Back in September, Gideon was invited to be part of a clinical trial. Most people jump at a chance like this, but for me it seemed to be just another unknown…and for me, the unknown usually causes me to fear.

The study involves the administration of the drug Betaine for 6 months. In a petri dish, Betaine was found to help the peroxisomes functions better and while that would be great news for Gideon, we were told that what happens in a petri dish does not always translate to the human body. Therefore the doctors were very clear that this is not a cure for peroxisomal biogenesis disorder; in fact they don’t really know what to expect. The drug has been used for a completely different disorder so they know the side effects are minimal; but until now, the drug has never been used on our PBD kids.

The drug did not arrive until a few weeks ago, and due to illness and travel, we just began administering it to Gideon on Monday. So far he has done great! Crazy to think this will last into June- he has to take the Betaine orally 3x/day! Holy cow, I can barely remember to take my vitamins once a day… Hopefully I won’t screw this up.

It’s funny how we can feel so frightened by the unknown. If you know me well, then you know I’m not a fan of medication unless its really necessary. Take the Betaine for example- I know it sounds ridiculous, but I was so worried about it in the beginning. I had never heard of this drug, and even though we agreed to be a part of the study (back in September), Kevin and I prayed about it until the drug actually got here. Then once it arrived, I had two nurses and my chiropractor look it over. Turns out Betaine is a nutritional supplement that can be bought at GNC (not in the dose we have of course).

All that worry and fear…for what?

I tell you that story because I’m always learning something new (and old) from our journey with Gideon. This is may come as a shock to you (insert sarcasm), but God wants me to be fearless. All the praying I did about our unknowns & seeking wise counsel for my uncertainties… those are all good. However, they all seem counter productive if I’m not willing to let go of my fear.

While we were in San Antonio this weekend, Kevin and I were having heart to heart moment about “when that time comes”… (If you’re new to my blog, that phrase always means when Gideon goes home to be with The Lord). We don’t discuss it often, but sometimes, through random circumstances, it just comes up. As long as I live, I’ll never forget this moment. With tears in our eyes, I asked Kevin the unanswerable question, “What are we going to do?” At that moment a poster board that had been in front of me for over an hour hit my direct line of sight, and one word caught my eye….

Fear-less.

I realize I’m about to state the obvious, but that poster board reminded me (yet again) that God doesn’t want us to live in fear. He wants us to live in FAITH. Faith that He’s still in control even when the circumstances of our lives seem like they are not. He wants us to know we can trust Him because He is the author and perfecter of our faith. He has the final say. He knows our fears and holds our tears long before they ever fall to the foot of the cross.

Philip Yancy once said, “Faith means believing in advance, what will only make sense in reverse.”

This means we can trust His heart even when we cannot see beyond our mountain. When its all said and done, the pieces will fit. If we believe God and His word, then fear falls out of the equation. The death and resurrection of Jesus leaves us with a faith like no other. Ultimately its that faith demolishes our fears.

So no matter what we face-
We don’t have to worry about all our unknowns.
We don’t have to have everything figured out in advance.
We’re not expected to know all the answers.
And we certainly weren’t created to live in fear…praise be to God for that!

I don’t know what mountain you face today. I haven’t traveled your road nor walked in your shoes. But I want to encourage you to open your eyes & ears as you go. I don’t know much, but I do know Jesus goes before us.

And faith in Him renders us fearless.

I love mornings. Especially when I get to sleep in- seems like a forbidden luxury these days. There’s nothing better than waking up just because your body intuitively knows that its had enough sleep. The past three days have been sweet bliss… long over due nourishment for my soul.

We planned to meet some friends for a two night vacay in San Antonio, but because of the impending DFW ice storm, it turned into three nights!! We left a day early to beat the storm and although I was nervous driving in the freezing drizzle, it was worth the rush.

We drove about three-quarters of the way before we found a hotel in San Marcos called Country Inn & Suites and let me just say, wow! If you’ve never stayed with this chain, you should!! We took full advantage of their amenities. After sleeping 9 glorious hours, we awoke only because we wanted to! Upon finishing our complimentary hot breakfast, we then decided to take a dip in their indoor, heated pool and hot tub!

Let me just stop and say if this was the only night away from home, it would’ve been more than enough!

But with no schedule to stick to, we decided to hit up some outlet-shopping before driving into San Antonio. We met our good friends the Robinsons, got some burgers at Chris Madrids, and then drove to the Marriott where they had booked a two bedroom suite.

To make a long story short, we had the best weekend ever. Every day we slept in, had breakfast & then romped around San Antonio. We did everything from the Alamo to wine tastings to trying as many restaurants as the buttons on our pants would allow. Sometimes we went with our friends and other times it was just Kevin and I.

At the risk of sounding cheesy, we enjoyed each other immensely. Without giving any unwanted detail, it was like a second honeymoon. It’s funny because I majored in counseling so I know the importance of getting away with my spouse. I know the importance of making sure I’m rested and recharged. I know the importance of “me” time. But even with all my knowledge I did not realize how desperately I needed that time away until we actually took it.

Isn’t it funny how we know things? We know we desperately need to take care of ourselves but we don’t make it a priority? Knowledge without application is pointless.

Is anyone else as stubborn as me? I’ve known for a long time that I’ve been drowning in desperation…and yet, I’ve turned down many offers for help. Sounds so stupid doesn’t it? And you want to know my reason for turning down that help? I don’t like to inconvenience anyone.

How ridiculous is that?! I’m not going to ask for the help I so desperately need because I’m worried about inconveniencing others?! ? Pretty certain God knew I was going to be this stubborn so He had to breathe scripture like Galatians 6:2, “Carry each other’s burdens, and in this way you will fulfill the law of Christ.” Again, even my knowledge of this verse is pointless if I’m not applying it to my life!!

