By Jeanie Hanley, M.D.
It was an experience I had only imagined, but wondered whether my physical limitations from CF would allow me to be engaged in the reality of it.
I became a first-time grandma this summer and it was love at first sight. With lung and gut improvements on CFTR modulators for the past four years, the imagined became reality. My daughter gave birth to a healthy, bouncing baby girl, my sweet granddaughter, Amelia. Check one for living to capture this beautiful moment!
I had wondered what would she be like—who would she resemble physically and in disposition? What kind of grandma would I be? What did I want to be called? I’ve been concerned about physical limitations, such as lifting her or holding her for prolonged periods. Would this trigger the hemoptysis that creeps up whenever I lift too much or occurs for seemingly no reason at all?
Amelia is six weeks old now. I’ve settled on Grandma for now, although Nina (what I called my grandmother) is a close second. As for holding her, she’s barely 10 pounds and maybe the endorphins are helping—the ones triggered by staring at her perfect little face and those eyes so helpless and appealing—but my lungs are holding steady. As often as possible, I make use of plenty of pillows to help prop her (and my arms) up so I don’t strain my neck, back, chest, and arms. A nice side effect is building up the pecs and biceps!
The jury is still out regarding who she resembles most. For now, I feel so fortunate just to visit her daily and to watch her grow, becoming more aware of her environment, lifting her head, and starting to smile. She appears fascinated by songs, even my “singing” Thank Heaven for Little Girls which seems to pacify her (and it’s good at clearing my lungs). Learning little things about her is such a joy for me—her curiosity about her reflection in the mirror, her contentedness at making eye contact and conversation (one-way at this point), being soothed by laying on her back and observing this new world. Check two for being able to engage in her life!
Watching my daughter take the reins of motherhood so seamlessly is what I expected given she’s a NICU nurse; nevertheless, I’m still very proud of her since parenthood is very different than a 12-hour shift followed by uninterrupted rest. Even through Amelia’s worrisome jaundice, weight loss, and nursing difficulties, my daughter consulted others, sought help in any way she could and improvised solutions like an experienced mother. Check three for watching my daughter become a mother!
It was also heartwarming to be by her side and be asked for advice. Having raised three children and treated countless children as a pediatrician I had a lot of advice! For my daughter and son-in-law’s sakes, my approach has been to demonstrate whenever possible rather than talk up a storm of advice so as not to overwhelm them. Show them the way, don’t say the way!
What will the future hold as far as my health status, Amelia’s life, and how close will we be? After all, I’m not the only grandparent—she has three more. Do I have to share? There are too many questions that only time will answer, time I believe that I have now since CFTR modulators have improved my health considerably. All I can do is continue to keep my health a priority, do as much with her as I can within my health limitations, and most importantly, go with the flow and enjoy every day that I can spend with my granddaughter Amelia. Thank Heaven!
Jeanie Hanley is 59, a physician and has CF. She is a Director and the past President of USACFA. If it’s not clear from the blog, she is ecstatic about being a grandma. You can contact her at jhanley@usacfa.org to share your grandparenting experiences.