My mother and daughter planting flowers– post-stroke and pre-EDS

This wasn’t the way it was supposed to work.

Late January of this year, when the colors of northern Michigan were either white or steely grey, my mother had a stroke. Although, she would deny it vehemently, she is a true matriarch – taking her family in hand and teaching us how to treat one another by the way she lives her life. She is a pillar of steel wrapped in soft flannel quilts  – making her way gracefully through a life she might live differently had she the chance to do it again. She wraps her arms around her children and grandchildren and we are protected with warmth and love. I have tried, and failed, to become like her and I try each day to mimic her in some small way.

But it is her steely strength that I admire right now. Today.

Mom took care of dad at home for the last years of his life, up until the day he died – at home, in his own bed, surrounded by his entire family. She did this at great cost to herself but she did it with dignity and without complaint. It is simply who she is. When my father passed away, and her grief (and anger) subsided, she decided that she was going to take care of herself, live quietly, and enjoy all of those activities she had pushed aside to care for my father. Sadly, she only had a short time to do this unencumbered. She lives alone and one frozen night she had a stroke. Miraculously, she was able to reach the phone from where she fell. The local EMTs broke a window to get into the house to help her and living in a rural area, raced her to the nearest hospital. Again, miraculously, she made it in time to have the medication that would help her recover more fully.

I was able to be there with her in the stroke rehabilitation clinic for only a short time.

Those days were some of the most difficult and most rewarding experiences I’ve ever had. I spent each day with her, going through all of her therapies along side of her and leaving when she fell asleep. We take for granted what a triumph it is to drink our coffee without spilling it. She cried with joy when she got through a meal on her own without knocking things off the table. I cried with her and I couldn’t be more proud of how hard she worked. After each therapy session she was sweating and exhausted and I just wanted to shout out to the world “My mom is AWESOME!”  Endless hours of placing colorful cups from one tray to another, learning to walk without stumbling, tossing and catching a ball – all things we see children learning and yet, for my mom, it took the energy and determination of a doctor completing brain surgery. She even cracked jokes to her therapists during particularly difficult tasks. She never gave up. She was tired and she was frustrated, but she just didn’t give up.

We had a happy ending when she was able to go home after only a few weeks and she has been living at home with help from my sister, brother, nephews and cousins. (Side note: I wish I could be there too!). She did have a another set-back in July, when she was knocked over by a neighbor’s dog and broke her pelvis, but she kept her optimism in tact and is recovering once again.

Fast forward six months and I am again next to a loved one in physical therapy. Only it isn’t supposed to be like this. It is my daughter. She is only 15. It was supposed to be me…or my husband… or, God forbid, his parents. Not my happy, vibrant young woman.

While we were in Michigan this summer, Sophie became very ill. We didn’t know what was wrong, and off we went to the same rural hospital. We left the hospital without any answers but knew that once we were back in Atlanta, we’d have access to all the testing we’d need. It all started with an excruciating stomach-ache and slowly, through the months of August and September, Sophie became sicker and sicker. She is now unable to attend school, take walks, or socialize for more than a few minutes. She has Postural Orthostatic Tachycardia Syndrome (POTS) and a genetic disorder called Ehlers-Danlos (EDS). Both leave her exhausted and with a long list of symptoms that would break a grown man in the same situation.

Like my mother, I was next to Sophie during her first visit to the physical therapist. Like my mother, my daughter is showing strength that I don’t possess. The first treatment was hours of evaluation – strength tests, blood pressure, heart rate, etc. At one point, Sophie sat down and whispered to us that she: just. couldn’t. do. it.  Her tear-filled eyes pleaded with us but she has her grandmother’s determination, and soon she was up and finishing. And, as with my mom, was even maintaining her sense of humor. I know that she is scared (I’m so scared). I know that she is frustrated (I’m so frustrated that it isn’t me instead). I know that she is brave (I am not brave enough). I know that she will thrive (she is stronger than me). But it wasn’t supposed to be like this.

These two women are my inspiration. I am blessed to share their blood, their love, and their smiles.

I am also blessed to have a team of women behind me as we go through this. Thank you Jill, Natasha, Sheli, Leah, Ofra, and Debra. Thank you Elizabeth, Lisa, and Pam. I will need your strength over the next months as we work harder to get Sophie back to school, back to life, and back to that wonderful, blissful, state called Ordinary.


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