Happy Cinco de Skylar!

Ten years ago today was by far one of the worst days of my life!  I had awoken early as I was singing at church with my friend Louanne.  I went in to check on Skylar and found her unresponsive.  I immediately picked her up and brought her into the living room.  Within minutes she started seizing, 911 was called, and we were swept away by ambulance to the hospital.

Chris, Jenny, and I sat in a darkened emergency room waiting to see the pediatric neurologist.  She had already had a CT and an MRI.  As we waited to hear whether a brain tumor or a structural abnormality were the cause of the seizure, I prayed that the Lord would equip me for whatever road we would walk.

Outside of our room at the nurse’s station, there was music playing, streamers, and chips, salsa & queso for Cinco de Mayo (we lived in Tucson).  I remember saying “I will never, ever think of Cinco de Mayo without remembering this day!”

So last year on Facebook I mentioned that each May 5th we celebrate a sweet girl who has overcome so many different obstacles.  We thank God for each and every day that He has allowed us to have her.  My sister-in-law, Diane quickly replied “Happy Cinco de Skylar!”  I loved that so much!

So today I wish you a Happy Cinco de Skylar!  Please join us in celebrating an awesome kiddo who has brought so much joy to our lives!

Make it great!

Guest Post: Skylar’s Journey From a Father’s Perspective!

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!

Skylar’s Story-Part 1 (Her Regression in Pictures & a Few Words)

I get asked by a lot of people if we saw a regression in Skylar or if she had always shown delays in many areas.  My answer isn’t cut & dry.  Skylar had some motor delays and I believe those were due to the birth trauma she had.  She sat up right on schedule.  She didn’t crawl in a traditional sense.  The best way to describe her crawling was “scoot swimming”.  She pushed off with her back legs and pulled with her arms.  She looked like she was doing the breast stroke on the floor.  She didn’t walk until she was 15 months.  Even though her motor skills were somewhat delayed, her language developed early on and she said many clear words and 2-3 word combos.  She said: thank you, please, more milk, my ball, mommy, daddy, Becca, baby, grandma, etc.  The best way to describe the changes we saw in Skylar is to show you in pictures.

Skylar was an extremely happy baby!  She had great eye contact.

She also loved to snuggle and be held.

Doesn’t Chris look like a teenager in the picture below?

She was so bubbly and laughed all the time!  We used to joke that her personality was as crazy as her hair!

She would play in this playhouse for hours.  I loved listening to her talk and pretend to pour our dog Rex his favorite tea.

Then things started to change.  She was extremely unhappy and stopped using words.  She stopped smiling.

She lost all eye contact.

It is hard to explain the shift that took place in her.  The best way I can describe it is that she lost that “gleam” in her eyes!

While all the other kids were upstairs playing together with their new toys from Christmas, Skylar played by herself.  She played with this train for hours on end in my parent’s basement.  She would start & stop the train over & over & over.

No amount of hollering her name or waving things could get her to look at a camera.

She did not like to play with other children.  But she would play with my niece, Becca.

She seemed to be trapped in her own little world.  I so longed to know what she was thinking.  I just wished she could answer me:  “Are you sad?  Are you lonely?  Are you happy?  Are you confused?  Are you hurt?  What’s wrong?  Please talk to me!”

As years went by we saw improvement.  More hugs.

More smiles.

And improved eye contact.

It is tough for me to look at the pictures of Skylar’s regression.  However, as I look at these pictures, I see the tremendous progress she has made over the past 10 years & I am SO encouraged.  She has come such a long way!  She’s doing things that her diagnosing doctor said she would never do.  Here she is competing in her school spelling bee just a few weeks ago.

And singing the solo in her Christmas concert this year.

There are so many people who we know are part of the tremendous progress she has made, including this woman, whom I wrote about here.

And these people , who have never given up on her & have been with us EVERY step of the way.  We could not have gotten through this without our family!

And last, but certainly not least…YOU!  We are so thankful for all the support, love, encouragement and prayers that we have gotten from so many of you.

It’s been a long and tough 10 years, but I can’t wait to see all the things that this sweet girl is going to accomplish in the next 10!

Thanks for walking this road with us!

And for those of you who are just starting to walk this journey or are even a few years into it, my advice for you is this:  “Never, ever give up!  Don’t let anyone tell you what your child can or can’t do!  Also, pull out your camera and document your journey.  I am so glad that even during a lot of sad & stressful times, that I took pictures.  When I feel discouraged all I have to do is pull up these pictures and see how far we have come!

This is one big reason that I do Project Life.  I love documenting our every day and seeing her accomplishments and her progress.  You can read about what Project Life is here.

Make each day great!