The Humbling: A Caregiver’s Caregiving

So very much has happened since my last blog.  It’s overwhelming all that has occurred. So much so that it will be too long for one posting.  Let me start from the end(ish) for now. It’s about me.

As a full time plus caregiver to our daughter Sophie, 22, with a rare disorder, HSAN type 2 who is medically fragile, those 22 years have taken its toll on this 58 year old body. Yep, I’m disclosing my age as I feel every year plus more.  To those sweet sweet families just starting on the journey with special needs- PLEASE learn from my lessons.  If you have a loved one with physical issues, do not wait to install/get/sell your soul for equipment that will help you physically take care of them.

Having prided myself on being fairly physically fit (ok, so that was in one of my former lives before Sophie was born, but still…) in the last 2 to  2 ½ years I have been dealing with back issues. Thinking it was just arthritis which runs on both sides of my family (lucky us!) I first thought it was my hips as my Dad and sister have had hip replacements. No, after x-rays and MRIs I was found to have a number of issues going on with my back.

MRI April 2016

MRI April 2016

If you’ve never felt sciatica, bless you, for it ranks right up there with child birth that doesn’t end when it is severe.  Which mine was the last few months.  I went through the rounds of shots and physical therapy with top notch therapists for 2 years to stave off surgery till I just couldn’t handle the pain any longer and started on the big pain meds. Not my style. I originally was hoping I could beat this thing. Our life with Sophie complicates any way for me to be “down” for any length of time.  This would be a monumental challenge for the whole family.  A scheduling nightmare for what little nursing we have to help.

Met with neurosurgeons.  Insurance changes forced me to look yet again for a neurosurgeon.  I lucked upon a neurosurgeon within our insurance network –don’t get me started on that whole subject- whose assistant had a special needs son.  She utterly “got it.”  Karma. Fate. My angels intervening, whatever you want to call it.  She and he, the doctor, got me in as quickly as possible- only to find more damage than they thought.  Not a surprise in this home- we do not do anything easy.

My life is an extremely physical one. Caring for Sophie, even with lifts and equipment requires me or a caregiver to basically hover over her 24/7.  Seriously. We are the poster children for helicopter parents.  We have to be.  Sophie doesn’t feel pain and has tubes that come out of her body from various places, most importantly her heart (how she is fed. See this link if you are interested in learning more about surviving with a central line and TPN. She is in a wheelchair and uses a communication device. She needs constant care even through the night, as she has a sleep disorder.  Now I’m told by the surgeon “you cannot BLT- Bend, Lift, or Twist for a minimum of 3 months.  Your back is now fused from your Lumbar 3 to your sacrum.”IMG_5847

I cannot tell you how difficult this was to hear; I am a former dancer, cheerleader, gymnast.  I currently (pre-surgery) did yoga and ride horses.  Just prior to my scheduled surgery, a friend from college, extremely active, was in a freak accident and had screwed up her entire back- I take inspiration from her and the strength she is showing every day to come back.

Then I think of all the special needs friends who have had back fusions, typically full back fusions.  Many who have had complications.  Knock on wood so far I’ve had it pretty easy with the exception of tapering off of the pain meds, this, though hard, is not even a drop of what these heroes have had to deal with.  I am grateful for all those years of good health and the ability to dance like no one is watching whenever, where ever I chose.  I’m hopeful that with great physical therapy I can gain back at least a small amount of freedom to dance and do yoga, to dance at my son’s wedding if he ever gets married (way too early, he’s only 15 and says it’s not gonna happen.)

And most importantly, I have found so much gratitude and strength from the many friends and family who have come along on this new fork in my road. Watching my husband and son take over the many roles I play daily.  Learning to “Let Go” when things aren’t done exactly as I wanted them to be done. So thankful to the team of Sophie’s nurses that are the best group we have ever had. We have had amazing nurses over the years, but usually it was one or two.  This team of 3 are angels on Earth- I just wish I could clone them, have a few more for the hours we still need and then give the rest to the other families in Illinois who are so desperate for good help. As I’ve said in the past, you all are truly the wind beneath my wings.  There is NO WAY to thank you all enough for all the help that you have provided and continue to provide as I heal.IMG_0993

After a month post surgery (Yay me!!) I have been cleared to drive and fly.  My Dad, 91, very active, plays golf and exercises every day, decided during all this craziness to compete with me. He has crushed vertebrae from his L4 to his sacrum.  He lives independently with many supports down in Florida.  He is currently in rehab with the hope he will return home.  My son and I will be flying down soon to see him, relax in his beautiful home, and I get to be pampered by my son and a few friends who have moved south. Looking forward to it.  Trying to provide as much help for Rick and Sophie and the nurses who will hold down the fort up here in Illinois. .And if you know me well, beach time and pool time is some of the best medicine for me.

The Ocean is calling me and I must go. Peace.

photo (29)


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