Are you: "Focusing on What Matters"?

Our family's copy of the Spina Bifida Association of Iowa Summer Newsletter arrived today. I've been invited to be a guest columnist, and my first submission was printed in this issue (see below).

You may have come to my Injoy Blog because of the SBAA newsletter or found your way here through the website for my book, Involuntary Joy.

If you are coming to my blog for the first time, I realize you might be coming to see how similar our family's story is to yours. So you don't get too bogged down in my blog, let me point you to some specific entries - blogs with video logs (or vlogs)- that might resonate with you the most.

• A recount of our most recent Mayo Clinic day. Our Day at the Mayo Clinic - Rochester.

• An excerpt of a presentation that I make at educational training workshops and for future educators that attempts to explain how having a child with a disability creates a perfect storm for a family. When Your Baby Has Birth Defects. and Miss Blaser's Contemporary Issues Class.

• A recount of how I relive the day of Stross' birth every year. Stross Your Birthday is Nearly Here.

• A recount of how our family ran around Des Moines to fit in seeing two of Stross' doctors on a day with very sub-zero temperatures. A Day for Doctors.

Please let me know what you resonate with and what you might like to see discussed more. I believe our family and yours silently lives through much of life simply because it seems easier at the time (and maybe it really is easier). But sharing stories has benefits that cannot be denied: 1) We are reminded we are not alone, and 2) Others might obtain a glimmer of understanding for the first time.

If you are coming here because of the SBAA newsletter: Thank you and welcome. I hope you feel at home.

Joy

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Focusing on What Matters
published in Summer Newsletter, SBAA of Iowa

My oldest son, Stross, was born on May 5, 1991, arriving with spina bifida, hydrocephalus and a host of other congenital anomalies. He ushered my husband and I into an existence that has us unable to fully remember what life was like before his birth. And, truly, I wouldn’t have it any other way. Neither would Mark. (I asked him.)

Now, I am not about to wax poetic regarding the blessing it is to raise a child whose life is shaped, if not defined, by major birth defects. That doesn’t mean I don’t regard his life – and therefore mine – as blessed. It simply means I believe any notion of a blessing is lessened if I don’t regard my life’s dark moments with equal respect. After all, dark moments frame life’s lighter ones, coaxing me to focus on what matters most.

I’m resisting the temptation to tell you what I think that is, for I recognize that each family is charged with the task of determining what matters most at any given time. As parents, guardians or family members of someone born with spina bifida, I believe you know what I mean.

- Is owning a vehicle that can’t accommodate your child worth the luxury of keeping it?
- Is fighting for the right to sleep by your child’s hospital bed worth the confrontation you know you might encounter?
- Is time spent examining an EOB (explanation of benefits) worth the savings you might discover because of a misassigned charge?
- Is the opportunity for a night out worth the hassle of arranging respite?
- Is your child’s right to be taught in a class with his or her peers worth the meetings and tense conversations it might take to make that happen?
- Is the chance for continence worth the price – not literally but figuratively – of bladder augmentation?
- Is not making a career change worth the health insurance your family enjoys?
- Is explaining your child’s disability to a curious stranger worth the potentially pitiful reaction you might get in return?
- Is ignoring your marriage worth the effort it will take to either try to make it better or allow it to fall apart?

Sadly, this list only represents a small portion of the ongoing challenges regularly faced by families of children with disabilities. I can only guess that, as with my husband and me, your life has swirled at various velocities since your child’s birth, picking up speed or calming in response to the issues that regularly come your way. And, as with a perfect storm, there is a calm center. I regard the center of our family’s storms as the place where Stross resides, oblivious to all that is clamoring around him – at least most of the time. For his sake, I hope that always remains true.

What about you? Do you identify with the tumultuous and yet peace-filled moments that shape the lives of those who love someone born with spina bifida? That has been my existence for 19 years, and now I am one of the “old moms” on the block. That fact fascinates me, for I feel I still have so much to learn.

Stross still lives in our home with his younger brother, Skye, and likely will for a while – but not forever. He has had 14 surgeries in life and likely will have a few more – but not for a while. He is living a full life with opportunities to continue learning skills that will further enhance his quality of life – but not without a lot of extra work on our end.

I look forward to sharing life with you through this column or through my blog. Perhaps your journey is just starting out, or maybe you have lived experiences I’ve yet to face. I would love to hear what you have learned because of your son or daughter. Medical procedures, insurance battles, self-care advice, vacation tips, family encounters – you name it. Dark moments or light: There is joy in the midst of it all. Let’s plan on finding it together.

