In honor of Wishbone Day, here’s Sami story….
The morning of September 24, 2003 was so full of opposing emotions that my heart still races and my chest feels like it’s full of lead almost five years later. I was sending my daughter to death, on purpose.
It started in May with a routine ultrasound. I was so excited, since I didn’t have an ultrasound with my son. It was like being pregnant for the first time all over again. Afterwards, the nurse was quiet and left the room. A long while passed before a doctor came in. As he viewed the screen in the darken room, moving the wand over my belly, he too was quiet and I knew something was wrong.
“Her arms and legs are too short, and they are very bowed. You’ll need to see a specialist.”
What? But I’m a healthy mom! Maybe it’s just dwarfism. Okay, we can adapt to that.
But the specialist didn’t have better news. I had to undergo a very painful amino to run the 5 tests our insurance would pay for. We discovered there are 200 different types of dwarfism, and we weren’t lucky enough to get a “run of the mill” variety. The high tech ultrasound machines they had showed much more detail than the clinic’s that was used previously…more details like fractures and deformities.
“She either has campomelia or osteogenesis imperfecta type II. Either way, she will only live 24 hours.”
24 hours. One whole day. Will she suffer those 24 hours? Do I end the pregnancy now so she won’t suffer? Why do I have to make that decision? How horrible for a mother to decide that! Which is better – to die now or to keep breaking and die later? Am I being selfish by procrastinating the decision?
At 7 months pregnant we made her funeral plans. A friend of ours, who operates a funeral home, took care of all the details. All the while I could feel her kicking my belly in protest. I cried for hours in my three year old son’s room that night, trying to hold on to his precious life while mourning the loss of the other still inside me.
Do I finish the nursery? Can I stand to walk by it everyday if she’s not there? Will that torture me everyday? Am I giving up on her if I don’t finish it? Each time I picked up my son, or bumped my belly on a chair or the steering wheel, she would break, and I would see it on the ultrasound that week.
D-Day. Delivery Day. The last day of my old life. The c-section was scheduled for 9am on the 24th of September. How could I willingly take her from her safe haven inside me and watch her die? I could feel her alive and moving and it would soon stop. Why couldn’t I have just one more day with her? Because if I went into labor I’d kill her right away – contractions puncturing lungs with cracked ribs, brain damage with a cracked skull – and that would lose the last bit of hope I was holding on to. It was so hard to be the rock for everyone else while I carried the emotional and physical, but delicate, burden each day. I knew that if I crumbled, the rest of my family would as well. And I had a small fairy of hope that she would live. I was practical enough to brace myself for the worse, but faithful enough to know that hope wasn’t completely lost. I also had a son to care for, so I wasn’t allowed to rest, I had to push forward.
By 9:30am she was out and the count down was on. I still had a lot of sewing up to do, as they had to cut me from top to bottom to get her out as best as possible, and I hated every minute of being on the table when my daughter’s minutes were passing in the NICU. Didn’t they understand we only had 24 hours together?
As soon as they would allow me to fall into a wheelchair, I was in the NICU with her. She was hooked up to every imaginable device and I didn’t think there was any more room on her body to attach anything else to. The nurses let me hold her on a pillow until I started to get too pale. I had to leave. I had to leave my baby alone. What if she died while I slept? What kind of a mother leaves her child for sleep? But I had another child to think about as well. I wouldn’t let her be alone, so I told every member of my family to rotate turns staying with her. I was in the NICU as much as I was allowed. Back and forth, back and forth. Which child do I choose?
And then, without any fan fare, the 24 hour mark passed. We watched the clock and we made it! Could life be a second chance? Or would it come crashing down now? The weight started to lift from my chest and I could breathe again little by little.
48 hours, 72 hours. Could we make it a week?
She was finally transferred to the Children’s Mercy Hospital so a plan could be made. I could go home. My husband and I traded off days and nights spent at the hospital and home with our son for a week. My incision wasn’t healing, probably because I was standing next to her crib, driving to and from home, and tending to my son, but I didn’t care. We passed the day of emotional hell and we were all alive! Our whole future lay ahead of us with prospects. We were sent home with a “good luck” and I know the luck has stuck with us.
The saying “life is too short” has been ingrained into my heart since that day and I now live each day to the fullest; no matter how tired I am. In no way do I pamper either of my children (we later discovered that our son has Aspergers, a high functioning autism). I believe in Dorothy Canfield Fisher’s thought that “a mother is not a person to lean on, but a person to make leaning unnecessary”. Disabilities aside, I require politeness and clean rooms just like all other moms. Everyday brings a new challenge (could be a bone break, or a field trip at school, or hurt feelings from another child who doesn’t understand autism or brittle bones) so our family has to stretch ourselves, learn on the fly, and be five times more prepared for the unknown. Some people are overly generous, some ignorant, and some just plain stupid – c’est la vie!
From that first 24 hours of hell, Sami is now in Kindergarten, taking the school district by storm, and opening all new buckets of wrenches. She’s been in ads for the Children’s Hospital of Omaha (the little ballerina on the huge billboard) and was given the wonderful gift of a Disney vacation by the Dream Factory of Kansas City.
For mother’s day I have to reflect that I’m a different kind of Mom. I’ve learned to take care of myself first or I’m a horrible mother. Being a martyr didn’t get me anywhere but tired, depressed and resentful. The fear of a small bump doing major damage to Samantha is always there and some days I still cry in the closet because life is overwhelming. Most days, though, I see my kids doing extraordinary things (Sami crawling up on the tub ledge or Carter remembering how to interact with a friend that isn’t off-putting) and smile with gratitude for each emotion, good and bad, I was allowed to experience on September 24, 2003, and every day since. I am the Diamond, strong and beautiful, because of the pressure I’ve been put under.