I think most parents will agree with me when I say I want to provide for my kids. Especially when it comes to the essentials. I cannot fathom living day-to-day wondering how I’m going to meet all their needs. Unfortunately, life can be rough. And sometimes we have to withhold provisions from even our precious babies!

Yesterday Gideon had a second ABR (hearing test) in which he had to be sedated. And of course, with sedation comes starvation! I know it’s medically necessary, but withholding food from an infant? That’s just down right cruel! But this isn’t his first rodeo, so even though he knew the drill, he still protested. And rightfully so! The last time he had milk before his 9 am appointment was at 3 am! I’d protest too!

As Kevin and I were trying to console our screaming boy in the waiting room, we were talking about how much it sucks to withhold food from a hungry baby. And you know my man…wise old man that he is… He said, “It’s for his own good… Remember, sometimes God withholds things we need too.”

I just love my husband. He’s so right.

God knows what we need and yet sometimes he withholds those provisions. Even though He withholds, I imagine God still hurts for us. I like to think He cries with us even though He knows the final outcome will be better than anything else we could’ve imagined. (1 Corinthians 2:9)

Thankfully Gideon’s test went well…for the most part. There were some minor hiccups because my baby boy doesn’t like sleep anyways, and just to show how hard headed he is, he woke up twice from sedation!! He gets that strong will/stubbornness from his father. (Love you babe).

Although it was heartbreaking to watch at the time, withholding food from Gideon was obviously in his best interest. You see we knew something he didn’t know. He didn’t understand that he could’ve aspirated and choked during the sedation, had we fed him. All he knew was the rumble of pain in his belly- telling him food was needed now! And he let us know all about it!

Isn’t that how we all respond when provisions are withheld? We cry out to God “I need  _________ now!” You can fill that blank with any need- a job, healing, relief, money, a child, a spouse, a miracle, etc. We often forget that God knows our needs before we ask. (Matthew 6:8)

Are you in need right now? Maybe you’ve been in need for months, maybe years. Though you have fervently prayed for that need to be met, maybe God has withheld answering that prayer. Would you trust Him that He has something better in mind? Or maybe you’re like me and you’ve pleaded desperately for God to heal your loved one. Although He is able, He may not…for reasons we may never understand this side of Heaven. The apostle Paul knew all about that. (2 Corinthians 12:7)

Hard as your situation may be, you can be sure of this- Something bigger and better is at work!! 1 Corinthians 2:9 (HCSB) says “What eye did not see and ear did not hear, and what never entered the human mind—God prepared this for those who love Him.” Even though it may cause us tremendous heartache and an abundance of tears, our suffering is NEVER wasted.

I believe God will provide. Matthew 6:26 says, “Look at the birds of the air, they neither sow nor reap nor gather in barns, and yet your Heavenly Fathers feeds them.” But I also believe sometimes God allows us to stay in our continued state of longing so that we can persevere. After all our perseverance produces character, and character, hope. (Romans 5:3-4)

Gideon’s hope is in us to provide for his needs. He was hoping we would feed him; and because we knew something he didn’t, Gideon (unwillingly) had to wait. Would you put your Hope in Christ? And trust, just like an infant trusts his parents, that God will provide? Even if it’s not the outcome you were praying for…would you be satisfied to know that there’s purpose in the wait? God’s provisions are always worth the wait.

My husband’s birthday was yesterday and since we don’t exchange gifts, I wrote him this poem. Its based on a phrase he said to me a few weeks back.

We were talking about our genetic incompatibility and I was of course crying. He took my face in his hand and told me despite everything we would have to face, he still wouldn’t want to walk this road with anyone else but me. Did your heart just melt? Mine still does every time I think about that moment. We weren’t always in such a good place. I’m thanking God today that we are now.

So here it is. Hope you enjoy it.

Dear Kevin,

The way we came to be is laughable
Sometimes its hard to believe its true
But I wouldn’t want to walk this road with anyone else but you.

