Beauty in the Ashes

Why Blog? I’ve been struggling with this question for weeks. What the heck am I doing with this blog? What is its purpose? Some people blog to share pictures. Some people blog to share recipes and craft ideas. Some people blog because they live far away from their families and want to keep their loved ones up to date on the latest happenings. My blog was originally started by my sisters when Emma Kate was in the NICU. It was a great way to keep people “in the know” about all of her medical issues. After she came home from the hospital I deleted the blog, because I was totally paranoid about having our family’s business floating around out there in cyberspace. I’ve regretted deleting it ever since. That was my record of what when on in her first six weeks of life.

That time in my life is so blurry now, and there are so many details that I thought I wanted to forget then, but now wish to remember, because they were all part of her very special story. I started the blog back up when we were headed to Boston, but now, this blog has become my way of not forgetting the details of her story. Most of the time I blog about the “good” things in our lives. I want to be real though, so I’ll also try to share the “bad and the ugly”. Blogging is actually very therapeutic for me, because sometimes I have trouble being honest with people face to face for fear that I will burst into a million tears and look like a complete crazy person, which I am, by the way :)

Similar to the way that I struggle to find a purpose for this blog, I also struggle to figure out what my purpose is in this life. Why of all of the millions of people in this world were Trey and I given one of the 90 children with 2Q37 deletion syndrome? And although I may never know that answer in this life, I do, for some reason, feel like it is important for me to share what it’s like to have a child with a disability. I don’t think it’s something that people talk about much. It’s almost taboo in a way. And let’s be honest, when you go to the grocery store, how many mentally or physically disabled people do you see walking around? I don’t see many either, which is why having a disability or having a family member with a disability can be so isolating. Most people are pretty “normal”, although I did hear something funny at a special needs conference a few weeks ago. Excuse this quick rabbit trail…BUT, A mother and her daughter, whom is a quadriplegic caused by a terrible car accident, got up to speak and joked by saying that “somebody once told them that ‘normal’ was just a setting on the dryer.” Let me remind you that this was a room full of people touched by disability, so everyone got a pretty good kick out of that. What the heck does “normal” mean anyway?

Disability is not something that we talk about much, and I would like to change that, or at least teach people a little about what it’s like to have a child like Emma Kate. Let’s face it. We are all broken people. We all have a disability. It’s called our hearts. We are sinful in every way. And when we start to see ourselves as we really are, we can begin to open our hearts to start loving people that are different than ourselves. And we all need to be reminded that we could all be seconds away from being physically or mentally disabled ourselves. Accidents happen all the time. I think most of us take for granted the fact that we can walk and think and talk. At least I do.

Trey and I went to a special needs conference two weeks ago (the same conference that I mentioned above). It was beautiful in every way and I have so much to share, but not enough time to share it all today. I’ve also been reading a fabulous book called, Same Lake, Different Boat, by Stephanie Hubach. Stephanie was the speaker at the conference. She is also the mother of a child with a down syndrome, so I can really relate to her. Everyone should run out and get this book. It IS NOT just for people directly touched by disability. People touched by disability already know most of what’s covered in the book, because we’ve been there. This is a book about the job of the church, and how churches can reach out to the special needs community. I think that having been to that conference and reading this book has led me to all of this thinking about what I can do to help touch people affected by disability. And about how I can help educate people that are not directly touched by disability to come along side people who are. I feel like part of my place in all of this is to just be transparent…to stop pretending that everything is okay. Things aren’t okay. We live in a very broken, messed up, confused world, and things are not the way they were intended to be.

I really feel like I’m all over the place with the post, but bear with me, please. The past couple of weeks have been difficult for me. I wasn’t lying when I said Trey and I were “surprisingly great” after learning of EK’s diagnosis. At that point we really were. We were happy to have an answer. Recently, however, the permanence of EK’s diagnosis has really started to set in. 2Q37 deletion syndrome is never going away. It’s a lot to swallow. There are still so many unknowns. I’ve also seen lots of doctors and therapists in the past few weeks and every time we go to a doctor’s appointment or therapy, I am reminded of her disability and the implications that it carries. Thursday, we went to the neurologist and there was lots of talk about future children, genetic testing, yada yada. Those are big things. I have big questions. Stephanie Hubach’s son says that, “Comparison is the killer of contentment.” It’s so true. And, yet, I constantly find myself comparing Emma Kate to other kids and reality strikes and I realize all the things that she isn’t doing. And suddenly, I’m not content anymore. It’s poisonous. And these are all things that I’m trying to deal with. Last night, while reading, Same Lake, Different Boat, I came across this:

“The beauty of embracing reality is that even though life is difficult, reality is not all negative. True, it requires releasing our expectations, redirecting our lives, exercising new responsibilities, and relinquishing control. The pathway to acceptance, however, also involves realizing the benefits of the place where God has taken us. Making our peace with difficulty frees us to find the beauty in the ashes too. When we stop focusing on the difficulty and start focusing on God’s goodness, we discover manifestations of it in many places.”

I love that. I’m searching for the beauty in the ashes. I’m trying to make peace with our new reality. Having a child with a disability forces you to look at the big picture…to realize what really matters in this life. And when I think of little girls, I think of smocked bubbles, bows, pig tails, ballet, and tea parties. None of that matters…they are all earthly things, and I’m trying to focus more of my attention on the eternal things. There will be no brokenness in heaven. We will all be fixed. And heaven will be a beautiful mix of all different types of people.

If Emma Kate doesn’t understand anything else in this life, I want her to understand her need for a savior. And while some days are difficult for me, I can still rejoice because I know that a sovereign God wrote my story. And I can be thankful that things are hard, because when things are easy, I sometimes think that I can do it all myself. I can’t do it by myself. I am small. God is big. End of story.

Thanks for reading this terribly long post, and thanks for letting me be honest. I’ll be back soon with something a little less heavy and some cute pictures from Easter, of course. Maybe there should have been a disclaimer at the beginning of this post that said: This post is long and honest, and there are no cute pictures of Emma Kate. And I’m a little all over the place trying to get things down before I forget them. Please proceed with caution! :)

…”For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you a hope and a future.” Then you will call upon me and I will listen to you. You will seek me and find me when you seek me with all your heart.
Jeremiah 29:11-13