2014 brought so much change into my little world. It’s amazing how life can knock you off your feet and place you in a whole new galaxy when you least expect it. I should be accustomed to these life-altering events by now.
Almost 11 years ago, I held my 9-month-old daughter in my arms and watched her heartbeat stop on a hospital monitor. It still gets me… remembering that moment. If I allow myself to dwell on the memory more than a few seconds, my eyes will quickly fill with tears and my heart clenches. It was so long ago, yet it feels like wasn’t.
Losing Lexi changed me… for the better. I felt closer to God, closer to my husband, closer to friends and family and very much aware of every blessing and beautiful moment in life. Don’t get me wrong, I hurt badly for a long time and I still have flashbacks that cripple me. It’s true. Nothing is worse than losing a child, but that doesn’t mean there aren’t a lot of tough things in life. I’ve never been one to think that my bad is worse than your bad.
When Drake was born, in 2011, I couldn’t properly express the joy I felt knowing that I was finally going to be a mother again. Every ultrasound and echocardiogram told us we were having a healthy baby boy. But I knew Drake was autistic a year before he was diagnosed. I’m the classic Google maniac and knew everything about autism before I expressed my fears to anyone else. I had to reassure myself before I could even utter the words. I was scared — so very scared.
When Lexi was with us, I knew what needed to be done to fix her heart. It was never promised that she would survive, but we knew the steps needed to keep her alive. There were specialists who knew what was wrong and what to do about it. Six to nine medications a day kept her heart functioning. Autism is different. There is no magic pill. Drake can’t have brain surgery to get rid of it. For this I am thankful. I don’t want to lay another child down on an operating table for a major operation ever again.
I’m not yet one of those autism parents who thinks autism is a wonderful part of who my child is or will become. I’ve read so much on this disability, and I’m often in awe when someone says they wouldn’t change their child if given the chance. I wouldn’t change Drake’s sweet spirit or his love for simple things, but I would change him socially. Why? Because people are mean. I don’t want anyone to ever hurt my baby. If Drake continues to be as happy as he is right now and he learns to live independently, I can honestly say I’m OK with him having autism. Yet, here I sit, without my crystal ball.
I don’t know what the future holds, and this is the only part of autism that I abhor.
In the first few months after Drake’s autism diagnosis, I went from a state of constant worry to “mama on a mission” mode. I’ve put my teaching career on hold and made many other sacrifices to ensure Drake receives the therapy he needs. My husband and I have worked as a team every step of the way, and I’m so thankful. Every decision I make is based on what works best for Drake. He has intense ABA therapy four days a week and weekly occupational and speech therapy, which seem to be working. I cannot express how thankful I am for these people who work hard to help my child succeed. They love him and that makes me love them.
Please understand, Drake is not a difficult child. Yes, he’s currently nonverbal, and he has a few things that drive me up the wall (teeth grinding). Otherwise he’s so sweet and accepting of most situations. He isn’t rigid about routine, and although he’s awkward socially, he loves being around people. He does get uncomfortable in certain situations, but he tries so hard to cope most of the time. He’s happiest at home or in predictable environments… but aren’t we all? I’m so in love with Drake’s emerging personality, and I cannot wait to see how much progress he is going to make this year.
Recently I had an epiphany while in Target. I saw this amazing wooden wall hanging that read, “You are my greatest adventure.” I stood there, awestruck.
Drake is my greatest adventure. Autism is an adventure. Life is an adventure. I bought this piece to hang in my home. While this adventure may not be the one I thought I wanted… I’m ready for it.
This year I hope I can embrace this new adventure I believe God has set before me. Despite who I am and how often I fail, He always shows me such an exciting life. Some of these adventures are scary; yet He always shows me the color, beauty and wonder. I believe God opened so many doors for my family this past year. I can only smile when I think of all the things He will do as we continue this adventure with Drake.
I’m ready for the thrilling, exciting, daring, knock-you-off-your-socks moments. I cannot wait to look back on this adventure, sigh and say, “Wow, what a ride.” I’m ready for that moment. No, I do not want time to fly by, but I’m ready to know that everything was worth it.
This post originally appeared on “Walking With Drake.”
Want to end the stigma around disability? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.