As the mother of a 7 week old baby girl going into the Christmas season celebrating the birth of Christ, in church today I was reminded birth itself is a miracle. For a baby to be conceived and life to begin forming a separate life within a mother’s womb – where little fingers start to open and grip, where a heart begins to beat and personality begins to shape – the process of a new life joining our world is miraculous.
My daughter is no Jesus (though because of her age she will pose as him in this year’s children’s Christmas play), but she is a miracle. Now Jesus birth is more miraculous and indeed different than any other birth. Some births are perhaps more miraculous than others.
When my mother gave birth to me, her first born, I’m sure she considered me a miracle. When she gave birth to my brother, a boy who didn’t breath on his own, turned blue in his dad’s arms in the delivery room, “miracle” probably wasn’t her first thought. He needed open heart surgery. He had machines constantly connected to him to stay alive. He had an IV in his head bigger than his foot.
A boy born with a genetic disease that compromises his life span and threatened his existance every day could be seen as a curse. Jesus, born to die on a cross and suffer innocently could be considered tragic fate. But birth is not a curse and to be given life is not a tragedy. God doesn’t work that way.
Meeting Dustin in the Hospital in protective garb
Doctors did not think my infant brother would ever leave the hospital. They said he would live at most three years. It was a “medical miracle” for him to still be alive, but they said his body wasn’t made to sustain life long. But he lived…
Dustin at age 3
Then they said seven years and he grew strong enough to not need a feeding tube. He didn’t need oxygen during the day. The doctors changed their prediction to 10 years. Dustin got a wheel chair he could maneuver himself. He began to learn sign language. He got to meet Mickey, Pooh Bear and Barney on the trip of a life time thanks to the Make-A-Wish Foundation.
Then they said “Well, maybe he has a few more years. He’s gaining strength all the time now. He has defined the odds and rewrote what we thought we knew about myotonic dystrophy.”
He lived to be 13. That was a miracle.
Or maybe a series of miracles, because in that time he survived, without being able to speak a word, he transformed lives around me. He taught us to value life in the moment, to treasure the breaths we are given, to count life itself among our greatest blessings. He smiled and everyone around him did too. He giggled at the ceiling and ladies like my grandma said “there’s an angel in the room.” And there was…
My brother wasn’t meant long for this world. He was born to die young. He inherited faulty genetics that manifested with more mutation in him than his mother. His rare disease contained so many protein triplets on the same chromosome that in 1989, doctors weren’t sure anyone like him had every survived to leave the hospital before. His birth could have been considered tragic, a misfortune. His short life could be looked at as cursed by a weak chromosome doing something it wasn’t supposed to. But maybe it was doing what it was supposed to. He was a blessing.
For many years as a child I was baffled by how people wanted to eradicate myotonic muscular dystrophy, to let it not appear in anymore babies. I get that feeling now that the disease has taken my mother, but I use to question why people would take way God’s ability to bring another person with traits like my brother into the world.
It’s sad to know a child is born with the fate to die young, and certainly some die too young. I’m grateful to have been blessed with non-affected genetics and two healthy children. I know I can’t fathom the full complexity of my mother’s emotions. But birth is a blessing and I know my mother considered Dustin to be her angel and was very grateful to be gifted with the time she had him.
Not every life is meant to be normal, or healthy, or long. “Why Me?” has to be a pretty common question in families with muscular dystrophy. And it’s a fair question. It isn’t an easy disease to bear. But the lives – the lives of those who carry the disease are a blessing to the rest of us.
If you or a family member are affected by muscular dystrophy, I’m glad you’re here. I’m grateful for your existance, and I pray to God tonight for your family and for a cure.
In the season of celebrating a miraculous birth, I celebrate the miraculous lives of those who battle muscular dystrophy. You are valued and good. Especially if you are a parent who has brought a child into the world affected by muscular dystrophy, bless you for bearing the burden and joys of care so that the world can be graced with your child. Some will see God in meeting your child.
You are a blessing!