The distrust and hate seemed so unforgivable
It’s because of Christ alone we made it through
And I wouldn’t want to walk this road with anyone else but you.

Sweet times washed over us.
Our beautiful daughter and now a son too!!
I wouldn’t want to walk this road with anyone else but you.

Then the devastating news came.
Tears were abundant and words were few.
I still wouldn’t want to walk this road with anyone else but you.

Prayers went up, His grace fell.
With much support we felt a little less blue.
I wouldn’t want to walk this road with anyone else but you.

In a tender moment you held my face
And with these words my love for you grew
“I wouldn’t want to walk this road with anyone else but you.”

God’s still good, worthy of praise
That’s the one thing we always knew
Jesus, we wouldn’t want to walk this road together without You!

Love you more each day,
Sam

Our daily encounters don’t happen by chance. This may sound cliché, but there is a reason for your circumstances and the people you meet because of them. The people who cross our paths were meant to do so. I am of the mindset that there is a specific purpose or lesson for each encounter- whether we realize it or not.

My path recently came alongside a woman named Shannon. What is interesting about Shannon is that she lives more than 600 miles away, in a state that I had never been too. However, thanks to social media, I would now call her one of my new best friends. Although I think she would agree with me when I say, I wish we could have met under different circumstances. 

When her son’s aide sent her my first blog post, she quickly realized that she and I had something big in common… Our boys both have a Peroxisomal Biogenesis Disorder (PBD). She also realized that Kevin and I probably did not know anyone else who was going through this… and boy was she right.

Shannon is probably one of the coolest people I have ever met. She is president of the Global Foundation for Peroxisomal Disorders (GFPD). She started this foundation for many reasons, but the main reason is because she has a son named Sam who was born with a PBD. And if I’m being honest, meeting them is the real reason we recently visited Omaha.

Meeting her son, Sam, was the highlight of our trip. It brings me an incredible amount of joy to tell you that Sam is now 11 years old! When we first found out about Gideon’s diagnosis, we were under the impression that not many of these children diagnosed with PBD live to see their first birthday. And while that’s true for the most severe cases, there are others who make it to school age.

Sam is a handsome boy who has been through so much. As if having a PBD was not bad enough, Sam also had a fight with cancer around age seven. After that, Sam has required the use of a wheelchair and because of PBD, Sam has a cochlear implant. It was very heartwarming to watch Sam laugh upon hearing Gideon babble and squeal. It’s interesting how their laughs sound exactly the same. Sam loves mac and cheese and his older sister Taylor (who, like Laynie, is unaffected). And although Sam does not speak now, his eyes and smile would melt your heart.

Shannon was able to answer more of our questions than all the doctors we have seen in the past 8 months combined! She showed me pictures of Sam walking and swimming before his cancer; and in doing so, she gave me a new gift of hope for Gideon. I honestly thought my little boy would not live past a year, and now someone has shown me there is hope that he will not only live past a year; but that he will probably be able to walk, learn, and even swim someday!

And Sam is not the only PBD case that is encouraging. There are many other children living with this awful disorder. It’s heartbreaking to think that PBD claims their lives so young, yet I am amazed by what some of these children are able to accomplish in the short time they are given.

As we were driving home from our visit to Nebraska, I thought a lot about Sam and his family. If not for our circumstances with PBD, our meeting with them would never have taken place. This dreadful disorder has led us to a delightful encounter with this dear family. Hearing their story was encouraging and it gave us a refreshing optimism regarding our own situation. I’m encouraged because there’s hope that my little boy will live longer and do more than I once thought.

Thank you Shannon, Rich, Taylor and Sam. Thank you for showing us that life is still beautiful even when times are tough. We are beyond grateful that we have encountered your family even though it was our unfortunate circumstances that brought us together.

I can’t help but wonder just how many lives our boys are changing as they have encounters of their own.