Friday, January 30, 2015

my sunshine

I can't remember the instant I first heard the phrase... Developmental delays.

But I can remember the feeling...relief. Compared to all the wicked things that appeared during my anxiety-driven, late night google binges, this was one I could accept with grace. Developmental Delay I could tackle. And full throttle was the only speed at which I would accomplish this most important task God has ever entrusted me with. 

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My precious first born son Greyson was twenty two months old. Each day I could see in his eyes that he was drifting further and further away from me. I was doing everything I could to reach my arms out as far as possible to catch him -but my fingers could only stretch so far.

I would sing to him as I rocked him to sleep. 

You are my sunshine. My only sunshine. You make me happy. Your name is Grey. You'll never know, how much I love you. Please don't take my sunshine away.

That last sentence almost always brought tears so fast they leapt from my eyes. You see they weren't simply song lyrics, they were a desperate plea screamed deep from my gut. Born from fear and pain and anger and confusion. That's what it felt like- someone was stealing my Greyson's sunshine and I was the worst mother in the world because I had no idea how to stop it. 

Delay: noun 1. A period of time in which something is delayed or postponed. 

A delay can be fixed. A delay implies- we may be late, but we will eventually get there. So we dove right in, eager to catch up. Twice weekly Early Intervention preschool, twice weekly Speech Therapy, 30 hours of at home Applied Behavior Analysis and play dates with typical kids. 

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We found a Doctor who prescribed daily B-12 injections, probiotics, fish oil, digestive enzymes, hormone creams and a long list of herbs and enzymes, vitamins, and pills I couldn't even pronounce. I felt like a chemist and I hoped I was pouring the perfect concoction that would have the power to bring Greyson's sunshine back.

Months went by and the gap between what Greyson was doing in comparison to his peers grew exponentially bigger, as did the sick feeling in my gut. I could barely stand to watch kids his own age play at the park because it reminded me what he wasn't doing. It reminded me that I was failing him. I needed to do more; I just had no idea what more even looked like.

For a year, we chased that delay Monday through Friday. Sometimes from 8:30am until 5pm. Through times I wished we were actually at the park. Times when kids his own age were napping. But no matter how fast we ran, that delay- it always ran faster. And one day, soon after Greyson turned three and was diagnosed with autism- it hit me. Our delay may never go away.

When it comes to Developmental Delays- delays can also mean never. My son may never speak. He may never call me mom or be able to tie his own shoes. He may never give me a hug all on his own. He may never attend a regular school and I may never ever be a regular mom. The kind of mom I thought I had signed up to be. And the pain of all of that hurt so bad that sometimes I wanted to die. The sadness burrowed deep in my bones and consumed me. My sunshine was gone.

And it took time. And a patience I was forced to adopt. I stopped setting the finish line so far out of reach and instead set it for the end of each and every day. We stopped relentlessly racing and instead took our time and enjoyed the adventure. The whole of life isn't a sprint, it is a life-long cross country glide. And when I actually slowed down I realized the scenery was profoundly beautiful. I realized Greyson is exactly the boy he is supposed to be and I am exactly the mom I was meant to be. I realized how lucky I was to be living this sometimes painful story.

My son showed me how beautiful our imperfect life really is.

We started to take things a day or two at a time because the future felt too scary and unclear.  I decided we would no longer wait to be happy. We wouldn't wait until Greyson started talking, or mainstreamed at school or got a job- he was only three years old and the future can still hold absolutely everything

Greyson is now five years old. He still doesn't really talk, and he won't be mainstreaming in a typical classroom anytime soon. And as far as I know- he doesn't have any job interviews lined up either. And you know what? I don't really care. He and his brother bring me a joy I never knew was possible. 

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I look back at our beginning with respect, sadness, and joy. I wish someone had told me that delay could also mean never- but that we would still be okay. But who knows- maybe I wouldn't have listened. Some things are best when we live them and figure them out all on our own. And now I realize- Greyson's sunshine was never gone. I just had to be willing to look beyond some clouds.




29 comments:

  1. There you are...in my head. Again! ❤️This literally made my heart clench, yet gave me joy.

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  2. Yes! Living in the moment instead the what-ifs is freeing!

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  3. Beautiful! Greyson IS exactly the boy he was meant to be. You really peeled back the layers of your heart here. Thank you for sharing!

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  4. Maureen from ChicagoJanuary 30, 2015 at 1:37 PM

    Love this! Thank you.

