I love this photo of my son. He was about 2 months old at the time it was taken and every time I see it, the phrase God, give me rest! comes to mind.

I felt like that for the first 10 months of Gideon’s life. I had ZERO rest- and not just the normal, tired-new-mommy-no-rest. I mean NON-EXISTENT rest. If you’ve ever had a colicky baby or an infant with a disability, then you probably have an idea of what I’m talking about.

Gideon didn’t sleep day or night. They told us he was just colicky, but as we now know, he just had genetic disorder that wouldn’t allow him to sleep… EVER!! Throw a three year old into the mix and you have the perfect setting for a Lifetime drama show were the mom loses her marbles.

This idea of REST is fresh on my mind because of my P31 workout class. REST is our focus for this week and our verse is from Psalm 37:7

You may not have a child like mine- where after 10 months, you finally just close the door and shut the monitor off. But chances are you’ve experienced a season of ZERO rest. It could be a result of problems at work or home; or maybe you’re not resting because you’re in a constant state of stress or anxiety. But no matter what you’re going through, you need rest.

Did you catch that? Let me emphasize it again- YOU NEED REST. It’s a true necessity. In fact, we’re called to rest.

During our devotion this morning, Jamie (my P31 workout instructor), reminded us that God spent 6 days creating and on the last day he rested. If you were raised in church like I was then you probably know all too well that he rested on the 7th day. It’s an easy Bible trivia fact. But have you ever thought about why He rested?

God didn’t (nor does He now) NEED the rest, but He knew we would. So He did what every parent does (or should do)… He set the example anyways.

He knew you’d be enduring this loss.

He knew you’d get this diagnosis.

He knew you’d be facing this season of uncertainty.

He knew you’d NEED rest. 

I hope you’ll join me and take at least 10 minutes today (and every day) to find a quiet place to just rest- no electronics, no loud noises, no thoughts about your to-do list… Just find time today to turn it all off, sit back and REST.

Maybe pray something like this as you do…

God, I’m so weary and so worn out. I’m carrying the weight of the world right now and it feels like I’m never going to overcome this mountain. Thank you for allowing me to lay it all down at the foot of the cross so I can be free from the weight I bear. I’m trusting in You.

God, give me rest.  

I must admit I had a pretty good morning. I got to workout, shower and eat breakfast all before Kevin left for work. THAT my friends is a successful morning around here- especially since Gideon wakes up between 5 and 6 demanding to be held and attended to every second that he’s awake.

When I got home from my 5 am workout Gideon was doing his high pitch squeal to let me know he was ready to get his morning started. I laid him on the changing table and stuck the bottle in his mouth. For some reason, I didn’t have everything “ready” so changing his diaper took a bit longer than usual and this is a problem for Gideon.

Let me explain why.

Gideon has the ability to hold his own bottle without any assistance for, at most, 60 seconds while he’s lying down- which means my diaper changing skills have to be quick. It’s like I’m defusing a bomb while the Mission Impossible theme song is playing in background. The reason he can only hold it for such a short time is for two reasons- 1) he has low muscle tone due to PBD and 2) Gideon has to press on his eyes every few minutes due to his visual impairment.

Anyways, as I fumbled through a long & embarrassing diaper change, Gideon kept dropping his bottle and crying. He was hungry, tired of holding his bottle and he had a deep desire to put pressure on his eyes. The reason I tell you this is because I found myself beyond frustrated. I think at 14 months old my little boy should be holding his own bottle longer than 60 seconds, right?!?!

Thankfully in the midst of my frustration the Lord reminded me that those 60 seconds that Gideon could hold his bottle were not a burden, but a blessing. I can’t tell you how many moms I know that wish their babies could hold their bottles for at least 5 seconds. Or how about the mamas out there who wish their babies with feeding tubes could simply drink out of a bottle??

In my frustration and in my self pity, the Lord showed me that my burden was actually my blessing.

What burdens you today? What are you carrying around or facing that seems to be weighing you down? Can I loving suggest that you try a different perspective? Maybe the Jesus wants you to see what a blessing your burden really is.

It’s by no coincidence that my P31 workout instructor this morning quoted Mathew 11:28-30 “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” 

Pray and ask God to remove the veil from your eyes. Whatever you see as a burden in your life, whatever brings frustration, chances are there’s a blessing in the midst of all of it.

Choose to see it.

You know that feeling you get when things seem too good to be true? I’m at that place in my life.

