I read on a post tonight that having a child with a progressive or terminal illness is a "rehearsal with grief." Wow, I have never heard it put quite like that, but it is so perfectly stated. It's like there is this normal life, the one with stress, worry, fear, day to day rush, financial concerns and goals, pressure from so many directions. Then there is this "real" life. That's the one where I believe I have found. It's the one where the financial concerns cannot be that important. The choices of where to live or what to do when I grow up are completely null and void. It just all doesn't matter. The stress, worry and fear of the future, well, they are just that, they are in the future, and I cannot change that. I often joke with Grouchy (my angel of a husband in this life) that he has stressors of job, home, taxes and on and on, and I have what I call job security: Garrett. It sounds kind of funny or even heartless, but it is the truth. And with that job comes some psychological torment I cannot adequately describe but that raising my son is sometimes a dress rehearsal with grief.
I had a haunted night a few nights ago, and this post is my attempt to share my thoughts, get some things processed by typing them out, and allow myself to go to some places I know I do not need to stray to often, but that keep my perspective and hope in eternal life with my Savior and my loved ones in the very focused forefront of my life and my family's.
All last night I would wake trying to put adjectives in a long train to try my best to describe what my evening was like two days prior. I just couldn't. Addie was in bed reading. Garrett was snuggled up under his soft blankets sleeping soundly, and because Grouchy was away, Ainslee had curled up on his side of our bed and fallen into dreamland. I innocently migrated to my computer where a post from a dad whose son died last year popped up. His son was just ten years old when he died from Duchenne MD. And like I frequently do, I got a bit caught up reading other posts by this same dad about his son and family. After about ten minutes of reading, my cheeks were quite warm from the tears.
Last week, two children with Mitochondrial Disease went to Heaven. That, of course, is heavy on my heart. Then watching the posts from the dad.....photos that were so touching and others haunting; I was deeply affected. Once can argue that maybe it is unhealthy to walk alongside those recently stricken with grief, but in some strange way, I feel if this is a rehearsal, then I should do due diligence by taking it all in and processing what I can.
Then there are those times when I forget what Mito is, that my son has it, and that it could be haunting us at all. But then there are more times recently when I move from a mom who has a "delayed" child to the reality that mito has caused my child to have mental deficits, ADHD, Autism, not grow properly, have low muscle tone, and now have to poop by having his colon manually flushed through his belly button stoma into his appendix, then on down. Holy crap, has this disease affected my son. And the effects will not go away. Ever.
That night, I went from my computer to my bathroom where I felt my chest had been caved in by a large brick, and the tears erupted, poured, spewed..... It was horrible!!! I was, for the first time, truly up close and personal with the truth of our son's disease and the reality I thought I had faced, well, it showed up dressed much differently than I expected. I rushed to Garrett's room where I dove into bed with him and just held him, kissed him and wept and wept. I felt I needed to tell him I was sorry. Not for what he has, but how I have managed him. I whispered to him all the things I thought I want him to know, things he cannot comprehend yet. While it seems romantic to share all of my thoughts and love personally, directly to Garrett, I cannot do that in the way a parent of a mentally typical kiddo could. Garrett still doesn't and likely will never will process like we do, understand all the words, the apologies, the reasoning. However, in all I do, I vow he will see my love for him in every step I take, medicine I give and even mess that I clean up.
Last night it was real. Mito was a big, fat, ugly elephant in my world, and I begged him to leave!!! After praying and holding my little hero for a half hour or so after the tear faucet shut off, I headed to my bed too. Sleep was welcome, but more welcome was the sound of Garrett's feet running to my room and climbing on top of me with,"Mom, can I play the Wii quietly?" at 5:45 in the morning. I truly should never complain about those too-early mornings. Every second counts.
Reality is harsh, and I am not ready for what is to come!!! And it is coming true right now to two families laying their Mito sons to rest while they are mere boys. Please focus your prayers on them in the weeks to come as the rehearsal with grief becomes hell on this earth.
