Tuesday, June 8, 2010

Our Day at the Mayo Clinic - Rochester

The medical profession has played a significant role in our son Stross' life since the moment his lungs first filled with air. Please understand that medical professionals may have assisted him in taking his first breath, but no more than they would have another newborn. No, their most diligent medical efforts for our otherwise healthy newborn-infant-child-now-a-young-man, have been related to his physical and intellectual condition.

His malformed body has been the reason our family has grown comfortably accustomed to the rhythm and reason of medical facilities. During the span of his 19 years, we've split our time between four major hospitals and become well acquainted with more than two dozen doctors. We've also shared hours upon hours of life with occupational and physical therapists. In addition to seemingly endless therapies, these years have also been marked by 14 surgeries and a hospitalization for an illness–rotavirus–that got out of hand.

But those facts aren't offered as complaints - only context. It's my way of attempting to explain how a place like the Mayo Clinic in Rochester, Minnesota, now feels like a former hometown we love to visit. Well, only if it's for a day of checkup appointments (a.k.a., the Spina Bifida Clinic Day).

Our family probably appreciates clinic days the way distant relatives appreciate family reunions. You get pre-visit anxiety, but mostly related to not fully knowing what to expect. And, you might enjoy a full day of really good news, or a day that goes down the dumper for a hidden reason that finally becomes known. There is only one way to find out, however: Show up and endure it all.

There is soooooo much more I could write about the way our family tackles a typical clinic day.

* How we strategically pack for a day that's mostly hurry-up-then-wait.
* How we understand to rush from one diagnostic test to the next so we won't get behind schedule the remainder of our day.
* How we individually entertain ourselves in our examination room "home base" while waiting for one doctor after another to stop by for a consult.
* How to create a new experience on our way to lunch or another building if we ever do get ahead of schedule.
* How we've learned to ask questions for which we might not like the answer.
* How coffee breaks and chocolate treats perk up the most tiring day.
* How budgeting a shopping stop on the way home is an important component to our personal wellness.
* How preparing for the possibility of tears makes them a bit more tolerable should they decide to well up and spill out.
* How time spent in an exam room or waiting room moves at half the speed of time spent eating lunch.
* How we feel connected to every person with whom we share an elevator ride - whether they are on their way to work or medical tests and consults of their own.

Our good news on this visit: Stross has graduated to annual visits across the board.

Our not-so-good news: Stross' body is no longer capable of safely bearing his weight when he pulls himself to stand. Where he once was capable of walking long hallways for large portions of time (using leg braces and arm crutches or a walker), he now should no longer attempt to stand.

Basically, we saw our son stand on his feet for the last time on this visit - if you could even call what he was doing on Monday "standing." I recognized the grief when it came. The same brand of tears I cried when we realized he should no longer use his crutches or walker to walk. My solace at that time was: At least he can still stand. Now that becomes a memory too. And you can see what it looks like as well, should you decide to join us on our clinic day via the vlog. I chose not to record my tears. Those are for my memories alone.

I hope you do watch these few clips from our day; I hope you enjoy seeing such a day through our eyes. If your family has someone that gives you a reason to be familiar with such experiences, I'd love hearing how your family tackles these days. We're all in it together, aren't we? And thankfully so.


5 comments:

Tammy said...

Well my friend and soul sister...
I read your "List" of things you could write about and giggled as I remember all of those things.... It was 3 1/2 years of visits for us as Kelly endured her treatments for cancer. It does become a sense of "normal" when you get there, and they are truly family in ways few will understand. What I held to, as I feel you do is that yes... No one should ever have to endure this... but yes, this is life. And like all areas of life, we choose to live them with joy (the feeling not the woman) or not. Even in the midst of those tears you choose to keep to yourself, I know you find joy. I have watched so many who don't. God's grace is sufficient, ESPECIALLY in the midst of those things we cannot explain. And in the darkest moments, there is hope, and in the most joyouse moments, I feel God laugh. Thanks for all you did to make my journey easier. I only pray I can continue to be a part of yours.

Love you Joy....
MORT

Joy said...

You are forever part of our lives, Friend.

My love to you as well ... agape, agape, agape.

Joy

Trudie Goff said...

Joy, I immediately had to read this vlog on the Mayo Clinic. It is a place near and dear to my heart as I spent 6 1/2 years going there...I believe it was ten visits and many long, involved days.

Thank you for sharing this day in the life of your family. And in spite of going there for medical reasons, you shared glimpses of a normal family from a lost sweater to Stross going to get his blood work done on his own, Mark on his computer, and

Each time I went there, I felt like I had been given a gift of some sort. The doctors, the friends and family who helped me, and just the whole town of Rochester, MN will always resonate in my life. Ihope that this place that had given me hope and respite will give your son and family that as well.

I was sorry to hear about your son's legs. I am not sure what to say to be of comfort sufficiently except to say that I care and I will pray for all of you. Your family continues to be of such inspiration to me. Your son is brave.

I had to crack up when you were talking about shoppping and remember walking in those very places and eating and shopping there, as well. Hoping you are finding the care as stellar as I did.

Craig stayed with me, as well as Julie Tostrud Simonson, and my parents and dear husband. I even reconnected with Kristi Hansen Rosenquist and Randy Brown on occassion when I went there.

God is there in our midst, in the joy, in the pain, and whatwe can pray for is peace. None of this is easy. Blessings to you and your sweet family, dear joy.

Anonymous said...

and
I left this out...
you getting happy about finding the chocolate place. I love going there to get treats.
There were many little bright spots that I would build into my long days there. The artwork was gorgeous and I stayed at some little motel and took the shuttle over to the mammoth complex.
God's speed, Joy.

Joy said...

Thanks so much Trudie. Thanks for sharing some of your story as well.

If the walls of the Mayo Clinic could talk ...

God speed to you too ...