Wednesday, November 25, 2009

One Week Away...

This is it! One week from today, Hank will be in surgery! Can't believe it's here! How quickly the last five months have passed. Weren't we just there? But I think the stress is getting to me...

Tears are flowing. After a year of holding it together, I no longer can. Why now? Hank has been his usual stoic self. When I ask him how he feels about surgery, he gives me a big smile and a thumbs up. “Good!” he says. And I think he truly is….but I can see he is a little worried or maybe just apprehensive. After we got back from New York last time, Hank stayed pretty close by my side. But as the days turned into weeks, he became his old independent self.

But here we are facing another surgery, and Hank is gravitating back to me. Wanting to snuggle up on the couch, laying in our bed at night to read to me. And last night he usurped the little ones and actually slept in our room.

A few nights ago, Hank was in his own bunk bed, reading a new library book. “Look at this Mom!” he said to me. I climbed up and stood on the ladder to his top bunk. Hank was reading an enclyclopedia-type book (he loves reference books!) and was pointing things out to me. I was standing on Hank’s right side…his PRS-free side…his “normal” side. And I looked at his face…his perfectly beautiful face. And I felt my breath taken away. Here is this sweet and beautiful young boy…born into this world with a beautiful and whole face. And he has this awful disease that destroys half the face! How can this be?

When Hank had finished reading to me, I excused myself and went downstairs. And for the first time in a very long time….I cried until I couldn’t cry anymore. Through all of this…I have never asked “why”….but now I am asking… Why Hank? Why Kyle? Why Patrick? Why any of these kids? What do they have in common? How is it even possible that a disease that can destroy your face even exist?

Five days until New York. I don’t want to go to New York for the third time in a year! I don’t want Hank to go under the knife again. I’m tired…and I wish we could just go back to our “normal” life. But we must finish what we started. And it is exciting that we have a fantastic doctor in Dr. Siebert, who can give Hank the chance at that normal life! And I know that in spite of everything…we are lucky. Hank is lucky….we have found a way for him to get help. And we have a great family and great friends who are helping us get there.
So I am grateful…but I think it’s important for others facing this to know…that it’s OK to get upset. Or to get depressed. Or to just have a really good cry! Because you can’t help but mourn the loss of the normalcy that you once had. Or to have your heart ache for your child. But then it’s important to pick yourself up, count your blessings and continue to move forward.

I’ve had my cry….and I have to be honest…I’m one breath away from another good cry…those tears just sit at the back of my eyes, waiting for their chance…but it’s time to start to prepare and to pack for our next big adventure.
New York City during the Christmas season. How cool is that? The tree at Rockefeller Center will be lit the night of Hank’s surgery. And when he feels like it, we will go see it. Lucy and Charlie are going too, and they are going to be amazed by the bright lights and big buildings.

The preparations are going well. We have our plane tickets, thanks to the generosity of our good friend, Steven James, who donated his frequent flier miles to get all 5 of us to and from New York! And since nothing ever goes 100% smooth…we will have to adjust our seating…since the plane is full, we have just two seats together and then we are spread out. I can’t imagine 4 year old Lucy sitting in the middle seat between two strangers…but of course I have a plan for that. “Here is your barf bag Honey”, I will say as I hand her a paper bag. I bet those people will be clawing the seats to trade with me! Always good to have a plan!

We have the “Forward Face” apartment booked for our time in New York. Sleeps four, so it will be a little tight, but the kids are small, so it should be OK. We’ve made contact with the Richard Family and have hopes of going to Connecticut again to visit with them. And of course we have the main event…the surgery, scheduled for Dec. 2nd! Not sure how things are going to work out with Lucy and Charlie in tow…but we will figure it out!

We got Hank’s 3rd grade school picture a couple of weeks ago. Wasn’t sure what to expect …and I am thrilled! Hank looks beautiful! What a difference a year makes! I think Hank is always beautiful….but I know how kids are…and it breaks my heart that when Hank looks in the mirror, he doesn’t see what we see…a mirror is 2 dimensional, so for someone with a facial anamoly, it is not kind. But now Hank can see what I see! That he looks GOOD! Sure, now he is asymmetrical to the other extreme…but that is what this next surgery is for. So, although I dread this next surgery…I feel renewed by the fact that as we thought…the surgery was the right decision.

Tomorrow is Thanksgiving. And this year, more than any other...we have so much to be thankful for! I think Hank said it best..."Mom, we had to write in class, what we are thankful for... Want to know what I wrote?" he asked. "Yes, please, " I replied. "I said I am thankful for my house, my yard and all our animals," he said proudly, "and for my family and for the Richard family," and with a huge smile he finished, "and for Dr. Siebert!" He gets it...Hank gets WHY we are putting him through all this. That is enough for me. As long as he knows... And so our journey continues….