Honestly, things with Gideon have been going so well for the past month and a half, that I keep waiting for the bottom to fall out…as if all this good will soon end. You ever feel like that?

Why is it that we are always expecting the worst? I keep waiting for Gideon to take another turn for the worst… In fact, it’s been that fear that has kept me from updating my blog where Gideon is concerned. Often times I feel like we are on a roller coaster- one minute we’re up and the next second we’re down. Everything is great on Monday and by Tuesday, our world is caving in. I’m sure you can relate to that mentality.

I think it was for this reason that the Bible tells us to be worry-free and to take it one day at time. Well actually, that’s my paraphrase of Matthew 6:25-34. Verse 34 specifically says, “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” 

So keeping that in mind, I’ve decided (again) to take it one day at a time. I’m going to tell you all the good things that Gideon has been doing this past month. And if tomorrow he takes a turn for the worst, I’m going to tell you about it as well. I will not be afraid to brag on what he has accomplished today for fear of what he might lose tomorrow.

From December through January, Gideon lost a fifth of his body weight. He was not eating and he was barely drinking due to sickness. It was so bad that feeding tube options were presented to us. But February was the turn around month.

We saw a nutritionist and started some new therapies- specifically, sensory integration & feeding therapy at Excel Pediatrics twice a week (that’s in addition to his other therapies here at the house). Excel is a pretty awesome place because they have a huge adaptive gymnasium & every therapeutic toy/device/swing available for special needs kids like Gideon.

His therapist there took this picture of Gideon sitting up by himself in a tub of rice. At home, when Gideon sits on his own like this, he supports his upper body weight with his arms. But because he wants to use his hands to play in the rice, he’s actually using his trunk muscles to hold himself up. The therapist said he’ll sit like this for 30-60 seconds at a time. Such good progress!!!

Also in the month of February, Gideon began drinking AND eating pureed foods again. I credit the ECI nutritionist and the EXCEL feeding therapy for this progression. The nutritionist educated me on Gideon’s nutritional needs and the speech pathologist (feeding therapist) found an interesting way to distract Gideon so he wasn’t focused on the fear associated with swallowing pureed foods. Thanks to this team, he has gained back the weight he lost and eats at least two solid meals a day in addition to his Pediasure/coconut/almond milk mix. (I’m trying to eventually ween him off the Pediasure.)

The speech path introduced us to this interesting gadget called the Z-Vibe. 

The Z-Vibe was designed to help children with feeding issues. Basically it’s a blue tube that vibrates constantly once you turn it on. It comes with different teething & spoon attachments but we’ve discovered that Gideon prefers to stick the end of it in his ear (or eye!) rather than his mouth. The speech path found that Gideon would eat pureed foods without being upset as long as he was holding this z-vibe.

So of course we immediately bought it on Amazon & we use it as a distraction while he eats. It was $49.95 for the kit- and the kit includes the z-vibe, battery, & several teething & spoon attachments. It’s the best toy/gadget he has in my opinion because it calms him down immediately.   🙂

A friend of mine showed me a video about this next gadget called, the Swimava.

The Swimava is pretty cool. It’s your basic swim ring, but it goes around a child’s neck. I know…kind of sounds barbaric, but this allows children with low tone to be free in the water. We paid $29.95 for the Swimava bundle (comes with ring, pump and swim diaper cover) on Amazon. We can’t wait to use this in the pool, but for now Gideon enjoys using it in the bath tub. If you’ve liked my Facebook page then you’ve already seen the bath tub video of Gideon with the Swimava. If not, click HERE to watch it.

Pretty sweet video, huh? I know I’m partial when I say that he’s the most precious child ever!! 🙂

It’s crazy to think that a month ago I was researching feeding tube options and today my little man is eating pureed foods with zero problems. Not to mention his continuing progress in physical therapy. I keep looking back and wondering, how did we make it from December to today?  The only answer I have is that Lord guided us one day at a time.

What are you facing right now? Is your struggle causing you to fear or worry about what tomorrow may or may not bring? I wish someone would have shaken me by the shoulders in December and made me quote Mathew 6:34 every day-  “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”   

If I’m being  honest, these past few months would have been a lot less stressful had I chosen to focus only on the day as it was given. Nothing good comes from worrying about tomorrow. So I’m writing verse 34 on my mirror along with this note to myself-

TAKE IT ONE DAY AT A TIME.