BY ORALEA MARQUARDT

The beginning of school is probably the hardest time of year for me.  Everywhere I turn, there are ads, often depicting overexcited parents shopping with their less-than enthusiastic children for school.  These ads are supposed to make you laugh and relate to the feelings that surround back-to school. Instead, for me, they are a painful reminder of a milestone that my son never reached. I am not happy or excited about the start of school and when I see those ads, there is nothing more I would like to do than to trip the mom on the television as she skips down the aisle to the music “The Most Wonderful Time of the Year,” all while filling her cart with school supplies.  Even as I try to watch the news in the morning, I am forced to be reminded that another school year is approaching through segments which offer advice on how to prepare and organize the family for the new school year.  It makes me want to scream. Back-to-school propaganda is everywhere and there is no hiding from it!

Going shopping myself is equally difficult as I watch families getting ready for the first day of school—hauling their children to the stores and looking utterly frazzled in the school supply aisle as they try to check off the different supplies needed from the several grade lists in their hands. I am envious of them and it is during this time that the “what-ifs” and “what-could-have-been(s)” fill my mind and my heart.

Although I have two healthy children who will get to experience many first days of school and I do get to be that frazzled mom in the back-to-school aisle, it doesn’t lessen the pain or isolation that I feel during this time of year.  These feelings were particularly difficult to cope with in 2010, the year William was supposed to start Kindergarten.  Because of the limitations of his disease, we never ever considered putting William into school.  So, when he was at the age to begin Kindergarten, he remained at home with his nurse while we took his older sister to her first day of 3rd grade.  At the time, I wrote my feelings down in a blog that I keep:

Kyla began third grade today. William should have started Kindergarten. It has been an emotional week for me. Open house at the school was Friday. This year I had butterflies in my tummy thinking about going. I wasn’t sure if I could handle seeing all of the excited Kindergarteners and their parents without completely breaking down. I did fairly well but had to fight back the tears at times…like when I was paying for Kyla’s lunch and the lady asked me if I only had one child attending this year. It sucked that I had to say, “Yes, only one.” Another moment that was tough was when Rod, Kyla and I were waiting to cross the street. Kyla was between us, holding each of our hands and a lady came up from behind and commented to us, “What a perfect picture.” I smiled and said, “Thank You” but silently thought, “No, a perfect picture would have William standing in the middle, too, holding his Sissy’s hand.”

I feel so very blessed to still have William with us and for all that he is and has given to us. Yet, it is still heartbreaking when milestones, like starting school, are not reached nor will ever be. It is at these times that I still grieve what we have lost: the missed dreams that I once had for him. We will never get to see Kyla and William walk to school together, play, laugh, or even fight. I will never have to manage how to juggle two open houses in elementary school or drop two kids off together in car line. All the silly little everyday things that so many parents complain about, I will never get to experience and it hurts. Those moments have been stolen from us because of a wretched disease. When trying to console me after the open-house, Rod said it best by saying, “William wouldn’t be our William if he was off to Kindergarten this year. We love him for who he is…but it is still hard.”

William should have been starting 4^th grade this year.  The beginning of the school year will always represent milestones forever missed – first dates, driver’s licensing, graduation, marriage. Over the last week, as the first day of school pictures started emerging on social media, many parents who are caring for children who are terminally ill and cannot attend school or who have lost a child, have echoed similar heartache as mine.  Although I would never wish this heartache or pain on anyone, it helps knowing I am not alone. There is power in the knowledge that there are others out there who understand and who normalize my feelings in a world where I often feel that I am outside the norm;  that embracing sadness and being angry during these moments is okay and doesn’t mean that joy isn’t found outside of the missed milestones.  After all, the beauty of William’s life and the love I have for him will never be defined by milestones.