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, January 29, 2018

Can I Ask You A Personal Question?



Friend: “Can I ask you a personal question?”

Me: “Sure.”

Friend: “What helped you decide to have more children after your children were born with Cystic Fibrosis.”

Me: “Yes! One of my favorite personal questions!”

                I really didn’t say the last part but I was glad to answer the question because it’s an intriguing topic. After our first baby was born and a few weeks later diagnosed with Cystic Fibrosis my heart and mind closed to the idea of having any more children. I got upset with people that talked about it or referenced it. Shocked that they would even suggest we would want to have more children. Didn’t they know that it was our fault our children were born with a chronic disease, and it could happen again to the next baby! Didn’t they understand that?

                But things changed. As I became a mother and got right in the middle of loving this strong willed charming sassy first born baby girl that hard shell of “absolutely no more children it’s only going to be her and her alone,” began to chip away. The Holy Ghost, AKA Still Small Voice, AKA Spirit of God would give us whispers of there being more children to come for us. We would go back and forth as wife and husband one saying something about having another child and then the other saying something a few weeks later. It didn’t take long before we were sure it was the right thing for us to do. Before long, our second baby was born, a boy, and he landed in the 75% of a chance of not having Cystic Fibrosis. We celebrated that our family was complete. A boy and a girl! One of each! We wouldn’t dare mess with that perfect distribution! There would be no more children for us!

                But we were wrong again a third time and then most shocking of all to us a four time. Ruby, our sweet baby girl had to be the loudest to get herself here. But the point was each time our knitted couple heart was made ready through the whisperings of the Spirit of God. As I turn around and look back on our still very young family I am overwhelmed by gratitude that we’ve been so blessed. Through the process of the 8 years that it took for us to get our four children on the earth with us there are two very special conference talks that helped me personally see past the walls of the world and into my eternity. One of them was Children, by Elder Neil L. Anderson (first given just a few hours before Orson our third child and second with Cystic Fibrosis was born sending my pregnant self into streams of tears) and then with baby Ruby, Which Way Do You Face, but Elder Lynn G. Robbins (the talk that gave me the powerful reminder that I needed to care nothing about what the world though and only about what God thought).

So the simplest answer to my friends personal question would be, God let us know we had more children waiting and we were blessed with the fortitude to listen. Words can’t express how much joy we have received from each of our children. “We believe in families, and we believe in children,” (Elder Neil L. Anderson).




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