Boys Meet Doctor, part two

We were right outside of Philadelphia when a conversation ensued about the value of social media. Neither son is on Facebook; one signed up for twitter just to follow a guy called "shit my dad says." (If you haven't checked him out, please do so. If you don't think he's funny, try "Jesus never said.")

Anyway, while I was defending the merits of social media, I missed my exit to the hospital. Now I'm trying to follow the GPS as it tells me that it's
recalculating. After finding myself in downtown Philadelphia, I say rather loudly, "everyone stop talking so I can get us to the doctor's office.

Three more turns and we're on our way down a familiar stretch of road when Pete erupts the social media conversation with his "dad voice" to say, "OK, here's what's gonna happen. (silence) Beth's going to pull up to the valet. One of you is going to get my rollator, the other is going to get the door." After a brief moment to process, one of them says, "Ok Dad, when it's time - just yell 'Go team red." Pete informs them that he'll do no such thing. But just as he I pulled up to the valet and Pete yelled, "Go team red."

Everyone jumps out, one with the door, the other with the rollator, me handing over the keys and in minutes we're turning the corner to the neurology suite.

I resisted for a long time asking the boys for help. They're not boys; they're 34 and 29 years old. They're successful men. One with a family of his own. But I want them to be Pete's sons, not his caregiver. I want to shield them from that responsibility. That's my "mom" reason.

But there is another reason: I don't want them to have to care for me. I'm the caregiver not the care receiver. I'd only need their help if I lacked skills or resources. Perhaps I'd need their help if I got in over my head. Their father is clearly in over his head. He has a chronic illness. Their father needs help, not me.

Here's the thing... I haven't fooled them. They know that I need help and they've been trying to find ways to help me for years. (When Dan drops our granddaughter, Julia off on Friday, he takes the garbage out.) They know that we both need help. And they would love nothing more than to offer concrete, tangible help but I'd to be self-sufficient.

After one day of taking them to the doctor with me, I've learned my lesson.

They're funny and clever and strong and smart. I need them with me as much as they need me with them. I spent years feeling alone while all the while they were right there with me. I spent years feeling weak when two of the strongest men I know were a phone call away. I spent years trying to hold things together when together we are meant to hold one another.

I understand why they don't completely understand the merits of social media. They don't need a website to be connected to that which is important to them. We're all right here in the car... and all anyone has to say is "Go team red."

Steps

Lao Tzu said, "A journey of a thousand miles begins with one single step."

People with chronic illnesses think about every single step.

Generally speaking, handicap accessible doesn't mean handicap convenient. I often think that if my husband was unable to walk, he'd have a better time getting into places than his current state of partial-disability.

Our favorite conundrum is when his choice is to either climb 5-6 steps OR walk a 50 foot ramp. Pete can walk but he gets tired easily. He uses a rollator with a seat. He can walk about 25 feet and then he takes a quick 60 second rest so that he can keep going. Given the option of steps or a ramp, he often opts for the steps.

I'm afraid of steps. Our house is littered with them. The kitchen is two steps lower than the living room. The bedroom is on the second floor. But in reality, he has not fallen down the steps and there was only one time in five years that getting up the steps was too much to do. (It was after a long day of travel, two flight with only a hot dog for sustenance.)

Bu I'm still afraid of steps.

We play this game as a family... it's a mixture of pictionary and telephone. We call it the paper game. We write a phrase and then the person next to us tries to draw the phrase, then the next interprets the phrase into words, then the next draws the interpretation. You get the idea.

One time when we were playing this game, I interpreted someone's drawing as "Dad fell down the steps." After I said it, silence fell over the room and I realized that the paper game had just acted like a Rorschach test and my subconscious was dancing around for everyone else to see.

Yesterday we took a step of sorts. We braved visiting my brother's house. (They usually come to our house.) There are two ways to get into his house: 6 steps into the back door or 50 feet into the front door where there is only one step. They have three girls and so there are toys that may need to be moved out of the way. And their bathroom is on the second floor.

This seems so mundane a topic... but it's my life. I have to think about steps in a world filled with obstacles. But yesterday was a success because we took a step. We had a great dinner with lots of giggling from my nieces and we played games as a family... not the paper game this time. My subconscious was happy to not have been on display.