Hello there! In honor of April being Autism Awareness month, JuJu (Julie) asked me to guest post on her blog. Having read each and every one of her posts, I have a keen understanding of how impossible it will be to live up to her level of talent so I’m not even going to try. You’ve read Skylar’s and Hailey’s stories through her eyes, so I thought today I would let you see some of Skylar’s through mine.
My name is Chris. I don’t have a cool nickname like JuJu (though I have been called Coo-Coo before). To really understand my story you have to go back to the beginning. I can distinctly remember the day in May 1998 coming home from work to our little two-bedroom apartment and Julie meeting me at the door with a grin.
Julie – “You know that $40 I spent on pregnancy tests?”
Me – “Umm…yeah…”
Julie – “Well, that last one wasn’t a waste.”
Me – “Umm…what?” (I’m sometimes a little slow on the uptake!)
From that day on I was on fire to be the greatest daddy there ever was. I could not stop thinking about all the fantastic adventures we had ahead of us. I’ve played baseball/softball since I was 7, so of course I would be my new son/daughter’s t-ball coach as soon as they were able to play. I couldn’t wait for conversations about how the world works, why the sky is blue, why I believe in Jesus, etc. Oh the times, we would share.
I also began thinking even further into the future. What would she/he be when they grew up?
No, definitely not a lawyer!! 😉
Nurse like mommy?
In the Air Force like daddy?
There were definitely great things ahead for baby Coryell. I was absolutely sure of it. I thought of her graduations, both high school and college (as valedictorian of course!); of walking her down the aisle and giving her away. Of anxiously pacing the waiting room as she gave birth to my 1st (2nd, 3rd?) grandchild. I couldn’t wait!
The day came and the doctor told us that it was time for the baby to be born. I was attending the University of Arizona at the time and had a final on that day. Julie told me that it would take many, many hours for the baby to come and I should go take my final. I walked into that classroom and found my instructor, “I’m here to take the final, but if this phone rings,” I said, holding up my 5 pound cell, “I’m outta here!” My professor realized that my mind would not be on the test and told me to get lost and take the final in a few days. I called the hospital and told Julie that I was on my way back.
2 hours later, I walked into the room holding two bags from Target.
Julie – “Where were you? I had horrible thoughts of you lying in a ditch somewhere while our baby was being born!”
Me – “I had to pick up a couple things for the baby. First, this really neat dancing Pooh bear. I also had to get the baby these awesome little sports balls. Look here’s a basketball, a football and a soccer ball!”
Julie – “What if she’s a girl?”
Me – “Girls can play football too!”
I remember watching Skylar being born. I remember saying, “This is the coolest thing I have ever seen!” I remember the cord wrapped around her neck. I remember the odd purple color. I remember the very anxious minutes while the hospital team worked on her. I remember the moment when finally, mercifully, she cried for the first time. I remember taking her home. I remember feeling shocked and astonished that they would send this little creature home with us and just expect us to know what to do. I remember the absolute and total unconditional love I had (and still have) for my child.
I also clearly remember the day, in May 2002, finding Skylar unresponsive in her bed. When the seizure began I experienced a kind of helplessness that cannot be adequately described. Holding my shaking 3-year old daughter in my arms while waiting for the ambulance to arrive was the worst moment of my life. When I became a dad, I knew that my job was to protect her; to take care of her. To lift her back up when she fell; to wipe away the tears when she cried. To fix things. The realization that this was something I could not fix rocked me to the core of my being.
Another day that remains crystal clear in my memory is the August evening of that same year when Julie told me that Skylar had been diagnosed with autism. I was in my dorm at Officer Training School at a bank of phones that the officer trainees used to call home during the evenings (cell phones were not allowed). My only experience with autism was the Tom Cruise/Dustin Hoffman movie, “Rainman”. I told Julie that everything was going to be okay. We would do what we had to to help Skylar become all she could be. Inside, however, I was thinking, “No. That’s not possible. The doctors are wrong. Skylar will be just fine.” I told myself that so often and so intensely that I actually began to believe it. Autism was a phase of life that Skylar would go through and eventually she would be “healed” and all those dreams would still come true.
At this time I had no idea of the long road ahead; of how, at times, my life would be consumed by diet and medications and treatments and supplements and therapies. I had no idea that my life would become consumed by Autism. Julie and I went in different directions following the diagnosis. She became very proactive. She bought books and did online research. She learned everything she could about this condition and how we could help Skylar. I fell more and more into denial. As the doctors told us that Sky might never speak; I still pictured her giving her valedictorian address. When she wouldn’t allow anyone to touch her; I still thought about the kiss after I lifted her wedding veil. Letting go of the dream I had of my daughter for the reality of who my daughter is was one of the hardest things I’ve ever had to do. It didn’t happen for me all at once. I didn’t wake up one day and decide, “Today is the day. I will now accept the fact that Skylar will live with Julie and I for the rest of our lives. She will most likely never get married, never have children, and never become that mythical child I once dreamed of.” Rather, it was a slow release of these expectations that turned into an acceptance that whatever the future holds for Skylar, it will be enough. It was finally releasing Skylar’s future back into God’s hands where it belongs and understanding that her purpose will be fulfilled through Him.
For those of you still struggling, I wish I could offer you a roadmap. Turn left at denial and then drive straight ahead until you reach acceptance. If only it were that easy. My advice is only this; give yourself time to grieve the loss of those expectations. Don’t misunderstand me in this. Don’t allow yourself to love your child less because of their difficulties. Instead, understand that it can be very difficult to move past what you had hoped for and this can be a very lengthy process. I can promise you that you will feel a great weight lifted off your shoulders when you finally release those expectations.
Skylar is who she is. Although Julie and I will never stop working to help her be the best Skylar she can be, I now know that that will be enough. I love Skylar for who she is. I no longer mourn a child that never was; I rejoice in the one I have.
Thanks for letting me share!
*Don’t forget to enter JuJu’s giveaway for a set of Goosie Cards. Click here and leave a comment on that post!