Dear Congress

Patricia Weltin

This story is not for the moms in the rare disease community because they are this story. This story is for the mostly old, mostly white, mostly men who sit in D.C. and decide who will and who will not get treatments.

Dear Congress,

My children are sick. My children will remain sick for the rest of their lives because my children do not have a treatment. Yes, this is hard to believe. What is more difficult to believe is that there are tens of millions more children just like mine who do not have a treatment. Some of these children are suffering, many are dying and many mothers struggle to do the impossible.

The specifics of my children’s disease are not important. We are the orphaned, the overlooked, the misunderstood. I would like to share with you from my mother’s heart, some of the events of our lives.

I would like to share what it is like to carry your child into an operating room. Olivia, my oldest, had her first surgery at the age of four. I carried her tightly in my arms, while my heart pounded against her tiny chest. She didn’t know. The operating room is shockingly bright when compared to the hospital hallway. The number of masked medical personnel was both comforting and horrifying. The dozens of other times I brought her into surgery were just like the first. She was always curious at first, but when the mask went on, the tears came, big tears from her frightened eyes. I had no tears. My tears were fought back so that my face remained the mother she knew, the one with the soft, reassuring smile. The minute her beautiful eyes were closed, the tears came, my knees buckled and I had to be helped from the OR. Every single time. This does not get any easier.

I would like to share the story of bringing my daughter, Hana, for her first surgery. She had her first surgery at the age of seventeen, so I was not allowed to go to the operating room with her. Hana’s surgery was to correct a malformation in her brain and to fuse her neck so that it would stop kinking her brainstem and destroying her quality of life. No starting off with a simple surgery for Hana. This was the big time. This surgery would be 7-10 hours.

As Hana was wheeled into the pre-op room, I followed behind. Once Hana was moved to a small room, I located a trash bin behind a partition where I was able to retch out the fear that was eating out my insides. Composed and wearing my soft, reassuring smile, I sat beside her until they took her away. I tried to reassure myself that the fear was gone and during the first few hours of surgery with the help of a friend, I believed it.

As the 8th hour neared with no word from the doctor, the fear was consuming me. I can not let this fear take away the mother Hana needs, so I find a bathroom where I retch until the fear is expunged. Her surgery lasts nine hours and Dr. B. assures me all went well, but this does nothing to prepare me to see my brave, stoic child begging someone to stop her pain. I try to soothe her with my voice which sounds calm and unafraid. She is given pain meds and put in the CCU. It is a long, restless night where Hana complains mostly of nausea. The morning brings worsening nausea and vomiting. She is having a bad reaction to the anesthesia. It takes three medications and many hours to get the nausea under control.

Hana’s surgical story has not ended. I am writing to you from South Nassau Hospital. Hana lies next to me with her hands wrapped in blankets because for an unknown reason they have turned as cold as ice. She is asleep, but her face is not peaceful. It is pain. In two hours, Hana will be 18 and all she wants is to go home.

When legislation comes across your desk about money for research or treatments, please think of Olivia and Hana and the millions of children like them. Think of their mothers whose tears are shed in the shower, into their pillows or alone in their car. Make the choice to end suffering. I have to stop here. I need to retch.

Sincerely,

Patricia Weltin

At What Cost

a and p hockey jerseyAt What Cost

Patti M. Hall

 

Eighteen blue, silver and white gift bags, stuffed with contrasting tissue paper lined the table. Each sported a number from 1 to 18. However typical it was of me to overdo things with gift giving, especially when it came to my boys, this was a milestone made grander by the medical ordeals my son Adam had endured to make it to here.

Adam fist pumped as he unloaded the loot and passed it to his brother. The hockey cards, cash, candy, and a couple of much higher priced items were an elaborate haul. The last bag contained coveted tickets to an All-Star game featuring his favorite team. I stood back, my face revealing glimmers of how my much younger self must have looked at Adam when he was a baby. I felt the heat, the slow roll of tears down my cheeks and busied myself with pulling away the refuse of his unwrapping from around his feet.

I knew what other moms did on their son’s 18th birthdays. There would be backslapping and congratulating and joking about being legal to vote or to have a first drink. I stood back, stomach clenched against what might have been. A couple of rounds of the pleading mantra that had become the soundtrack of our lives rolled by in my head, “please not my baby, please not my baby.”

We were two years into the odyssey with Adam’s ultra rare, incurable disease, and around that birthday, we caught a break for a couple of weeks. There were more regular days than hospital days, and fewer phone calls to remind us our lives had registered an 8-point earthquake from which we wouldn’t be rescued. So we made a freaking big deal of that birthday.

We do a lot of things that other parents wouldn’t do, we parents of rare kids. I’m not talking about extravagant presents. We do absolutely everything we can and more. We become more than mothers, transforming into advocates, cheerleaders, bodyguards. We get a Ph.D. in our child, his symptoms, her treatment options and the doctors who can provide it. While we make the calls, keep the appointments, talk our terrified kids into painful tests and relentless pokes and so many repeat scans, we end up in relationships with our children that are more complex than the other parents we know.

“Your boys sure love their mom,” my friend Mailie said. She made the remark outside the dressing room after one of the boys’ games.

“What makes you say that?” I asked.

“They actually choose to spend time with you. You’re always together. I’m so jealous.”

“Ya, but think about why that is. Then you won’t envy it. We spend a lot of intense time together in places where they don’t want to have to go without me.”

“You mean because of the divorce?” Mailie asked.

“No, the divorce was nothing compared to all the medical stuff. Adam’s stuck going with his mother everywhere. I’m sure he wishes it were different, that a lot of things were different.”

“I don’t think he sees it that way, actually,” Mailie said. She had known my boys for about eight years, and felt qualified to surmise.

“Really?”

“He wouldn’t be as well as he is without you. Remember that will ya? It may be a life-saving necessity, but you guys make it almost look like fun.”

I thought about this. She wanted me to thank her. She wanted me to beam pridefully for a moment, confident in the knowledge that I was one of the cool moms. But how could she know that in an odd way she had shone a light on the deep sadness, the perpetual grief in our lives, and on our difference.

“I’d give it all up, you know. All this time with Adam, for just one day when he could get up and forget he is sick.”

Closer than other mothers and sons, hell yes. But at a cost no child should have to pay.