Most days I look around at my life and think that things are absolutely perfect (in their own imperfect way). I enjoy life — my husband is great, we have wonderful friends and family and Syona is a pretty happy little girl. Our schedule is busy between life and Syona’s appointments, but we make it a point to take time to truly enjoy each other every day and we spend a lot of time laughing.
Last Monday was not one of those days. It was the first day of a new therapy camp we’re trying with Syona. For three hours a day, Syona is in a Conductive Education class. It rolls aspects of physical, speech and occupational therapy into one play and song-based learning experience.
It was something I was really looking forward to, until I woke up that morning. It was one of those days where I rolled out of bed resentful; angry that we had to spend the time and money to help Syona learn things that so many kids and parents take for granted. Irritated that we had to sit in traffic for an hour just so my little girl could go somewhere and push herself mentally and physically further than I ever have to. Needless to say, I wasn’t a whole lot of fun to be around. But still, I sucked it up, put on my mom face and prepared myself to learn all about this new therapy and ways we could incorporate these strategies into our home life.
For the record, Syona did great — she handled the new techniques like a champ and had some fun. We met some great new kids and parents, and will likely continue this type of therapy (albeit in a less intensive format).
Despite the fact that Syona rocked her first Conductive Ed class, I came home in that same funk. When you have a child who has special needs, down days are par for the course, no matter how positive you are. That’s the reality of my life. Sometimes these days happen because of a particularly tough doctor’s appointment, or a really hard therapy session, but more often than not, the tough days are based on my perspective, and not the external forces of what is happening around us.
If I’m having one of those days, there are usually a few go-to things that make me feel better: Talking to my sisters, spending some one-on-one time with Dilip and almost always taking a moment and just enjoying all of Syona’s awesomeness. And if those things don’t work, I just wait for the day to pass, go to bed, and usually wake up the next morning in a much better mood.
So on Monday, I was scrolling through my Twitter feed and came across an article called “What My Son’s Disabilities Taught Me About ‘Having It All'” in The Atlantic.
It was amazing to see how I feel wrapped up into someone else’s words. Words that I desperately related to and needed reminding of, especially on that particular day:
“We are chasing the wrong things, asking ourselves the wrong questions. It is not, ‘Can we have it all?’ — with ‘all’ being some kind of undefined marker that shall forever be moved upwards out of reach just a little bit with each new blessing. We should ask instead, ‘Do we have enough?'”
I was spending the day feeling sorry for myself, simply because I was comparing my life to something that had never existed for me. My “normal” is different from most parents — and I bet your “normal” is different too, regardless of your child’s abilities.
So to answer the author’s question: Do I have enough? Most days the answer is yes… and asking myself this makes me feel grateful and reminds me of the many joys in my life. If the answer is no, then I need to look at what’s going on and fill in the gaps and take a look at what’s missing: Do I need a break, some quality time with my family or friends, or simply some sleep?
I think parenting any child comes with a lot of ups and downs. And sometimes, depending on how you’re feeling and the situation you’re in, these highs and lows are super-sized.
So the next time I’m having a down day, I’m going to take a moment and ask myself: Do I have enough?
How do you deal with the tough days?
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