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.

Sunday, March 19, 2017

When I Found Out About Her Nightmare Normal


I am continually pleased to realize periodically that I forget how strange our family is. I get wrapped up in the medicine and the treatments and the appointments and it’s just our normal. Our schedule, our routine is just what we do. If we peeked into another families day to day we’d think they were as freakish as they would think we are from seeing ours. So what I am trying to say is, it’s nice to know that we are all shockingly different from each other’s normal.


I have mentioned it before but I love the show, “Call the Midwife.” I’m a bit behind on the episodes but season 5 episode one has a quote that I loved. “first glances are for strangers and shock is just for passersby…….but if you love {your normal – my words in parenthesis not Call the Midwife}she’ll become..familiar and beautiful.”

Recently I was talking to another CF mom friend on Facebook messenger. She and I were shooting the breeze on test results and CFRD (Cystic Fibrosis Related Diabetes), and then we got on the topic of g-tubes and PARI neb cups. We were discussing our commonalities. Me thinking the whole time, “boy it sure is nice to visit with someone who knows the details already of my normal, we two are so much alike” when all of a sudden she references her cancer.

Baaaaaaaaaaack it up sister? How did I not know she had cancer? I guess it makes sense that I didn’t know its not like we see each other ever and I guess I missed tiny clues on her Facebook feed but sheesh, cancer? Terrible friend alert. I couldn’t believe it. She had been diagnosed at the beginning of 2016 with her cancer and had been dealing with the unimaginable issues that came with that all year long. Through several surgeries and painful and messy treatments she came through the cancer holding down her job and taking care of her CF child along with her other non-CF children. During this time she also had to have her CF child get a g-tube placed. She lay in the hospital bed with her child after g-tube surgery while literally still recovering from her own cancer related surgery not long before.

My thoughts were spinning. It was clear to me that she was a super human to be able to do what she had done for the past year. I couldn’t imagine the black days she must have had filled with worry, despair, and pain. But here she was a woman of faith working hard to live to take care of her family. Moments before in our conversation she said something to the effect of “I don’t know how you do it with 3 CF kids,” and I thought back to that statement shocked and feeling the same way about what she has done and is doing.

She floored me with her normal. I could not believe or imagine doing what she has had to do over the past year. I was so proud of her and grateful that she had a faith filled heart and family to get her through such a nightmare.

While we can compare notes on CF lab results, CFRD, g-tubes, and our PARI cup suppliers I will never understand what she has been through with her cancer diagnosis and treatment. What we can understand about each other though is our faith and trust in God knowing how it’s all going to work out in the end. I continue to remain grateful to have learned a tiny bit about her horrific trial and use her for inspiration to get through things that are difficult for me.

She is a saint in my book and example of someone who has taken a shocking normal and turned it into something familiar and continued to love and thrive in her life despite pain and personal anguish. Heavenly help gets her through, that’s a normal we definitely share.

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