Why We Didn't Talk About It
Why We Didn't Talk About It
Pregnancy was a chapter in our lives we hoped and prayed for, looked forward to and dreamt about for years.
After we found out we were both carriers for Cystic Fibrosis when I was 10 weeks pregnant, every happy moment felt shadowed for a while. With each kick from Caroline I would feel a sense of joy and fear. Joy that I was pregnant and my baby would soon be in my arms and fear of loving that kick too much, fear of having this life within me taken away.
After receiving Ty's carrier results I remember my dad saying,"I hate that this happened to you now....This should be the happiest time in your lives and I almost wish they didn't have a test like this."
I knew exactly what he meant.
I was thankful for the test, for the awareness it brought us, for the time it gave us to learn more about Cystic Fibrosis but I also wished that we could have been blissfully unaware of being carriers during pregnancy.
During my first trimester, I made the decision to see a counselor throughout the remainder of my pregnancy. She helped me process the shock of finding out we were Cystic Fibrosis carriers and the possibility of Caroline having CF.
At one of my sessions, I was completely overwhelmed with fear.
"What if I can't help her? What if she passes away as a baby? As a teenager? Will Ty ever walk her down the aisle? Will I have to plan her funeral? Will I ever be pregnant again? What would people say if I was?"
My counselor responded to my fears by saying, "Breathe. Now, place your hand on your belly. Your baby is right there. Feel her move inside of you. She is right there. You are pregnant right now."
Suddenly, it was like I remembered I was pregnant. We were expecting a baby! Our first child was growing inside of me. Wow.
I had been so consumed by CF that I was missing out on the joy available to me in the present moment. I was living in a world of "what ifs" instead of "what is" and my "what is" was pretty amazing.
For many people in our lives, this blog is the first time they are hearing our story of finding out Caroline has Cystic Fibrosis. Throughout pregnancy, we didn't talk about it to anyone outside of immediate family and a few of our mentors. At first, we didn't talk about it because it was too difficult. Also, we wanted to control our exposure to CF as much as possible until we felt we understood the disease a bit more. If we shared what we were going through it would make us vulnerable to comments about like, "Oh, my aunt had that." Past tense, "had." We just weren't ready for those moments yet.
But eventually, our reasons for not talking about it changed. We realized the people around us were helping us to heal and stay present by being unaware of what we were going through. It sounds odd, but it's true. Because no one really knew of our CF journey, people asked me how I was sleeping, if we had thought of names, did we think we were having a boy or a girl, what color is her nursery...etc. It was incredibly healing to be asked those questions. Those questions kept me focused on the here and now, constantly reminding me this moment is good.
For us, not talking openly about CF for a while was the most healing path...but for others the most healing thing to do might be to talk about it right away. Everyone is different, every journey is different.
After Caroline was diagnosed, feeling ready to talk about CF still took time. We sat in solitude with her diagnosis for about two weeks before we felt ready to share openly. Once we felt it was time to share our journey and ask for support we were overwhelmed by the response. The response to this blog, for one, has overwhelmed us with a sense of hope, support, compassion and love.
Because of that we are going to continue sharing our journey with you and with others. Through sharing our story we are raising awareness of Cystic Fibrosis, finding community and showing others on a similar path they are not alone.
Please continue to care about Cystic Fibrosis! May is CF Awareness Month but my hope is that by reading our story you will feel like you personally know someone who is living with this disease and caring for someone with this disease. The more awareness we bring, the more understanding the world will be of Caroline's condition and the more motivated others will be to help find a cure.
Pregnancy was a chapter in our lives we hoped and prayed for, looked forward to and dreamt about for years.
After we found out we were both carriers for Cystic Fibrosis when I was 10 weeks pregnant, every happy moment felt shadowed for a while. With each kick from Caroline I would feel a sense of joy and fear. Joy that I was pregnant and my baby would soon be in my arms and fear of loving that kick too much, fear of having this life within me taken away.
After receiving Ty's carrier results I remember my dad saying,"I hate that this happened to you now....This should be the happiest time in your lives and I almost wish they didn't have a test like this."
I was thankful for the test, for the awareness it brought us, for the time it gave us to learn more about Cystic Fibrosis but I also wished that we could have been blissfully unaware of being carriers during pregnancy.
During my first trimester, I made the decision to see a counselor throughout the remainder of my pregnancy. She helped me process the shock of finding out we were Cystic Fibrosis carriers and the possibility of Caroline having CF.
At one of my sessions, I was completely overwhelmed with fear.
"What if I can't help her? What if she passes away as a baby? As a teenager? Will Ty ever walk her down the aisle? Will I have to plan her funeral? Will I ever be pregnant again? What would people say if I was?"
My counselor responded to my fears by saying, "Breathe. Now, place your hand on your belly. Your baby is right there. Feel her move inside of you. She is right there. You are pregnant right now."
Suddenly, it was like I remembered I was pregnant. We were expecting a baby! Our first child was growing inside of me. Wow.
I had been so consumed by CF that I was missing out on the joy available to me in the present moment. I was living in a world of "what ifs" instead of "what is" and my "what is" was pretty amazing.
For many people in our lives, this blog is the first time they are hearing our story of finding out Caroline has Cystic Fibrosis. Throughout pregnancy, we didn't talk about it to anyone outside of immediate family and a few of our mentors. At first, we didn't talk about it because it was too difficult. Also, we wanted to control our exposure to CF as much as possible until we felt we understood the disease a bit more. If we shared what we were going through it would make us vulnerable to comments about like, "Oh, my aunt had that." Past tense, "had." We just weren't ready for those moments yet.
But eventually, our reasons for not talking about it changed. We realized the people around us were helping us to heal and stay present by being unaware of what we were going through. It sounds odd, but it's true. Because no one really knew of our CF journey, people asked me how I was sleeping, if we had thought of names, did we think we were having a boy or a girl, what color is her nursery...etc. It was incredibly healing to be asked those questions. Those questions kept me focused on the here and now, constantly reminding me this moment is good.
For us, not talking openly about CF for a while was the most healing path...but for others the most healing thing to do might be to talk about it right away. Everyone is different, every journey is different.
After Caroline was diagnosed, feeling ready to talk about CF still took time. We sat in solitude with her diagnosis for about two weeks before we felt ready to share openly. Once we felt it was time to share our journey and ask for support we were overwhelmed by the response. The response to this blog, for one, has overwhelmed us with a sense of hope, support, compassion and love.
Because of that we are going to continue sharing our journey with you and with others. Through sharing our story we are raising awareness of Cystic Fibrosis, finding community and showing others on a similar path they are not alone.
Please continue to care about Cystic Fibrosis! May is CF Awareness Month but my hope is that by reading our story you will feel like you personally know someone who is living with this disease and caring for someone with this disease. The more awareness we bring, the more understanding the world will be of Caroline's condition and the more motivated others will be to help find a cure.
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