She covers her eyes with her hands and starts to cry. “I thought you’d be mad.”
It was the second time today she had burst into tears. The first was disappointment. The hysterectomy she had been looking forward to having was being postponed. She had been preparing herself mentally for weeks and last night we had worked together to prepare her body. Oh those unpleasant enemas and douches. We were both glad when that was over. She had her last sip of water at 11:30 pm. “Nothing to eat or drink after midnight” the directions said. “Be at the hospital at 11 am.” We were there at 10:30.
Her oxygen levels are too low. The anesthesiologist is not about to do surgery. “Are you sure you’re feeling okay? Have you been short of breath? We’re sending you to ICU to see how to get your oxygen levels up. We’re calling in a pulmonologist and a neurologist.”
A very kind and skilled nurse brings in a spirometer and teaches her how to exercise her lungs. I have rarely seen my daughter so motivated. Motivation is not a strong suit for someone with myotonic muscular dystrophy (DM). She is told to use it every hour. She uses it several times in the first hour, proud of herself when her breath pushes the ball into “good.”
DM is a slowly progressing neuromuscular disease. Until Medicare kicked in a year and a half after she was awarded social security disability and before the Affordable Care Act was passed, she went without medical care except for a few trips to the emergency room and twice a year visits to a doctor through the Muscular Dystrophy Association’s clinic in West Chester. When she needed an endometrial ablation in 2013, she paid for it out of the back pay she received from Social Security. When her fibroids grew and began pushing against one of her kidneys, it was time to have her uterus removed.
General anesthetic is dangerous for someone with DM. Thanks to the Myotonic Dystrophy Foundation, we have pages of instructions for the anesthesiologist. The plan was to give her an epidural.
The anesthesiologist seems to know what she is doing. She tells me later, “You will need to advocate for a neurologist.”
I soothed my daughter’s tears the first time they burst forth. “I think this is good. You will be getting the medical attention you have needed for years.”
She is in panic mode. How will she manage her time off work? She has been granted six-to-eight weeks leave from her cashier position at a local discount department store where she has been working part time for the past several years.
Yes, she works part time since the convenience store where she had worked fulltime for seven years closed. When someone with DM wakes up in the morning, they feel as though they have already put in a full days work. My daughter has insisted on working and living independently for as long as she can. She lives with the fear of being in a wheelchair someday. I hope you can appreciate how big that is. Motivation is not a strong suit for many with DM.
“We’re going to take this one thing at a time,” I tell her. “For right now we need to get your oxygen levels stabilized. We’ll see what happens after that. You won’t be the first employee whose medical attention didn’t go quite as planned. Your workplace will deal with it.”
She relaxes.
“What makes you think I’d be mad?”
I ask the question but I already know the answer. I cringe. Her fear harkens back to old behavior on my part. So much about the way someone with DM manages their world is foreign to me. In addition to the fatigue my daughter experiences with her muscle weakness, the executive function deficit that is part of the disease makes it difficult for her to plan ahead, organize her life, keep her living space in order, attend to personal hygiene. The list goes on and on.
As a perfectionist who needs order in her life, I have been impatient with her and sometimes guilty of angry outbursts.
She says, “You weren’t expecting this. You had your schedule all arranged for the surgery to be today.”
I’m retired. I have no employer to contact. I have plans with friends to rearrange and reworking my memoir can be put on hold. My daughter doesn’t know about the spiritual practice I have adopted. I have been working to maintain serenity and equilibrium in the face of any stress that comes my way. I’ve been working hard to let go of my need for order while she has been living with me in preparation for her surgery. I set an intention to extend loving kindness to her. She deserves that and so much more. She lives her life heroically.
I tell her, “I’m sorry for anything I’ve done in the past that would make you afraid I’d be mad today.”
I atone for past transgressions. My relationship with my daughter continues to heal.
Ah, Linda. How deeply you touch my heart. To strive for the expansion of our souls, knowing and owning our failures can be both uplifting and painful! As a mother with my own ‘track record’ of behaviors that call for ammends, I send you much love.
Dearest Marcia,
I have to say I’m so grateful for my training in Imago Relationship Therapy which has helped me with the expansion of my soul. I think of you and your parenting program often when I’m changing my behavior. Oh that it would have been available when our children were young. But it is never too late to expand our souls and extend our love. I can see the difference it is making for my daughter and for me. Much love back to you and Larry.
This post is very moving, Linda. As someone who has witnessed your progression from perfectionism to acceptance of what is, your post speaks to me of your heroism too. My prayers are with you both. xoxoK
Thank you, Kate,
It is so nice to be validated by one who is witnessing the progression up close. Means a lot to me.
Lovely, Linda–such a tribute to your healing relationship. And important education for those of us who have never encountered DM. Thank you!
Thank you, Susan,
I appreciate your taking the time out of your busy schedule to read this post and respond. I neurologist just asked me if I have a support system. I was happy to give her a resounding, “Yes!” Thank you for being part of it.
Linda your dedication to development and your courage to share your past inadequacies publicly is true inspiration. I can understand why your daughter is heroic! I believe all of our relationships have to be in a continuous state of healing:) Best of luck to both of you as to travel this latest journey.
Thank you, Diana, most of all for being a sister on the journey. Your support means a lot to me.
Linda – what great, great love.
Yes, Jeannie,
That’s what this whole experience has taught me. What really matters is love…not all the other stuff that seemed so important for so many years.
Such a beautiful post, Linda. You teach so much by example and you speak to our hearts, each and every one of us, who feels guilt about what we did not know in how to nurture our children as we’d hoped to.
If this is the kind of writing you do on a sleepless night, I offer this advice: Write in the early hours of the morning, offered after reading this redemptive piece.
I am holding you and your daughter in my heart until I hear tomorrow how the surgery went.
Peace, my friend!
Mary Jo, You are such a gift in my life. Thank you again and again for your support of my blog posts. I’ve never been a morning person but maybe I need to change my ways. I was up at 6:30 this morning and surprised I missed the sunrise.
Such very beautiful writing/expression of your soul! I couldn’t help but think of the long journey from March 1983 when we first met. So much has been learned and so much has yet to be learned, but I feel graced to sharing in your very honest sharin g of the healing with yo ur daughter and within yourself.
My prayers are for a successful surgery. Blessings to you both.
Oh, Penny, you were with me for so much of the story. You’ve seen me at my worst and been there when I started to get my head screwed on straight. What we’ve been through together. Your remarks mean so much to me. Thank you for your prayers and blessings. And back to you, my friend.
Linda,
I am thinking of you and praying that the surgery goes well. Such a beautiful, touching piece.
Love,
Jude
Thank you, Jude. As you probably know by now, the surgery went well despite complications. She had so many people praying for her, those doctors…it all went well. Glad you found my piece touching. It just came pouring out of me.
Thanks for sharing Linda. The Lord is working through you to help others with their difficulties. Blessings , Pat
Thank you, Pat,
I do feel a calling to share about my journey hoping it will help others. It thrills me that you think that is happening. You walk very closely with the Lord, so you would be one to recognize this. Means a lot to me.