I Left My Heart at Home Today

Our 6 year-old son, W, woke up this morning with a nasty virus after being up in the night coughing. Fortunately, he didn't have a fever, but was sick enough to stay home from school. We certainly didn't want to send him with the horrible sounding croupy cough.

After consulting our respective work calendars, my husband and I determined that he would be the one to stay home with our son. It was a logical decision, based on our schedules. Not to mention that W is old enough for us to be able to get some work done from home, and if taking time off is required, my husband also has a much healthier PTO balance than I do.

But I still hated leaving him this morning. It's situations like this that make me feel so conflicted about work/life balance. I knew that W was fine at home with his dad. I also knew that he wasn't terribly sick and just needed some extra rest and TLC. But I still wanted for it to be me at home with him. I wanted for someone not just to be at home with him, but to be with him.

Memories aren't just made at the "big" moments in life. "Being there" doesn't mean only being there for the ball games, plays, events, and parent-teacher conferences. Memories and being there also happen in the little, everyday things - like making hot cereal or soup and snuggling my son when he doesn't feel good. If my schedule and PTO balance would have allowed, I would have taken the time - that bonus day rarely gifted to us by all things a virus - and spent it with him.

Will it get easier? I doubt it, but I can hope so.

"Mommy, why were you in the hospital?"

Today, as I sat at the kitchen table with our 6 year-old working on his valentines, he suddenly recalled a memory from nearly two years ago. "Mommy," he said, "once I gave you a valentine like this one. I brought it to you in the hospital."

I was a little surprised at him recalling this. I have been thinking a lot lately about the last time I was hospitalized, in February 2011. I had fallen sick very suddenly, and W had just turned 4 at the time. I assumed he had forgotten about it, as he hasn't brought it up in quite some time.

"Why were you in the hospital?" he asked.

"Well, remember we talked about how mommy's tummy doesn't always work right? Sometimes it makes me sick enough that I have to go to the hospital to get better." I was preparing to go further in depth with my answer if he needed me to, but my answer seemed to suffice. For now, anyway.

The past two years since that hospitalization has brought with it a lot of healing and soul-searching. I guess that's part of what has brought me here, to the world of blogging. I find it therapeutic; I would like to share my story; and perhaps by writing, I can help my story - as a mother and as a Crohn's warrior - evolve. I can't wait to see what happens!

The Thing About Resolutions

HAPPY NEW YEAR!

Well, sort of. At least it's still January, right? At least it's we're only 1/12 into the year, right? (Can you tell I started this post a few weeks ago?)

Last fall was a long one. I spent a lot of time battling Crohn's symptoms, seemed to be continually sick with a virus and was dealing with the side effects of steroids. The kids fought their own bugs, and our nights were interrupted by sleep issues (the steroids didn't help). Throw in some work travel for both my husband and me, and I was utterly exhausted. Getting through the week felt like running in water - it was exhausting, and I felt helpless to do anything about it; shore seemed so far away.

I looked forward to that peaceful lull between Christmas and New Year's (yes, it can happen if you plan it right) with the same fervor that our children anticipated Santa's visit. Thankfully, I was not disappointed - it was everything I hoped it would be! Our children had a blast, we had fun, we visited family and some family visited us. We ate well, slept well, reconnected, and made some wonderful memories. It was truly fulfilling and refreshing.

As the new year started, armed with energy, I decided to come up with some New Year's Resolutions. I wanted to focus on my health, marriage, and parenthood. This was SUCH a great idea at a time - you know, when I was rested, full of energy, and not juggling work and home. And then...life happened.

Alas, we're one month into the year and I feel thwarted. You see, I'm one of those Type-A, goal-setting, list-making people who likes to check things off in the time frame expected (life has given me several slap-in-the-face lessons about letting go of this, but to some degree, I'm fighting nature, here).

I may feel thwarted, but I've decided that I don't feel like a failure. You see, the thing about resolutions is that we don't make them in a vacuum, and we don't accomplish (or fail) them in a vacuum. There's this thing called life - and as they say, "life is what happens when you're making other plans resolutions."

You can pretty much plan on the unexpected happening. There will most certainly be an illness, a child who won't stay in bed or has nightmares, an unexpected work trip, a late night at work to make a deadline. 2013 has proven no different.

But I'm not going to let that stop me; it doesn't mean I've failed. It means I should keep going. Because regardless, I'm trying to be a better person, mother, and wife. So what if I'm not checking everything off my list according to the timeline I set out? Maybe I should shift my focus to one resolution. To be less hard on myself? To let things go, and celebrate when I am able to achieve my goals?

My resolution for February on forward is to be more realistic. I'll continue to make lists and set goals, but I will need to stagger them. First up, we are working through some parenting decisions that will get us more sleep. With more rest, I'll have more resolve to tackle the next thing(s). Realistically, I will also need to ask for more help along the way (something I am not good at), or just let things happen when they can. But no matter what, I'll get there.

Hope

Love this graphic; I borrowed it from CCFA.

