End of a Season

September 27, 2018

End of a Season

We finished out the season strong. Oliver took in two Nats games this week - both wins. Going to baseball games has been such a fun family outing for us for many years. The stadium is beautiful and fully accessible. Oliver has always enjoyed watching the sport. And the snacks have been a draw until this summer when he could no longer eat by mouth.

We were rather sentimental with his final game of the season last night. We have no idea what the future holds, but the end of any season brings with it emotion.

We seem to have settled into a lull, which I am fully embracing. We have pulled back on calories and his body is showing us signs that he can better tolerate the more frequent smaller meals. He is becoming sleepy often during the day, nodding off especially when in the van or cuddling on the couch. I am happy to feel somewhat grounded for the moment. Even though we know he is on the decline, I feel like I have been able to catch my breath and rest.

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Welcome to Holland

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.