I guess the lesson I am sharing here is that you should let others love you. I don’t know what you’re going through but I do know there are people out there willing to share your load. If I took anything away from this weekend (other than my cumulative 30 hours of sleep!) it’s that we need a break from the trials of life and its ok to ask others for the help to do so.

Like most things in life, we have to move past simply knowing and learn to apply what we know. That’s what I finally did this weekend & because of it, three major things that happened:
1. My love grew even more for my husband.- He has always been wonderful, but this time alone reignited us in a big way.
2. My heart longs to see my kids.-This sounds insensitive but my heart has been hard towards them because I’ve poured out all I have to give. This weekend has filled me up and I now have more to give again.
3. My soul has been convicted and made right with God.-I’ve been just as frustrated with God because of my sleeplessness and yet it’s been within my power all along to ask for the help I need. He’s faithfully realigned my perspective and filled my cup.

This gift of a weekend would not have been possible without the love of those who chose to share our load:
The Robinsons- thanks for inviting us down and loving on us. Your friendship means so much to us & we love you.
My mom, dad, sister& mother-in-law- thanks for braving the ice storm with an infant who can’t sleep and a 4 year old who needs your constant attention. Your sacrifice is greatly appreciated & has not gone unnoticed.
Jesus- praise be unto You for your forgiveness and mercy- I can only imagine how I must have looked like a toddler these past months- throwing tantrums and tears. Thanks for loving me despite my flaws. I’d also like to say thanks for the ice storm- the extra day of vacation was a very nice touch!!

Thanks to everyone else for your love and prayers. Your encouragement throughout our journey means more to me than I can adequately convey! I hope you’ll join me in allowing others to love you and carry your load. Amazing things happen when apply what we know.

Blessings to all on this beautiful and cold Sunday!

So last night was awful. Here lately, between both kids, I’m up every two hours again…just like the first 4 months of Gideon’s life.

I get up with Gideon around 11 pm and then in the middle of my deepest sleep at 1:45 am, Laynie wakes me up. So by the time I take her back to her bed, I realize why she’s up…. Gideon is screaming. (I don’t hear it initially because the door is shut, the bathroom fan is on, and the monitor is muted…mom of the year, right here). Poor Laynie hears it because she’s just across the hall. Then of course, I can’t fall back to sleep because he’s so loud now, despite all my efforts to silence him.

So with the exception of this past Monday (and a handful of other random good nights), this has been my life for the past 10 months. Exhausted….weary…worn… those don’t even begin to cover it! 

I haven’t blogged much the past few weeks, mostly because I’m so tired. But there’s also another reason…. I’m ashamed to say this but I have to be honest…I’m disappointed that God hasn’t answered my prayer of sleep. I feel like the psalmist, “How long must I wait Lord?” It’s been almost 11 months, and I selfishly expected that God would help me out in this department. But for some reason, this prayer seems to go unanswered….and I get so mad that I don’t even care why.

So this morning when I got up, angry with my Lord, I opened my email to find a weekly devotional I get through BibleGateway by Christine Caine. It’s italicized below.

The points that slapped me in the face are in bold…

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Read Matthew 5:4
Jesus tells his disciples that those who mourn will be comforted.

Divine Appointments

There is something good waiting beyond disappointment for each of us. There are appointments that God has destined. There are good works for each of us to do. And isn’t it interesting that the word appointment comes from within the word disappointment?

I’ve often marveled at that because I’ve seen again and again how disappointments take something from us: a dream, a piece of our hearts—maybe whole chucks of it. But disappointment leaves something too: a gift, an opportunity, the possibility of creating change. This means we can move from the valley of the shadow of death to new horizons and bring others with us on that road.

The enemy would like us to feel such a depth of disappointment that we never find our way back to the plan God has for us. If he can convince us to stay stuck in our disappointment, we’ll miss many of our future God appointments. I realize that some disappointments seem so big that we can’t imagine ever being able to move beyond them. We ask deep questions and they go unanswered. For example, when someone dear to us dies, no explanation will satisfy the questions crying out inside. But even for these tragedies, God has made a way.

When a precious couple named Maria and Dimitri lost their fourteen-year-old-son, Peter, they had many unanswered questions. They struggled mightily but they didn’t try to answer them. Instead, they determined to walk down that road of disappointment and heartbreak with Jesus. On the day of Peter’s funeral, still burdened with pain, sorrow, and grief, their family made a decision. Even though they did not understand why this tragedy had occurred, they would continue to trust God. They would keep on believing his promises.

They proclaimed at the funeral: “Today is a sad day, but it is not a bad day. The devil thinks he has the victory because our son has died. But our son is alive with his Jesus, and is partying in heaven. The devil has not won. We are not burying our child today, but we are sowing him as seed into the soil of this nation. We believe in a mighty harvest of young people to spring forth. Out of one death, there shall arise new life.”

Their words said, this family bruised by grief but beautiful with belief stood silently. There is a road through disappointment. Disappointment is not an end but an opportunity for a divine appointment.

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Did any of that slap you in this face too? I know good can come from our disappointment, but I have NO idea what good could possibly come from 11 months of sleeplessness. Maybe God wants me to learn obedience despite my current circumstance. Maybe He wants me to learn I can trust Him, even when I’m literally at the end of my rope. Whatever lesson is to come while I wait through all this, I do believe it will be used for His glory. All that being said, I’m still human. And in this moment, in this season, my blood shot eyes can’t see beyond the horizon.

So if you actually made it to this last paragraph, please forgive me for my rambling & complaining. I know so many others have it so much worse than I, but I would like to ask for your continued prayers. Specifically for sleep- for all of us. I’ve waited so long to put my head down and truly, consistently, genuinely rest.