Shame on You, Kerry Dougherty

The Virginia legislature recently voted down Virginia House Bill No. 1375, the Restroom Access Act. This is one of many bills more frequently being proposed around the country (such as Ally’s Law, passed in 2005 in Illinois). These laws grant restroom access to individuals who suffer from eligible medical conditions which require the sudden and urgent need to use the facilities. Eligible medical conditions include Crohn’s disease and ulcerative colitis (or any other inflammatory bowel disease).

As one of 1.4 Million Americans who suffers from inflammatory bowel disease (IBD), this is a frustrating loss, even if it happened at the state level. We not only battle our own diseases on a daily basis, but must also fight judgment, misunderstanding, and advocate for awareness. But for Kerry Dougherty, columnist for TheVirginian-Pilot in Norfolk, Virginia, this killed bill is a reason for celebration.

In her article, “Bathroom bill ends up where it belongs – down the drain,” Ms. Dougherty starts out by stating, “Nothing gets some folks excited quite like a spirited discussion of public restrooms,” and, “I should know,” referring to a past article she wrote on the use of handicapped stalls. I would like to respond to her article.

Ms. Dougherty, I’m afraid you still haven’t learned the lesson you should. Your past experience may mean that you “should know” that writing about restrooms causes some people to get excited about the topic, but it certainly does not mean you have learned anything from your experience, most certainly not about empathy.

While you may “know” the topic of restrooms stirs up debate, it is clear to me that you really don’t know why this is such an important topic to many people – the approximately 1.4 MILLION of us who suffer from inflammatory bowel disease. You don’t really know.

You note that the bill was killed in subcommittee, with out a single vote of support. This figure is sad, not because you apparently feel it’s notable, but because it speaks volumes about how misunderstood and invisible these horrible diseases are.

You call the bill “over-the-top” and say it would have attempted to “legislate common sense.” I agree! Why should we have to legislate something like this? Unfortunately, as the saying goes, “common sense isn’t common.” I WISH this weren’t something that needed to be legislated. Have you taken the time to read Ally Bain’s story? It seems common sense should have prevented her incident, don’t you agree?

You say this law was an effort to “as a first resort – to fix a rare but troublesome problem.” First, this isn’t a first resort (more on that in a minute). Second, yes, it’s troublesome - extremely troublesome. But rare? How do you know? How many teens and adults do you think would publicly admit to having had a public accident? Is this criterion for drafting a bill that – I’ll state it again – will assist approximately 1.4 million Americans in performing daily functions? That IBD sufferers must first sign a petition stating, “I crapped my pants” in order to prove that these accidents happen?

You also say you’re “sympathetic to folks with some of these bowel ailments,” and that “Sympathetic business folks ought to help when they can.” They ought to, and I understand they won’t always be able to. But the issue is, many don’t or won’t. May I again direct your attention to Ally’s story, or perhaps remind you of the Alexandria teenager you cited in your article?

You go on to introduce “the flip side.” The flip side to what, may I ask? It’s apparent to me you did little to no research on inflammatory bowel disorders. You never presented the viewpoint of any single sufferer of any of these diseases. You merely presented an, “aw, shucks, that must really suck” attitude with that pitying nod of understanding that you “know” what it’s like to need to use the restroom with any sense of urgency. You don’t know.

And then, we get to hear your pedicure story. You witnessed salon workers doing the right thing, only to be robbed. That was wrong, and I hate that it happened. Did you consider alternate scenarios? What if that woman had been an IBD sufferer, and she not only made it to the restroom in time, but no one’s wallets were stolen? What if that woman had been an IBD sufferer whose request was turned down, and you had to witness her losing the contents of her bowels into her pants? IBD may be “rare, but troublesome”, and this may be Pollyannaish of me to admit, but I still have faith in the human race and believe that the scenario you cite is also “rare, but troublesome.”

Further, if you read the bill, it specifically states that access is provided if the “employee toilet facility is not located in an area where providing access would create an obvious security risk to the retail establishment.” It is my hope that such clauses would make business owners consider that such requests might be made and be certain that they can safely accommodate them.

Finally, you state that, “the best thing Crohn's sufferers could do would be to launch a public relations campaign to raise awareness.” May I be the first to sarcastically THANK YOU for your suggestion? This idea is a breakthrough! I may take that and run with it!

But in all seriousness, please let me introduce you to the Crohn’s and Colitis Foundation of America, an organization which spearheads many fundraising and awareness efforts. Also, you can google “Crohn’s disease” (or “ulcerative colitis” or “ibd”) and see that many people are doing what they can to spread the awareness (however embarrassing that can be). The reality is that in the meantime, we still have to use the restroom - urgently, at inconvenient times, and in inconvenient places.

So, shame on you. Not for having the opinion you do, but for failing to research and understand the driving force behind the Restroom Access Act.

Ms. Dougherty, I would not wish Crohn’s on anyone, even you. I especially hope that no one close to you ever suffers from this ugly disease, as my fear for them would be that they would lack the empathy and support they would need and deserve from you.