This is what it looks like to have CF. Yes, there are struggles, hospitalizations, illnesses and surgeries. There is also a lot of hope for a long, bright future!
Connor’s Crusaders is our Great Strides Walk team.
Last night while driving to Ann Arbor, Connor asked me if it is easier taking care of him now than when he was a baby. (This question along with several others about whether or not his children will have CF, etc). Of course I said ‘Yes’ it is easier now but in reality, I am not really sure.
Yes, as an infant, it was a lot more work, documentation, and follow-up visits as he was misdiagnosed for the first 3 months of his life, creating a critical medical situation by the time he finally was admitted to the hospital. He only weighed 8 pounds at 3 months despite nursing him around the clock and frequent ‘weight checks’ at the pediatrician. Fortunately, Connor thrived after starting on pancreatic enzymes and breathing treatments. He has only had 1 other hospitalization since he was 3 months old and his weight and lung function are both good.
Why would I think parenting is more difficult as he gets older? Several reasons…his questions get more challenging and while we do not want to shield him from the realities of the disease, we also do not want him to be afraid of what might happen and limit ‘living his life’.
I think the biggest challenge I face is parenting Connor with 2 healthy siblings. Connor is 2nd in birth order and I think in some respects, CF has taken a little away from our ‘first born’ who, according to birth order, is supposed to garner a significant amount of attention in this role. Connor has ‘stolen’ some of this attention and I think it has created a greater than normal amount of sibling rivalry.
This is an area I think needs more attention in terms of family support. CF does impact other family members and rarely if ever are programs offered targeting siblings of CF kids. I would welcome more opportunities to include siblings in our care and understanding as parenting a child with CF.
Our family mantra has been to always focus on the good things that have happened as a result of CF; we recognized this very important lesson when visiting Dr. Warren Warwick in Minneapolis. We learned very quickly how fortunate we are to have the extensive support system to help us in our crusade to find a cure for CF. We continually reinforce the positive aspects of having CF like receiving Target gift cards, meeting the Detroit Tigers last summer, MDPCI summer adventure packets, and more.
– Connor’s Mom
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