Tagged: Family

A thank you letter that will never be enough.

I’ve been struggling with a way to sum up this past year in one perfectly wrapped year-end post, all tied up with ribbons, nice and neat. I’ve begun this post countless times, always trying to find the best way to convey to all of you exactly what this year has been like. I have wanted to share with you how much your love and support (and mustaches) have meant to me this year. But it’s been a complete waste of time. I could never sum up what I have taken away from this year in one pretty post.

This year wasn’t pretty. This year was hard. It rocked me to my core. I am still fighting to reclaim much of who I once was, rebuilding pieces of who I want to be, and learning to make peace with the loss of things I can’t get back. Throughout this year, I felt an incredible range of emotions, from anger and fear, to acceptance and gratitude. The one thing I never felt was alone. In so many different ways, your tweets, your emails, your offers to help, your prayers, hugs and smiles, you guys helped me navigate through this year with hope and gratitude, and some days, maybe, just a little bit of grace.

Some of you, and you know who you are, sat at my bedside and held my hand. Others held my children, and made sure my family was fed. Some of you, without being asked, just kept showing up. It is something I will never forget, and those acts of kindness will shape the way my children live their lives and how they treat others. We are forever changed because once upon a time, a girl fell down, and an entire community came together to pick her up, dust her off, and carry her awhile until she could walk on her own.

I cannot think of any words of my own to express what I feel when I think back on this year. More than anything else, the thing that resonates most was more than just never feeling alone. You made me feel protected. Protected. That’s huge. It meant more to me than you could possibly know. There were times when it was harder than normal to pick myself up and get through one more treatment, one more hospital stay, one more fucking MRI. It’s those moments that I don’t talk about. I don’t tweet about them. Those are the moments that I have to dig deep. I have to forgive myself for feeling so weak, so sad. I have to pull it all back together and remember that my life is beautiful, even if this moment is not.  I remember earlier this year, sitting in the quiet, listening to this song, it made me think of all of you. Loving me, protecting me, never letting me stand alone, and I thought, “This is going to be okay.” You did that. I am forever grateful.

Timshel, Mumford and Sons



Thank you, for everything. I’ll eat you up, I love you so.

An Ordinary Day

This is what I did today:

  • Spent an hour of one-on-one time with Grace while Nora was at her swim lesson
  • Spent an hour of one-on-one time with Nora while Grace was at her swim lesson
  • Helped Nora make lunch for the family
  • Helped my girls get showered and dressed for a birthday party
  • I showered without needing assistance
  • French braided Grace’s hair
  • Walked 2.5 miles, my first substantial walk since the second surgery
  • Spent some time laughing with the Team Challenge team at their rummage/fundraiser
  • Took my children grocery shopping, without needing help from my husband
  • Fixed dinner for my family
  • Snuggled with my kids to watch television
  • Helped my kids get ready for bed, tickles and snuggles and tucked them in tight
  • Enjoyed a really fantastic craft beer (HOLLA!)

If you read this and thought, what the hell? What’s so great about that? I take care of my kids like that every day…so what?

Here’s what.

I have waited months to have a day like this. My children have waited months for a day like this. A normal day. An ordinary day. A day that made me feel like the mom my kids deserve, again. There are many things that I look forward to being able to do as I become stronger and healthier, but above all, I am grateful for “ordinary” days. I realize now how lucky I am to have many more ordinary days ahead of me. What once was ordinary has become anything but.

Maybe this is part of what I’m supposed to learn through my experience with Chiari Malformation, Syringomyelia and Tethered Cord (Spina Bifida Occulta). Maybe it’s a lesson in gratitude. A reminder that every day and everyday activities are a gift. Imagine if you couldn’t walk around the block or comb your daughter’s hair. You’d give anything to have “ordinary” back. And it will never seem ordinary again.

Later Gators.

NOTE: I promised you all a pretty intense post about dealing with chronic illness. It’s coming. It’s taking a bit longer to spit it out. It’s…complicated. Anyway, I had to post this one today, because I am beyond thrilled to have had such a wonderful day. I just had to share this with you.

In short, I promise to get back to being a complete jackass as soon as possible. ;)

Moms Don’t Get Sick. Right?

Moms don’t get sick. They don’t take days off. It’s just the way it is. Once you have kids, you just grit your teeth and deal with it, whatever it is, cold, flu, migraine, cramps, broken leg, whatever. Moms don’t get sick.

