Posted on

Comparison is a Thief

It’s been almost TWO months since I wrote something.  To be perfectly honest, between an insanely busy real estate business and taking care of my two year old wonder, I have a list of BravoTV shows on the DVR that I’ve been using all my free time to get through. There’s my Thursday confession for you…I can’t be the only one, right?

Somedays I neglect God (recently, it’s a lot of days). I don’t want to, but it happens. I wake up like I was shot out of a cannon to cries from across the house. SHE’S UP! Get her meds, change her g-tube site, get the formula ready, get her food ready, weigh it, pray she eats it, try to give her formula by mouth, hope she cooperates, where’s the coffee?! I forgot to brush her TEETH!

Today I got up and decided to throw on a hat to cover my day three of no wash hair, and drove up to the local coffee shop to try and write, and hope that God would give me something awesome to whip up onto the ‘ol blog. I gotta say, I’m struggling. I think it has something to do with watching Million Dollar Listing, Shah’s of Sunset or the Real Housewives of (pick a city) and my shoving God aside to see what’s brewing on all my favorite reality shows.

Do you ever struggle with that? (Maybe not the reality show part, but the thing that you shove God aside for?) Do you ever make it to 11 p.m. at night and say, hmmm…I’ll give God my scraps today at the last hour of the 24 he’s given me and hope that tomorrow turns out better.

GUILTY!

This cycle reminds me of what my friend Denise so lovingly coined as “the do-do verses”

“For I have the desire to do what is good, but I cannot carry it out. For I do not do the good I want to do, but the evil I do not want to do—this I keep on doing. Now if I do what I do not want to do, it is no longer I who do it, but it is sin living in me that does it.”  – Romans 7:18-20

There are days when I’m hooking up Reagan’s g-tube to be fed that I am so angry, “I can not believe I have to do this,” and the thoughts of unfairness unfold from there. Then the thoughts of comparison come in. Comparison is a thief that steals and before you know it, it’s robbed you blind.

beach with mommy

At a recent neurology appt. I started asking a bunch of questions with a tone of sadness and wondering. The Dr. looked me in the eye and said: “You need to be more positive. You can’t compare Reagan to anyone, you can only compare what she’s doing today, to what she was doing last month, or last year. As long as she continues to improve, even if it’s slow, that’s all that matters.”

Pffft! That’s easy for him to say…I thought to myself. I AM positive…he doesn’t know what it’s like in the daily grind. But you know what, as hard as it was to hear, he was right. I needed a good slap in the head.

Reagan is doing great. What stinks is how my mood is dependent on what she is or isn’t doing on that particular day. Instead of using God to get me through the day, I’m waiting to see how Reagan directs the itinerary. Oh, she fussed at breakfast…that means the day is ruined b/c Reagan is running the show. Well, she’s only running it if I let her. I have to let God run the show in my life, for it to filter through to how I parent her. And spending time with God filters down to every relationship I have and how I treat those in my life.

Spending time with God needs to happen daily. And it doesn’t always happen (see paragraph 2 above). I can say, well it’s b/c I’m human, b/c I am. But I have to try better.

Evidently today’s blog is a big long confession.

I’m certain there are those of you who relate. I have learned that this life is a struggle…it is for everyone. Everyone is going through something. I just wish we would be more open in sharing it with our fellow man. I wish there was more transparency among those who we do life with. That is the only way we don’t feel alone, that is the only way we can help each other. It’s the way we know that the thoughts we have are shared by others. B/c isolation is a dangerous island and I refuse to live there, no matter how pretty the Devil tries to make it look.

Posted on

Double Blessings, Please.

Just logged in to type another blog and noticed this one was never posted from April 2015. So while it’s delayed and it’s not what is happening today, I want to share. And hey, I think we can all use the reminder that God is God and we are not.

