Wish Trip

Yesterday was the first day of summer which brings us back to the season when Sarah died. The anniversary of her death is less than two months away. Today is June 22nd and her funeral was held on August 22nd last year. It was actually pretty cold and rainy yesterday, not summer weather at all, and I was chilly as I ventured to Target and to the mall to shop for a few birthday gifts for Max. His birthday comes very close after Fathers’ Day. But on the other hand, he really takes a hit in winter time with Hannukah, Christmas, our anniversary, my birthday, Valentines’ Day, and Sarah’s birthday coming in rapid fire succession.

Sarah expected each holiday to be celebrated to the hilt with balloons, cards, and lots of presents. We satisfied her whim. Perhaps it was a little much. But as a fellow special needs parent once said to me, children with disabilities like ours have such hard lives. There’s so much they can’t participate in. Why shouldn’t we spoil them as much as we can?

I think sometimes the outside world sees the Wish Trips to Disney, the handicapped parking spaces, the cutting the lines, the aides in school, the IEPs, the guaranteed movie theater seats, and so forth, and thinks that these kids (and their families) somehow have it easy. I know there was resentment sometimes when we asked people to move out of handicapped seats or parking spaces. There was definitely some resentment and astonishment when Sarah was invited to repeat kindergarten by the school district (story for another day) because many, many parents in our school district wanted but did not receive an extra year of kindergarten to help “mature” their kids.

When we were invited to apply for our Wish Trip in 2016 by Make-A-Wish, and it was granted, I had to reassure people that no, Sarah was not immediately terminally ill. I did not reveal that she had a life-limiting illness and her life span was unknown. Why? I did not want to sound dramatic. I did not want her life turning into a Facebook meme, and having people post “I’ll pray for you” and asking for updates and so forth. She was very much alive, vibrant and happy in 2016. She was very much alive, vibrant and happy up until she died. She was probably in more pain in the last few years of her life, but she wasn’t dying. She was living.