Remembering Sydney Grace…
I’ll never forget the phone call… Kami called to tell us they had been up all night but “he” would be coming any time. Fifteen minutes later, Tim called stating “it’s a GIRL!”. I was like “what?” I was like “huh?” So much for those ultrasounds! This precious gift from God immediately stole the hearts of two of my dearest friends.
Since they had been expecting a boy, they had to do a little readjusting in the name department. They chose Sydney as her first name but what about a middle name? Along with Grandma Cindy, they bounced names around the room until suddenly, all at once, it came to them. Grace; her middle name had to be Grace.
Those two proud parents brought their baby girl home and loved her like no other. Then, shortly before the adoption paperwork was signed, Tim and Kami found out their precious baby had Spinal Muscular Atrophy.
Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. As far as intelligence goes, most SMA patients are unusually bright and sociable. click here for more information on SMA
As time passed, Sydney’s muscles weakened. This disease robbed her of the ability to crawl, stand, walk and run. At least that’s the way many of us saw it. But Sydney taught us that it’s all in the perspective. You see, if you asked Syd, she’d tell you she was the fastest in her class! Her classmates had a blast chasing her around at recess. What difference does it make anyway, how somebody gets around? If they use their legs or a power chair? It didn’t matter to Syd; she was the fastest!
My girls loved hanging out with Sydney! They’ll always remember the time we stayed overnight with them at Lake Macatawa. What treasured memories!
Syd was SO excited to tell the girls bedtime stories and wanted to stay up ALL night long!
We ate at the BEST Mexican restaurant in Holland and had a really good time!
My oldest daughter loved combing Syd’s hair and of course Sydney had no problem being a princess!
My youngest adored Sydney. She read to her every chance she got and on THIS trip, she was even able to get in the water to swim with Sydney.
In May of this year, Sydney came down with a fever totally unrelated to her SMA and had to be taken to the hospital. We visited her late that night along with many other members of her family and the pastor of our church.
Everyone prayed and prayed and prayed. We left the hospital thinking she’d be okay because she had pulled through so many difficult situations and she seemed so peaceful while we were with her that night.
The phone woke me up out of a deep sleep very early Mother’s Day morning. I was so groggy, I barely realized it was the phone making all that noise. When I heard Kami’s voice, I was immediately jolted into awareness and though I heard her clearly, I just couldn’t digest her words. My fingers won’t type what she said that night, but her words will forever be engraved in my heart.
What do you do? What the heck to you do when two of your best friends have to bury their child? We brought them food, we prayed and I did what I always do to sooth my soul – I painted.
When Sydney passed away, I wanted to make something special Tim and Kami could keep as a remembrance. An old ladder back chair had hung in our garage for years. It had the most amazing lines, but I never had the right design for it until then.
I cut my hands left and right attaching the hard wire mesh to the chair but I was determined to add something strong and solid.as
Since I didn’t want anyone else to get cut in the future, I wrapped the top edge with a very thick copper wire for protection.
Then I messed around with a million different colors to get just the right combination. Finally, I stepped back and said, “Yep, this is it! I think Sydney would approve”.
I lined the wire with plastic, concealed the plastic with moss then filled it up with several buckets of potting soil. Then, I chocked it full of beautiful, colorful perennials that I thought Syd would enjoy in her yard. Just can’t do the typical funeral flower thing, it’s just not practical.
I painted then attached a metal butterfly that was once the lid to a tin can. Syd LOVED butterflies, so the butterfly was the icing on the cake. It is a happy reminder that Syd is now free from all the struggles, surgeries and pain she endured here on earth. I deliberately placed the butterfly at an angle and painted a little trail to show her fluttering away. She’s in a better place now, dancing in Heaven with Jesus.
Sydney left our world when she was only 6-1/2 years old. She was so young and yet lived a life that was SO full. Despite her disability, Syd understood what was important in life. She was joyful, witty and above all she knew Jesus.
Even in her absence, Sydney continues to change lives. Her parents started a fund in her memory to raise money for other special need’s children in Sydney’s school. It’s called the Never, Ever, Ever Give Up Fund.
So, what is the definition of grace anyway? I looked it up today and here’s what I found…
Seemingly effortless beauty or charm of movement, form, or proportion.
A characteristic or quality pleasing for its charm or refinement.
A disposition to be generous or helpful; goodwill.
A favor rendered by one who need not do so; indulgence.
Divine love and protection bestowed freely on people.
The state of being protected or sanctified by the favor of God.
An excellence or power granted by God.
Yes, Grace. The perfect middle name. We love you Sydney Grace. You’re forever in our hearts and today, we’re all decked out in purple to celebrate your birthday!
Hauoli La Hanau! A hui hou!
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Thanx for stopping by! A hui hou!