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.
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