Thursday, June 28, 2012


Recently a friend's mom asked me how we were able to do what we do from day to day.  Without blinking I told her, we just do, one day at a time.  Doesn't everyone?

Still, her question has lingered in the back of my mind.  How have we been able to stay sane throughout this adventure?

When I look back on where we've been, aspects of how life has changed, and the uncertain road ahead, to be honest, there are times I am overwhelmed.  I guess that's why I try to look at each day as it comes.

Appointments on the calendar have dictated our new commutes, while blank dates free us for walks and play at home.  Not as many exotic adventures as in the past, but, on the bright side, nap time is usually uninterrupted.

Our family solitude has been lonely at times, and declining good times with friends or family has been disappointing, particularly for the girls.  Yet, summer's arrival brought soccer and swimming so they are once again satiated with shin guards and sun.

Regardless of where we are, the bustling of each day often leaves me drained, absolutely empty, needing to recharge.  These evenings I just can't find the strength to explain the latest tests, flares, or tantrums, even on the blog.  Instead, I escape to the novel, typically for just a few pages, before I surrender to sleep.

Somehow, with each sunrise I open my eyes to a blank page, a fresh canvas for the day to envelope.

Taking each day as it comes is easy, ditto for doing what is best for my kids is, yet there are days that feel like someone hit the pause button on our family while life around us kept moving forward.

Having a child with any illness changes your world, but it is difficult to understand or fathom how until it actually occurs.  No one expects or hopes for this path, we certainly did not think anything like this could happen to us.  In the end, our careful and cautious planning did not immunize our trail.

Things happen for a reason, yet I've been lost in trying to comprehend why all of this has happened to our son, or any young child for that matter.  In the back of my mind, I frequently have to fight the bitter urge to let this detour leave me angry.  Instead, at these times, instead of going day by day, I take in one moment at a time, reminding myself just how lucky we are.

While our "norm" has changed, our family is strong.   The girls have learned more about compassion, sacrifice, and absolute unconditional love because of this ordeal.  I've taken a step back, truly seeing and cherishing what is right in front of me; right here, right now.  

So how do I do what I do?  It's easy, I chose to be a parent, and in that choice, anything that comes along where my kids need me, especially when they are young, is my responsibility.  If that means blazing a new path, to weave back to the highway, then so be it.  I've always been up for traveling the less traveled route anyway, the untamed scenery is breathtakingly beautiful.

Sunday, June 24, 2012

Hurry Up

There are times lately where I just am at a loss for words.

Whirlwind doesn't begin to describe our last month.  Between the start of soccer and end of the year festivities, we survived a very long viral infection with the boy.  Luckily, while it was tough and fast, the flare that came after only lasted a few days.  However, we are now combating the after effects of the weight he has lost.

On the other hand, a few weeks ago we participated in the Take Steps Against Crohn's and Colitis in honor of Cole.  Not only was it powerful to see so many other people there in support of IBD, but heartwarming to be joined by so many people on our team in support of not just Cole, but our family.  It has been a challenging journey and this day reminded me that we are not alone, even though there are days it sure feels like it.

Throughout our medical odyssey, there has been tremendous "hurry up and wait" in terms of testing and moving forward.  It seems we've returned to the first part of the cycle once again.

Once again, we are heading for numerous blood tests as ordered by a world renowned immunologist whose specialty is nk cell function.

Late Friday afternoon we received a call from our immunologist outlining some of this doctor's concerns as well as his desire to have a number of new tests run that should offer answers, or at the least, further direction.  Due to the impressively low function, yet not the absence of function, this man believes there must be an underlying cause, not just Cole's IBD.  Again, the blood markers he is looking for in combination with the other panels being run should confirm or discredit some of his thoughts.

As before, some of the blood drawn will go to Cincinnati Children's.  Additionally, a portion will be sent to a lab in Philadelphia.  Some of the tests take a few days, some others, a week or two.  These waits aren't really all that long, considering the lengthy wait last December for Cole's genetic panel for NEMOS. Still, depending on the results we already know further genetic testing may be done and I am not looking forward to that wait.

But, no matter what, I will continue to be patient, one day at a time.  I will continue to share here, just know that there are days neither Nick or I have the words to express where we are and are just trying to keep things as normal as possible for the kids as we move down this road.  This new normal has taught me more than I could ever describe, and my heart goes out to those parents and families whose adventures are much harder than ours.  It is in talking to these families I realize how truly fortunate we are, no matter how difficult our path has been, it could be so much steeper.