Now that we seem to have things under control with Ella's health for the moment (*knocks on wood*), I have been struggling with how to act like a "normal" family. For starters, I'm not used to having her at home. And with a change in our nursing hours, we aren't used to having long daytime stretches, on Saturdays in particular, where it's just the three of us. And since she is my first child, I really have no clue what a typical family of three would do on a Saturday afternoon.
Of course we aren't typical. There are things to consider. Getting Ella out of the house is no small feat, and she isn't used to being outside so the weather is a definite factor. But lately the temperatures have been right and the skies clear so I'm forcing myself to find things for us to do on days like today.
I go online this morning and find an event not too far from us that is also pet friendly and think to myself, this could work. It's a beautiful day and after all, Biscuits (our 6 lb. chihuahua) deserves to get out too since he spends as much time in his crate as we do at the hospital.
So we start getting things together.
Ella's feeding pump? Check.
Suction machine? Check.
Pulse ox monitor? Check.
Trach 'go' bag and extra supplies? Check.
Diaper bag? Check.
What are we forgetting? Oh right, the dog.
We manage to get everyone loaded into the car and we're on our way. Of course we're low on gas and have to make a stop at the station to fill up first. Fine. We get on our way again and by the noises coming from the dog crate in the front seat, I'm pretty sure Biscuits is remembering the last time we put him in the car which resulted in a loss of his manhood. Sorry, little buddy. I try to reassure him he is going to have FUN! He doesn't believe me.
Meanwhile, Ella is busy making her own sounds in the backseat. Time to suction. Biscuits is still very upset. The traffic is terrible! Why is it taking an hour to go 10 miles???
Finally, we make it to our destination and...well, this doesn't look right. They're setting up for a wedding here and I'm pretty sure they aren't expecting THIS to show up. I quickly look up the event on my phone.
"It's tomorrow," I tell my husband. "I thought today was the 21st." Heavy sigh from the driver's seat. "It's okay," he says. "Let's just grab some food and head back."
Deflated in the backseat, I remember three years ago when we were at the park in our own town for the 4th of July festivities (my first blog post was a result of that night) - there was a dog park in there. I suggest it to John and he agrees it's a suitable backup plan. Phew.
An hour and a half after leaving home, we make it to the dog park that is 10 minutes from our house. Biscuits is in heaven! And Ella seems to be enjoying herself as well. People are surprisingly friendly and talkative with us. After all, you never know how you will be received when you're wheeling around your "special" child with so much stuff hanging off her chair it resembles the Clampett's move to Beverly Hills. But it was nice. Really nice.
Sitting around the house for hours on end isn't good for anyone. It may take a little more forethought, planning and effort to make a family outing happen, but it's necessary for all of us. When you have a special child, especially a medically fragile one, EVERYTHING is a little more difficult - even the fun stuff. It's simply another reality that we have to accept and move on with our lives.