Oxford English Dictionary defines bittersweet as “pleasure tinged with sadness or pain”

Bittersweet. If I had a penny for every time I used that word over the past 11 years on this journey with my son who has a life-limiting illness, I would probably be a millionaire. And I know I’m not the only SN parent in these shoes who uses the word to so aptly describe how we frequently feel when a special occasion comes along for our angel. Take for example BIRTHDAYS. Now while many of our family members and non-SN friends cannot fathom how we could ever be so ungrateful as to use the word bittersweet to describe our angel’s birthday, let me say for myself (and I dare speak for many other parents out there): Get over yourself and don’t ever refer to us as ungrateful because we feel “pleasure tinged with sadness or pain” at such an amazing milestone as our angel making it another miraculous year. Please. And thank you.

I’ve had it said, and I know other parents who have heard the same, that “you should feel nothing but joy and happiness that he’s made it another year!”  This is where you can insert our having feelings of guilt for having that taste of bittersweet. This is also where you can insert a visual of me, along with those other parents, standing on a rooftop and shouting, “WE ARE FILLED WITH JOY AND WE ARE HAPPY OUR CHILD MADE IT ANOTHER YEAR!”  We are. We truly are. And yes, there is a “but” to this all…

BUT, what is bittersweet is this…

That in 8 days my son turns 11 years old and I am still looking at infant toys for him. And that will never, ever change.

That as he grows more fragile, he is less able to even attempt to play with those infant toys.

That I don’t know if this will be his last birthday on this earth, so I wrestle with how to make this the most special one yet without making him too tired or overwhelmed.

That a traditional birthday party where friends are invited over has never happened, and in fact he’s sat there in his wheelchair waiting while no one invited bothered to arrive…and so parties with “friends” were no longer attempted.

And so it is – pleasure tinged with sadness or pain.
This journey is infused with the taste of bittersweet.
It is just one of a myriad of emotions along the way.