If you haven’t read it yet, reading part 1 first is suggested: https://darcyleechblog.wordpress.com/2016/01/02/what-a-mother-thinks-before-birth-part-1/
An expecting mother wants the best for her child. A common prayer is probably “God, just let him be born healthy!” I’ve been fortunate when I prayed that. I’ve been blessed with two healthy children on a normal developmental timeline. There are those whose prayer for a healthy child received an unexpected response though…
I have a friend who Facebook liked the note in part 1 four years ago. She was pregnant with her first at the same time as me. Both of us and both our husbands had gone to the same small liberal arts college in Lindsborg, Kansas – Bethany College. The four of us were well educated, healthy and happy, ended up in the same town after graduating and did a couples’ Bible Study together.
Our birth experiences were different though. The outcome of each pregnancy was a baby boy, but the immediate outlook of each boy was different. Her son was born with complications in internal organs – life threatening complications which aren’t easily fixed. Our boys have played together, and we have prayed together, but our birth experiences were different.
I had my second child, a healthy baby girl, 10 weeks ago. This delivery was a little harder than my first, and I cried during delivery for fear of a C-section. I didn’t have one. I’m pretty spoiled as far as children go. I’ve had two, both healthy, and me healthy with no surgeries with either child. I guess I’m in the majority of the population there.
My mother’s second child was my brother, and she didn’t even get to see him before he was life flighted to another state. (She was unconscious when he was taken from the room.) He spent most of his first three years in the hospital. He had open heart surgery, a feeding tube – when she met him he had a 4 inch IV sticking out of his head.
In a way, I want to say I was luckier than my mother, but I’m not sure that is true. Dustin was born with complications – in fact he was born with an incurable disease that would shorten his lifespan dramatically. I’d lean on the cliche “what doesn’t kill us makes us stronger”, but well, that disease did kill him, and my mother. In many ways I was luckier than her.
When I was a girl, I had dolls, and when I would pretend, I would choose for these babies to be like my brother. I was genetically tested before I got married to see if I carried the disease, and I kid you not, there was a hidden part of me that wished I did. That thought is crazy now. I don’t wish that, I don’t wish it on anyone. But there is something beautiful in what happened to her.
My mother, who died of weakening muscles, was the strongest woman I will ever know. She was resilient, she was a fighter, she was made by events that threatened to break her. My brother, bless his heart because life couldn’t have been easy on him, made me, my dad and my mom better people. He made a lot of people better people… He was such a blessing to have around.
He lived a short life, and that was sad, but he lived a beautiful and full life with a unique charm and perspective that couldn’t be found anywhere else. Part of my wishes I still had a brother around, but I would never want to change who he was or how he was born. Of course, I didn’t feel his pain or experience his fears; I’m sure I idealize the whole situation from my healthy, but sometimes life’s challenges are our greatest gifts. Sometimes, what seems like a weakness is our greatest strength.
Mothers want the best for their children in their womb, but what’s best can sometimes surprise us. My mother wouldn’t have traded my brother for anything. She would have loved to take away his pain, or grant him the ability to walk, but their love was strong – unbreakable. What we expect and what we get are often different, sometimes drastically so. Sometimes, devastatingly so… but sometimes in the paradox of life, the devastating is the beautiful.
I’m grateful to have the two children I do, but I don’t consider my mother unlucky in having my brother. I don’t consider it tragic that I had a brother born with a terminal disease. It was painful for my mother to carry her disease. I’m sure she wished she didn’t have the disease. I’m sure she wished she didn’t pass it on.
My father is unaffected too, and I know he told me once that my son was “his hero” because my son allowed him to experience raising a healthy boy and playing normal games with a toddler boy. I’m sure it’s a little selfish from our healthy sides, but neither me nor my father would change that Dustin was born the way he was, even if we could.
It’s such a hard feeling to put into to words – I wish there was a cure, I wish my mother didn’t have it, but I wouldn’t want my brother not to be the way he was.
The way a birth goes is probably often not like the mother and family expected. I’m not saying that is not tragic – sometimes it is. I’m not saying we have to be grateful – it is okay to feel cheated, unlucky or even cursed. But what I am saying is that a family’s love will make the best of it. A mother’s love can wrap around any child.
Disease isn’t desirable, pain isn’t something to be wished for, but love, love is greater than any of the undesirables. Love can make us look back fondly on adversity, be grateful for the things that don’t seem great, and to cherish what we are given.
Part of me feels I don’t have the right to write on a topic like this because I have two healthy children, and I know I can’t understand all of what my mother must have felt, but she carried a love of unconditional resilience, she adapted to life’s stresses and marched triumphantly to be a woman of strength because necessity made her so. Some of the strongest people I know are in families that combat muscle weakness.
I guess I’ll say it this way – I want a cure, and I’ll raise money for research, but I would understand if anyone didn’t want it, or if they were okay having a child who might carry the disease. They are beautiful just the way they are. A child is loved just the way they are. Life doesn’t always meet expectations, but when resilience meets the obstacles in life, perhaps that is where the best of what it is to be human is revealed.
Our friends who went to college with us and had a child around the same time – I admire them. They are strong, loving people who are making a positive impact in the lives of many through the visible love of their children. Some of God’s best people are the ones He offers the biggest challenges to.
God bless those who hope. God bless those who suffer. But know that I wouldn’t want to change the way anyone was born or the way anyone is unless they choose that change for themselves. You’re loved just the way you are, no matter how that birth experience went for you or your mother.