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  5. :)
    Because it's all good. Because God challenges our ideas, because life wouldn't be full if these boys didn't come into our lives.

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  6. :)
    Because it's all good. Because God challenges our ideas, because life wouldn't be full if these boys didn't come into our lives.

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  7. Love this post. Do you still have them on gfcf diet?

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    1. Yes, it helps them both. Greyson for behavior and Parker for tummy issues.

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  8. Do you still do the diet and supplements etc?

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    1. Yes- on the diet. We do some supplements. Fish oil and sometimes probiotics only now.

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  9. Thank you for sharing your heart...yet again. Letting go of what we thought motherhood would look like. Stop looking to what they future may or may not hold and just being in the right here, the right no

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  10. Sorry, hit send too soon. Anyway, that last line of being willing to look past the clouds to see what is already there right in front of us...that line pierced right to my heart and soul. Thank you

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  11. I wish the parents of every autistic child could read this! Sending a big hug......Cheryl

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  12. Your boys are beautiful. Thank you for sharing your stories.

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  13. Hi Chrissy! It's Leslie in cold MN! I accidentally found your blog while looking for blogs about preemies. My kiddos have different challenges but I sure can relate to the things you talk about. Plus your kids are darling and your photography is beautiful although your CA weather makes me insanely jealous- it's currently 2 degrees. Please keep writing, I'm hooked!

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    1. Thank you and and welcome! I hope you found the birth story about sawyer on here. That's my best friends 19 month old- born at 31 weeks. You are so right for so many of us humans! The stories are different but the heart and emotions are the same. Big hugs- chrissy

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  14. You are a wonderful writer. You put into words what I feel but can't express. I don't have an autistic child but your wisdom applies to all of life. Thanks.

    Nancy

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  15. I have a 3yr old with Spastic Quad Cerebral Palsy. This really reasonated with me. Your boys are BEAUTIFUL and I love your blog. You have a way with words.

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  16. I've followed your blog for awhile and just wanted to tell you how much I appreciate your insight and thoughts. Your posts are well written - and you photography is beautiful! But mostly I come to stand in awe of all you are doing for your boys and how completely you love them. I have a son who was diagnosed with apraxia and for many months we thought he would get a diagnosis of autism too. It was a very long, scary road and it has been comforting to read your open, candid thoughts and to see myself in so many of the same situations. Thank you for opening your heart and sharing your journey!

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    1. Wow- thank you. That made my eyes well up. Glad you can see and feel the love. Big hugs. Chrissy

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  17. Chrissy, I just wanted to share with you about my friend. He has autism and does not talk, but he communicates using an iPad that he types with. He has now graduated with honors from high school and is attending a private liberal arts college. In kindergarten, no one was quite sure what auditory information he was able to take in and process; talking to him now, he is one of my only friends who even remembers kindergarten. I have been so blessed to have this amazing guy as a classmate and as a friend.

    I just found this blog and I am excited to watch Greyson grow and do great things.

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    1. That is INCREDIBLE!!! What a great story. Thank you for sharing it with me!!!

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  18. Thank you for sharing that hope is right where you're at and something to wait for, too. You don't have to have all the things you want for your child happen right now to be happy...I have a little guy with autism (9 years old), too and while we can plan for his future, I don't want to be consumed by it and let it steal me of the joy I can experience right now.

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  19. I don't know which had me crying more- this post or the last episode of Parenthood! I have a picture on the wall in my son's room that simply states "You are my Sunshine." I love the reminder to look past the clouds because autism can make things seem dark at times.
    Thank you-
    Colleen

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  20. I am an Instgram follower and LOVE your Photography and have now become a follower on your blog, Thank you for allowing both. I don't always comment a lot but just could not help myself on this post. The whole post and the way you express yourself with words is something I wish I could do. WOW !! I was in tears when you ended the post with "You are my sunshine" which I have sang to my babies and grandbabies, however you made me think of it in a very different ( but beautiful ) way! THANK YOU !

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  21. Thank you for the post. I relate so much to it. When my son was two he was diagnosed with apraxia of speech and I leaped on to that with acceptance and great energy. When that diagnosis just couldn't account for the extent of behavioural issues we found out autism was there too. This was tougher, I knew that the problems we were dealing with weren't going away. The delays got too hard to pretend to keep up in main stream school and this year my eight year old is repeating a year. Of course with the delays in so many milestones, we notice and celebrate the milestones when they are achieved.
    Bronwyn

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