Andre' says: "Stross is getting his pump on!"

Stross has been working out weekly his entire life. That is not an exaggeration. Within months of his birth, a physical therapist began regularly coming to our home to teach us exercises for him. The intent was for us to help him develop the muscles he could use while looking for ways to compensate for ones he could not.

Our mini mighty man soon wowed us with his ability to use his upper body to pull himself the entire length of our living room floor using a baby-sized army crawl. Then he learned to throw his body from side-to-side while standing in an apparatus called a parapodium as he began to comprehend what it meant to "walk." His actual walking lessons were intense therapy sessions twice each week all through his toddler and preschool years.

The list of other physical feats is endless for our oldest son. In recent years, as little by little he has grown past his capacity to do some of the things that we (Stross, his father and I, and countless physical therapists) worked so hard to accomplish, we have had to shift gears. We are now focused on maintaining what we can of his physical abilities for as long as we can, working toward a quality of life that keeps him as independent as possible.

His exercise is no longer considered "physical therapy." Insurance is no longer willing to pay for sessions that are not building toward something that looks like restoration or rehabilitation. Maintenance of physical health is something we all have to do, and therefore, an insurance company makes no exceptions. But, make no mistake, the risks of losing range of motion and muscle strength are higher for Stross. Consequently, the need to maintain the abilities he has is as vital as it is difficult. That's why Mark and I have done what can to get Stross the help he needs without the help of insurance. We aren't exercise experts, but we can connect him with people who are. Sometimes he connects himself.

This past year Andre' Franco, Stross' workout buddy, has been a blessing. As a future personal trainer, Andre' couldn't have been better. Unfortunately, Andre' had the audacity to graduate and get married in May. (You can check out his and Eva's wedding here.) Now he plans to move away, and that means we will be searching again.

I am once more doing my best Scarlett O'Hara - planning to think of it another day. After all, we've got a bit of time. Andre and Stross still have some great summer workout sessions ahead, "getting his pump on," as Andre' says. And my son is inspiring me to get my pump on too, in my own Menopausal Momma way. I have bone health to consider; my body can't do what it used to either.

Part of me wants to believe that if I were Super Mom, I'd become Stross' workout buddy. But, then again, that really isn't the same, is it? I'm pretty sure Stross prefers working out with a cool guy named Andre' who he considers a really great friend. And that's the way life probably is supposed to be.

So, thanks, Andre' - from Stross, Mark and me. You've given us a wonderful model to follow. We will be forever grateful as we keep moving and building our collective muscles - together.

Our Man in Uniform

Our family's oldest young man is now a man in uniform. Stross, at 19 years of age, was inducted into the Boy Scouts of America (BSA) tonight. His life, the BSA's vision, our mission as Stross' parents - it all basically came together tonight when our oldest son ceremoniously claimed a status he's sought more than half his life. He is a Boy Scout. He is a man in uniform.

Amazingly, these two seemingly polar existences merge to reflect Stross' life circumstances. Due to the circumstances of his birth, our man of 19 lives with an intellectual outlook of one entering the scouting system in his boyhood years, yet his dream - since his actual boyhood - has been to serve his country as a man in uniform. That dream became possible tonight thanks to the Boy Scouts of America, and Stross' inherent persistence.

Stross - despite our assertions that he was too old to join the scouting program - independently searched the Internet to learn this: A Scout or Venturer with a disability may work toward rank advancement after he is 18 years of age. See also: Boy Scout Policy on Advancement for Members with Special Needs

This was incredible news for Stross (and us); for when he was in elementary school and first heard about the Boy Scouts, Mark and I couldn't bring ourselves to figure out how to make his desire a reality. There was just too much other stuff: two times per week therapy sessions, daily at-home therapies, daily homework, six times per day medical cares, church activities, family gatherings where we needed to think through accommodations, and his younger brother, Skye, who needed his own undivided attention as well.

Stross wanted to become a Scout way back then, but we deferred. We knew it wouldn't be as simple as signing him up and regularly getting him to the meetings. We knew that a lot of the accommodating and facilitating would need to come from us, for it is simply too hard for others to get their brains around what must happen for inclusion to help someone truly feel included - sometimes they never can. And if it doesn't happen, the pain from renewed grief is daunting.

You just never know what to expect. While a negative experience would have been unlikely in our friendly hometown, had we attempted an earlier entry into scouting, the outcome could just have easily been something like this: News Story: Scout with Disabilities Told to Get Lost and then also Blog: Cub Scouts tell Mother her Son is No Longer Welcome In fact, that could have been the reaction when Stross brought this dream up again shortly before his 19th birthday.