But what happens when they do?

For any parent facing a serious or long term illness, the worst part about it, hands down, is how it affects your kids. Since we’re moms, we can deal with everything else (pain, treatment, surgery, setbacks, anything) with a brave face and (hopefully) a positive attitude. What we have a harder time dealing with is how to protect our kids from our illness. It’s a special kind of mom guilt. It’s guilt for being sick in the first place. It’s useless and nonsensical, but there it is. We feel terribly guilty about all of it, because moms don’t get sick.

My kids have been dealing with my illness on some level since they were born. In the last two years, as my condition progressed, they have had to deal with it more often. They have spent the better part of this year dealing with it on a daily basis. They are worried. They are angry. They throw tantrums more often, and they are extremely sensitive lately. Sometimes I look at them and think they’ve finally just gone bat-shit crazy. Sooooooo, my husband and I are working with them and our pediatrician to make sure that we are doing the right things to help them cope and reassure them that we will all get through this. And we will.

In the meantime, we have made some modifications to our lifestyle and our home. We moved a card table and chairs into my bedroom so the kids can hang out with me as they color, play, read, eat, whatever. Sometimes we move Friday movie night into my bed. We have found we can do lots of stuff in mom’s bed, read, play games, cards, play video games…lots. I spend all of the time, that I’m not working, with them. And I wouldn’t have it any other way. I look at this time as an opportunity to teach them life-long coping skills, empathy, compassion, and that even though life isn’t perfect, it can still be great.

As it turns out, moms get sick. But if we are very lucky, we can also get better. In the meantime, life doesn’t stop. It might change a lot. It might be harder than it once was. It might not be what anyone would have chosen. But it’s still life. As long as we’re here, we have to treasure it. As moms, we have to take every opportunity we get to help our children grow physically and emotionally.

We have a choice: We can let the mom-guilt consume us, and feel sorry for our children, or we can use our circumstances to make our children stronger.

Some of the strongest people I know happen to be the ones that have faced adversity and used their experiences to build an amazing life. Many of them have faced challenges more difficult than my own. These people are my heroes. They inspire me every day to be the best mom I can be, and to guide my children through this time with love, humor, and gratitude. We’re going to have good days, and we’re going to have bad days. We have to remember to be grateful for both.

Put the phone down, and back away slowly.

Listen up folks, because I think we’re heading down a dangerous path. Usually you hear me evangelizing new mobile media tactics, amazing designs that make our lives easier and allow us to consume information, entertainment and social media anytime, anywhere. I mean, I *am* the #mobilediva, right?

It’s time to put the phone down.

Lately I have become keenly aware of parents ignoring their children because they cannot disconnect from the mobile web. I recently saw a woman continually ignore her son in a grocery store because she was reading/responding to something on her mobile device. It was heartbreaking. I stood there in line, silently judging this idiot of a woman. I mean how could you ignore that sweet little boy? How many years do you think you have left until he doesn’t want or need your attention in this way? What the fuck are you doing?!!

Then it occurred to me. I’ve done this. I’ve done the “just a minute”, and the “hang on I just have to send this…” to my kids. I’m an idiot too. I’d be willing to bet a lot of you are guilty of this, at least to some degree. If you deny it, I call bullshit.

After thinking about it more, I came to the following conclusion:

If my child EVER thinks FOR A SINGLE MOMENT that whatever the heck is on my mobile device is more important than her, then I am a giant douche of a parent.

I don’t want to be a douche. I don’t want my kids to think that I care more about ANYTHING than them. I’m turning over a new leaf. I will not only be more mindful of my mobile device usage around them, but I will purposefully outlaw mobile usage during most daily family activities. In addition to potentially giving my kids a complex, I could miss out on the moments that I can’t ever get back. They aren’t going to want to build forts and snuggle up on movie night forever. They are absolutely ecstatic when I walk through the door each evening, how long will that last? For everything good that our interactive lives bring into the mix, if not balanced with actually living your life, it can be destructive.

Got teenagers? Take heed. It may not seem like they care or notice. They do. They just quietly resent you for not trying harder to connect with them. Believe that.

When you boil it all down, it’s like anything else. Moderation. Being connected through mobile technology can be awesome, let’s face it, it’s pretty cool. Let’s just use a little common sense. Let’s be GREAT parents first. (Then you have my permission to check The Twitter.)

So let’s *not* be douche-y together. Let’s put the phone down and be a family. Who’s with me?