Can you think of something really hard that you HAD to do in your life? Something that made your gut twist and your mind go into denial when you first learned about it? And even when you finally realized that was the road you had to take, your heart had to go into survival mode to get through it? I’m sure everyone has had something in their life that was difficult- and has had long lasting effects. Divorce? Loosing a loved one? Or even a friends betrayal. The list could go on and on.
If you’re anything like me, once you have done the hard thing you want everything to be fine- for your faith in the doing to be ENOUGH to carry you over the obstacle and PAST it so it doesn’t seem like a hard thing anymore.
This is how I feel about Trachs. The little plastic tubes that go into Ben and Ty’s necks.
I am grateful for their trachs, it makes their quality of life so much better (and makes life possible!) But I am not quite over the whole situation. Sometimes I think I am…. but then I’m not. I would like to check the box once and be done. Then when I am feeling not quite up to task (or my faith seems to be wavering) I can look at the box and remind myself “See? Done! Now MOVE ON PLEASE!”
I remember so distinctly when the doctors started talking about a trach. Ben was a new born and in the NICU, and we couldn’t figure out what was wrong, only that he couldn’t swallow his own saliva and his airway kept collapsing. I remember when the nurse brought in the doll with a trach to show us how it worked, and my whole body just recoiled. NO! I couldn’t even let the idea sink in, I was so sure Ben would NOT need that. It was 8 years ago and I can still feel the emotions I had back then. It was so AGAINST everything I wanted for him, for his babyhood, for my mothering him, for our lives.
No No No!
Fortunately (and unfortunately) we got the confirmation we needed to know that WAS what Ben needed. A way to get nutrition and a safe airway. So he had his g-tube and trach placed when he was 7 weeks old.
Over the years it’s been so back and forth. I’ll go months where I am totally fine- I can change their trachs on my own, (Ty has one too) I can sleep fine, this is just our normal. Then BAM I turn into a whimpering idiot who can’t do any of that. When I started struggling with some intense anxiety in 2013 I couldn’t be left alone overnight with Ben. But then it got better, I was doing everything this year, I even showed a bunch of Med Students how I change his trach (they weren’t used to seeing it on a child.) But then one day as I was changing his trach Ben tilted his head a certain way and the hole kind of disappeared. I felt the blood drain out of my head, and all sorts of panicked scenarios immediately rushed through my mind- what if I couldnt get it back in???? I got the trach back in but had to lay on the floor for a few minutes afterwards and work on my OWN breathing.
For the record- Ben is the best about trach changes, gets ready and counts 1-2-3 and was happy to pose for a photo. But Ty hates them and cries through the whole thing and did not want a picture (and could someone clean his ears please?)
So the next time I made Jonathan do it with me, and he is so fast and so good at it but this time he must have gone TOO fast because Ben couldn’t stop coughing or get his breath for a longer than usual time. Ok I’m done. This trach stuff is too much. Why do I have to do this to my boys!
See what I mean? Where did my faith go? That strength I had? My faith that we are all in Heavenly Fathers hands and if I just do my best whatever happens we will be ok? My faith that I can do hard things? I thought I checked that box!
I’m trying to remember that I am human. I am not the only one who struggles with hard things- or who feels overwhelmed (right???) I am trying to turn my life over to Heavenly Father in a REAL way. (But I am afraid that means saying “I’m Ok if Ben dies.” Ack! You see the source of my anxiety??)
At church on Sunday I was reminded of this scripture- “He giveth power to the faint; and to them that have no might he increaseth strength.” (Isaiah 40:29) What a good reminder. He really is the true source of strength.
“And if men come unto me I will show unto them their weakness. I give unto men weakness that they may be humble; and my grace is sufficient for all men that humble themselves before me; for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them.” (Ether 12:27)
Ben and Ty (or whatever I am facing) aren’t my weaknesses- but how I handle my situation CAN be and that is where I learn the most about myself and where I stand with Heavenly Father. And I have seen ways that I have become a much stronger person through trying to pull myself up from my mental low muscle tone!
I am NOT alone. None of us are. I know Heavenly Father loves me. I know that Christ experienced everything and is the one who can truly understand my trials- and He knows what I can become with them if I learn to trust Him. (This video “The Refiners Fire” is so worth the few minutes it takes to watch, it’s truly amazing and really helps put it all in perspective. Make sure you have a tissue!)
Last but not least, I have supportive family and friends (including those of you I haven’t met in person yet!) and for now those things are enough.