Co-Blog – The following is a co-blog put together by myself and Ivy Scherbarth, a mother from CO and PPMD’s FACES Coordinator for CO/WY. This is a new project we have started where we will both write on similar topics from two different perspectives, but living in the same world of Duchenne.
By, Ivy Scherbarth
On Mother's Day this year a miracle occurred at my house. A beautiful, magical, sweet, healthy baby boy was born. He went home with his parents this afternoon.
Our neighboring states have laws that make a professional midwife with extensive training and an impeccable record, a criminal for attending the normal birth of a child outside of a hospital. We were honored when our beloved midwife, to whom we still bring presents on our children's birthdays, asked if a nice couple from the state next door could come stay in our detached office/guest room for their birth. They arrived, complete strangers, on Saturday afternoon. Their son arrived, safe and healthy, on Sunday morning. To my complete joy, they let me hold him while we got to know each other a bit on Monday afternoon.
I am telling you now that there is nothing in this world more important, nothing, than children and babies. I love them all.
A perfect, beautiful, healthy baby boy came to my house and left it. A perfect, beautiful still-my-baby boy with a hideous, incurable disease stayed. A beautiful, perfect, not-a-baby girl held and kissed that healthy baby and declared that she is planning to have seven of her own … not understanding that each of those hypothetical future children has a 50% chance of a great big hole in their dystrophin gene.
How can I convey my grief? How can I express the ache, the longing for the children I will never hold, never nurse, never love? How can I let go of the dreams of the life I don't get to live?
How can I live with myself if I don't do everything I can to stop this horrible thing called Duchenne? But more importantly, and deeper and more awful is this: What can I do about the fact that I truly believe that a cure will come too late for my son? I have a clear duty to fight. It is imperative that I work hard to help support the research that will someday change the face of this disease. That isn't my question. My question is about living with death every day. My question is about coping with the fact that my son is dying, right now, faster and more horribly than the rest of us. My son can't keep up. He is half a head shorter than kids a year younger. He is so proud of finally, after much hard work and delay, achieving skills that he is going to lose before he's old enough to drive a car, read Shakespeare, kiss a girl. How can I live with that?
How can I live with the fact that, essentially, at the sub-cellular level, it is my fault that he has Duchenne?
These are rhetorical questions, of course. I can live with it. I am living with it. See, I just breathed, my heart just beat, my cells just chose the dystrophin gene without the hole in it.
My life has changed completely. My dreams, my goals, my daily living is all shaped by Duchenne now; twisted out of all recognition from who I was four years ago when my seemingly healthy baby boy was born. There is no question of what to do, really, and I am a doer. I go to therapy. I schedule doctor's appointments. I work for PPMD. I talk about Duchenne. I wake up every morning and feel grateful for my life, for my children, for my one and only chance at loving the whole wide world. I laugh a lot. I search for joy. And when my daughter dances in her recital and when my son says "I'm a big boy! I can do it myself," and when I hold a sweet, precious, innocent life in my hands, I cry.
Ivy Scherbarth is a Colorado/Wyoming FACES Coordinator for PPMD. Follow Ivy at her blog, My Son, My Rain: A personal, biased account of one family living with Duchenne Muscular Dystrophy.
Our children, our life
By Pat Furlong
I always wanted to be a mom, though early on, I had no real understanding of the word. I just knew that I wanted children in my life, wanted to watch them grow, guide them to the best of my ability, learn from them, love them. Unconditionally. I knew I would do anything and everything to help them. I would die for them. And holding my first baby and my second, third, and fourth, those feelings were reinforced. Still today, I remember the first time I felt a kick, sort of a knock at the door of my belly, that said ‘hello.’ And the first time I held each one of them, I knew I held perfection. Heaven. Love.
I carried them around, ‘too much’ my mother would say. You are spoiling them. But to be honest, I was spoiling me. I loved touching their soft skin, watching them change every second, and loved every time they wrapped a chubby hand around my finger.
Just before Mother’s Day, Ivy gave her home and her heart to another mom. She watched the miracle of that birth, wished for a safe delivery and perfect health for this new little one. And in the watching, her own heart was breaking for her own son. Bittersweet.
The diagnosis of Duchenne changes every experience and ripples through our lives forever. It changes us, perhaps softens us, opens our heart to others, to small gifts, to beauty, to joy.
It is mothers, Steel Magnolias, tender and soft on the outside, but fierce, dedicated, and tough fighters. And while our collective heart breaks with Duchenne, we are confident that we will have treatments for Rain and for so many others.
Pat Furlong is the Founder and President of Parent Project Muscular Dystrophy. Follow Pat at her blog.