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.

Monday, April 6, 2015

My Child's Faith : She Knew the Plan



      As a parent watching their child grown, learn, and start to ask a million questions there are certain conversations that you start to prepare for, and some you never can. When you live with a chronic disease in your family “the talk” about what that can mean is definitely one you try to be ready for.

Because we wanted to make sure that our daughter knew that no one really has a perfect body and everyone has physical challenges that they overcome and live with we try to talk about those things as often as we get a chance, even when she was very little. The chances came up to talk about physical hardships others face with an elderly neighbor who has had several strokes and the effects of that on her body, a close family member who we love who has lost a lot of their hearing, etc. We would talk about these things in hopes of showing a pattern that she would recognize in her own physical challenges, that these challenges are given to us not because Father in Heaven loves the person who has them less than another, but because it is part of how He helps them to be spiritually stronger and others to be stronger. Then the best part, the most exciting thing we hoped she would remember from these conversations was that these imperfect bodies are our earthly bodies. That through Christ’s resurrection and atonement for the world we would all one day be resurrected like our Savior and have a perfect body without these physical troubles.

      With Maelee it happened much earlier than we thought it would. She was 4 years old and I was very pregnant with her 2nd brother. She was having a hard week and very fed up with me asking my favorite questions. “Did you take your enzymes?” “Will you please do your spacer?” “Can you please put your vest on?” One day at lunch she threw her enzymes across the kitchen table and this is our conversation that I loved so much I wrote it in my journal.

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Maelee : “I wish I didn’t have Cystic Fibrosis and didn’t have to take enzymes and do my spacer and my vest.”

(me thinking this is my big chance)

Mom : “Maelee who gave you your body?”

Maelee : Heavenly Father

Mom : “Does Heavenly Father love you?”

Maelee : Yes

Mom : Do you think He still loves you even though He gave you a body with Cystic Fibrosis?

Maelee : Yes

Mom : Why do you think he gave you a body with Cystic Fibrosis?

Maelee : To test me.

Mom : That’s right so you could learn from it, and I learn from it and so does Dad and Charlie. I know that things you have to do for your CF aren’t fun and bother you sometimes but do you think you can keep trying hard to make the best of what you’ve got?

Maelee : Yes

Mom : Why?

Maelee : Because I am strong.

Mom : And because you’re a daughter of……?

Maelee : GOD!

Mom : That’s right you are strong and you’re a daughter of God

(now I am getting emotional)

Maelee : Mom I have another question.

Mom : OK what is it?

Maelee : Are wolves bad?

Maelee : And what do fish eat?

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       Her faith was in place and growing, but thank heavens she was still just a regular four year old with lots of questions about her life, wolves, and fish. There has been already and will be more conversations like this to come, but we know the best part so we are ready.

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