Tuesday, March 31, 2015

More Birthdays

We celebrated Ben's fourth birthday on Sunday. FOUR. Can you believe that? 


Four incredibly short years ago we welcomed our little (literally... 5 pounds, 11 ounces) man into the world. There was a lot of joy that day. A lot of joy. I often reminisce about March 29th and recall the immaculate feeling of holding a newborn baby. There's absolutely nothing like that feeling and it's so hard to put into words.  


March 29th was the calm before the storm, let's say. The day before my world collapsed and my body went crazy. The only day I remember being easy, comparatively speaking. So I love March 29th. 


Birthdays are a big deal in our house. Not so much because of the party or the material aspects of the day, but because of what they represent. A lot of that stems from Alexis. Cystic Fibrosis is a terminal illness. While I don't focus on that phrase often, I can't ignore it. A diagnosis like CF puts a timeline on our little girl and, in turn, has changed the way we function, how we prioritize and even how we celebrate birthdays. 

To me, every birthday is a reflection of how far we've come as individuals and as a family. Ben has achieved so much over the last four years. Physically, he can run and jump, kick a ball and build tall towers with blocks. He loves reading books and playing with "choo-choo's." He can count to 10 and can identify every letter in the alphabet. He loves music (Florida Georgia Line is his favorite), can work YouTube better than I can and turns our whole house into a drum set. His smile is contagious, his kisses will make you melt and his hugs are the absolute best. Developmentally, he's not your average four year old. Professionals and charts would tell you that he's only two, but who cares. Age is just a number. 


We celebrate our days, weeks, months and years. We want more of them but we'll cherish what we are given as best we can. 


Ben is four. 

And he's amazing. 

Monday, March 23, 2015

Don't Make It Complicated

There have been many times over the last few years where I've only been able to see the mud. That complicated, thick curtain of yuck that just overwhelmed the crap out of my heart. I knew there was good but I couldn't find it.

I felt so overwhelmed when Ben was first diagnosed with Down syndrome. I missed the joy of having a newborn baby and focused on what I didn't like about my life. There I was navigating through what had just happened... all alone. Micah was gone, my friends were distant and I was angry at God. For months, I threw myself a huge pity party.


I'd love to tell you that I had an epiphany one day and everything just fell into place, but that's just not true. Having now processed two diagnosis', I know that each pit of mud is totally different. As much as we would like for there to be a magic button that makes it all okay, there's just not. Mourning comes in waves, heartache creeps in - even still.

I remind myself constantly that life is as easy or as complicated as you make it. People tell me all the time that they couldn't live my life. That they somehow expect me to curl up and let life pass me by because clearly having a child with Down syndrome and one with Cystic Fibrosis is just too much. Everytime someone says that to me, I think back to when each of my kids were first diagnosed. Why? Because I thought the same thing. I told God many times that this was just too much. That I couldn't do it. I even asked Him what in the world He was thinking - giving me, of all people, these cards to play.


"Don't make it complicated," He would gently remind me. "You are not alone." The way I see it, life is simple. True, I had to crawl out of the mud to see it that way, but it's simple. Jesus loves me. He proved that love long ago by dying in my place, freely and easily forgiving me, and walking this life with me - mourning when I mourn and rejoicing when I rejoice.

My only job?

Love people with that same love. People including my children. People including those who think differently than I do. People including those who may never love me back. My only job is to love those people well enough so they see Jesus. I'm not good at it. As human beings, our innate desire is to do the exact opposite. Which is why we need... Jesus. His everlasting, powerful love is the only way we can succeed in fulfilling our one and only job.

We celebrated extra chromosomes this past Saturday. 3/21 is World Down Syndrome Day, chosen because those with Down syndrome have 3 copies of the 21st chromosome. We wear blue and yellow, we eat cake and we acknowledge that our children are beautifully different. Wouldn't it be cool if we did that every day? Celebrated differences instead of hating them. Wouldn't it be nice if we could master the art of mourning with those who mourn and rejoicing with those who rejoice? Wouldn't it be amazing if we could all see the beauty in the mud, the joy in the storm and the happy in the tough.

I'm certainly no expert, but I'm learning everyday. Ben teaches me the simplicity of those things with the beautiful way he sees right past differences and imperfections and just loves people because they're people.

Life can be messy, unpredictable and hard.

But it can also be simple and lovely.

God is good. People are worth loving just because they're people.

Don't make it complicated.

 

P.S. I had the opportunity to speak at a women's retreat last month (part of the reason for my blog hiatus lately). If you're interested in hearing some of my story out loud, you can listen to it by clicking HERE. I am still so humbled by that experience and thankful for the love and support that Fellowship Bible Church gave us while we were in east Texas. Sometimes I miss Mayberry and people like those at FBC are a big reason why.