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!
JuJu

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?

Doctor?

Lawyer?

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!

Chris

*Don’t forget to enter JuJu’s giveaway for a set of Goosie Cards. Click here and leave a comment on that post!

Hello? I Need a Band-aid!

It’s time for another installment of No Filter Friday.  This is the time that I love to share things that Skylar has said or done that have left us red-faced, laughing, and sometimes speechless.  If you are new to my blog or missed previous posts, you can click here for a complete list of No Filter Friday stories.

Our story for this Friday happened in 2006.  For those of you who don’t know, Skylar not only has Autism, she also has Epilepsy.  In January of 2006 Skylar had not had a grand-mal seizure in almost 4 years and her neurologist suggested that we try to decrease her seizure meds.  We did not give her the mid-day dose of Depakote that day (a Thursday) and on Saturday morning I awoke to find Skylar seizing.  I immediately called 911 and they had to give her a LOT of medicine to stop the seizure.  In fact, the ER doc noted that she had been given enough medicine to “sedate a horse”.  When Skylar seizes, she does so with gusto!

Skylar did not wake up until later that evening.  When she did start to come out of the sedation the first thing she said was “I have a BAD headache”.  The doc said “I bet she does.  She had a LOT of medicine.”  She had been given benzodiazepines, which are not usually recommended for individuals on the autism spectrum as they can cause severe hallucinations.  Skylar had been given them before and we knew this, however we knew she wouldn’t stop seizing on her own.  Due to the severity of the seizure and some breathing issues they decided to admit her for observation.  Once she was settled in her room, her nurse came in and asked Skylar if she could get anything for her.  Skylar’s response:  “I still have my headache so I could really use a band-aid!”  The nurse giggled, said “Okay” and walked out of the room.  Skylar has always been a huge believer that band-aids help everything!  If she had a tummy-ache she would put a band-aid on her stomach.  We went through a box of band-aids at least every week.  I would rather just give her a band-aid than give her medicine.  If band-aids gave her comfort that was totally fine with us.

More than a half hour passed when the nurse came back into the room and asked how everything was going.  Skylar looked at her like she had 2 heads.  She tapped on her forehead and said to the nurse:

“Hellooooooo?  I NEED a band-aid!!”

The nurse was stunned.  She looked at me and said “Oh my!  She was serious about the band-aid?”

I said “She sure was!  I can assure you that if you just bring her the band-aid, she will not ask you for another thing during our stay.”

The nurse said “I am so sorry!  I totally thought she was kidding.”  She ran and got the band-aid and gave it to Skylar who happily put it on her forehead.

The next morning, the neurologist who was on-call came in to see her.  He saw the band-aid and said:

“Skylar, why do you have the band-aid?  Did you hit your head?”

Skylar said “Why do you think I have a band-aid on my forehead?  I already told the nurse….I HAVE A HEADACHE!!!”

The doctor immediately started laughing and said “Wow!  I wish that band-aids could fix everything like that!”  He flipped open her chart and turned to me and said “That’s right.  She has autism!  I should have known by her matter of fact response.”

I quickly apologized and he said “Are you kidding me?  I wish that I could be that brutally honest with people.  It is really refreshing!  She totally made my day!  I LOVE HER!”

We were so thankful for the comedic relief that Skylar gave us during a time that was extremely scary and emotionally draining.  We were also thankful for a doctor that had a wonderful sense of humor and was completely understanding and accepting of who Skylar was.

I hope that you all have a great weekend!

JuJu

*I was nominated for one of Babble’s Top Autism Spectrum Blogs.  I’m totally honored by this.  If you read my blog and you have found it helpful I would appreciate your vote.  I am currently in the 50′s.  You can click here and search for I Am JuJu, then click on the “I Like This” icon.  I believe you can only vote for one blog per computer/device. Thank you so much for your support!  I love sharing our journey with others and I truly hope that it brings hope and understanding regarding Autism.*

When Guilt Creeps In

I know that all parents must deal with a certain amount of guilt when it comes to issues with their children, but as a parent of a child with special needs, the guilt can be overwhelming at times.  So many times I question the things I’ve done and I find that too many times lately I’m asking “Is there anything I could have done differently?”  

When the Disney movie Meet the Robinsons came out years ago, the main theme of the movie was “Keep Moving Forward”. I love this thought and I try to apply it every day.  I try not to look back and dwell on what happened in the past as there is no way that I can change those things, but some days the guilt just creeps in.

The guilt finally poured over into tears this past Friday as I was returning home from Phoenix where we had just finished Skylar’s Sleep Study.  The study was brutal to say the least.  I knew Skylar wasn’t sleeping well, but I had no idea how bad it was until this overnight stay.  I’m used to Skylar waking me up a couple of times a night with nightmares and when she gets into bed with us she is so restless.  During the sleep study she was restless as usual and awoke multiple times during the night.  The different alarms sounded through the night and I slept a little less than 3 hours total.  The alarms didn’t wake Skylar up, but unfortuantely her Epilepsy has caused me to be a totally light sleeper and the littlest noise makes my eyes pop open. I’m interested in seeing the official report on the study hopefully by the end of this week.  I must say that our sleep tech Stephanie was totally wonderful.  She was so patient with Skylar and I’m so thankful for her sweet personality. 

In addition to Skylar’s sleep issues, she has always had poor muscle tone and we didn’t really realize how bad those issues were until this year.  The Autism and Epilepsy have always brought with them an overwhelming set of issues that have required so much focus, so the muscle issues have been overshadowed until this year.  As Skylar has grown, the issues have become even more pronounced.  We are now awaiting what we believe will be an additional diagnosis of Cerebral Palsy (CP) for Skylar.  Looking back, I feel as I though I missed so many clear signs and for this I feel horrible.  I can’t stop thinking about how much time we have lost getting her the additional help she needs. 

On the way home from Phoenix Friday afternoon I finally just verbalized to my mom what I’ve been feeling for quite awhile now. “I feel like a failure!  I missed so many indicators that things were not right.  My failure has led to valuable time lost that she could have been receiving therapy.  I didn’t push hard enough to get further testing done with her sleep issues.  I just really dropped the ball and I just feel so guilty!”

My mom is one of the few people that I share these types of feelings and struggles with.  She cries with me and I know that as my mom and Skylar’s grandmother, she hurts with me.  She was there when Skylar was born and she was there when Skylar was diagnosed.  She has experienced my greatest joy and my greatest sorrow.  I’m so thankful for that.  And I’m thankful for the words that she said following my tears.  She said:

“Julie, you’ve had a lot to deal with as a mom.  You have done a great job.  You should not feel guilty for what is in the past.  There is no sense in looking back and questioning what you could have done.  We know now and we need to move forward from here.  We are going to do whatever we can to help Skylar!”

And even though I know feelings of doubt and guilt will creep in from time to time, I know that ultimately I need to:

-Look ahead. 

-Learn from my mistakes.

-Share what I’ve learned with others so that they may learn from them as well.

AND

- “Keep Moving Forward”!

Blessings,

JuJu