I have trouble being still

Monday morning I went to my P31 Fitness class and since the weather was nice, our instructor gave us options- outdoor run or indoor run. I chose the outdoors.

To make a long story short, towards the end of the run, I was transitioning from the street to the side walk, and as soon as I stepped on the curb, my ankle said, nope!

It rolled to the outside and I dropped to the ground. After lying on the pavement, trying to play it cool, my P31 ladies helped me up… but I couldn’t even hop on my good leg without bouncing the other. The pain was real. I was so embarrassed that they had to CARRY ME to my friend’s car. When my instructor asked me what I wanted to do, the other ladies all told me I needed to go to the ER. As soon as I saw it, I knew they were right.

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I cried as my friend Joelle drove me there. Not because of the pain, but because all I could think of was, “How am I going to take care of Gideon and Laynie, if I can’t walk?!?”

The more I thought about that, the more I realized I wasn’t even going to be able to completely care for myself!!  And if I couldn’t even care for myself, then how was I going to….Change diapers? Feed my kids? Do the laundry? Get Gideon to therapy? (Let’s be real, how was I going to get Gideon from the crib to…anywhere?)

Thankfully nothing was broken (although I hear broken bones heal faster than my stretched out ligaments will). So they put me in a boot and gave me crutches… Joy. When I got home, I did the only thing I knew to do. I called my mom and my mother in law.

Being temporarily disabled is a humbling expereince. I’m a careGIVER. The Lord began preparing me to be Gideon’s mother when my sister was paralyzed back in 1997. For the past 18 years, I have watched (and helped) my parents care for her; so naturally, caring for another is easy to me. But to BE cared for is something I’m not familiar with and quite frankly it’s frustrating.

I have trouble being still and I struggle relying on others for help. I’ve gotten better since Gideon was born, but apparently these are areas of my life where I still struggle. I think my need for control is definitely a factor. That, and I don’t like to inconvenience anyone.

Looks like I have lots of time now and in the days to come to work on those areas.

God is smiling because He finally has my attention…

Empty The Bucket

It’s nice to see you break down. It’s good to know you’re human.

A sweet friend spoke those words over me after I lost it while talking about Gideon last week. The flood gates don’t open often, but when they do….watch out! Sometimes you just got to empty the bucket.

I think people perceive that I have it all together, simply because I can talk about Gideon with little or no emotion. In fact, several months ago another friend who has a child with a disability asked me, “How do I get to where you are?”

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Truthfully, I don’t have it all together, 24/7. I hate this genetic disorder.  I grieve my son’s circumstances and the future suffering he will face. But often times, it’s not the big issues that weigh me down. Confessing those & giving them to the Lord is easy. For me, it’s the little things that get to me. I hold onto them. I’m not as quick to acknowledge how those little inconveniences affect me. I tend to bury them and just push forward. But like a bucket beneath a slow leak, the tiny drops eventually accumulate to the brim. And the bucket begins to spill, until it’s intentionally (or unintentionally) emptied.

Yesterday when Kevin brought Gideon home from the dentist, the last drop hit the bucket. Apparently brushing Gideon’s teeth twice a day, isn’t good enough because he’s on Pediasure. So now I have to brush his teeth every time he takes a bottle….Every. Freaking.Time. This really isn’t that big of a deal, but it’s frustrating because it’s just one more thing added to the list of his daily needs.

The timing for this news wasn’t ideal either. I was already upset because I was about to go pick up Gideon’s cortef prescription. We really are fortunate because he doesn’t need this medication daily, only when he’s sick. But now I have to watch YouTube videos to learn how to give my son a shot…just in case. This was not on my top 10 list of fun things to do on a Saturday. Again, it’s not that big of a deal. But it is just one more thing. One more drop in the bucket.

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Maybe you can relate. Maybe you’re in a season right now, where it just seems like one thing after another keeps dropping in your bucket. Over time, those little inconveniences add up and if we don’t handle them as they arise eventually our bucket will begin to spill over into every area of our lives. We need to be intentional and take some time to empty the bucket.

