She's turning 9 and I just had a few things spill out of my soul

We are approaching Reese’s 9th birthday. They told us she would have 7, so we’re pretty dang happy about 9. But each birthday brings a tidal wave of feelings with it. Memories of nine years flash like a highlight reel, each bringing with it its own, tailor-made emotion. Some are sweet and deep and beautiful. Some are gut wrenching.

But the most important thing I have to say about raising a child with a serious medical condition. With a short life expectancy. With global delays. With severe disabilities. What I have to say is that this isn’t what I expected. I expected sadness, and instead I found happiness that I did not know was possible. I expected depression, and instead I found a deep relationship with God. I expected a horrible life, and instead I uncovered the life I was meant for. A sacred, different life. Sometimes exhausting. Sometimes stressful, but still sacred. I expected to feel very sorry for my daughter, but instead I am fascinated by her peace and contentedness and unconditional love.

The other thing I want to say may only apply to me. I assume it is true for all parents like me, but I’m not certain. When I was told that Reese had Aicardi Syndrome, and I Googled it, and I saw the words “7 years” in what seemed to be flashing red lights, it felt like a limb had been ripped from my body. The pain was so excruciating, I didn’t think I could recover. After a few years, I was surprised by how much I had healed, but that wound was still there. It was scabbed over, much more comfortable to live with, but I know it will always be there. It’s not a painful type of wound anymore but a very sensitive one. Not one that I despise, but one I am aware of. In the same way the Apostle Paul said he had a “thorn in his flesh,” my wound keeps me tender, and keeps me close to God.
I can keep it bandaged, carefully maneuvering around corners, so I don’t bump it. But it is easy for that wound to open. When someone asks me about her and truly wants to hear the answer, when the doctors talk about her, when I watch her sleep, the wound opens and sometimes bleeds a little. Not because I’m sad anymore. But I think because every day of her life, whether it is conscious or not, the thought is always in the back of my mind, could it be today? It is always there, the real possibility. That is the wound.

And every birthday brings with it the question, will there be another?

A friend once said, “There’s more to you than just Reese.”
Your reaction to that statement will be based upon your perspective. You may think, that’s true. From my perspective, for Mario and me, it was painful. Because most people don’t understand that we are walking around with a limb torn off. We’ve learned to overcome and to function without that limb, with that wound, but it is hard to be bothered by the things that used to bother us when that wound is there. It’s kinda like me walking up to your car after you’ve been in an accident and asking, "what’s for dinner?" You can’t really think about dinner when you’re dealing with that bleeding forehead. So when you ask me how you can pray for me, the first thing that comes to mind is the wound. It’s just always at the forefront. And to imply that you’re done hearing about it makes me feel unseen.

I know I have changed over 9 years. I know I feel things very deeply. I know I cry easily. But not because I’m sad. Because I’ve discovered a depth of my soul that feels things way, way down there. Some would say I’m intense. Some friends quietly bowed out of my life. That’s OK because others entered. I hope you understand, I’ve had to learn to live with an open wound. And for me, it is not the pain of the disability. Because I have found depth and beauty and so much love in disability. But the pain comes in the anticipation of losing her.

Reese has brought me more than there are words to explain. I love everything about her. I wouldn’t change her and I would do it all over again if given the choice. She has taught me to love unconditionally. To love what is. And she’s taught me what it looks like to be loved and to stop hustling for someone else’s idea of worth and acceptance. And I’ve learned from her that knowing you are loved no matter what, no matter how you act or what you do or don’t do, is really what every human needs and desires. And it is what releases true freedom in the human soul.

So in honor of Reese’s 9th birthday, would you take a moment to ask God to show you who you are requiring to act, behave, believe a certain way before you will love them? And then respond by loving what is. Maybe ask them to forgive you. Oh, was that too much?:) Then ask God to show you how much He loves you. Listen, watch, and then believe Him. It may be revealed in a thought or in an action done by someone else. But it is from Him. Because I know that every good and perfect gift is from Him. Reese didn’t tell me that’s what she wants for her birthday, but I’m pretty sure that would make her really happy because she’s unselfish like that. Happy birthday, my darling, delightful nine-year-old girl.

And by the way…Here’s how the Message translates the words of Paul. I looked this up after I wrote this blog:

2 Corinthians 12:7-10
“…I was given the gift of a handicap to keep me in constant touch with my limitations. Satan’s angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn’t think of it as a gift, and begged God to remove it. Three times I did that, and then he told me,

My grace is enough; it’s all you need. My strength comes into its own in your weakness.

Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over. And so the weaker I get, the stronger I become.”