Wednesday, May 18, 2016

A Mermaid's Tale

Last week, we pulled off a bona fide birthday party extravaganza for Evie's 7th birthday. This party had been in the works for a couple months. Evie decided on a mermaid theme, so plans began to take form for an undersea adventure.

At times it felt like we were planning a wedding rather than a little girl's birthday. But luckily, I had a party planner who took the lead for much of the hoopla: my mother-in-law. Having raised two boys, she'd never thrown a party for a little girl, so she enthusiastically took the lead on things like food, decor, and overall making sure this party had an overly abundant WOW factor. I was in charge of invitations and activities, and my mom sewed Velcro onto towels and turned them into mermaid tails for each girl. We had all the bases covered.

We decided to keep the guest list small, so Evie invited a couple girls from our neighborhood, and a few more from her school. The girls who live in our neighborhood are regular faces around our house. They ring the doorbell and wait anxiously as Evie answers and immediately asks us in an urgent, breathless voice, "Can she play?" We love the sound of Evie and her friends playing. It's a reminder for us that she's happy.

Unlike the neighborhood friends who are in and out of our house all the time, Evie's friends from school had never been to our house before.  And that means there's another thing they'd never encountered before either: Evie's dad.

I'll admit, the thought crossed my mind more than once during the party-planning stage. How will we make sure the girls are comfortable when they see Jeff? I thought, but I didn't say anything to either Jeff or Evie. I still have this fear that someone is going to one day look at Jeff and blurt out something hurtful - to him, to Evie, to us all.

But lucky for me, my fear did not materialize, because our ever-resourceful Evie came up with a solution all on her own.

A couple weeks before the party, on a random weeknight after dinner, she announced this: "I'm gonna tell my friends from school ... the ones who are coming to my party ... 'Don't freak out - my dad's in a wheelchair. And he has a tube going into his neck. But he's totally fine.'" And as she emphasized the word fine, she flicked her wrist and rolled her eyes as if having a dad on a vent is simply no biggie.

After I picked my jaw up off the floor, I told her it was a great idea. She also wanted to take a picture of Jeff to show her friends - to ease them into the situation, per se. She wanted to take one of him solo, but I told her that would be a little weird. So I asked her to stand next to him. Here's the picture she took to school to show her friends:

When she came home from school on the day she took the picture, I was filled with so many questions running through my mind. What did your friends think when they saw the picture of you and Daddy? Did they ask any questions? What did they say? What did YOU say? How did that make you feel? Gah! I was having a virtual psychotherapy session in my mind.

As Evie was emptying out her backpack that afternoon, I approached her and in a typical mom-trying-to-be-cool-and-nonchalant-but-not-at-all-succeeding manner, I blurted out, "Did you show your friends the picture of you and Daddy?"

She answered without looking at me and without stopping what she was doing, "Yyyep."

That's it? 

That's all I get?

Evidently so.

Though later that night, Evie did clarify that upon seeing the photo, one of her friends said her dad's friend is also in a wheelchair, so she's used to being around people in wheelchairs. 

Case closed. End of story. 

Like she told me earlier, No Big Deal.

And so the day of the party arrived. We had put up the decorations the night before, and my mother-in-law came over early to get all the food prepared and put out. My mom made some dip, and both Papas were running all over town picking up things like balloons, sandwiches, and cupcakes.

I got Jeff dressed and up in his chair early that day, and he was feeling good. 

And just before noon, the little mermaids started arriving. One by one the party grew until the house was filled with oohs and aahs and high-pitched giggles. The girls ate pizza, decorated mermaid tails and crowns, swam in the pool for a good couple hours, and overloaded on cupcakes.

Evie was on Cloud 9. The party was a huge success. And none of the girls seemed the least bit concerned with, bothered by, or frankly even interested in Evie's dad.

As Jeff and I watched Evie having the time of her life with her friends, a feeling of accomplishment came over me. Not because we'd pulled off a birthday party. But because we were able to give Evie something we weren't sure we would ever be able to give her after Jeff's injury. 

We gave her something normal. 

Something where we could put the demands of a spinal cord injury to the side for a few hours and focus solely on meeting her wants and her needs.

Together, with a lot of help from our family, we gave her a no-big-deal, regular old birthday party that she'll talk about and remember for a long time.

And that, my friends, is a pretty big deal.  

Monday, May 2, 2016

You Might Be a Caregiver If ...

Did you know there are currently over 43 million people in the US who provide unpaid care to an adult family member? That's astronomical! And that's just in the US.

Whether it's something you do part time or full time, as an occupation or out of love, caregiving is happening everywhere. Even if you're not a caregiver now, you'll likely find yourself in that role some day.

I am a caregiver to my husband, so my role is born out of both love and necessity. Over the last few years, I've met quite a few people in my position, and together we've shared the woes and wonders of caregiving. We've found support in one another and an understanding of the common intricacies of the caregiving life.

So for all my caregiver friends, especially my group of sister quad wives, here's my list of

You might be a caregiver if ...

- you've ever said, "1 ... 2 ... 3 ...Oh that hurt."

- you are intimately familiar with the term "poopapalooza."

- you wish there was a competition for how fast you could dress someone who is lying down because you know you would win.

- you can put "wheelchair mechanic" on your resume.

- you have more medical supplies than clothes in your closet.

- you and the one you care for make highly inappropriate remarks about his condition then giggle about it together (in private, of course).

- you've ever wanted to slap someone who has said to you, "You need to take a break and do something for yourself."

- you are happy when a new package of catheters arrives on your doorstep.

- you can refill a weekly pill organizer while half asleep (though inadvisable, you know you've done it).

- you know what DME stands for.

- you know exactly what your out-of-pocket max is for your husband's health insurance because you meet it every year.

- you say, "You need to drink more water," every. single. day.

- you pretend you have to go to the bathroom just so you can sit down for a minute.

- you smell like Icy Hot.

- for once you decide to put on makeup, and your daughter looks at you and says, "You look pretty, but weird."

- you've ever worn a pedometer because "I want to know exactly how many miles I walk in one day."

- you're blown away by the number of miles you walk in one day - and you haven't even left the house.

- your blood pressure starts to rise when you think about the phone call you have to make to the health insurance company.

- you know every medication name, dosage, and frequency, and can rattle them off like saying the ABCs.

- you've ever put on a glove and whispered to yourself, please don't let there be poop,

- you only know what day it is by looking at the pill organizer.

- weekends no longer exist.

- you feel like you're trapped in the movie Groundhog Day.

- when filling out paperwork at a doctor's office, you bring in a printed copy of medications and write "see attached" under the List All Medications area.

- you brush everyone's teeth in the house. Everyone's.

- you plan to "read a little" before bed and can't make it through an entire page before falling asleep.

- you are so happy when you find that medical supply you need on Amazon. And it's Prime!

- you're not exactly sure how long your hair is because it's always pulled back into a pony tail/bun hybrid.

- you've ever driven a wheelchair into the wall.

- you've ever wished you could clone yourself so you could be in two places at once.

- you never quite shake the feeling of being overwhelmed.

- this is the hardest job you've never been paid to do.

- as crazy as it sounds, you'd do it all again. Because even though you've beaten yourself up from time to time, you know - deep down - that you are doing a good job. And the person you're doing it all for is worth it.

He's the reason I'm a caregiver.
His injury is what makes this life so hard.
He is what makes it all worthwhile.

Caregivers rock!

If you know someone who is a caregiver, give them a hug.

If you're a caregiver yourself, what would you add to the list?