I have wanted to sit down and write countless times prior to now. I find myself in a state of void as my words, emotions, mental state have been spent. The words I desire to peck out onto the keys before me lack any sort of cohesive structure.
When your child is given a random diagnosis, with a prescription for hours of therapies to merely learn to manage the symptoms of her pain, there is no guide for the parents other than ushering your child to and from appointment after appointment. How do you manage life at home? How do you maintain a sense of normalcy when your days are now summed up as either your child is having a good or bad day? When “good” merely quantifies pain less than 6 or 7, anxiety levels are manageable, energy level is sufficient; and “bad” means her pain has prevented sleep, severe anxiety attacks are frequent, and her battery life is lower than low.
No one tells you how to rearrange life and remove everything from your child’s plate to create a more stable mental health. This former teacher and homeschool mom has struggled to remove school from her load. I have always been a “do your best” kind of mom never wanting my children to stress over school or a grade, yet simply exhibit their best effort. Now, school has had to move pretty far down the priority list because her mental health must come first.
No instruction is given on how to help your child conserve every ounce of energy possible as to prevent increased pain for the rest of the day, thus requiring an entire day of recovery following. A few hours of fun “take your mind off your illness” time easily backfires, setting her back days, even weeks, behind any form of progress.
Believe me, the opinions are plentiful. Those who “seem” to know my child and her pain better than I do never hesitate to let me know my failures and how I should do this or that. Thankfully, my conversations lately, have been with fellow moms who each have a child with a chronic diagnosis. Moms whose lives have also been consumed with doctors appointments and slow progress. The other opinions, I push away and isolate myself from. I know my child best. Her heart came from within mine.
Where is God in all of this? He is my one constant. In my world of everything in me being poured out, He is the one that provides a fresh refill, with a “my pleasure” to go along with. God has been my immovable rock, through tears and heartache, I always know where I can turn for I know He cries with me.
This is certainly a bayou we never expected, but even still, the blessings are there. I get to spend some precious time with my 13 year old firstborn. During an incredible difficult age in the midst of middle school confusion, my girl is home with me. I haven’t had this much alone time with her since her sister arrived 11 years ago. She shares her pain with me, although I tire from hearing her complaints, I am here for her to share. I am first in line to witness achievements in progress, no matter how few, and pick her up when her emotions spiral uncontrollably.
I have developed some beautiful friendships with women who know my agony as we watch our children suffer. We cheer each other along with each appointment, difficult decision, and glowing moment. We offer plenty of hugs and a listening ear.
Moms and dads of kiddos struggling with a never-ending battle, as I write more about our journey I hope I can encourage you. Keep fighting for your child. I feel your exhaustion, I understand your hurt. No one knows your child like you do. Stick with what you know, let nothing deter you. Hold on to a mighty God who knows the outcome of this battle and is the only One who can keep you upright, refilling you as you pour yourself out every day. You are doing a great job, I promise.