*if you’re new here, or have just wandered over, this post will make more sense if you start reading from Timeline Part 1.
(continued)
7
The wedding date is hurriedly changed. I will walk down the aisle 4 months pregnant. We don’t know yet if S is a carrier of the CF gene, but I know with every bone and cell in my body that carrying this baby, bringing this baby into the world, and being this baby’s mother is my destiny. I’ve never felt this strength of knowing before in my life, never felt so sure of anything in my entire life. I tell S that I understand if he’s not ready, or if he wants to walk away from everything if it turns out that he is a carrier of the CF gene (and that there might be a chance our baby will be born with CF). He stays.
We later find out that S is not a carrier. We get married in December, and our wedding is a joyful, beautiful celebration of love, family, and friends but I can barely stand or dance because I’m so tired. So I spend much of the night sitting with S, a stupid blissful grin plastered on my face all night, a hand on my belly.
8
I see a high risk ob-gyn recommended to me by my CF doctor. It takes me about 6 minutes to feel that I’m in the best hands I could possibly be in. I need to test my blood sugar about 12 times a day, and keep in constant contact with him to make adjustments to my insulin regimen. When he first tells me about the discipline and constant monitoring that will be required of me, I feel shocked and unsure. I am accustomed to arguing with my CF doctors about compliance, trying to get away with doing as little possible, and I wonder aloud if I’ll be able to do all that is required. Dr. N gives me a stern look that says everything I need to know. My health, or lack of it, already begins to have consequences that go beyond me, and in that moment I go from kid to adult. In that single moment I become a mother to my child.
9
My entire body is covered in a rash, bumps, hives, and sores. I am itchy, but not the itchiness you feel from a mosquito bite; it’s more like a poison coursing through my blood. Not a single doctor is able to tell me what exactly is going on, only that it is somehow related to the pregnancy and probably related to my CF liver issues. I can’t sit still. I can’t get comfortable. I cry when I have to spend more than half an hour in the car. I scratch until I bleed. I don’t sleep because I spend all night scratching my skin off. There is no relief. I am not allowed to take medicine, and I don’t want to add any more medicines to my regimen anyway. I have never in my life known such extreme discomfort, and I will remember, and fear, the sensation forever. My skin will never completely heal from this.
10
When I was about ten years old, my doctor at that time told my parents that they would never be grandparents. I only learned about this conversation very recently. My mother tells me she silently wept.
This was not the first time they had been stabbed by the arbitrary words and numbers tossed like darts by over-confident doctors. Your child will not live past 10. Your child will not live to go to college. Your child will not have a child.
You have no way of knowing this, was the simple and angry reply my father gave.
11
I sing to my baby in my tummy. I tell her (it’s a girl!) that I love her so much. I sing “You Are my Sunshine” and any song by Diana Ross. Can she feel how loved she already is? Can she feel how wanted she is?
(to be continued)
