From head to toe I want to do everything I can as a mother
to help Maelee’s mountain be less lonely of a walk, but if for some reason I
can’t OR if I make a mistake in my efforts I want her to know that our Savior
Jesus Christ knows how it feels. He knows what she feels. He loves her enough
to have felt all of her pain and sadness and struggles. Even the ones she
doesn’t ever tell her mother about. He knows and he will be there to walk with
her through all of it.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, February 12, 2017
Maelee's Mountain
From head to toe I want to do everything I can as a mother
to help Maelee’s mountain be less lonely of a walk, but if for some reason I
can’t OR if I make a mistake in my efforts I want her to know that our Savior
Jesus Christ knows how it feels. He knows what she feels. He loves her enough
to have felt all of her pain and sadness and struggles. Even the ones she
doesn’t ever tell her mother about. He knows and he will be there to walk with
her through all of it.

You are a totally amazing mother. Thanks for sharing this journey, so we can all feel what you feel and rejoice with you about Maelee's courage!
ReplyDeleteI landed here from a google search on Relizorb because I am finding that the efficacy is not consistent across batches (especially since the new design) and am desperate to talk to people who use it to see if they have had similar experiences. So I am wondering you have noticed, or perhaps not had time to refill your Rx yet or perhaps not encountered the new design yet?
ReplyDeleteI also read this post about the cough. As a kid, the cruelest thing any other kid could say to me was, "Don't cough on me." It was usually some jerk sitting in front of me, who would INSIST I was coughing on them every time I coughed, even if I turned and covered my mouth with my arm. I would try holding the coughs in, but it was miserable and not possible. She has already tried everything to make it stop b/c no kid wants to be rejected by their peers. I was lucky to have good friends growing up who had my back. The kindest thing they could do was ignore it. I know you have to listen for the cough getting worse or more junky but sadly the cough is something neither she nor you can control.
Try to remember that she could be 100% perfect on all her treatments and this lung disease will progress. The most you can do for her is to emphasize that you know she is trying hard and to encourage her to be faithful to her medical regimen because, in the end, that is what preserves lung function for as long as possible.
Thanks for your comment! Very informative and neat to hear from another person who knows how my daughter feels. We just got the new design at the beginning of this month. We have not seen any difference. He is only on one cartridge a night though, we don't need to double up. We seem to have the same efficacy on all batches we have received. We have used it since November though. Good luck on finding your answers on Relizorb!
Delete