Last week I had a moment that caught me by surprise; one of those times where your mind goes completely blank, the scenery around you freezes and a single point of focus consumes your every thought.
Every Wednesday I try to take the kids over to my Mom’s house for dinner to hang out with her and catch up on current events and her planning for retirement. We struggle at times to keep 3 kids under 8 in check, frequently needing to manage someone’s crying, a few time outs, and Kendall’s innate desire to explore and rearrange all of my Mother’s possessions. A most challenging affair when the intent is to share the company of loved ones.
Not out of the ordinary, I frequently walk past a wall with a collage of pictures that my mom has amassed over the years. It’s one of these big square picture holders that allows you to randomly place pictures anywhere you see fit. This 2×3 foot board is a sea of memories from the beginning of the O’Brien time. Every now and then something pops out and I crack a smile, remembering a great and unique moment. However, this past week, I stopped cold in my tracks. A unfamiliar picture of Kendall from last year looked me straight in the face, among the rainbow of colors scattered around it.
I frequently look at our pictures, often painting a mental depiction with a time stamp of that point in time. I have become used to seeing our children in their past based on the memories we’ve collected through images and videos. For me, seeing this new picture of Kendall erased all of my built up memories that I have collected from the previous hundreds of pictures I’ve taken of her and our family. This picture, not completely unique, forced me to realize something that I had not thought about in the past. This picture was different for some reason.
Kendall’s first 3 years were full of the usual Wolf-Hirschhorn syndrome questions and medical care. For the most part Kendall is pretty healthy; having been almost seizure free and lacking some of the tough circumstances our kids face. We have every reason to feel lucky for what Kendall has become…as we see it now. In the moment, during her first 3 years of life, we were in a state of fear and anxiety. As like many WHS families, we were stressed to the brink, worrying about what may be right around the corner, and what will transpire next with our child’s health and development. On the surface, in pictures, and in my 70+ articles on this website, the world seemed bright and full of utter joy. But the reality was that her first few years were full of turmoil, angst and wonder. Looking at that single photo in my mom’s hodgepodge of pictures, I realize now that we missed some special moments during these precious years.
When we are in the deep trenches of care for our children, it’s tough to step out and clearly see the situation as a normal set of circumstances. We, as with other special needs parents, are immediately thrown into a state of affairs that we had never expected. It takes a very special person to be able to consume this life changing moment in stride, and see our children for exactly what they are: children. Setting aside fear, speculation and uncertainty during these rough times is something that at times we couldn’t handle. We missed a piece that can’t be replaced.
I learned something vitally important from catching a glimpse of that photo. Live in the moment and appreciate what you’ve got. It’s easier said than done, especially when our kids are facing so many challenges day in and day out. For all of the new WHS parents, make certain to randomly set aside the worries and fears you have for your children. I know for a fact that I didn’t do it enough and wish I would have. But today is a new day and I plan on changing things around a bit.
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Beautifully written Kevin! You brough tears to my eyes because I had the same feelings when I recently came across a picture of Dylan as a baby sitting with Hailey – big grins on both of their faces, I was overcome with emotion. You wrote it exactly how I felt – I missed a lot of the good times. Thank you for sharing! I love hearing about Kendall, you guys are an inspiration. 🙂
I really loved this too. Thanks for sharing. I thought this exact thing about Charlotte today. I have been so weighed down with finding out “what is wrong” that I am missing all of the things that are right about her. I do not want to look back and wish I had spent it differently.
Kendall has gotten so big, she seems to be doing so well. I love this post. It is so true. Nathaniel has been “seizure free” since January(knock on wood) and yet I still worry. I’m hoping that maybe he’s outgrown them, but am still prepared. We were literally in the hospital/PICU every month….if not once, twice for the first year of his life. We were considered “regulars” there. That was probably the worst part of WHS. I can deal with the delays and progressing at his own pace, but those rushes to the ER were the worst. I mean, we almost lost him 2/3 times because he had gone into repertory distress. Luckily, his pediatrician was always the one working the ER those times. Still, that’s the past and he’s doing so well now. All I can do is keep hoping and praying that he continues to do as well as he’s done. Here’s to looking to the future!
There is something about a child with WHS that invites us to live in the moment and appreciate what we have, despite ‘turmoil and angst’. I don’t know what that something is, but maybe it is what captured your attention and inspired you to write such a thought provoking piece.
I do not have a child with WHS and until recently I did not know it was out there, but I have been looking over all of your post, and reading up on this, and when I look at your kids, I have to say I do not see the WHS, I see smiles, I see bright love filled bodies. I think even with all the hardship you people are lucky. Your souls have been touched by god’s little miracles, no I am not overly religious, but I seen some of the horrors these children deal with on a daily bases, and yet, they never seem to get swallowed by the dark gloom that would take any other people. They truly are an inspiration, Bless all of you, and please I hope I did not over step a boundary because I have not been personally touched by WHS, but I have been inspired by your families.
Thank you Georgette for coming to our site and sharing your thoughts. Kendall is an amazing child and she’s been brought to us for a reason. It’s becoming very clear to us each and every new day.
All so true, those first few years seem like we never took a moment to reflect or count our blessings.
Thanks for the great note