03 August 2010

one thing

I read a blog post just a couple weeks ago in which the author asked the following:

If you had the power to change any one thing about your life right now, what would it be?

As I considered the question, I surprised even myself by not wishing Ewan's Tetralogy of Fallot away. It depends on the day you ask me, of course. There are plenty of days when given the chance, I would wish (quickly and easily, without a thought) to have it all taken back. I would still want Ewan, just with a healthy heart, and with the knowledge that we could take him home and not worry about all the things we are going to be worrying about once he is here.

It's not that I like the fact that he has Tetralogy of Fallot, or any heart defect for that matter. It's not that I would wish for it, for us or for anyone. But if I had the power to undo the diagnosis, I assume that I would also being undoing all the good that's come from it already.

I would lose the people I have met who have been so encouraging -- the people who have been through it before and who are going through it now. I would lose the knowledge and the experience of what it is to open myself up, to say that this is scary as hell, to be surrounded by people who can encourage, pray, think good thoughts, and offer experience. I would lose, I think, some of that deeply piercing and poignant love that I have for my son. Mama Bear would not, perhaps, have as much of an edge as she does. Life is precious and delicate even without complications like these, but what we learned about his heart made this particularly weighty with us. Not a single moment is taken for granted. Not a single kick, nudge, or roll goes unappreciated. The obvious presence of life is deeply treasured.

I know as I say all this that his birth will change everything -- that is when the real difficulty will begin, when we throw all those numbers and all those other stories out the window and wonder what our family's story will be. Right now, it is all preparation -- doing all we can to get ourselves ready (and our medical team doing the same) and anticipation -- not knowing what to expect, wondering what it will be like when we are immersed in the waking, breathing reality of CHDs and NICUs and surgeries.

I know I'm going to weep. I know I'm going to sit and wait in hospital waiting rooms more than I want to, hopped up on equal parts dread and hope. I know I'm going to have days where I fall apart completely.

And I know you are going to be here. I know that you're pulling for us, and that you're pulling for this baby. The only thing that will make this journey even remotely bearable is that we don't make it alone.


Jen said...

That is so true! I also wouldn't wish Andrew's heart defect away. As hard as it is, we have learned so much from it. Come across amazing people, and learned to cherish everything, where as maybe we didn't before?? I am a completely changed person- FOR THE BETTER! And I owe it all to one tiny little heart. :) Being a HEART mommy is the most amazing gift we could receive. That God trusted US to take care of his most special angels. It is quite a gift. I'm so happy that you already realize that, even before Ewan is born.

We are definitely praying for you all as Ewan's birth approaches and praying you find peace in the waiting.

Jen, Craig & Andrew

Dawn B said...

I couldn't have said it more perfectly. Not at all.
I too wouldn't change Natalie's diagnosis, because it's what I like to think what's made her so much more determined and spunky. ;)

christianne said...

The part that hits me hardest in this post is the part where you say the day will come where you're throw all the numbers and other stories away and focus on learning what your family's story will be. It keys in on the truth that each of our stories are our own, to be trod and learned in a wholly new way.

So glad you have such a strong community of support around you through this!

Sarah said...

Love this, and the courage it takes to say it!

Stefenie said...

I feel the exact same way. I wouldn't change a thing about my precious guy either. Yes, I would take away the pain that he has felt and will feel in the future but I would never want to change what this has done to our family. It has made us BETTER...more WHOLE...and COMPLETEe. AS if the missing piece was finally put in place.

These little miracles are exactly that....MIRACLES. I truly believe that God entrusted us with his most precious gifts knowing that they would be loved and cherished.

Becuase of their broken hearts we are learning to live with our whole hearts.