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, January 15, 2017

Mother to Mother Yes I Can Help This TIme! Hooray!




(Meeting my goal and writing about some Big Deal CF Blessings 2016. Here is #4.)

There are often times in my life that I feel like I need a lot and get a lot of help from others which I am very grateful for. For someone like me who feels super needy and already one of those “special” friends who people cringe when they get a text from its great when once in a while I can be the giver and not the receiver. Something special happened to me at the end of 2016 with another CF mom for that to happen.

A few days before Christmas, I got a Facebook message from another CF Mom that needed me help. Because of some previous conversations we had, she knew that I lived close to her mother’s house. That day my friend had packed up and headed to her Mom’s house to spend Christmas there. She messaged me because in the chaos of packing her Christmas along with the typical circus needing to be packed when taking a kid anywhere overnight she forgot her nebulizer cups for her sons inhaled medication. She had sanitized them and had them drying on her kitchen counter, but accidentally left them behind.

There was no way for her to get the specialized neb cup since it was later in the evening, and ridiculously you need a prescription to get a nebulizer cup. (Really? I need a doctor to give me permission to buy an expensive plastic cup? Whoever repeatedly abused the nebulizer cups and used them inappropriately should really know that I’m super annoyed about this rule). CF meds need to be nebulized at a specific particle size so we can’t just use any old neb cup it needs to be a special brand. Anyway her son was symptomatic and needed treatment without delay and she needed this special neb cup.

I snuck into the kids room and used my phone light to quietly sort through my large and robust medicine armoire and was happily surprised to find a new sealed neb cup waiting to be used to help a friend!

She came over and we had a really great visit. It was a weird moment for me because I don’t get to talk to many CF moms in person. She also happens to be pregnant and doesn’t know yet if her baby will have CF or not. Hey! I’ve been there!

As we got to talking it became so surreal. Standing there talking with her my heart remembered how it felt to be where she is right now, or at least how it was for me to be there…. I wanted to give her a massive hug and a really inspiring win-the-championship kind of speech.

I wanted to tell her that she is so so so brave to have another baby and that I was so proud of her. I wanted to tell her that no matter what, CF or no CF it is infinitely worth it to have that child and grow their family. I wanted to tell her that everyday angels help me to help the kids with their treatments and meds and I know they help her and will continue to help us both. I wanted to tell her that all the details and minutia of Cystic Fibrosis matters to Heavenly Father. I wanted to tell her that she’s doing so great and that as she keeps on trying with her Mother heart each day ideas will come to her to help bless her children and make the never ending treadmill of Cystic Fibrosis runnable.

In the end, we talked a little shop. Stuff like where we keep our neb cups to dry. Sanitization. SVN machines. G-tubes. Labeling neb cups. Amniocentesis. We laughed a little. Stood there for a few seconds and realized that we “got” each other. It was such a special experience for me to have her in my home, even for just a few minutes. I think I may have asked her if I could give her a hug. Maybe I didn’t, can’t remember….but I should have if I didn’t. Being able to serve a friend in a specific CF-mom-kind-of-way was to me another Big Deal CF Blessing of 2016.


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