Christopher’s Anniversary

Today marks the 5th anniversary of Christopher’s passing. It’s hard to believe that five years have gone by since he left us that early April morning 2019. It feels like just yesterday that he boarded his rocket ship to heaven, leaving behind a trail of love and heartache for us mere mortals.

On the day of his passing, I attempted to illuminate the essence of him in a post to friends, of a life lived differently because of his special needs. I was compelled to attempt to capture the feelings of parents who lose a special needs child, to help them with their own loss.

Losing a child with disabilities can elicit a range of emotions, from sadness and grief to guilt as a newly formed sense of release tiptoes in. No mother should ever lose a son, but when that child has complex issues related to his disability there is a mixture of feelings that we can’t help but feel.

As I look back on these past five years, I am filled with a mix of emotions. There are moments when I feel an overwhelming sense of sadness and loss, but there are also moments when I am filled with joy and gratitude for the time we had together.

He was a most special son, born with Down syndrome and related disabilities and he was the center of my universe. As I look back, I can clearly see how every stage of loving him enriched me in ways I might never have conceived, and I am grateful for experiences that that at first, I would have done anything to avoid. I had this child that everyone thought was a mistake, and instead, he was my teacher, and I am grateful every single day for the life this precious son carved out for me.

Here is an excerpt from the message sent on the day Christopher rode off to heaven.

My little angel is gone. I held him all night and at 3am I felt a change in the rhythm of his heart, more relaxed and regular. He had struggled for every breath up to that point, gut wrenching to

I cuddled him some more and whispered to him, listing the names of family who loved him, reminding him that he was a hero to Jason, a brother who loved him so very much, as did Kristi and little Lilyclaire. I thanked him for waiting for his dad and Emily, Micah and Ashley to stop by to say goodbye last night, and murmured stories of his best buddies Sonny and Raquel who will miss him so very much, and of his Canadian and British family who are so very proud of all that he has accomplished, including stepdad John who patiently taught him how to drive his beloved go cart in circles around the house bashing into every sprinkler head.

I whispered the names of all the angels in his life, his many friends at Opportunity Village, the celebrities, Wayne, Celine, Penn who gave so much in support of his cause, and the beautiful campuses that existed because he inspired a movement like no other. I said he could drive his go cart in heaven and it will never break down and that will make John very happy.

He felt so warm and peaceful, his heart gently beating; convincingly strong, and it appeared he would be with us forever.

At 5:57am, I spoke words no momma wants to utter, permission to let go…mommy loves you so very much, I will be OK… you can go now my beloved son.

It was in that very moment, as though he had been waiting for me to stop talking, that he opened his lovely blue eyes and looked at me with wonder as he drew his last breath. It was incredible. I shouted for Sonny and Raquel to share his transition, holding him as the warmth left his tiny body.

Our beautiful boy is at peace now.