 

We just had a hospital stay last week for four days. Four days for a stomach bug and dehydration. Having GA-1 is no joke. I remember getting dehydrated and going to the hospital for a 1/2 a day to get fluids and then managing my care from home with gatorade, water, soup and crackers. Not so for our little diva!

While at the hospital, I still had to be a mamma bear with the nurses, the pharmacy manager and the hospital administrators. I don’t quite understand why they feel they understand Reagan’s condition more than we do. I know they clearly don’t as there are only a handful of children in Central Florida who have the disorder, so in talking with a nurse I know their exposure to GA-1 is slim to none, unless they’ve had the pleasure of taking care of Reagan in a past hospital stay. Luckily, the Dr.’s tend to follow our lead as we speak with such presence and knowledge about Reagan’s disorder and it aligns 100% with conversations they’ve had with Reagan’s genetics Dr. I feel like we’ve had enough hospital stays now to understand the protocol in it’s entirety. Fluids: (she was at 75ML an hour), an IV bag of D10 (not D5 like a normal kid would get), IV of lipids if she’s not tolerating food or formula and Levocarnatine via IV (not g-tube). Seems simple enough, but when even those orders get messed up or take too long I’m not going to sit in our room twiddling…nope, I emerge like a bear and am the most vocal bear on the floor! Deal with it…grrrr!

We’ve been home for a week now and Reagan is back to her feisty self. Even though it’s been 10 days since we were admitted only now do I feel like we made it through a hospital stay illness. She has to build her immunities like any normal kid it’s just exceptionally frightening for us. It’s scary to know that we could leave the hospital with a different girl, one who could become more disabled due to an illness. So I am grateful to be home in our normal, with the same girl we went to the hospital with. I literally can’t express how grateful I am for that.

While in the hospital my girlfriends came to visit and they just hugged me and let me cry. They prayed over me and prayed for Reagan and Rob and I. As we took up an empty hallway, I said: “God has performed so many miracles in Reagan, thousands of them, I don’t want him to take them away! I want her to keep moving forward and never go backwards.” I logically could never fathom God taking away all that he’s helped Reagan re-gain. Losing all her gains I feel is my biggest fear. My friends said they couldn’t imagine that either. But, you know…God’s in control. I have to remind myself that so many times. He could take it away, but I pray he doesn’t. I pray he continually restores us like he did Job.

I think about Job a lot…he lost everything. “I loathe my very life; therefore I will give free rein to my complaint and speak out in the bitterness of my soul.” – Job 10:1

Hey Job, I can totally relate.

The book of Job goes on for 37 chapters of Job complaining to God, and then in the 38th chapter the Lord speaks. Holy moly does he speak. I’d encourage you to read it. There’s literally nothing Job can offer up when God speaks back to him and asks him a series of questions like,”Have you ever given orders to the morning, or shown the dawn its place, that it might take the earth by the edges and shake the wicked out of it?”

WHAT?! Clearly, we’ve never asked those questions or even thought about something like that! The sun rises in our world, but we don’t give orders to the morning (what does that even mean!).

One of my favorite questions God asks Job: “Do you send the lightning bolts on their way? Do they report to you, ‘Here we are’?” What a visual!

When God says his ways are higher than ours, they sure are! Job 38-42 puts me in awe of God and gives me the perspective I need.

Job lost everything. Reagan lost everything. Job got everything back DOUBLE what he had! And that’s what I’m praying for Reagan and for our little family. God give us back everything that was taken away and bless us in double fashion!

Job 40:12-17:

The Lord blessed the latter part of Job’s life more than the former part. He had fourteen thousand sheep, six thousand camels, a thousand yoke of oxen and a thousand donkeys.  And he also had seven sons and three daughters. The first daughter he named Jemimah, the second Keziah and the third Keren-Happuch.  Nowhere in all the land were there found women as beautiful as Job’s daughters, and their father granted them an inheritance along with their brothers.

After this, Job lived a hundred and forty years; he saw his children and their children to the fourth generation. And so Job died, an old man and full of years.