Love

So I did end up buying a Valentine card for Sarah. It has a heart theme with multiple pages that you open with a silly question on each page like “Who is the girl that millions adore? Who is the one that makes my heart soar?” and so forth until you get to the middle page of the card and it says YOU ARE! That is the kind of joke and little puzzle my sweet dumpling loved. I can see her face lighting up at the revelation that IT’S HER, and her big beaming smile.

This combination of Sarah’s joyfulness and her intellectual disability was one of the things I loved most about her. She wasn’t happy one hundred percent of the time but she had a very amiable personality that people commented on and responded to from babyhood. She was social and loved interacting with people and had a great deal of charm. And there was her smile, of course, which was delightful.

My husband Max thinks that part of our legacy to Sarah should be to be more like her. To be happy whenever possible. To take real joy in things. To smile more. To love others. To be grateful. And so forth.

I’m generally not good with these sorts of overarching concepts. I mean, happiness, gratitude, patience are all good things but I’ve never cared for the gratitude industrialization complex that seems to pop up regularly on the Internet, with friends informing that they are going to be announcing 32 days of things they are grateful for, or some such. Then you get the usual lists of family, house, day of good weather, etc. until they really start scraping the bottom of the barrel and are telling you they are grateful for Hellman’s Mayonnaise or some such. Ditto the mandatory gratitude statements at Thanksgiving Dinner that can be such torture for depressed people and special needs families.

However, I love my husband, and I want to support him, even though he can be a bit “12-Steppy” at times. So here are some things I’m grateful for surrounding Sarah’s death:

• I’m grateful that Sarah did not outlive us. I think this is the anxiety of every parent of a child with severe disabilities: what will become of my child after I am gone? Even if you set up trusts and arrangements and so forth, there’s no one to care for your child the way you do. I couldn’t stand the thought of her alone without us.
• I’m grateful that Sarah is out of pain. The last few years were not easy. Sarah became anxious during COVID and didn’t want to leave the house at all. (None of us ended up getting the illness, which was a relief). She started having seizures. She had some GI issues, and lost and then gained weight back, and had some skin integrity issues. The contractures in her feet were getting severe. I was very worried about her.
• I’m grateful that she did not have to deal with turning 21 and high school ending and “the cliff” of social services, etc., falling off after that. Sarah loved school and her friends and teachers there. That transition would have been terribly hard for her.
• I’m grateful that I did not find Sarah after she died, and I did not have to see her with her face blue or to attempt CPR and other life-saving measures and try to find a funeral home. I think this was a horrible experience for my husband.
• I’m grateful for my husband and the closeness we feel right now. When Sarah was alive, so many “statistics” were thrown in our face about our marriage not lasting because of a special needs child. Now that she’s dead, apparently the same vague statistics predict imminent divorce. I don’t think this is going to happen.
• I’m grateful that a lot of anger seems to have left me. When Sarah was alive I carried around a lot of defensiveness and resentment and it came out in a lot of ways. I also rushed all the time and felt very impatient. I don’t seem to have those forces driving me so much anymore and I feel grateful.
• I’m grateful that I don’t have to drive our beat-up, clunky, beast of a wheelchair van around anymore, with its sticky ramp and scratched-up exterior and only one place in the whole area that could tune it up or provide maintenance.

But most of all, I’m grateful that I had 16 years, 5 months and 28 days of Sarah’s love.