7,000 bracelets of hope

Most days I don't really give much thought to checking the mail, but every now and then there is a sweet unexpected surprise among the anticipated bills and weekly advertisements. Yes, postal mail. It takes time to address an envelope and requires a moment of thought for contents which makes it all that much more special. We live in an older neighborhood where mailboxes hang on the front porch and letter carriers actually walk from door to door. It's charming and neighborly and today, delightful!

   

A few months ago I registered for the Global Genes Project 7,000 bracelets of hope campaign. It was World Wide Rare Disease Day and I thought the bracelets were a brilliant idea for raising awareness of rare diseases and spreading hope.

Hope, as involved as finding a cure, or as simple as the warm and fuzzies, to know someone is thinking about families touched by rare disease. Today it appeared in the mail, a little reminder that we are not alone. An unexpected surprise with impeccable timing.




A special thank you to the thoughtful woman who made and donated the bracelet I received.

It's beautiful and I will wear it with pride.

Part 1: Diagnosis

May16. The anniversary of Cooper's diagnosis which in many ways feels harder to deal with than his death. It seems appropriate to start posting "Philosophy of Care Video Script" responses today because it is in essence the beginning of a chapter, diagnosis day.

See post "Conference Abridged" for background on Philosophy of Care Video Script 

After the shock of the diagnosis, how did you come to understand it and what to expect?
The shock of diagnosis was just that, a shock. Honestly at this point we had prepared ourself for some type of physically dibilitating condition or chronic illness, maybe Cooper would need in a wheelchair, or ongoing therapy. The idea that he might have something terminal did not even enter our minds. Death was not on our radar. Immediately after Cooper's diagnostic MRI, before we had even left the hospital, the neurologist called to set up a consult as soon as possible. The urgent yet evenly collected overtones in his voice caused my heart to plunge into the pit of my stomach, trailed by a deafening silence. My mind filled with thought bubbles, like the gophur hunt game at a children's arcade trying to hit one on the head and another pops up elsewhere, questions both exponential and revolving. The very next day I remember checking in for the consult with David and Cooper, but instead of being led to an exam room we were shown to the neurologist's personal office. He asked us to sit down and then my mind goes blank. I can't remember his exact words, only that he handed us a box of tissue and said he was going to step out to give us a moment. Before we left his office, we were scheduled for a follow up appointment with a geneticist who would provide further explanation of the disease, and what to expect. That next appointment lasted almost four hours and was much like a cellular biology break-out session amid an anatomy physiology workshop. We certainly had a foundation for understanding lysosomal storage disease and GM1 after that, but it still didn't feel real. If there is such a thing as an out of body experience, that was it, surreal and mind numbing.

Questions about coping with diagnosis?
Internet, internet, internet. My first instinct was to delve into research. I guess this in some ways constitutes denial. I was certain that someone out there had the answer. If our doctor here didn't have a cure, surely there was a researcher in another state, another country. It was uncomprehensible that our baby, who didn't look like he was dying, might only live one or two years. Of course we were ready and willing to do anything, travel to the ends of the earth, whatever it took to give Cooper the long and happy life he deserved. The reality that we couldn't "fix" him and the fact that a cure really didn't exist was crushing, but we knew every stone had been turned and all possible avenues exhausted. It was then, and only then, that we were able to focus on the present. Our son was still with us in that moment and we needed to put our best foot forward for him, one step at at time.

Which doctors were most helpful?
The geneticist was helpful in terms of explaining what was happening physiologically and providing textbook version of what could be expected. In hindsight, I wish we would have consulted the pediatric palliative care doctor at this point instead of waiting until Cooper started experiencing challenges due to progression. Our palliative care doctor (and team) was most helpful with navigating day to day needs, challenges, support, and even medication changes that went hand in hand with progression which never seemed to occur duing business hours!

How did NTSAD help?
NTSAD was the first organization we reached out to and I am so glad we did. When facing a rare disease it's easy to feel isolated, hard to find someone to connect with and even harder to find someone who's gone through it. Most doctors have never seen a child with GM1 or allied diseases and medical textbooks don't acknowledge the realm of daily living skills necessary to cope much less function. NTSAD was able to put us in contact with other parents who have been down this road, some with children who were living and some who's children had passed. It was so beneficial to have an opportunity to ask experience based questions and have a network of parents for support.

Mother's Day

For me it feels complicated and confusing, unsure if I still belong amid this hallmark day. A reminiscent, joyful, memorable, bittersweet, significant day. I remember the excitement, anticipating Cooper's arrival. I was going to be a mom and what an amazing high to think that this was the first of many Mother's days to come. I don't know if there is an antonym to describe the polar opposite of "on cloud 9," but I certainly felt it the following year. Devastating, yes, yet unable to derail the unconditional, unending love that is motherhood.

I don't fit into the commercial mold that is Mother's Day and have been struggling with this question of identity since Cooper passed away.  I came across a blog post by Carmen's Mom, Lana, that had me in tears yesterday as she has so eloquently shared her experience, feelings which mirror my own.

Blessed Are Those Who Mourn (on Mother’s Day)
May 8, 2011 in Lana's Journal

This post is dedicated to all the moms out there who have lost babies through miscarriage and still birth, lost children young and old, and had failed adoptions. Special hugs today to the moms who have lost their only children and find themselves in the strange place of being both a mom and childless. You ARE a mom.

To all the women who have never been able to have children and find this day especially painful, my heart goes out to you.

Blessed are those who mourn, for they will be comforted. Matthew 5:4

***

Nine years ago, Dave and I were visiting relatives on Mother’s Day. I had recently suffered my second miscarriage and was feeling vulnerable and emotional on the day dedicated to moms. As we sat in church that Sunday morning, I was hoping that the pastor wouldn’t make a big deal about all the moms. I thought I might sink into the ground when he asked all the moms to stand up and the ushers passed out pens decorated with flowers and “Happy Mother’s Day.” Everyone smiled and clapped. I was on the verge of tears.
As soon as the service ended, my father-in-law disappeared. A few minutes later he came back into the sanctuary, handed me one of the Mother’s Day pens and said, “You are a mom. I want you to have this.”

I felt like a mom but I didn’t think anyone else viewed me as one.

But someone did.

Thank you Doug.

Since that day, I’ve never been able to fully enjoy Mother’s Day. I feel for all the women who are hurting on that day.

And now I’ve joined another group of women, those who have loved, cared for and said goodbye to their child or children way too early.

Today is my first Mother’s Day since Carmen passed away.

I have my two bundles of joy who will make this day extra special. Lauren will be ecstatic to give me her Mother’s Day school project and the present I bought for myself but that she thinks Daddy bought (hee, hee!). Hope will be her usual ball of energy and exuberance. And Dave will do all sorts of things to make the day wonderful for me.

I am thankful.

But someone is missing.