Sunday, February 12, 2017

Maelee's Mountain

Right after Maelee had her surgery a couple of weeks ago everyone in the family got sick with colds to different degrees. Maelee’s symptoms of late have been a very persistent very challenging cough. I assume it’s part allergies, part healing from the surgery, and part pseudomonas (which they found in her results of the bronchcoscopy). She has difficulty controlling it because it’s one of those back of your throat itchy, swollen, non productive coughs that just stay and stay and OVER stay their fair share of a welcome.

One morning this week we were driving to school and I decided try to be helpful and fulfill my role as a mother and give her ideas of what to do to help her cough. I said something like, “you need to try and help yourself not to cough as much as possible like taking sips of water and blow your nose.” Then she turned to me and said, “Mom you sound just like the kids at school. They tell me to go away and not to sit by them because I’m coughing too much and that they don’t want me to sit by them. Well I’m really trying Mom but its hard.”

At that point several thoughts and emotions ran through my mind. First, I felt so ashamed that I had said anything to her in a way that made her think that her cough was something she could choose to start or stop. I had judged her, assumed really that she could control it. I wasn’t as empathetic and kind as I should have been as a person and especially, ESPECIALLY as a mother. My attempt at trying to help, just confirmed what others had said in attempt to hurt. She works so hard to keep herself healthy and is blessed enough to have “no cough” at her “baseline,” and when she does get one it’s absolutely not something she can control.

I asked for forgiveness and then helped her think of a plan to combat this cough. Now as she fulfills her role as a daughter, naturally we will have a difference of opinions on the “best” plan but I can do a better job at being an empathetic person and mother as I talk to her about her trial and help her be successful to overcome it instead of making assumptions as I did that morning in the car.

Many other things I’ve witnessed Maelee do while she’s been in the hospital and in recovery have made me marvel at in my opinion how difficult it is to be Maelee. One thing I cringe at every morning is how many pills she has to swallow before she can eat her breakfast. The reality of this part of her life hit me the hardest after she’d had surgery and finally got to eat. Here she is swollen and wounded from the procedure and finally its time to eat, but before she can, she has to swallow 5 enzymes, an antibiotic, and a Tylenol. It’s a heavy load to bear for her to know that yeah she could skip the pills but if she does she’ll get major stomach cramps and diarrhea. It’s a burden.

While reading a book (The Orphan Keeper, by Camron Wright) right after Maelee was in the hospital I read this quote, “Your own mountain is blocking so much light that all you can see is darkness…You are not alone…I’m not suggesting it makes the pain easier but it does perhaps, make walking a little less lonely.” Now of course this message was delivered friend to friend in an entirely different and non-related scenario to Maelee’s in the book but it was such a beautiful way of expressing what Heavenly Father has given to us in the gift of His son Jesus Christ and in the gift of families.

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.


  1. 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!

  2. I 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?

    I 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.

    1. 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!