At the beginning of our journey when Mark’s medical concerns and developmental delays were unfolding Ike and I said that our mission was to do everything in our power to give him the best life possible while accepting him for who he is and loving him regardless of how different he may be from what we expected. Sometimes, I lose sight of that.
Recently, I went to a kid’s consignment sale and as I stood in front of the vast selection of infant toys, I thought “Mark would be in heaven.” The bold colors, the buttons, the lights, and the sounds! And then a mom grabbed her toddler’s hand, who looked to be about three, and I could hear her grumble “you don’t want those toys, those are for babies.” And my heart sunk. It’s funny how certain things will send me over the edge to face my feelings. Each time I read the words “don’t blink, they grow up so fast”, I feel resentful and bitter, because I have an almost three old who is just now figuring out his infant toys. I left the sale, sat in my car, and feverishly typed out a grumpy blog post in the notes section on my phone. It went something like this…
April is Autism Awareness Month. Meh. A whole month dedicated to reminding me of my reality. One trip to the barber, or attending our first IEP meeting is enough to make me aware of autism. An article about wandering/escaping was recently shared on Facebook, and it left me feeling this deep sense of worry, and the wandering prevention kit that I subsequently ordered is now shoved deep within my closet. I don’t want to “light it up blue”. I want to make it go away. Dealing with the daily battles that routinely crop up leaves little enthusiasm for us to spread awareness and celebrate difference. Though Mark makes progress, sometimes our little triumphs are buried among the discouraging reminders of the differences that exist between Mark and other children.
And on the negative post went.
Most of the time when I write something, I scan over it several times, hit publish and wait for my mom to text me my typos. 🙂 This time, I let Ike read it first. He wanted me to make sure that anyone who read it understood that despite my recent negativity, things are OK in our house. We are struggling, but respectively, struggling well. We try to take our life one day at a time but sometimes certain little moments make us zoom out and get a quick glimpse of the giant mountains before us and it leaves me rattled.
And then there are moments like this morning when I tried to give Mark a new medication. I was told that the taste was awful and we would have difficulty getting him to take it. Two of Mark’s doctors have been collaborating trying to treat his SIBO, small intestinal bacterial overgrowth, so an antibiotic was prescribed, with the anecdotal hope that it will also treat some of the autistic symptoms he experiences. Within seconds of giving it to him he projectile vomited. I felt defeated. In an attempt to disinfect the area, I sprayed the spot with cleaner and walked into the kitchen. Before I knew it, Mark had wandered over, slipped, and landed on his back in the cleaning solution on the floor and began to cry. I scooped him up in my arms, my eyes welled up with tears and I felt like I had failed him.
As I cleaned up and thought about my next move with Mark’s medication, I starting anxiously thinking about how I’m going to have to fight both of Mark’s insurance companies to cover the medication that I originally wanted for him that tastes much better but costs thousands. And then Mark, who had recovered well from his fall, walked over, grabbed my hand, put it on his head, and leaned into my legs and smiled. I took a deep breath, inhaled his delicious toddler Cheerio smell, and thought, “just love him.”
Sometimes I like to hold Mark and listen to the Coldplay song, “Fix You”, and imagine the day where Mark’s autism has faded, the looming dark cloud of his genetic mutation is gone and the person I’ve been missing since his birth appears. I know he’s in there. Locked in tight with his words. And though it’s hard to miss something or someone you’ve never had, I miss him so much it hurts.
It is so difficult to strike the balance of cherishing and loving Mark as he is and then fighting so hard to give him a better life, but part of that better life is having a mama who is capable of rolling with the punches and dusting herself off. I could spend energy wishing things were different, harboring bitterness about how hard everything is for him, but where does that leave me? So I will vow to love my son as he is, not lament over what he’s not, and embrace the freedom that there is in accepting the gift of our sweet Mighty boy.
Love bears all things, believes all things, hopes all things, endures all things. 1 Corinthians 13:7