I hear a lot of people say, “Oh where did the time go?” or “When did this happen?” when their children turn a certain age. I know I was guilty of this when the boys both entered Kindergarten and for Joey, Middle School. Today Amelia turns five and this is the furthest sentence from my lips when I think about her life and the extraordinary days we get to spend with her.

Infant 1



Not everyone is given the magical gift of raising a child like Amelia. Nothing is taken for granted; EVER. Not a smile, a squeal, or a squirm across the living room floor. Life has slowed down because of Amelia and it has been fascinating to see the world through this new lens.






Many people cannot even begin to understand what life is like appreciating each and every moment with your children. Parents believe they have years to witness the accomplishments of their babies. And they know that each achievement will be bigger than the next.  So in their minds they say things like, “I can’t wait until they can walk, talk, enter school, play a sport…” There will always be something big to look forward to tomorrow.  I know. This was me.

Now, this is me. Glancing at Amelia, I see a small five year old who cannot talk or walk. Looking closer, I see a half smile, her raised eyebrows, and her wrinkled nose, because she has missed me while I was at work! Seconds tic, and her smile broadens, her arms and legs move wildly, and shrieks of excitement escape her pouty, beautiful lips. Whipping her pigtails from side to side, I can’t help but chuckle at this welcome dance as she greets me into her world.  Suddenly fixated on her eyes, I begin to wonder what she is seeing in me as she looks deep into the quality of my life and  makes me question what I have accomplished with all of my “normal” abilities. One thing I know for certain, it is a privilege to raise such a mysterious and miraculous human like Mia.







What an adventure this has been so far having that blindfold taken off and seeing the present for what is; the only guarantee. The ripples Amelia has made in this pond of life have reached farther and made more of a difference than most make in a hundred years! Happy 5th! We all love you baby girl!

Transplant Update: Both Amelia and I have had many tests this past year and we both have passed all of them. Our last update was that we have at least four more weeks until she needs to be seen again to determine a date for the transplant. She continues to thrive and her health has been amazing! We are hoping to hold out until Spring so we will be free of flu and viruses to help her recover.

“Thousands of candles can be lighted from a single candle, and the life of the candle will not be shortened. Happiness never decreases by being shared.” – Buddhatest

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5 Responses to Happy Birthday Momma Mia!

  1. Ross says:

    Great post Chrissy, I couldn’t agree more with your sentiment – and Happy Birthday Amelia!!

    So happy to hear the transplant plans seem to be moving in the right direction too, you guys sure have come a long way since he start of last year.

  2. Sheral Jackson says:

    What a great post Chrissy! Keeping my fingers crossed that you both keep on the path to transplant free from germs and setbacks! Please let me know if I can do anything to help once you guys get your date!


  3. Kevin Carr says:

    Very nice, Chris. Mia is two years older than you were when we first met, and I’m honored to be a part of your family. Great sentiment of treasuring all the time we have, you never know where that time is taking you, so enjoy the ride! Love you all.

  4. Letty says:

    I haven’t been on this site in a while. I remember all the crying I did when I was reading about the hospital incident, and am so glad for all the changes and progress that have come since then. You’ll are doing such a great job. Thank you

  5. shirley bidnick says:

    Happy 5th Birthday Amelia. Such a mature expression, and a fantastic family photo! I like the comment you made, that since Amelia, your life has slowed down. Maybe that is one of the wonderful things WHS does. It moves us into the slow lane. Suddenly it doesn’t make sense to try and keep up with the rest of the world. Maybe these children help us come to our senses and slow down.

    Do you know that according to the UN Convention on the rights of Persons with Disabilities, a person with disabilities is legally entitled to the same health care as everyone else. When I first read about Amelia, I didn’t know that. Canada did not ratify the convention until 2010. I only began to pay attention to the convention recently, but I think of Amelia as I read.

    I look forward to more postings about her.

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