In my opinion, the only way we can be at peace in the circumstances that we face is to let go of what we cannot control & rest in the arms of the One who never leaves us (Deuteronomy 31:8). For me, I have found that when I tell God my concerns and spend time in His Word, my focus shifts from my son to His Son. And when that happens, I’m reminded daily to empty my bucket before it ever has the chance to fill up.

Have you emptied your bucket lately?

The foot of the cross is a great place to do that.

“Come to me, all you who are weary and burdened, and I will give you rest.” Matthew 11:28

 

 

 

Results from Gideon’s Blood Work

Yesterday I got a phone call from Gideon’s endocrinologist office because they had gotten the results from Gideon’s blood work.   Here is what she told me-

  • Gideon’s ACTH levels were “high-ish”
  • Gideon’s cortisol levels were “mid-normal.”
  • Gideon is in what’s called “compensation phase.”

Basically this means that Gideon does not currently need daily medication but he will need what’s called a “stress dose” of cortef when he is extremely ill.

Can I just be honest? I’m still learning what all this means. I have a very basic knowledge of science in general and to make matters worse, I don’t research this stuff until absolutely necessary (which may or may not be a good idea).The parents on the PBD support page talk about these levels regarding their children so I know adrenal insufficiency is an issue for our PBD kiddos….but I don’t want to learn all about it until I absolutely have to. I saved this photo yesterday to my phone just to help me grasp some of these terms visually.

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The statement “ignorance is bliss” is all too true when it comes to the progression of this disease regarding my son. I know the future looks bleak and I’m not ignorant to the fact that harder times are coming…. but I just want to enjoy today as best as I can. Otherwise I might waste every day worrying about the suffering my son might face tomorrow. And that’s not a healthy place for me.

So if you have lots of questions about what all this means, rest assure, I have more. I’m slowly taking in information and what the next 6 months to a year look like as the disorder progresses.

For now you’ll have to take your questions to Google.  ;)

Gideon’s 2nd Birthday

Over the past couple of weeks, I’ve been struggling with the lie that I’m not a good mom. Mostly because people had asked me what we were doing for Gideon’s 2nd birthday. I feel as though there were some pretty big expectations, given his diagnosis. I would shrink & deflate awaiting judgement as I would tell them we’re not doing anything big.

Don’t get me wrong, each birthday for him is super important;  no one is more aware of that fact than I am. I don’t like throwing big parties anyways, and since Gideon can’t fully experience the decorations and the hype, a big party just seemed to be a waste. So we kept it low key this year and spent time with family. We had lunch at the Rock House and came back home for cake and ice cream….he did NOT like the cake. But he is an ice cream fan. (Check out my Facebook page to see a video of him crying once we finished singing happy birthday!)

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Posters and cards behind Gideon, were made by students at Kevin’s school.

Gideon has more toys that light up and vibrate than he knows what to do with…so for his birthday, Kevin and I got him this.

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Yes, that is a car buffer. Let me explain. One of Gideon’s favorite times is when Dr. Traxler (our chiropractor) uses the percussor after his adjustment. The percussor is a vibration tool that frees up the fascia and allows it to flow smoothly again. From my understanding it helps relieve nerve pain (not that Gideon suffers from nerve pain). We basically do it because Gideon LOVES the vibration. So instead of spending $2,500 to buy a percussor, we spent $25 and got a car buffer. Does the same thing…kind of. Silly I know, but G loves it so that’s all that matters. (Don’t worry, he got other presents from our families.)

You’ll notice I wrapped his gift in bubble wrap. Because he’s blind opening gifts doesn’t make much sense. I thought if the wrapping was textured it would be more enjoyable and while he is smiling in the photos, it wasn’t as big of a hit as I was hoping for…oh well.

Overall we had a pretty great day celebrating our little dude. And when it was all said and done, I didn’t feel like a bad mom for not throwing a big party. In fact I was relaxed and stress free and coincidentally(?) Gideon laughed a lot today. Happy mama, happy baby. Maybe there’s something too that.  ;)

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Happy birthday Mighty Warrior.

You are loved by more people than you know.