I Sugar Coat It

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Giraffe Cookies for Taylor

  

Imagine after numerous attempts, learning that you are finally going to have a baby! Imagine a healthy pregnancy and safe birth. Imagine the joy that fills you, your family and friends. Imagine taking your little girl home with the new title and responsibilities that she brings. Imagine immersing yourself fully into your new role and loving every second of it. Scenes of her future play in your mind like that movie you wish would never end, you know, the one where everything turns out just the way you imagined...

Imagine ten months later gathering to celebrate your little girl's life; balloons, butterflies and bubbles released in her honour, floating up towards the heavens to greet her. Hard to imagine.

Taylor was born to my dear friend Jess and her husband on July 25, 2010 and presented her wings exactly two months before her first birthday.  Most of her ten months were spent at Sick Children Hospital in Toronto, also known as Sick Kids, where she lit up her ward with her smile and spirit. It was there she was diagnosed with Type 1 Spinal Muscular Atrophy (SMA), and where she spent her final days before being summoned for angel duty.
 
Prior to Taylor's diagnosis, I knew very little about SMA. Through the knowledge I gained from Jess from her experience and scouring the net once I learned of Tay's diagnosis, here are a few key points about the disease:
  • SMA is a group of inherited diseases that damages and weakens muscles, eventually leading to death.
  • It is the second leading cause of neuromuscular disease.
  • A person must get the defective gene from both parents to be affected.
  • The most severe form is SMA type I, also called Werdnig-Hoffman disease.
  • Life expectancy for SMA type 1 is usually no longer than 2-3 years because of respiratory problems and infections.
  • Although rare, SMA may begin in adulthood, but is usually a milder form of the disease.
Symptoms include:
  • Breathing difficulty, leading to a lack of oxygen
  • Feeding difficulty (food may go into the windpipe instead of the stomach)
  • Poor muscle tone
  • Lack of head control
  • Little movement
  • Weakness that gets worse
Sadly, there isn't a cure.
I was at work when I received the message from Jess saying that Tay was no longer with us in body. There were messages in the weeks prior filled with panic and elation; flat-lining and stability. We were all warned that it was only a matter of time, but no one abandoned hope. Knowing what we knew about the disease, hope would have to be accompanied by a miracle for a more desirable outcome.
Tay put up an impressive fight and wore a smile all the while. You could not help but see beyond the tubes connecting her to numerous machines, and be happy in her presence. There was something so other-worldly about her, and it resided in her eyes. I know now we were all in the presence of an angel.
Just as impressive a fight was the one waged by Taylor's mama, Jess. What would bring most to their knees and keep them there in submission, catapulted Jess to move mountains in ways I had never before seen, and all without losing her composure.

Bravery beads from SickKids Bravery Bead Program.

I wrote this post in an effort to bring awareness to Spinal Muscular Atrophy, but more importantly, in honour and memory of a special little girl whose time here on earth was shortened by this disease.

Although short, her life touched all around her and brought to light a disease most of us knew very little about. With eyes as bright as stars and a smile that warmed our hearts, Taylor has greatly impacted our lives.
She’s an angel now; a part of every sunny day and star-filled night for eternity.
Jess, my thoughts and prayers are with you on this day and always. I speak for a number of people in saying, Taylor will forever remain a part of our lives. Thanks for allowing us to be a part of hers and yours.

Taylor's favourite toy was a stuffed Giraffe. I think she would have been amused by these cookies I made just for her. Perhaps they can be shared with the other wee angels.

Please visit Families of SMA Canada to learn more about the disease and if you can, make a donation.

Sources: curesma.ca, PubMEDHealth.com
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Reader Interactions

Comments

  1. Paula Kelly-Bourque says

    Thank you for bringing this all to brief of a life of beautiful little Taylor to our attention and for helping to raise awareness and funds for SMA.

    Reply

  2. Kavita says

    The memory of Taylor and her angel face along with her purple clip is still alive in my heart and will always be. Her little life and Jess's endurance has touched and changed me forever.
    Jacquee, thanks for your tribute to Taylor's memory and the giraffe cookies...to bring a sparkle to Taylor's eyes. 

    Reply

  3. Jessica Venters says

    Jacquee,  Thank you for your beautiful posting in honour of wee Angel Taylor.  She truly was amazing, and I was simply a very lucky mum to have been able to part of her amazing life and part of her tremendous circle of souls earthly and ethereal.  I could not see the pictures of the giraffe cookies until today when I have full access to internet, and they have made me cry.  Taylor would have, and am sure, giggled when she saw them, and likely put out her hands to grab as many as she could.  Your talent...simply amazes me.  You are an artiste my dear...  Much love from Mama and Angel to you and yours.

    Reply

  4. Dawn says

    thank you for sharing
     

    Reply

  5. Tracy says

    Jacquee, thank you so much for this posting.  It hurt my heart, being so far away and all, that I could not physically be there for Jess and our wee Munchie, but to know she had another friends to support her during this time meant the world to me.  The cookies are beautiful and I agree, Taylor would have stuffed her little hands with them, but then would most definitely have shared them - that's just how she was. 🙂

    Thank you again for your beautiful tribute

    Reply

  6. Esther Lee says

    This was so beautiful yet heartbreaking. She looks so precious, but she is in such good care right now where no harm or sickness or disease will ever come near her again. You are a good friend and so supportive of this family. May God bless you all during this time, and may her memory always live on.

    Reply

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