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 8, 2017

Sorry We Dragged Your Trick or Treating With A Broken Arm Baby Ruby


Big Deal CF Blessings From 2016 #3

I have this awesome nephew who was born on Halloween 9 years ago. We try to Facetime on birthdays since his family lives in Alaska. So we (all four kids and Frank and I) are piled on the couch squeezed into the camera shot of Frank’s phone. The call ends. We all jump off the couch. We really must have all literally jumped off the couch considering the motion of us 5 bodies moving up and off caused Ruby’s smallest of the 6 bodies to fall off the couch. She landed on her right hand.  

Ruby then starts to cry quite hysterically. Of course we comfort her and get her calmed down. She still is a bit fussy and clingy to me (which hey is totally normal) but we give her some Tylenol to be on the safe side. We do notice that she is walking around holding her right arm with her left arm very gingerly.

It’s trick or treat time though so we head out on our adventure and after an hour and a half of getting Ruby in and out of a wagon and a car seat the poor baby girl is exhausted. When she wakes up the next morning and is still holding her right arm with her left I call the pediatrician and get her in right away.

The x-ray shows she broke both the bones in her arm. Thanks to glorious insurance (really with us we can’t ever complain about insurance, since we really get our money’s worth like within 5 days of the start of 2017 we meet our deductible), she gets a fantastic waterproof cast. She really does wear it like a champion for her 6 weeks and even asks for it to be put back on after her arm gets washed in the bathtub every night.

What’s the Big Deal CF Blessing in this then? Well I’ll tell you what it was a great feeling to have a normal crisis on our hands. We didn’t have any uncertainties about lung function, weight gain, throat culture results, blood pressure, or any and all of the medical acronyms you can think of in regards to blood, sweat and tears. Nope, for this doctor’s appointment Cystic Fibrosis wasn’t an issue!

Yes we felt terrible that we dragged her around trick or treating after she broke her arm, but HEY we didn’t know she had yet OK so back off!

All I’m saying is, it was nice for once to not have to delve into the CF history explanations and hope you remembered to say everything that matters so the doctor could make an informed decision. Yes this day baby Ruby got to be just a regular kid with a broken arm and the CF didn’t matter at all. And any day when you can be just a regular adorable little girl with a regular broken arm is a good day. See we are normal…..sometimes.  
Photo from family shoot with Stacy Guthrie amazing photographer and friend.

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1 comment:

  1. wheeziehoneyJanuary 8, 2017 at 10:38 PM

    I just love reading your stories Kamarah. The caring, concerns and faith and love shine through each word you write. You are amazing and such an inspiration to me. Your family is so full of love and the kids, no matter what they go through have the most gorgeous smiles. You lift me up everytime I see you and I thank you for that. I wish your family the best and feel very blessed when you call me friend. Love you all. Linda

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