Fortunately, scouting runs in my genetic pool. I have Eagle Scouts as an uncle, cousins, cousin's children, a brother-in-law and - soon - a nephew. And, certainly, that much Eagle Scout initiative can come in handy at times like this.

A sincere thank you to Scoutmaster Greg Blank (Stross' uncle) for helping our son's dream finally become a reality (and for fielding dozens, maybe more than a hundred, text messages from an eager Scout-to-be).

Stross was radiant tonight. He wants to wear his uniform every day. He wants to become an Eagle Scout, too. It may take some time, but I believe he will. Mr. Persistent has his eye on that new dream, and I can hardly wait for it to come true.

I hope you can sense Stross' feelings of fulfillment in this vlog. I hope you feel - once again - his involuntary joy at the magnificence of life. You are destined to soar, Stross. I promise we will be here to keep your wings from touching the ground.

Congratulations, Kiddo! We love you.

A Change of Seasons, A Change in Life with Stross

I couldn't resist vlogging outside on Saturday, and I thought I had some free moments to do just that while Stross was inside doing what we call his "cares." At least six times each day (every four hours), he or, if it's in the middle of the night, we perform his intermittent catherization and attend to his ostomy. He's become fairly independent with this task, and Mark and I have decided to use the four years after high school that many parents think of as "the college years" to help Stross become as independent as possible during his version of college life.

Stross is taking colleges classes each day - either English 100 or Successful Study Strategies - and getting involved in some campus activities. Yet the rest of his day is spent practicing life skills as independently as possible. Things like meal preparation, a bit of cleaning or organizing and his cares.

On Saturday, Stross and I took time to get his bathroom even more organized. Now all the medical supplies he might need are on storage shelves within reach of his wheelchair so he has ready access regardless if Mark or I remember to restock the drawers he can reach from his dressing table.

As you'll see in this vlog, accommodating independence and realizing it are different things. We can get everything within reach and something still can go wrong. And we knew that. That's why we installed a phone by his dressing table and why we encourage him to always have his cell phone charged and ready. Each one of us - Mark, Skye, me - live life on the alert for Stross, which means we all keep our cell phones handy - except for Saturday, when I went to the tree house to vlog on a gorgeous fall afternoon and forgot to take mine with me. Ugh!

On the scale of emergencies, this wasn't a biggie at all. But it did serve as a reminder that our oldest son - a young adult in life years - will always need support within reach.



P.S. - I did remember to give you a tour of the tree house, but it would have made you seasick. I'll do it again sometime. Besides, I need to involve our number one tour guide, Stross.

Grouchy Day

I was looking through files in my computer and ran across this piece. I thought this blog would be a nice place to share it. And even though I wrote it more than a year ago, I recognize the day described as similar to ones I've lived more recently.

Grouchy Day - written Oct. 7, 2007

On Wednesday of last week, I was having too many “special mom” moments—those are moments when being the mom of a child with both intellectual and physical disabilities is more bother than blessing. My oldest son, Stross, had not managed his own medical cares well the day before, causing him to miss out on our specialized studying time. As a result, he totally bombed a modified test that his teacher’s aide had fretted over, causing her to write a very detailed note that required a very detailed response from me. Then the school nurse called needing my help (and of course I had not copied the handout the public relations class that I teach yet). Still I headed off to the high school on a rescue mission, missing my chance for lunch.

There were some more things: I didn’t get to exercise that morning; my scale seemed to be weighing me heavier than I’d remembered somehow; my computer chose an inconvenient time to display a “black box of death”; and some other pretty trivial stuff happened that I don’t care to mention here. But “things” were adding up in a way that made me grouchy; and the mood lasted into the next day. To lift my spirits, I put on a dress before heading out the door. And I felt better.

Now, some people might call that “faking it until you make it” – but I believe that’s a dangerous notion. I prefer to think of it as relying on a coping technique I know works for me. There’s nothing fake about it.

I own the life I lead, and I know how to lift my spirit in life-affirming ways when necessary. On that particular Wednesday it took a dress. On another day it might take singing a Broadway album in full voice or paging through a photo album. I might even need to call a distant friend I haven’t spoken to in months or even years.

I know what it takes to feel like me again. But only I know what that fully means. That thought alone might require me to lift my spirits to a place where I don't feel so alone. I think I'll grab a piece of dark chocolate and think about that some more.