from my own doctor to recognize that while there may be no fast and easy answer, we’ll walk that road together.