Wednesday, February 3, 2010

A New Perspective

"I can't even really remember what it was like to hear a story about a mother with breast cancer or a baby born with congenital heart problems or any other medical burden, and to feel myself crack down the middle: half sympathetic, half grateful that my own family was safe. We have become that story, for everyone else."

-excerpt from My Sister's Keeper by Jodi Picoult

I read this book some time ago and this passage shook my soul. The truth behind that, as it related to my life just a year ago, is unreal. I knew many families, personally and through blogs, whose child was struggling with serious and, sometimes, life threatening health conditions. My heart ached for them. I cried as I read their stories, or as I sat with them while they shared their fears and frustrations. I prayed for miracles, and then for comfort when the miracle didn't play out the way we wanted. I offered whatever I had to help out a family in need. But, at the end of the day, I thanked God that it wasn't me. I thanked Him for the relatively good health of myself and those closest to me. I was cracked straight down the middle.

Much like many of you.

You have shed tears over Ethan's story and have asked God, "why?" You have provided physical, financial, and emotional support to my family on multiple occasions. You have rejoiced with us during the good times, and sat in silence with us during the bad. You've offered hugs, prayers, and words of encouragement, often at the times when we needed it most. But, like me, you think about your own family and you're thankful it's not you; you've experienced that cracked feeling. And that's OK.

Since Ethan's birth, a whole new world has opened up for us. Many of your stories have become the stories that my heart now breaks for. Many of your children join Ethan in my prayers, and many of those prayers have not been answered the way we would have liked. The difference between now and one year ago is that the crack is no longer there.

Other than being able to relate with some of your stories, the cracked feeling has been replaced with a feeling of isolation. Being the parent of a child with special needs can be a very lonely place. Sometimes it feels as though no one else could fully understand what you're going through. Those fears and frustrations that I mentioned earlier are so real and, for the most part, present in our everyday life.

The fact that we're smack-dab in the middle of cold and flu season doesn't help, either. Everything is a decision right now. If we need groceries, we decide who goes to the store and who stays home with Ethan. If there's a large get-together with lots of kids, the same applies. We alternate weeks in order to attend our church since the nursery is a no-go right now. We've become so disconnected with some of our closest friends. Living in community with people is an incredible idea, until the time comes that you can't participate in that community.

Then what?

I'm still trying to figure that out. Most days, I soak in every moment I have with Ethan. Everyday of my life, I am thankful for his. I tend the cherish the small things, and I try to not become easily frustrated. Those are the good days. The other times, the times when I realize I've not had one conversation that didn't involve work or family, the times when I've gone 3 weeks without worshiping with my church family, those are hard.

I've been encouraged by some "seasoned" heart mamas, whether they know it or not. To see pictures of their children visiting The White House, or pouring nasty medicine down the drain, gives me hope.

This is but a season of our life. It will not define who we are as a family, and I pray we won't hold Ethan back any more than what is necessary. I can only imagine that we will come out of this a little bit tougher, a little bit stronger, and a little more prepared for these feelings the next time they hit.

It's true that being a "heart family" is a gut-wrenching, challenging experience. But, it is also one of the most rewarding things I've ever done.

That is what I'll choose to focus on while my family becomes that story.


Anonymous said...

Love u. :)

Anonymous said...

Joye -- you have tugged at my heart and soul again. Lois

Shannon said...

Joye, It eventually does define you as a family; but a family not only of only struggles, but of hope, love and strength. God chose you to be Ethan's mom because he knew you would do it the best. Love, Shannon

Amanda said...

Thanks for your thoughts, I love your writing and your story. You and Jeramie are such wonderful parents and I hope that we, as your community, can support you during those times when it's the hardest. You are always in my prayers! Love you guys!

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