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 6, 2015

Odd Man Out

Chuck is the 2nd in birth order. He is the only Adams kid who does not have Cystic Fibrosis. Charles is another testament to Heavenly Father's love for all of his children to see what personalities come along in families and when they come.


Chuck's heart has always been tender and so full of love. I remember being made very aware of his sweet tender heart at a park one morning when he was 3. A girl at the park with her mom, neither of which we knew, got upset. She fell down and was crying on the concrete. Chuck saw her distress, beat her own mother in a foot race to the girl and wrapped his arms around her assuring her she would be OK.

Anytime he is offended by a hit or any other such misdemeanor from one of his siblings and they get into trouble for their behavior he is the one who comforts them and talks me or his Dad out of continuing the scolding or time out, etc.

Since his forever he has shown an extreme fondness and attention to babies. He will sit and hold a baby just soaking up their sweetness just as long as any mother will let him do it. He doesn't care if they cry, or stink, or wiggle he just loves. He has been the most anxious for our new baby to come.

The painful part for him right now is being the one who doesn't have CF. Not seeing yet that it is a great blessing to his body he is jealous of his siblings and the attention they get for taking their medicines and doing treatments, which of course it totally understandable and normal. He feels left out of their "club."

A few days after we found out about the new baby having CF we told the kids about it at dinner.
His facial expression immediately revealed his broken heart. "I don't want the baby to have CF Mama," he told me. "I want her to be like me."

We want her to be like him too, because of his natural ability to love and forgive and see someone who needs support and provide it. He is a supreme big brother.

He is such an important part of our family and his constant presence and support for his siblings during their treatments is possible because of this special and sensitive heart he was given. Chuck is one incredible odd man out!
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1 comment:

  1. HeidiMarch 9, 2015 at 10:17 AM

    Made me cry. :) We've seen Charlie & his big heart in action.

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