Surviving Days of Diagnosis

You've heard the story before. You head in for a physical and your doctor enters the room, somber look on his or her face. "Maybe my cholesterol is a bit too high?" you think. "He's probably going to say I need to lose a few pounds."

"Mr. Jones, you have cancer." Buzzzzzz. No, that's not the answer you anticipated. You look at him like he just spoke in Swedish. He sits down by you and begins to discuss the situation with you. Many of us have felt the jab in hear chest when learning of a diagnosis. You know what I'm talking about.

Your child has biliary atresia.

It looks like leukemia.

Her heart's just not working like it should.

Heartbroken. Shattered. Disbelieving. This is just a minute portion of emotions and thoughts you might be feeling. Why her? Why US? There's nothing more difficult to apprehend or digest than a loved one being diagnosed with a disease, of any kind. It doesn't matter if they're newborn or 60 years old. The pain is palpable. 

For those of us who have kids born with liver disease, it's an especially difficult road. The joy of your newest addition to the family coming home, making your home complete. This isn't the time for such jarring news. I've been on the wrong side of a couple of diagnosis in my life. It's never easy.

When I was 13, the school nurse discovered I had scoliosis. For those unfamiliar with the term, it's a curvature of the spine. It occurs more frequently in girls and can be caused from growing too quickly though there are possibly some genetics involved. 

Perfect timing for a kid who was already a little shy. The curve was substantial - 30 degrees - and the best recommendation at the time was wearing the Milwaukee back brace --- 23 hours per day. That's right, I got to exercise without the brace and otherwise, day or night, sleep or awake, I had to wear it. For four years.

But I survived and the full story is for another time. Most of you know about the 2nd diagnosis in my life: Sarah's biliary atresia. I can't put in words how I felt when it was confirmed. Numbing is the first word that comes to mind. I still don't know if I've recovered and we're just about to celebrate Sarah's 3-year transplantaversary in one week. 

There's no easy path to walk through such things. All we can do is get up each day and treat it as special as the previous one, hoping and praying, there are more days ahead with those we love. Days we can share laughter and love. Days we can share our pain with others, since we can't possibly stand alone. Days we even shed our own pain to be there for someone far worse off than our family. 

Too often we think we're the only ones going through such debilitating circumstances and no one can possibly imagine what we're feeling. It's true that many people who haven't experienced caring for seriously ill children themselves find it hard to comprehend. Then there are the rest of us. We are a community of fighters, advocates and survivors. We DO know what the other person is feeling because we've lived it ourselves. 

We get up each day because we must. We will not give up. We won't give up on child (or loved one). We won't give up on our family. We won't give up on each other. I believe God allows things to happen for a reason, that by persevering through painful times we grow in strength, character and hope. And through that we can share with others.

My father-in-law was diagnosed with prostate cancer last week. He'll be 75 this year. We're grateful the doctors caught it early but the fact remains he will need a full 5 days per week for 8 weeks chemo treatment. No fun. We've been down this road before and we're stronger because of it. Now, we get to walk it again and hopefully, we'll be able to see another diagnosis beaten down.