One year ago today, were informed that our son was affected by Peroxisomal Biogenesis Disorder (PBD).

I remember it like it was yesterday. Standing in our geneticists office, the doctor asked if her assistant could take Laynie out of the room. Kevin later told me he thought it was just because she was getting into everything; but not me… I knew. I knew the moment she asked Laynie to leave that she was about to deliver the most devastating news we would ever hear..

“Your son has PBD, and if he makes it  through his first year of life, he’ll have a 77% chance of making it to school age.”  We quickly realized that someday we would bury our son.

If you’re a parent, you can imagine that moment. If you’re a parent of a terminally ill child, you can truly empathize with us in that moment. As we stood there, dazed and confused, I recalled the words of a dear friend- “Our children do not belong to us.. They’re on loan from God.”

As I spoke those words to Kevin, they brought a sense of comfort and peace to us that day. And they still do, one year later.

Kevin and I have a choice whether or not we allow  Gideon’s diagnosis to hinder us or to grow us. Will we let bitterness tie a chain to our future? Or will we choose to walk in freedom in the present? We can choose (and do choose) happiness despite our circumstances; but it’s definitely a daily choice…and some days are harder than others.

I don’t know much, I’m only a year into this diagnosis, but I do know this- unresolved anger leads to bitterness; and bitterness poisons the heart.

One year later, I can honestly tell you that our situation still sucks. NO ONE should have to go through this. BUT the lives that have been affected by our sweet baby boy…. I wish I could tell you all the stories.

What I can tell you is that God can bring good from ANY situation… from ANY circumstance….from ANY tragedy…from ANY hurt.

There’s nothing that God cannot carry us through and redeem…

If we let Him.

I saw this headstone years ago before I had children. It had a pretty big impact on me since my sister was (and still is) confined to a wheelchair. But seeing it again this morning… it had a more profound effect on me.

Seeing it through mommy-eyes this time, I found myself dwelling on “that day.” I thought about the sadness we would feel when our little boy is called Home, but I also couldn’t help but think about the freedom that he would experience.  I imagine it takes place just like that photo…children instantly free from that which confines them..

I wrote the poem below as an outward expression of my inner most feelings after looking at this photo throughout much of today. I simply call it Free.

As heartbreaking & tragic as it will be,
One day our son too will truly be free. 

That day will be dark & dreary for us,
But Gideon’s eyes will open & he’ll see Jesus. 

His ears will clearly hear that great Heavenly sound.
As the shackles of his disease fall to the ground. 

His body will be strong and he will run & play.
I can only imagine that he’ll have so much to say. 

He won’t be sad about leaving this world behind. 
Who would trade Heaven to be deaf, mute and blind?

On that day our sorrow will truly be Heaven’s joy;
As they all welcome a warrior- our precious, sweet boy.

But today’s not that day- we rejoice that he’s still here. 
And until that day comes, we don’t have to live in fear. 

There’s a peace we can have knowing that tragedies will come. 
His name is Jesus. And He is God’s resurrected Son. 

He died once for all; to forgive us of our sins. 
And knowing Him personally is where our freedom begins. 

So on that day, when we bury our son,
We can rest in Him, because the battle is won. 

The disease will be defeated and our son will be free. 
And Christ will carry us forward until we meet in eternity. 

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Here’s the link if you’d like to know more about little Matthew- whose physical body rests beneath that statue. God has truly done (and continues to do) beautiful things with his precious, short life.

No matter what you’re facing, he can do beautiful things with your circumstances as well.

We had our first ever family-of-four vacation last week. We stayed for two nights at Moody Gardens in Galveston, TX and we had a blast! We even had an added luxury- BOTH sets of grandparents went with us!!!!

We drove down and stayed one night in Beaumont to see some friends. And although we had to wait in line for almost an hour, Laynie was excited to take the ferry across. Gideon (at minimum) enjoyed the breeze…I think.    🙂

We hit two out of the three pyramids while we were there and both my babies LOVED the water park and the hotel pool!!

We ate at our favorite places- The Spot,  Fish Tales, and Mosquito Cafe (their grits will change your life, no joke).

Gideon thought it would be hilarious to wake up every morning around 5 am, so I took him out of the hotel room and fed his little behind in the hallway beside the elevators. (My apologies to all the guests who had rooms just around the corner).

On our way home we stopped in Shiner, TX to tour the brewery. (Because it was on the way…LOL, it so was not!) But the men..and even the ladies..loved it!!

It was a great trip. I felt more exhausted when we got home than before we left. Which always happens when you have kids, right?  🙂 But it really meant a lot to me that we were able to get away for a few days. We needed a break from the normal routine. We needed to do something as family that we don’t ever get to do. We made some amazing memories and the best part is that our parents got to share in that.

One thing Gideon has taught me is that every day is special. If we wait to enjoy life, we may miss the chance to do just that. I hope everyone who reads this is able to get away with those you love this summer. Even if it’s a stay-cation. Don’t miss the opportunity to enjoy time with those you cherish.