Reminders

There is a look that I think many parents who have children with disabilities notice when they are out and about. It isn't one of disgust or intrigue. It is one of remembrance. I have seen this look often throughout my years mothering Waverly & Oliver. It is first identified by a head tilt. Then a slow smile begins to develop and the eyes are the final clue. You are able to almost see the memory of a loved one reflected back.

It took me quite a while to recognize this look. I was a protective mom, trying to block the stares or reposition the kids when I noticed too much interest. I remember older women approach us and speak  of their loved ones. At times the stories were filled with the pain of how things used to be. Children sent away to hospital wards or homes with staff who could care for their special needs.

To be honest, their stories were at times disruptive. I just wanted to be "normal" and then I found myself in Costco consoling a weeping lady. Or sitting at Silver Diner and speaking with a retired gentleman who couldn't get over Waverly's resemblance to someone he loved dearly.

I am now one of the head tilters. I spot a wheelchair and have to stop myself from bolting over to aggressively make contact. The sound of a feeding pump is music. Your anxiety ridden child is a beautiful reminder of what was. And what I wish could still be. I try to contain my desire to shout that I am a member of the club. I get it. I see you. My eyes reflect so much love through my tears.




Comments

Anonymous said…
I discovered your blog because I know a family who has children with Sanfilippo and they shared a post on social media years ago. I have been following your journey every since. I typically do not leave comments but I feel compelled because when I receive emails of a new post it stirs my spirit. You are such an amazing writer that I feel like I am a part of your journey. Your words touch me like no other and I love you for it. Thank you for continuing to share your thoughts with the world even after your tragedy. I cannot adequately express how much it means to me but I know that your words make me feel closer to God simply because he chose you to be the mother of Waverly and Oliver. He knew that you could handle it because He created you to handle it. Oh, how God must love you! I know He loves us all but you are in a special category. Because of that I envy you despite the heartache you have endured.
Crystal Hinman said…
I wish there was a way to connect to more rare moms in real life. Those spontaneous interactions with parents in the same
Place don’t ever happen. So much internet support but not a lot of ability to get together and hug each other and our kids and mourn together. I know we are at different places but I would still enjoy an espresso with you. Much love to you and the family.
The past few posts touched me deeply- THEY ALL DO- but I was so wrapped up in life I didn’t post a comment.

Your Mother’s Day Post was one that rested heavily on me. I am a mom who has been blessed with two incredible children. Yes, some days were hard- sleep training, terrible twos, potty training, dealing with fevers and stomach bugs, holding the line when a behavior is undesirable, removing a privilege...you get the idea. By the way, my babies are now adults. Aren’t you glad I stopped my list of all the “ hard day” experiences I had to endure? I could have gone on and on....how did I EVER do it?! I am amazing. I so deserve Mother’s Day.

Mother’s Day is all about YOU Shannon. I was witness to the many celebrations of your experiences with Waverly and Oliver. There were the sweet interactions between Oliver and Waverly as they played at home....their love of the beach, baseball games and favorite music, Minnie and all things Disney-oh I could go on and on....You shared those experiences with such delight and pure love of your children. All the time knowing that these were the best parts of being a mom.

You shared many dark moments too- I can bring those to mind as well. Experiences of truly hard days, nights, weeks... and the constant reminder that there was an inevitable loss looming that no amount of love could prevent. This was never shared with any self pity, or resentment. When I think about you - your joy and love for your children and the deliberate normalcy you chose to bring to their lives - that’s what I remember.

Mother’s Day is all about YOU Shannon.

Re: your latest post

Your head tilt and your eyes and your knowing....I have to believe it is the secret handshake of the “Members Only Club” that you were chosen to be a part of. It is your right and privilege to use it to bring strength to those in your sacred membership.

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