In My Defense: Why I Stink at Replying to All Forms of Communication

I have a few posts planned in the “In my defense” theme.  Here is my first.

If there was an award for “Least Likely to Reply” I would be the Mrs. Universe equivalent to the winner.   If I were really honest, I’d change my voice mail greeting to say:

Thank you for the phone call.  Please note, I almost never answer my phone and I never listen to any messages.  For best chance of a response, please hang up the phone and send a text.  If I don’t respond to your text within 48 hours, I suggest a resend.    If the reminder doesn’t work, please accept my apologies in advance.

 

Email and Facebook Private Messages would have this auto reply.

Thank you for the note.  I do my best to respond to all messages that require a one sentence reply within one week.  However, a reply that requires thought on my part or cannot be communicated in less than one sentence may take closer to one month.  If it reaches beyond one month and I still have not respond, I will be too embarrassed to respond so late and will delete your message.  Feel free to resend, or send me a text, if this urgent.  Thank you for your kind understanding, Tatum.

So, you’re probably thinking, “well, at least she responds to her texts.”  I’d like to say that’s true, but I can only say that I’m better with text, but far from perfect.  Texts are not instant feedback guarantees with me.   Texts often take 48 hours and I can pretty much guarantee, when I do respond, it’ll be from the toilet (err…my office with a lock on the door).

What I hate most about my lack of communication…with EVERYONE…  Seriously, the lottery could be calling to tell me I won the $1 Billion jack pot and I may forget to reply…is that I know it comes across as me thinking my time is more valuable than other people’s time.

I really… I promise.. I do not think that.  We are all crazy busy.  My life is not more important than anyone else’s.

However, my life structure is different from many other’s.  It’s especially different from when I worked outside of the home.  In my working world, my work day was structured in 30-60 minute time blocks.  I usually had meetings filling 50%-100% of my hours in the office and then I’d come home and “do” my work after Kellen was in bed.

Do you know what I would give today to have 30-60 minutes to discuss/focus on anything?  30-60 minutes without needing to stop to give a feeding, or put on braces or an eye patch, or redirect from an accident waiting to happen or to answer “why is my [pretend] car’s exhaust so stinky, mommy” or respond to, “I’m still hungry, mommy”.  30-60 minutes of my brain mostly being focused on one topic.  Now that, is a luxury I can barely imagine anymore.

Honestly, the bathroom is my only sanctuary…that is, if you consider a sanctuary a place where tiny hands are reaching under the door and another voice is yelling, “what’s taking you so long, mommy”?  My day revolves around the needs and attentions of a 2 and 4 year old.  Do you know what their attention span is?  5-10 minutes.  MAX.  And that’s only for something really, really interesting.

This is not complaining.  This is reality.  My world today, is not scheduled in 30-60 minutes time blocks, it is structured in 1-2 minute increments.  If I can give any topic a full thought for 5 minutes, I’m ecstatic.  It might even come out relatively clear without me forgetting a step or a punctuation mark.

I know what you’re thinking, “but there is always nap time”.

Owen takes anywhere between a 15 minute and 3 hour nap (usually 30-60 minutes).  In that time, I write a blog post, make any appointment phone calls I need and try to spend a little time on social media…because that’s how people find the blog.  Oh, that’s also often the first time I’ve eaten all day and about every third day, I’m happy to squeeze in a shower.  Gross, I know.  But again, that’s reality.  (Let’s not discuss the last time I got to take a long enough shower to shave my legs…I might be cast in an upcoming Geico commercial if I’m not careful).

“Okay, I’ll call you at night,” many people think.  By 8:30 when both kids are in bed and I’ve just spent the last 13 hours thinking in 1-2 minute increments, my brain is fried.  I might be on the computer as I pull up The Voice on demand (no time to watch it when it actually airs) and stare at Adam Levine (because I know he’s secretly into married, special needs moms who don’t shower or shave on a regular basis) while I poke around on the computer.  But, really, what I’m doing is waiting for 11:00 when I can go feed Owen and then go to bed.  My brain needs this quiet.  It’s going to be thinking in 1-2 minute increments again in 8 hours.

So, at the end of the day, my email, voice mails  texts and Facebook messages, don’t always get a prompt reply because if you’re asking me for more than two minutes, I will gladly give it, as soon as I find it.  I hope it’ll be soon, because I probably really do want to talk to you.

And, maybe you’re wondering, “If you’re so busy, why not quit the blog”.  Owen is up for his nap now and needs to be fed and have his braces put on, so I’ll just answer with, “Hell, no.  I love my blog.”

