My five-year old is my mini-me. She mirrors what I looked like as a child—wispy brown hair, big brown eyes, spitfire attitude (a.k.a., What About Me?!), creative, clever and downright cute. She watches things from a distance, craves to be center of attention but struggles with self-control skills. That can lead to tripping over nothing or knocking into things while bounding from one room to another. Even with the accident-prone abilities she has, I love the spunk that oozes out of this displaced middle child of mine. Happily, Ronan looks up to this younger sister of his when she offers him assistance. Izzy guides him in ways I cannot. He follows many of her encouraging cues after a simple prompt which is always followed by a doting sister’s glee-filled smile.
I am coming up for air after a recent surgery. These last few weeks have been painful physically for me, but more so, mentally exhausting for Izzy. She didn’t know how to handle the changes to our household (and there were many). From detailed pre-op planning to a tiring post-op recovery I was here but not really. Mommy couldn’t make owies better (blown kisses from a distance don’t cut it). Mommy was sleeping while sibling squabbles took longer to subside. Mommy was missing out on much, if not all of everyone’s life for a few days. Izzy craved to see me, but I was in no condition those first few days to do anything but rest alone away from the constant pulse that is our home. Unfortunately, negative behaviors started. Kid-sized retaliation occurred. Feelings were hurt. My ‘What About Mini-Me’ finally melted. I hated to see her so frustrated while trying to comprehend all that was going on around her.
At the end of the first week as Izzy saw me get a little bit stronger she started to calm down. She tiptoed down the hallway when she entered the room where I was resting. She peeked around the doorway when she thought I wasn’t looking to stare at me. When I caught her eye she threw me a signed ‘I Love You’ sign, flashed a smile and sped away.
That same week I was willing myself back to life Izzy was more vocal about praying. She came home from school asking if she could say a new prayer she’d learned. I said that would be so nice because she was trying so hard to be helpful. “We give you thanks, Almighty God, for the gifts we… <giggle giggle giggle>….and this we ask forever and ever. AMEN!” In true kindergarten form, Izzy had left out a few of the key words, smooshed together random ones and made up her own prayer by adding something new. I was so grateful for her contribution. My other kids were already sending up daily and nightly prayers: “And, please get Mommy better!” they said with all of their heart. They were desperate for me to be better and now, not in the 4-6 weeks the doctor suggested it would take to heal. To speed things up I had little nurses running around me making sure I ate, rested and got up carefully. The kids started to accept that this really was only temporary and that I’d be back on my own feet again soon. Over time I wasn’t hearing, “MOMMY, be careful! Mommy, watch your tummy! and, Mommy, are you allowed to lift that?!” when I would made myself something to eat. Smiles eventually returned to my children’s faces and they gave thanks that I was finally with the general population again.
We give you thanks for the gifts…
This week I am very thankful for further healing so I can be Mommy x 5. Each day I get as their Mom gives me the chance to right any wrongs that tried to cross my path the day before. Many days are rough even before my alarm has gone off. I’m not so thankful on the days that Ronan has awoken me at some ungodly hour with random middle-of-the-night laughter. I drag myself out of bed never feeling fully rested. I wonder which emotion will greet me from the sleepy children I must rouse for school. Tired and cranky are no fun to hang out with at 7am. I fall back to my ever-vigilant hopeful self pleading that today be *the* day that Ronan takes a big turn as well as a huge leap toward full recovery. Knowing that his journey is slow but thankfully somewhat steady I promise myself again to keep plugging away.
As I push through my own emotions you’d think I’d remember to always pray as I start my day because of how hopeful I usually try to be. Before I get too far from bed and closer to the actuality that consumes my day I know it would be the best time to stop, believe and trust. Because I’m not always thankful for what I’ve witnessed in Ronan’s development, nor what lingers now in his everyday struggles giving thanks isn’t always easy.
I do think it’s important to be thankful for the many of the other gifts I have. Five reminders constantly underfoot clamoring for my assistance or attention make me pause in admiration for life in general. I’m thankful for the little people who call me Mommy even when their Mommy is ready to collapse. I can be just as tired, cranky and needy as my kids! Those days I crave just a few more minutes of rest. I’ll take a little bit of peace and quiet, too. I’ll happily take back some of Ronan’s former typical skills also. I’d love to give up sitting in parking lots as I wait for his therapy appointments to end. It would be so nice to sit on the couch with my husband having uninterrupted conversations like we used to. I’d gladly give away some of the madness that rules my day. But, it’s these very days I live that keep me going and growing in my faith that something good will come, especially to Ronan.
I am still somewhat in disbelief that the life I live is actually mine. When reaching out to understand what happened to Ronan I was drawn to people living a life similar to mine. Those other parents are forever a large part of my support system. They make sure I find something, at least one thing, to keep hopeful about. I am not thankful for how Ronan got to his current state, but I am grateful for being welcomed into a community full of devoted believers. These people discovered helpful treatments that have improved my son’s well being and subsequently my own attitude.
At the end of the day I’d like to think I might be thankful for all of the moments I didn’t sign up to learn—who knew how hard it would be to jump through hoops to care for kids like Ronan? I know I should say thank you for the strength I never knew I had before vaccine injury and special needs entered my life. I am in awe that Someone trusts me beyond my comprehension to be the parent of Ronan. How we both survive each day is mind boggling.
Remembering that every day is a new day and that I can work through the changes Ronan has brought to our family is worth the struggle. It helps us find his gains and furthers my belief in keeping faithful. Because of Ronan I try to live life better by promising to advocate more clearly for him. I do this because he created a powerful voice in me. While building my confidence I also know I need to work on accepting more fully all of the pieces Ronan’s life brings. Despite the pain and suffering, he’s deserving of so much. I am thankful for so much. I am indebted to those people who support me. I am blessed because of my son. Forever and ever. AMEN!
Cathy Jameson is a Contributing Editor for Age of Autism.