GETTING THE BALL ROLLING

Tomorrow is a big day for us. Not the kind of big day that one really looks forward to. Not like a child's first trip to the zoo or the dentist, not like going on vacation, not like the first day of Kindergarten (which will be upon us shortly), and not anything like a birthday.

Tomorrow morning we're taking our kids to the children's hospital for some testing. Testing that we've been eager for and wanting to get done. But at the same time, we have been dreading and subconsciously avoiding it for months. Usually I'm the one wanting to dive in, figure things out, and more forward. But in a surprising reversal of roles, Max has been the one reminding me that we need to get the ball rolling in this case...I guess that while I most definitely want some answers so we can move forward and rise above whatever may come, the mommy in me is frightened of what that "whatever" may be.

Now on to our big day tomorrow (via a little bit of background information): A while back we noticed that Claire was walking with her right foot turned out. She still does. No big deal, right?

Well, Max has degenerative arthritis and dysplasia in his hips. Much of the medical community argues that this can't be genetic. However, Max's dad and both of his "full" siblings have at least one of these conditions and all of them have had hip replacements or hip resurfacings. His orthopaedist firmly believes that these problems are indeed genetic and so from the beginning, we've had our pediatrician check the kids' hips for any problematic signs...

When we were at the pediatrician's office for Hudson's big K checkup a couple of weeks ago, we mentioned to the doctor that we had noticed Claire's foot being turned out. He watched her walk and run around the room and saw it too...and ordered an x-ray so that it can be checked out.

TEST # 1: An x-ray on little Claire's hips to see if there are any early signs of either of the conditions that Max has (Hudson, by the way, has shown no signs or had any problems).

The x-ray alone is kind of nerve wracking. We should get a phone call from our pediatrician with the results in the next day or two. Of course we're hoping and praying for the best. But in the back of my mind, I'm thinking, "Whether or not she had what Max does, there is something off here." I try not to borrow trouble but I can't turn the thoughts off. At least we won't have to wait long to get an answer on this one.

TESTS # 2 and 3: After Claire's x-ray, we'll be taking both of the kids to the lab to have some blood drawn so that they can be tested for my condition, Neurofibromatosis Type II (aka NFII).

Hudson's recent trip to the pediatrician was an absolute disaster...it took 3 adults holding him to administer 4 shots. I can only imagine what it will be like tomorrow when he has to sit totally still. Hopefully our telling him that it'll hurt more if he moves will do the trick. And hopefully Claire will bear it well after having had her x-rays done just before.

Honestly, the actual drawing of the blood isn't what I'm worried about. It's the implications of the results of the tests (which could take several weeks to get back) that leave me feeling totally helpless. As a parent, I want nothing more than to protect my children. But I can't protect them from this: both of our kids have a 1 in 2 chance of having my condition. It's a highly penetrating condition and if they get the gene, they'll get the benign but threatening tumors in their nervous system just like me. They'll probably have to have surgeries just like me. They'll have to make heart-wrenching and sometimes scary decisions about their lives and the lives of their children just like we have. And as parents, if one or both of them has NFII, we'll have to make some hard decisions in their behalf.

I sit here and think about how blessed I was to go through the first 30 years of my life with no indication of my condition (unheard of). I had no symptoms other than some sciatic nerves in my legs that were thought to be totally normal and temporary even though they visited me off and on for about 13 years. I'm a lucky duck and I know it. But this isn't about me...it's about my children.

I'm optimistic about their lives even if they are diagnosed with NFII. I know that with good doctors and proper medical care, a person with this rotten mutant gene can have a wonderful life...I'm proof of that. But at the same time, I know what I've been through and thinking of my children having to go through it makes me sad. The tears well up and I'm positively terrified for them. The questions just keep running through my head: If one (or both) of them has it, when do we tell them? How do we tell them that they have a medical condition like this? How do we tell a child that they have or will have tumors in their nervous system? How do we decide when to attack the beast and opt for possibly life-changing surgeries? How do we do any of it?

I'm not actually asking these questions in search of answers. I know how we'll do it...one day, one step, one question, one surgery or procedure at a time. And we'll do it with the knowledge and expertise of fantastic doctors, the support and prayers of family and friends, and most importantly, with the love and guidance of our Heavenly Father. Without any of these things, I wouldn't have made it this far.

We'll make it through tomorrow, I know. And I'm grateful to have the distractions of daily life to help me get over all of the thoughts that are racing through my mind. Hudson has swimming lessons in the afternoon and I'll have my normal laundry, toys on the floor, and life to come home to. But normal can change so quickly...I guess it's just that the reality of it all and finally coming face-to-face with my fears with it is hitting me like a ton of bricks tonight.

I know I said that this is about my kids but maybe it's really about me...