Help me Cure Pity

I’ll never forget the first time I felt it. It was one of Owen’s first outings. We were at the neighborhood grocery store. He was in his car seat, clipped into the stroller and facing me. An employee was walking towards us and her face broke into a grin. She was excited to see a baby was in the store. “Oh” she exclaimed with joy… and as she got to where she could see him with his nasal cannulas and head shaping helmet, her excited “oh!” turned to “ooh” with a frown.

My heart sank.

She clearly didn’t see the beautiful fighter that overcame so much to be there that day. Instead, she saw what Owen wasn’t and she felt bad for what he wasn’t.

I don’t know, if on that day, I was able to articulate that it was pity that she was expressing, but I know I didn’t like the way it felt to see my son be the recipient of it. I was relieved that he was too young to see her looks of concern and feel her focus on what he wasn’t.

It’s important to acknowledge, I’m confident that this woman didn’t intend to hurt my feelings or belittle Owen. I have a feeling if I had politely let her know, she would have been honestly and profusely sorry. Instead of saying something to her, I walked away and chalked it up as our first lesson in what many special needs families have learned ahead of us; all too often the attitude in our society is to focus on what people can’t do, rather than what they can do. And the overwhelming response to what someone can’t do is, “it’s such a pity.”

Pity is exactly what Owen does not need – it will not help him. Instead, pity will enable Owen to feel bad about his circumstances. Pity will give Owen an excuse to give up when life gets hard. Pity will be a constant reminder to Owen that he is different – that, to some, he’s not “good enough”. Pity will prevent Owen from being all that he is.

Instead of pity, what Owen needs is empowerment. He needs to be empowered with the attitude that his being born a mircro preemie who has chronic lung diseases and brain injuries is not an excuse for him to not fulfill his dreams. Empowerment is given through a combination of hope, expert care and a world that gives him a chance.

We are very fortunate to live in a metropolitan that makes it relatively easy to get expert care. Minneapolis / St Paul has three nationally ranked children’s hospital systems; University of Minnesota Amplatz, Gillette Children’s Specialty Healthcare and Children’s Hospital and Clinics of Minnesota. Each of these systems works collaboratively and provides care for Owen. Gillette, the nation’s first hospital for children who have disabilities, has an office less than five miles from our house where Owen has therapy that empowers him.

Hope is another component to Owen’s empowerment that comes easily to him. He doesn’t know what he doesn’t have, but he has an innate drive to get what he wants. Owen’s is an attitude that fills many of us with hope.

If there is one thing that worries me most about Owen’s future it’s if he’s going to grow up in a world that gives him a chance – a world without pity. When Owen’s been able to go out, the looks of pity have been prolific. I know for Owen, and all of his preemie and special needs friends, to have their best chances, we need to help people understand that their pity hurts. We need to provide ways to let the world know that solutions, not pity, are needed.

It’s the moment in the grocery store, and the many similar experiences we’ve had since, that made the CurePity movement resonate so strongly with me. Championed by Gillette Children’s Specialty Healthcare, CurePity is a campaign that asks the world to sign a pledge promising to reject pity and to take action to improve the lives and health of children with disabilities.

I signed the pledge because what Owen can do is greater than what he can’t do. I am choosing to empower, not pity, my son and all children with disabilities.

You probably already know Owen’s story.

There is also Logan’s story.


And Lexi’s Story.


I bet you have some stories of your own too.

Won’t you please, take one minute to sign the CurePity Pledge? It doesn’t matter where you live, CurePity isn’t about one hospital system in Minnesota. CurePity is about an attitude of rejecting pity in our society and fighting to establish and protect the rights of people with disabilities. It’s about giving our children a world that sees what they are, not what they are not.

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Sweet Recognition

One of the many silver linings of having a special needs child is that as a parent you notice EVERY milestone.  Actually, I often make up my own milestones as they come, so there aren’t many days that I don’t get to have a proud mom moment.  Monday Owen’s milestone was especially sweet and I had to share.

With, just the two of us in the room, we were laying on the floor together and looking through pictures of our family saved on the iPad.  With each picture, I was telling him who was in it.

“Owen.”  he looked at the screen

“Kellen”  he looked at the screen

“Kellen and Mommy”  he looked up at me

Daddy and Owen” he looked at the screen

“Kellen and Owen” he looked at the screen

“Owen and Mommy” he looked up at me

“Daddy and Mommy” he touched the screen and then looked up and touched my cheek

Ahhhh – moments to never forget.