This is another post that honestly deals with RRP, life with it and the days you just want to belly-ache and ask why….but as I sit here, I realize it’s also for anyone that has a condition or a child or family member with a condition that has “robbed” them of something people all around take for granted. I keep thinking about Philippians 2:14 where I am told not to complain…to be a shining light. I also know that God hears my days where joy just isn’t the front-runner…and He still loves me and helps to remind me that one day I will know all the answers to my “Why?” questions…but today….I’m just not seeing the joy or the promises…just the mountains.
Just in the past couple of weeks, I have a RRP friend who has had major reconstructive surgery in her 20’s, another RRP family whose child is fighting for his life as the disease eats away at his lungs, ….then a reminder that I am in the same boat as all of those in my RRP family as I have been coughing up some papilloma recently. (Funny, you would think the trach would be a daily reminder, but I honestly am so used to it that I don’t think much about it.) I, like many others, am tired. Just tired of all of it and physically worn. (You were told this was not a joy day…….)
I don’t question God in all of this….but I do ask “Why?” I’m human and He knows that. I love music. Love, love, love music. God knows that…He knows my heart. Today, I just ask why I would love something so much and not be able to sing in an audible voice…..that’s an authentic, self-exposing question there. One of those questions you hide in your heart that you don’t want the world to hear. When I attend church and watch the choir and see folks just so lacking in joy as they worship, I want to scream out-“I would love to be in your spot…show joy!”
When I watch parents pass the opportunity to sit and read a book to their child…..oh what I would give for the voice to be able to sit and read an entire book aloud to one of my grand-kiddos. I think of the young boy that is fighting for just the ability to breathe as RRP eats away at his lungs….and I know how much he would love to play sports, run around outside…all those things taken for granted by so many….and my heart grows weary. Some days, the weight of all the things that have been taken…could be taken…and the unknown in all of it…they just zap your joy…and that’s today for me.
Yet…in all this…I think of how I am here. I am breathing. While I do not know an “end of construction” date, I do know that it will likely be because of RRP or a complication from it…but today…I’m here. Which brings more why questions. Why do some of us get another day and others don’t? Oh how I long to see that great big puzzle God has been putting together since the creation of the world….to see where my piece fits…how it fits…why it fits the way that it does…that’s my glimmer of joy today…that one day I will know all the answers to all of my “Why’s?”
Today, I just want a voice. A voice that doesn’t garner looks of pity or a hundred questions. A voice that is like the person next to me. Someone asked me the other day what bothered me most…assuming it had to be the surgeries and/or trach….and I said…the loss of my voice. I have a feeling that is probably the almost universal answer from anyone with RRP.
Sorry for the “pity party” post today…but I told you from post one that I would be real and honest….genuine.
This is me…for today.