Today has been one of those days.
One of those days where all at once I realize again all that Miles can’t do.
One of those days where I feel like no matter what I do for him it’s never enough.
One of those days where he coughed and gagged and made such horrible mucus noises in Taco Bell where people turned around to stare at what could be making such a horrible noise. We ended up having to leave the restaurant so we wouldn’t gross anyone else out.
I woke up this morning trying to calculate the last time he had a wet diaper. He hasn’t had liquids stay in his body for a week and a half. I can’t feed him a bottle because it directly shoots right out of his nose. He hasn’t had 100 calories a day in his body in a week and a half. (Yes the doctor has seen him.) I’ve got to take him back to the doctor tomorrow and I’ll be surprised if he’s not in the hospital. You can see his ribs.
Which brings me to why the 27th is marked on my calendar. We’re meeting with a surgeon who will put a g-Button (feeding tube) in Miles. I’m at a loss on what to say about that right now. I understand it’s time. It just hurts my heart.
Of course the surgeon can’t even do the surgery until Miles’ lungs sound better. They’re so full of liquid that no one would operate on him.
Today I can’t pray for Miles to be healed.
It hurts too bad.
I’ll tell you what I can pray for though…I’m praying for someone to pay off the kid’s school today. TODAY. I’m not asking the Lord for a “sign”. I’m just tired. I just want the Lord to show me that he hasn’t forgotten about me. I want to know that he cares about the desires of my heart.
I don’t want to look back and see something the Lord did for me a year ago or 5 years ago or last week. I want to see something today.
Believe with me.
2 comments:
I believe. I know that God hasn't forgotten you...He hasn't turned the other way...He has you and your family in His arms. Not at a distance, in His big hands with the rest of the world crowded in. You are in His arms, close to His heart. It's like that song..."Lay back against You and breathe, feel Your heartbeat."
I agonized over getting a g-tube for my daughter. The thought scared me to death and I probably held out longer than I really should have.
Now, 11 years later, I realize it was the best thing I could have done. My Ashley finally started to grow, to be happy, to stay well - all because she was getting some nutrition in her.
And, she takes so many medicines that the tube is a blessing there also.
I've told some of my friends that I think all babies should be born with g-tubes just to make a mom's job easier during time of illness. I don't really mean that, but for Ashley and for me, the G-tube has been a Godsend.
If you ever want to talk about it, just let me know!
Deborah
Pipecleaner Dreams
5 Minutes For Special Needs
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