For long time blog readers, you may have noticed I reverted back to the old title of the blog. I also added the poem on the side bar titled "Welcome to Holland" by Emily Perl Kingsley. I changed the blog name about a year or two ago, but after Waverly's passing I want to return to the former in many ways. I know people complain about the poem as if it is the be all end of description of life in the world of special needs. I have always felt it offered a window into the start of the diagnosis. And as I begin a new phase of the journey it feels apropos to reacquaint myself with it.

Being the mother of a child who has died has taken me to a new place. I feel vulnerable and exposed in a way I have never felt before. I am confident people in the grocery store can see a huge sign over my head saying "daughter died recently - avoid". My emotions are so close to the surface that a box of Wavey's favorite snacks, the smell of her body wash, seeing her friends all elicit a swirling combination of tears, aches, smiles and memories.

I wish I could wear a black arm band like the olden days, warning people to speak gently and handle with care. Why did we leave that tradition behind? I suppose our reluctance to talk about death and grief has created the tendency to assume over a finite amount of time the mourner should be over it. I cannot envision a time I will ever be over it.

I had to notify someone that Waverly passed away this morning. He is a sweet old man who befriended us years ago at our local diner. He was captivated with Wavey and sat with us for quite awhile talking about his family. I always wondered what in his past drew him to her. Had he had a sister or daughter with special needs. Every few months he would mail her a gift - a Shirley Temple DVD or a gift card to a local toy store. He sent a gift over Christmas and this stranger's kindness was the definition of Waverly. She drew people in and touched them without ever saying a word. Her soulful eyes and crooked smile expressed love and acceptance. I sent Stanley a letter this morning thanking him for the gift, but letting him know that sweet Wavey passed away in November. I told him that we gave the gift to Oliver, her little brother who has the same syndrome. Wavey would have wanted to share with him. That is just the kind of kid she was.

Was. Is. Past and present tenses still confound me.


Melissa Janssen said…
Shannon - I love the title. I am certainly not in your situation but life with my autistic son has some parallels. Not what I planned, difficult at times, but full of joy and learning about life. I have thought of you and your family often over the holidays. I hope you find some peace and joy in this new part of your life over time. Melissa
Still thinking of you every day. This is so hard... please don't think about the words "over it" with any weight...at all.
I'm glad you're back. Thank you for sharing. I can only imagine the waves of pain that you're constantly enduring.

How is Oliver doing?
I am so sorry for your loss, I cannot even imagine the pain you have gone and are going through.

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