I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Friday, March 20, 2015

Library Breakthrough

You know how you can cut yourself and be bleeding but it doesn’t hurt until someone points the blood out to you and then all of a sudden it hurts really badly? Well that is how I felt when Maelee was a baby and we were learning about how to live with Cystic Fibrosis.

Someone we would meet that knew a little about CF, mainly keeping away from germ knowledge, would say something to me about what I was doing as a mother - or how I cleaned my house - or point out something about a place we had taken her and then suddenly something I wasn’t even worried about before was sounding off red alert sirens in my head.

Because of her time in the NICU the hospital we were in offered a service free of charge for NICU families. It entailed a nurse coming into your home to do well checks and developmental assessments on your NICU baby to make sure things were going well. This was offered not because we had CF, she wasn’t diagnosed until 6 weeks old, but because she had been in the NICU. It was a really incredible program and very assuring knowing that with all the new worries of having a new baby and the insecurities that come to all parents about their baby’s development, we had someone coming over every few weeks to let us know how she was doing.

When the nurse that was coming found out that Maelee had been diagnosed with CF she started to mention things she hadn’t before. Maelee was getting to be about 8 months old and super interested in board books. The nurse was over and started to talk about how the public library does parent & baby lap sit reads once a week. She was super excited telling me about it and then you saw her face change as she remembered that Maelee had CF. She stopped her cheerful story short about how much fun the library read alouds were and said, “I guess you wouldn’t want to take her there though with all those people and germs.”

So then goes my train of thought, “Crap, I didn’t realize that the library was a place we couldn’t go. My mom always took us to the library. I LOVED the library when I was a kid. But this nice lady with the amazing informative awesome check list on my baby’s development just said I wouldn’t want to take her there because of germs so she must be right.”

I mentally added the library to my mental list of dangerous germ places and scratched it out of any future ambitions.

But then when Maelee was 10 months old her throat swab came back with her first showing of pseudomonas and we started doing TOBI for the first time. I had to figure out how to make her hold still for 22-ish minutes with the SVN machine on her face in the morning and in the night for the 28 day antibiotic. I tried Sesame Street, toys, and then found Maelee’s magical hold still spell. Books.

I had a little collection of books that I had gotten before I had kids. I collected Bill Peet & Dr. Suess books for a while because I remember my mom reading those to me, and my major in college was elementary education so I was into children’s literature already. We read those A LOT. Frank and I both got to where we had our favorites to read and when we took turns giving her the TOBI treatments before bed we would line up the ones we wanted and knew how long it would take to get through them and the treatment. The books literally put her into this amazing happy trance and she would hold still and keep her mask on and breath in the medicine and the fight it was before we realized how much she liked to be read to was over.

One day later on when I was super pregnant with #2 Maelee and I started to get real stir crazy. We would go on lots of walks outside in our neighborhood but I was really afraid to go anyplace else. When we had both reached out breaking point of cabin fever I knew what I had to do. I searched through my purse for my old library card, googled where the closest one was, grabbed a big bag and we went.
We had such a good time picking out books and I was remembering how much fun I had with my family at the library when I was little and it was a magical 45 minutes of picking out books that we were both excited to read when we got home. We became expert at maxing out our library card. We made book nests. We read during breakfast, we read during lunch. It was her most requested activity.

Plus I realized that the potential of germs at the library and from the books was manageable – it was a huge breakthrough for me. I remained obnoxious about washing hands and still am today BUT my confidence in her and I as a team going places together during the day and surviving to tell the tale soared! Such a little thing we did, go to the library and check out books, but it really was a huge deal for me.

Maelee still lives for books. It remains to be the only time she holds still. She devours books. It’s her thing. She begs for library trips after school and then she reads them all up and begs to go back. She has some favorites she reads OVER and OVER (Freak the Mighty,etc) and gives Frank and I book recommendations all the time. She left one of her fairy books on Frank’s night stand recently and adamantly promised him he would NOT regret reading it.

Lesson learned, sirens do not go off when I think about taking the kids to the library anymore. Now its just a matter of not loosing the books instead of worrying about Cystic Fibrosis stopping me from being the Mom I want to be.



 
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