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Grammy of 11 month old with CF
My daughter Laura married in early 2019 and in November of that year she had a beautiful baby boy! Perfectly healthy. 15 months later Laura had a beautiful baby girl.. I do believe that prayers were answered as I had prayed and prayed for a healthy baby and was overjoyed that not only did everything seem perfect, Laura got the girl she had always wanted. On day 5, the post natal screening came back positive for CF. I was stunned. I knew nothing at all about CF, what caused it, what it was, how it was treated Nothing at all. And I was scared as I floundered through the next couple months being angry with God. After that phase of grief, I settled in to learning more about the disease, with hopes of being able to help my daughter care for her daughter. Then this pandemic set in and Laura had to be more and more restrictive about visitors in fear of Adela getting sick. I understand and don’t blame her, it just has given me minimal time with my granddaughter.
I am a breast cancer survivor (13 yrs) and have been very active in a breast cancer support group, helping other women as they go thru treatment. I want to be involved in some similar way with CF and it’s supporting organizations. I have been in contact with the CF foundation but am looking for other ways to get tied in and more actively involved with CF. I am hoping that by joining this forum I can learn more and maybe find a way I can help
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3 Replies
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Hi Elizabeth, I recently found this website https://www.cfroundtable.com
Perhaps this, or one of the members of the board, could also help you to find a way in contributing and being involved.
Wish you and your family all the best,
Paul&Debbie
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Elizabeth, first of all, congrats on those grandbabies! I imagine this has been so much to process. I want to remind you that all your feelings about this are valid, but I also believe you have every reason to hope and expect for her to live a full, beautiful, love-filled life. So even in the hard times, I hope you can hold onto that hope.
As you mentioned, getting involved in the community can be so healing. With CF (due to the dangers of cross infection and especially during the pandemic) that community exists online. Over the years, I’ve found the online CF community to be a source of knowledge, empowerment, connection and beautiful friendships. I’m so glad you’ve decided to reach out! If you’re on Facebook or Instagram, you can find several individuals and organizations that discuss CF. (Though I would caution you to be wary of some of the Facebook groups; some of them are pretty rough. I have a couple suggestions for people/groups to follow if you’d like them, but no pressure.)
You said you’ve been in touch with the CF Foundation. If you haven’t made contact with your local chapter yet, they might be a good resource. I know that my local chapter is always looking for volunteers in some capacity. Another thought is, if it’s okay with your daughter and COVID restrictions allow, maybe you could ask to attend a CF clinic appointment at some point. When my partner and I started dating, I told him about CF and he did a lot of research on his own, but when he came to a clinic appointment with me, it took his understanding to another level and helped him feel involved and connected to my care.
Please know that the forum is always a place you can turn to with questions, concerns, or just to chat about life. We don’t take ourselves too seriously here but are also capable of having very meaningful (sometimes difficult) conversations. I wish you luck and so much love as you move forward with this.
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I just thought of something else — Great Strides! It is my favorite event of the year! For the last 12 years or so, my family has walked under the team name Lungs N’ Roses. We haven’t done it for the last two years because of the pandemic, but I am so hopeful that it will take place again this year.
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