What It Is Like to Watch My Mom and Daughter Navigate Their Health Challenges
This wasn’t the way it was supposed to work.
Late January 2015, 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 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 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 alongside 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 setback 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.
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 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 syndrome (EDS). Both leave her exhausted and with a long list of symptoms.
Like my mother, I was next to Sophie during her first visit to the physical therapist. Like my mother, my daughter is showing strength 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 she is scared (I’m so scared). I know she is frustrated (I’m so frustrated that it isn’t me instead). I know she is brave (I am not brave enough). I know 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.
Follow this journey on Glint of Light on Broken Glass.