Friday, March 31, 2017

Two lifetimes, Two years

Tomorrow is Cash's 2nd birthday. Like I've told many, I feel like I've lived so many lifetimes in such a short time. As we've approached this day, I've felt an array of emotions. I feel happiness as I look back on the tunnel of the last two years and find that it wasn't nearly as dark and overwhelming as I initially thought it would be. I can still remember the way that I cried that first night after his birth. I was terrified of the journey ahead and felt unprepared and just entirely "not enough." I thought life as we know and dreamed was ending. That's probably one of the few things I was right about. Life as we knew it had ended and we were entering into something so much more profound and deeply moving than we could have ever dreamed up ourselves.



For those who have followed the last two years of our life, I wouldn't truly capture our story if I didn't write about the hard moments and even days, too. Today, facebook memories brought up a video of Parker from 3 years ago. He was 4 months shy of two and repeating everyone's names as I said them to him relatively clearly. It felt so strange because it is so different from where our Cash is now. Even now, as I write this, my view is clouded with tears as the length of the road weighs heavy. Cash says words and signs even more but we are often reminded of how far we still have to go. I fully thought he would be walking by now. Though we progress towards this milestone every day, the reality is that we could still have many months before he walks independently.

Does Down syndrome make me sad sometimes? Yes. I have spent so many moments and DAYS of the last two years still not feeling like I was enough. I don't spend hours teaching him extra skills after therapy. I only know about as many words as he does in sign language. I don't constantly research new ways to teach him new skills. I usually don't know the latest research and I have trouble remembering when we have appointments. Sometimes I wish I could allow my little boy to be exactly that without feeling guilty.

If I could travel back to March 31, 2015 and allow myself a vision of our life now, I know, without a doubt, that April 1st wouldn't have been such a scary day. I would see his smile and the way he giggles in the back of his throat. I would see the way he nudges his head right into the groove of your shoulder to where he feels extra snuggly when you hold him. I would see the way he crawls with lightning speed after his big brother and those eyes that reach into your soul. I would see the way he loves ice cream and macaroni and cheese. And all those days to come, when milestones feel like mountains and the words of others cut extra deep, would dim in comparison to the ways this little boy would change my heart.

Someday, my little boy will read these words. And even amidst the happy and sad tears we've cried in his life, I hope he will see how much he's changed the deepest parts of me. I hope he sees how proud we are of the ways he's overcome odds and defeated expectations. I hope he sees the moments where he made our hearts swell with pride and how we love others better and deeper because of him. And I hope, more than anything, that he sees how we would choose him, exactly as he is, over and over again.

I was right two years ago when I didn't feel like I was enough. I'm not. But, now I see that I was never meant to be. And on those days, kind of like today, when I feel sad that I'm not enough, I can hear the Lord whisper "but I am."


So we choose joy today, tomorrow, and the next day. Certainly not because it's easy but because we choose to live each day with a changed heart.

Happy Birthday, Money. You are truly "so totally worth it."



Saturday, March 4, 2017

We are all Down Syndrome

The power of the words of others have been heavy on my heart lately. I've heard phrases such as "mongoloid," "libertards" and more. Some days they flow in one ear and out the other. Other days they sting like a fresh wound. Reminding me how far we still have to go. As a result, the Lord's been reminding me about His heart for us. Who does He say that we are?

Having a sensitivity to to the power of words has caused me to want to speak words of power over my boys. I want them to be so finely aware of their identity that the words others speak against them as they grow bears little weight on their understanding of who they are. On the way to school the other day, I began to tell Parker all the things I loved about him. I said, "Parky, did you know that you are smart?" He told me that he knew he was smart. I said "Did you know you are kind?" He said yes and I went on to ask him what it means to be kind. I wanted to see if he understood the words I was using to describe him. I told him a few more things and then said "what else are you?" He said "I'm brave." I asked him what it meant to be brave. He said it was when you do something even when you feel scared. We went on to mention several things that we thought Cash was, too. Brave, smart. Up until this point, we haven't really pointed out to Parker that Cash is considered "different." To him, he's just his little brother who follows him around and plays with his toys. He doesn't notice his almond shapes eyes or his low muscle tone. He just sees a person.

So, I said Parker, " did you know Bubba has something called Down syndrome?" I asked him if he
knew what it meant to have Down syndrome. He said no so I told him that sometimes people with Down syndrome might look different in their eyes. Especially grown ups with Down syndrome. I said, "did you know that some people may say that Bubba isn't smart because he looks different and has Down syndrome?" He audibly gasped. He couldn't believe that. He said, offended, "Well my bubba is smart." I said , "I know but sometimes people don't understand when people look different and it makes them think those people aren't smart." He responded, "Well, I have Down syndrome, too. I look different from everybody else and I'm smart!" Tears filled my eyes. Though he may not have meant the statement to be as profound as I took it, the Lord took that moment to speak directly to my heart. "It's that simple, Brooke. We are all Down syndrome." You. Me. The woman checking you out at the store. The man holding the sign at the corner. We are all different. Unique. And equally loved by our creator. It's funny how much my little humans teach me about loving people. How much they humble and surprise me. Their faith is simple and easy.  They don't judge by the standards of the world but instead on what they see and feel from your heart. Sometimes I ask Parker who made him so smart. Very simply, he always states, "Jesus did."

It is so easy for me to forget that God loves that person that my pride avoids just as much as He loves me. It's a humbling thought to realize the depth of my sin and self righteousness and remember how much God's grace has rescued me from. For so long, especially after Cash's initial diagnosis, I believed the Lord owed me for being faithful to Him. For being a good person. Admitting some of what I consider to be my most shameful flaws is scary and embarrassing. But seeing how broken I was. How angry I was because I felt so "entitled" from God began to stir in me a new awareness for His grace. Seeing how shameful the darkest parts of me are made me acutely aware of how much I needed His grace. Not how much I deserved it. He has called us to have that same grace for one another.

But how complicated we make it. Female. Male. Black. White. Liberal. Conservative. This. That.  It takes the simple words of my little boy to remind me how effortless the truth can really be. We are all Down syndrome.  Different. Beautifully unique. Equally loved. Equally broken.

"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." 2 Corinthians 12:8-9 (The Message)

-Brooke