Share your story

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One year ago today, I published my first blog. My son was newly diagnosed with a terminal genetic disorder (PBD) and I was devastated. A wise friend encouraged me to blog; she said it would be therapeutic for me and it would put me in touch with others who were experiencing similar circumstances. 

I had never been a blog reader, so I didn’t know the first thing about the process. After watching some how-to YouTube videos, I took the plunge. 

I was astonished after publishing my first post. I didn’t realize the effect that our story would have on so many people. Social media was good to me and my post got shared so much that within 48 hours I was contacted by Shannon Butalla, the president of the Global Foundation for Peroxisomal Disorders. Her son also has PBD, and his therapist shared my story with her via Facebook. God heard my cry for clarity. I learned more about my son from her in 60 minutes than I had learned from all the specialists we visited over a 6 month period. Not only that, but the out pour of love I received ever since that first post has been nothing short of incredible.

My friend was right, the encouragement came from all over the world. I felt loved and supported in our crappy situation. But what I didn’t expect was that over time, my family’s journey would in turn, help others… And not just our circumstances alone, but the way we chose to respond to those circumstances.

Looking back over the past year of blogging, I can tell you with confidence that it is important to share your story. And truthfully, it doesn’t really matter how you do it- blog, social media, face to face, etc. I think we often times buy into the lie that our story isn’t a good one, or that it doesn’t matter… But the truth is, it is good and it does matter! And if we are willing, there is always an opportunity for us to be transparent.

I do not know the particulars of your circumstances, but I do know this- SOMEONE is going through a similar situation as you. SOMEONE will benefit from your transparency. SOMEONE desperately needs to know they are not the only one struggling with _____________.  And chances are, you are the person who can encourage them the most, because you’ve been where they are now.

I’ve been so blessed by sharing my son’s journey. I talk about Gideon with anyone who is willing to listen. I began doing it because I wanted his life to matter to others. My original thought was, If he won’t ever get the chance to tell this world who he is, then I will!! That’s why I started to share our journey. But through this process, God has taken it far beyond my selfish and small intentions.

Sharing my son’s story has allowed me to point others to His Son’s story.

And He can do that with your story.

You just have to be willing to share it.

 

 

 

Back Seat Wisdom: Brought to you by my four-year-old

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My daughter astounds me. Sometimes I think God uses her sweet curiosity to not only calm my fears but to knock down my ego as well.

We had just dropped Gideon off at therapy and we were driving to Braums for our mommy/daughter hour.  Laynie innocently questioned, “Mommy, was I born blind?”

After I told her no, she quickly said, “Gideon was because he has a genetic disorder, right?” I confirmed her statement and there was a brief moment of silence. I don’t remember exactly what she said next, but her comment led us into a discussion about possible future brothers and sisters. She told me she really wanted a sister that didn’t have a genetic disorder. I told her that unless we adopt, that really isn’t up to me or her daddy.

I explained that we are all fearfully and wonderfully made by God (Psalm 139) and then I reminded her that her daddy and I each have a sick gene within us. I said to her, “If we have another baby, there’s a 25% chance that the baby will have the genetic disorder like Gideon; but there’s a 75% chance that the baby would not have the genetic disorder.” To which she replied, “Mom 75 is greater than 25.”

I found myself trying to fight back tears as I told her that she was correct. I thought to myself, “Oh sweet child, you don’t know how big that 25% feels though.”

I’m not sure if she noticed my silence or my eyes watering, but from the back seat she reassured me, “Mommy, if you have another baby like me that would be good. But it’ll be okay if we have another one like Gideon.”

My heart almost pounded out of my chest. I felt like her words were divinely given to me for my struggling heart.

Kevin and I both have wrestled with God over the issue about having more children. What if we have another baby with PBD?? Could we go through this again? We haven’t even buried one child yet, how could we someday bury two?? All of these are reasonable questions and I doubt anyone would challenge our decision if we chose to be done having babies. However, I can’t help but remind myself that all of these questions and concerns seem to boil down to fear. And for us, I think the fear of the unknown is the greatest.

But when I survey all that God has brought me through in the past (not to mention how He’s currently carrying me in this season), I can’t help but remind myself, that God will redeem whatever comes my way.

Maybe you can relate. Maybe you are currently struggling with your own What if? questions. Maybe you’ve looked at the statistics in your own circumstances and the odds seem impossible. I don’t know what unknowns you face, but I do know that they are NOT unknown to God. From conception to death, He already knows all that we will face…And He has promised that His grace is sufficient (2 Corinthians 12:9). Perhaps you can relate to this truth as well.

I wish I could tell you that our conversation carried on and Laynie revealed some more amazing truth, but I’d be lying. In fact, after she reassured me it would be okay if we had another baby like her brother, she said, “How about we go to the park later?”

In my opinion, the wisdom that came from the back seat that day was God’s way of reminding me to trust more in Him and to let go of the fear of what could happen.

I don’t know what the future holds for our family, but I know that God’s grace will be sufficient for each new day… sufficient even to the point of watching a child suffer and someday die.

God’s been there… He knows that reality all too well.

And because of that, I feel as though I can encourage you. No matter what decisions or unknowns you are facing, God works all things for the good of those who love Him. (Romans 8:28) He’s in the business of restoration and redemption.

Be encouraged, He notices

I just want you to notice! 

This was how my 30-year-old fit began a few weeks ago. Kevin was still teaching summer school and I was desperately looking forward to him being home. On this particular day, I had decided to clean…and I mean really clean the house. And if I’m being completely honest, this was the first time since we lost our hospice house cleaner that I actually cleaned. I’m not going to remind you of how long ago Miss Lucy left.

Needless to say, I was excited for Kevin to come home and see just how hard I had worked. On a therapy day mind you. He had been home for about 30 minutes when my wheels fell off.

How could he be here this long and NOT notice?!?

It was in the midst of my tantrum (when I found myself using the inaccurate phrase “you never”) that I realized I was the one at fault here. I had placed expectations on Kevin and ultimately fell into the trap of working for him, instead of for the Lord.

Colossians 3:23-24 says, “Whatever you do, work at it with all your heart, as working for the Lord, not for human masters, since you know that you will receive an inheritance from the Lord as a reward. It is the Lord Christ you are serving.”

How often do we forget that truth?

Since I’ve become a stay at home mom, I’ve found myself missing the affirmations of the job I left. Teaching is a great calling- one with multiple and tangible rewards. And for the past few years, I’ve struggled with the fact that no one notices just how hard I’m still working.

Maybe you’ve felt that way too?

But the Truth is, God notices.

He was there yesterday when you carted all the kids across town and back for their activities. He was there with you today when you did that 3rd load of laundry even though you didn’t get much sleep the night before. And He’ll be there with you tomorrow when you’re weak and weary from the meals you’ve prepared, the fights you’ve mediated, and the errands you’ve run.

Hear me say this friend…God notices all you do!

My husband is the best man on this planet. But he’s not my God. And as hard as it is, we have to remember that everything we do is for the glory of Jesus. When we do for others (no matter how big or small), we are serving Christ!! If we are working for anyone else, we will be disappointed and eventually we will become bitter.

“And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him.” Colossians 3:17

Be encouraged, He notices you and all you do.

 

The Diagnosis: One Year Later

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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.