Parenting is not an easy job. It carries a tremendous amount of pressure and responsibility. Every parent will face challenges in some way or another. But as CF parents, we face a unique set of challenges that are complicated, at times overwhelming, and constantly changing.
I am the proud parent of two beautiful kids. Having more than one child always changes the dynamic in a family, and adds more to the list of worries. Am I giving them both equal time? Am I fostering a good relationship between them? Am I making them both feel as loved as possible? Along with these initial worries came quite a few more when Anna was diagnosed with CF through her newborn screening.
The phone call from our pediatrician was the first time we heard of cystic fibrosis. We were holding our one week old baby girl and trying to absorb what we were being told. Jack was two at the time, and we quickly had him sweat-tested as well; his came back negative.
I look back on that time with some pride, but also a lot of sadness.
The pride is in how we handled it. I went into full-on problem solving mom-mode. I didn't take any time to emotionally process her diagnosis. My main focus became getting her nutrition on track. I got her enzymes as soon as possible, did as much research as I could and nursed her on demand. I became totally zeroed in on getting her to grow.
I am proud of how my instinct to care for my child overcame my instinct to fall apart.
But I am sad because I can say with certainty that I missed a lot of both kids' lives that summer in a flurry of new information, worry and determination. This was the beginning of parenting two kids, one with CF and one without.
We've had talks about cystic fibrosis. Both of them know what it is and what it means to have it. They understand that it's serious, and they both take Anna's care seriously. However, while they both know that Anna is unique and needs more medical attention, I also try to make sure that Jack knows he is just as important. I caught myself once extremely stressed about how sick Anna was with a cold and cough. Jack had the same cold and cough, and when my husband said something to me about it I said, “He'll be fine!'” It was true, he would be fine, and a cough and cold with Anna is a much more serious situation. But I knew I could have handled it better. I learned that even though I know that he'll be fine, I need to treat both situations with the same care and love.
Jack is the sweetest and most loving big brother.
For Anna, that is probably the best quality. But I worry that it's too hard for him to worry about her as much as he does. Jack is deeply empathetic by nature, so I didn't notice how much this has affected him until recently. He is always looking out for her, like I'm sure all big brothers do, but his is an added layer of responsibility.
I hear him reminding her to wash her hands, explaining to her about germs, encouraging her to drink water on the beach or at the pool. Just the other day they were playing out back and I heard him yell for me. I ran out thinking something terrible had happened, but he just had his hands out pushing Anna back, and said, “Mom, you have to dump the fire pit because of germs. I'm keeping Anna back.” He was concerned because it had rained and there was a pool of stagnant water in the pit, and he knew that was a dangerous thing for Anna to touch. I was so impressed with him and incredibly proud, but heartbroken at the same time.
I wonder all the time if this is just who he is, or if it is deepened by her cystic fibrosis.
My challenge right now as a parent is to try to understand Jack and let him be the empathetic and loving person he is, while at the same time trying to reassure him and reduce his worry.
A positive is that both of my children have learned compassion at an early age. They understand differences by understanding each other. Jack doesn't have cystic fibrosis and Anna does; they were born that way. Therefore, anyone can be born any sort of way. They understand that everyone is different, and it just makes you unique — and being unique is awesome.