I fell apart today. I mean ugly cry, unintelligible words blurting out as I try to convey to Ike what on earth is wrong with me. I happened to forget that Mark had OT at the hospital this evening after work, despite the fact that we have therapy at the hospital every Wednesday night. Today was different. It was a Jewish holiday so Mark didn’t have to be driven down to KKI for his program which meant less packing of bags the night before. Alas, I awoke this morning, went to work, and didn’t pack the necessary essentials, i.e. double stroller. We arrive and I break it to Jillian that she must walk from the car to the hospital so that I can push Mark in the single stroller because I can’t control both of them in the parking lot. This is out of routine for her and she starts crying. Mark is a contagious crier so immediately he loses it. By the grace of God, I got both of them in the hospital and up to the third floor to meet Mark’s therapist. Given how upset Mark was, he spent the first half of therapy just regulating himself by swinging in the therapy swing. The entire ordeal was mostly a waste because of how upset Mark was when we got there, all because I forgot the double stroller.
Whoever witnessed me angrily wrestling our stupid stroller in the parking lot of Meritus Medical Center probably had a good laugh. Situations like these aren’t unfamiliar, they just represent a typical series of events that unfold on a regular basis. It also followed on the heels of several more frustrating phone calls with our insurance company. Though I thought Mark’s insurance drama had an ending, the story was resurrected when I received notice that all of Mark’s therapy and doctor’s visits had been denied because I never notified both insurance companies that Mark was double covered (yes I did). Upon calling the insurance company they insist that the subscriber, Mark, call himself and state that he has an additional plan. I calmly explain that he’s two, but inside I’m screaming “if he could talk to you on the phone, then I wouldn’t have the need to purchase additional insurance to cover the gap that my employer’s plan has that excludes autism!!!” I spent an hour and 17 minutes on the phone with representatives from both insurance plans, and at the end of this particular call the insurance representative actually said to me, “you realize you just created a ton of work for me”. I was speechless.
The combination of my insurance defeat and the chaos of our therapy schedule left me in shambles tonight. Ike laughed at me, he said, “wow, I can’t believe it took you this long to fall apart”. He’s right. Without even realizing it, today marks one year since we first had an appointment with Kennedy Krieger to figure out what was “wrong” with our boy. I’ve had my moments of anger and I’ve been tearful when we faced some seemingly insurmountable walls, but I trudged on.
I read books, articles, listened to podcasts, joined Facebook groups, connected with every parent I knew that had a child on the spectrum, and have made friends with several people I didn’t previously know. I’ve had lunch with and cold-called people that I’ve never met just to hear their stories and understand what worked and what didn’t. I’ve flexed my hours and recruited our village of loving family members to drive Mark every day to his special speech program an hour and a half away. I get home late most nights because I’m either working late to make up for coming in late when it’s my turn to take Mark to Kennedy Krieger or I’m driving him to therapy. I spend weekend afternoons filling out evaluations and intakes for the following week’s appointments. Ike actually overheard Jillian playing with her dolls one afternoon saying to her babies that they needed to nap so that mommy (Jilli) could fill out the doctor’s forms. Cute, but sad. This has become our norm. I apply for grants and research new interventions and therapies like nobody’s business. I’m relentlessly searching for the best approaches for Mark. I’m not unhappy with our new life. It gives me drive, grit, and purpose. I’ve gotten past the initial mourning one feels when faced with the prospect of raising a special needs child, letting go of what I had expected, and embracing what God has given. However, the wound is still there, and honestly still raw. The insurance battles, school system struggles, waiting games, and unfortunate realities of limited special needs resources occasionally throw salt in that wound and make me want to beat the pulp out of a stroller!
We’ve come a long way in a year. Mark received an autism diagnosis before he even turned two. I thank God that adding Mark to waitlists and using my persistent nagging abilities warranted relatively fast evaluations and a spot in a highly sought after program. I’m thankful for God leading us to genetic testing that would ultimately point us to our answer for his physical problems and autistic behaviors. And I thank God for His everlasting grace and love, which always picks me up when I even begin to think about feeling sorry for myself.
I pray that this next year be filled with reached milestones, perseverance, and many more friends made along the way.
Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5:3-5