Tuesday, January 20, 2015

A New Adventure




2014 brought so much change into my little world.  It is amazing how life can knock you off your feet and place you in  whole new galaxy when you least expect it. I should be accustomed to these life altering events.

Almost eleven years ago I held my nine 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 literally clenches.  It was so long ago, yet it wasn't.  Losing Lexi changed me...for the better.  I was 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 is 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 cannot 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.   I knew Drake was autistic a year before he was diagnosed.  I am the classic Google maniac and knew everything about autism before I expressed my fears to anyone else. I had to convince 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 fix his disability.  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 that 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 that I am okay with him having autism.  Yet, here I sit, without my crystal ball. I do not know what the future holds and this is the only part of autism that I abhor.

In the the few months since Drake's autism diagnosis I have gone from a state of constant worry to "mama on  mission" mode. I've put my teaching career on hold and many other sacrifices have been made to make sure Drake can receive 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-therapy that is working.   He has occupational and speech therapies weekly as well.  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 is currently non-verbal, and he has a few stims  that drive me up the wall ( teeth grinding).  Otherwise he is so sweet and accepting of most situations.  He isn't rigid about routine and although he is 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 is happiest at home or in predictable environments...aren't we all?    I am so in love with Drake's ever emerging personality and I cannot wait to see how much progress he is going to make this year.




Recently I had a 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 of "art" to hang in my home.  While this adventure may not be the one I thought I wanted...I am ready for it.  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 year I hope I can really embrace this new adventure 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.  God opened so many doors for my family last year.  I can only smile when I think of all the things He will do as we continue this adventure with Drake.

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."
2 Corinthians 4:16-18




10 comments:

  1. Thanks for your honesty Jill. Your blog is an inspiration to me. We each have adventures in life that we can go for, or back awat from. Thanks for your determination to go for it. We all grow through our fears provided we face them. May God be our guide.

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  2. It is difficult to find the words to say how much I love this post. In so many ways you capture my feelings about our adventure, as well. Really, really, love this.

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    1. I think this is what I love most about blogging...finding those "me too" people. Thank you so much for your kind words. Enjoy your adventure!

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    2. Finding those "me too" people is what I love most too!
      Such a raw story, thank you for sharing. The unknown is the hardest part of autism for me.

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  3. Last night I watched a PBS story about an autistic guy who is an artist. He is mostly non-verbal and his art is amazing. He works with paint -duct tape-and press on letters and numbers. His works are beautiful. Does Drake like doing art?

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    1. Drake is not really interested in art just yet....he does love to finger paint a bit though :)

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  5. Perfect word to describe how life is with my Leo, love this post, thank you

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    1. Thank you for reading! Blessings to you and Leo!

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