CF has added a different aspect to our marriage and childrearing/parenthood. It does make you see who you truly are; good and bad. The day I got the news Maggie had CF we had already been on a rollercoaster of emotions(especially me) being pregnant with Maggie at the time. I got a call from the OB nurse, saying yes your daughter has both mutations for CF, I'm sorry. I just started crying and hung up the phone, my husband wasn't even home, he'ld gone for a run. Walked in the door, all sweaty while I'm crying, pregnant at our kitchen table. He didn't really need to ask; I said she has CF, something like "what are we going to do?" He looked at me and said, "it'll be ok. THink of all the joy and happiness Sammy(our 4 year old at the time) has brought into our life. SHe will bring joy and happiness to our life, too. Her experience will just be a little different" I just remember feeling incredulous, like this is the man I married what an amazing thought he had.
It has not been all positive, though. We stress about money. My career went on hold. My husband was in graduate school at the time, almost done with his Phd, in molecular biology. I had been supporting us working as a nurse. I kept thinking, this is what we get; after all the hard work and schooling to do good on this earth and we have a child who will be so sick. Why? I couldn't see the good in any of it. Of course, there has been good. We relocated. My husband finally, finished his degree, post-doc, and got a job ironically learning genetics and developmental biology. Which has put him in a position to do research in birth defects and ultimately even got a grant from the CFF.
We do NOT get hardly any time to be with each other, or take vacations, just the two of us. I see $ in co-pays, like that new pair of shoes is 3 co-pays. Maggie sees time in neb treatments and VESTs. Like we will be leaving in one neb and a VEST.
I get irritated easily, turned into a control freak. But like others said, we are a team. He is my laid back, partner. I call him my valium. When my husband is around I relax, just by having him in the room.
Interesting topic!
It has not been all positive, though. We stress about money. My career went on hold. My husband was in graduate school at the time, almost done with his Phd, in molecular biology. I had been supporting us working as a nurse. I kept thinking, this is what we get; after all the hard work and schooling to do good on this earth and we have a child who will be so sick. Why? I couldn't see the good in any of it. Of course, there has been good. We relocated. My husband finally, finished his degree, post-doc, and got a job ironically learning genetics and developmental biology. Which has put him in a position to do research in birth defects and ultimately even got a grant from the CFF.
We do NOT get hardly any time to be with each other, or take vacations, just the two of us. I see $ in co-pays, like that new pair of shoes is 3 co-pays. Maggie sees time in neb treatments and VESTs. Like we will be leaving in one neb and a VEST.
I get irritated easily, turned into a control freak. But like others said, we are a team. He is my laid back, partner. I call him my valium. When my husband is around I relax, just by having him in the room.
Interesting topic!