The medicine is his infusion meds. They are shipped to us once a month. Shipment is set up and can only come on certain days due to the dry ice and speed it needs to get here. It is extremely expensive, and I always watch for "the box" and get it in as soon as possible. Without these meds, Andrew's immune system numbers would plummet. He was be not only susceptible to everyday illnesses but also diseases. There is a huge concern about these patients getting pneumonia or something they could not fight off.
Once again, I was so mad. I had worked and researched, and we bought a new plan with the same company. It is expensive, but it had a deductible we could somehow meet if needed. It was hard to know if his medicines were covered, because they are all very vague and not very knowledgeable. But we did the best we could.
So he missed over a month, and THEN we could not get his old insurance coverage cancelled because our company was so backed up. It took another two weeks to get it all straightened out.
By this time, I had been given a nurse case manager. She totally understood the problem and was as frustrated as she could be. She went several levels above her to get him off the old insurance. It was a miracle, looking back, that she was able to do that. And I prayed that during that time someone who could change some of this would pay attention. So another couple of weeks went by, and Andrew's numbers went even lower.
Then he got the infusion meds. And he was not in the hospital or too sick during that time.
I will tell you this. When our nation's leaders talked about the new health plans, I listened. And they have not done what they said. Either they did not know what they were talking about or did not care, I don't know. But it's frustrating to know they do not care about people like my child. I am not disrespectful, but I cringe when our leaders don't tell the truth. And this time, it affected our family greatly.
His numbers have gone back up, I am sure. We actually go to the doctor tomorrow to get him checked out. We are three years into a hopeful two year treatment. That is discouraging to me. The longer it drags out, the more it seems it will be forever. Not really forever, but for the rest of his life.
I was just thinking tonight of a prayer Peter prayed for Andrew one time. Pete and I both were praying for something specific, and Peter just prayed for Andrew to be healed and to "never have to worry about this stuff again." After hearing Peter's prayer, we changed ours.
He still has bad seizures every once in a while. They used to be at home at night, with us. He has had one in class, one at a track meeting, one before a race, and one while walking to study on campus. It's scary when my phone rings, and he is not with me. I hear an ambulance and try to rule out that it's going to Andrew. He still gets sick at the worst times. But he keeps going.
Andrew and Sam do not have perfect bodies here in this life. So they are not tied to this world as tightly as some. And that can be a blessing if it is looked at and taken the right way.
We want to be "normal" and not have to fight so much, or learn so much, or travel to doctor appointments instead of fun vacations. But this is our story. And our job is to live it the best way we can. To live it well - in the eyes of Jesus. I keep hearing about my "story" in different places from different people (because we all have a story to share), and that perspective has really helped me.
Nichole Nordeman has a song that talks about going back and doing things the easy way. She says that if we don't know midnight, we won't know morning. And it's true. If we don't have the trying times, we cannot see God work in our lives. God is my constant. My only constant in a sea of change. I am so thankful for that.
Life here is not about a perfect life. It's about living a life that points others to Christ. I know God brings lots of happiness and joy here on this earth, but it pales in comparison to what He has for us for eternity. And I need to remember that more. I need to remember that tough times have a purpose. My job is to lean on Him and trust Him to show us the way. It doesn't mean giving up. We need to take care of our children and take care of our responsibilities, with His help and guidance. I need to give Him my burdens and stop taking them back. And in weird-sounding way, I need to be thankful for the things that He allows that will do good things in the big picture. So songs like this help remind me to keep perspective. God is love. He loves me more than I can imagine. He loves you that way too.
Life here is not about a perfect life. It's about living a life that points others to Christ. I know God brings lots of happiness and joy here on this earth, but it pales in comparison to what He has for us for eternity. And I need to remember that more. I need to remember that tough times have a purpose. My job is to lean on Him and trust Him to show us the way. It doesn't mean giving up. We need to take care of our children and take care of our responsibilities, with His help and guidance. I need to give Him my burdens and stop taking them back. And in weird-sounding way, I need to be thankful for the things that He allows that will do good things in the big picture. So songs like this help remind me to keep perspective. God is love. He loves me more than I can imagine. He loves you that way too.
Sunrise (Nichole Nordeman)
If I had the chance
To go back again
Take a different road, bear a lighter load
Tell an easy story
I would walk away
With my yesterdays
And I would not trade what is broken for beauty only
Every valley
Every bitter chill
Made me ready to climb back up the hill
And find that...
You are sunrise
You are blue skies
How would I know the morning
If I knew not midnight?
You're my horizon
You're the light of a new dawn
So thank You, thank You
That after the long night, You are sunrise
There's a moment when
Faith caves in
There's a time when every soul is certain God is gone
But every shadow is evidence of sun
And every tomorrow holds out hope for us
For every one of us
You are sunrise
You are blue skies
How would I know the morning
If I knew not midnight?
You're my horizon
You're the light of a new dawn
So thank You, thank You
That after the long night, You are sunrise
You alone will shine
You alone can resurrect this heart of mine
You are sunrise
You are blue skies
How would I know the morning
If I knew not midnight?
You're my horizon
You're the light of a new dawn
So thank You, thank You
That after the long night, You are sunrise
You are sunrise
To go back again
Take a different road, bear a lighter load
Tell an easy story
I would walk away
With my yesterdays
And I would not trade what is broken for beauty only
Every valley
Every bitter chill
Made me ready to climb back up the hill
And find that...
You are sunrise
You are blue skies
How would I know the morning
If I knew not midnight?
You're my horizon
You're the light of a new dawn
So thank You, thank You
That after the long night, You are sunrise
There's a moment when
Faith caves in
There's a time when every soul is certain God is gone
But every shadow is evidence of sun
And every tomorrow holds out hope for us
For every one of us
You are sunrise
You are blue skies
How would I know the morning
If I knew not midnight?
You're my horizon
You're the light of a new dawn
So thank You, thank You
That after the long night, You are sunrise
You alone will shine
You alone can resurrect this heart of mine
You are sunrise
You are blue skies
How would I know the morning
If I knew not midnight?
You're my horizon
You're the light of a new dawn
So thank You, thank You
That after the long night, You are sunrise
You are sunrise