How did we get here?
Sunday was Mother's Day. Thank you to all the mothers out there. You have my greatest admiration and respect. Especially all of the single mothers. They are amazing.
A day of reflection. I miss my grandmother. I miss Sunday weekly talks with her. She was like a mother to me when mine could not be. A day of happy tears, getting a beautiful card handwritten for the first time from my boy, sad tears (my mom is gone on to the next world, and I miss her, too), and anxious tears. I never, ever thought I'd be able to have a child. In fact, I was told I would never carry a child to term. It was true.
It was a day of how's. A day of me running questions in my mind.
I spent the day with my guys (husband and son) and we had a lovely day, indoors...because...
rain. I'm always grateful for the rain.
We decided after lunch to go to see a movie. My choice. Seriously? No action or cartoons. Yes...!
A friend suggested "Miracles from Heaven" when we talked about my little guy after an appointment a week ago. She said she thoght of me. So, off to the Cinema 6 we went after I previewed the trailer online. I was unprepared for what happened.
The beginning sets the stage well, then... Sickness...
Sickness very similar to my son's, including all the wreched things that go along with it. Because I don't want to give away any of the plot, I'll just tell you what it was like for us to watch it.
Me: I cried the entire film.
Little one: Acted like it was a horror movie. At one point crouches down in the seat, takes cover under my armpit and says, "Get me out of this place!" (keep in mind I showed him the trailer and he begged to go). Complete panic and fright until I calmed him down by lying to him. (Bless me Father..._
Husband: Mouth open, frowny face, throughout...then tears. And silence.
At the end we released holding our breaths.
How on earth did we get here?
Where going to a movie feels like endurance of the fittest PTSD victim. We were having such a great day. The movie took us all on an emotional roller coaster. You can read the book, see the movie, read the reviews, but nothing will take you inside our lives more than watching the movie as if you're the parents in the plot. Alone. In the dark. Because that's what our life is like right now. We are in the dark.
I decided that it's time to start writing more about what we're going through, because due to healthcare reform and other issues related to finances, friends are stepping forward and will be creating a go fund me page for Gerard. He needs angels. And fast. Angel investors, to be specific. Here's why...
I've had to stop working, which is demoralizing and humiliating. Because, unlike older children, younger children need attention immediately when they are chronically ill. Their tiny little bodies can decline much more quickly and wither down to nothing when you take your eyes off of them while they are this sick. The day I start applying for jobs and accept one is the day he is too sick for me to go into work. Other moms with chronically sick kids understand. Chronically sick kids with mystery illnesses give parents no wiggle room to work. Keeping the child safe and being their advocate to keep them alive is hard work.
We will be going to Mayo in June. On a wing and a prayer. We've saved enough money to get there, but there's nothing else left. No more reserves for a "rainy day disaster" should it happen (and there have been many of those this year), savings are gone, retirement accounts... All of it. All spent on medical bills and treatments and medicine and healing food since last June. Example; Monday. Opened mail. New stack of medical bills amounting to over $3,000. Had just paid bills on Friday (owed $2,090 for various medical balances). Hubby has panic attack.
We both need anger management classes.
Because we have insurance! Decent insurance! State insurance. They aren't covering so much...and are denying a lot...and are making lots of mistakes. Plus getting a $5 overdue notice sent to collections because no one called us about an eye exam bill? What? Yes... Yes. Yes.
Want to know what's frustrating about it. People ask...
Isn't my husband retired military? Yup. Doesn't your husband have a good job? Yup. But those benefits do not kick in until retirement age. He's not there yet. Do I have insurance? Yes. Through his employment. Between the three of us, come July, we will be looking at another $15,000 deductible. How is this even considered helpful? We are living on $50 a week after bills, taxes and medical bills. Sometimes.
Apply for disability? Get a divorce on paper? File for bankruptcy? Sell our home? These are the games people must play now. And when I hear presidential candidates speak, I only assume everyone in their lives is perfectly healthy. Seriously? With the crap people are fed and drink, the air we breathe and the chlorine in the water? Right... And if someone tells me, "Yes, but you have a husband..." one. more. f-ing. time. Yes, I do have a husband. Thank God! See the movie. You'll get it.
How does an educated couple get to this point? I've no idea. I don't pretend to understand. I ask God every day if he's really out there. I have faith that he is. I guess. But what I do understand is how people go bankrupt through no fault of their own. Fiscally conservative, responsible people who have worked their entire lives. Played by the rules.
It's pretty easy. Be good. Go to school. Get degrees. Get good jobs. Have a sick child. Have to quit job (one of you must quit to care for sick child). Try to utilize the medical system to keep child alive. Sick child? One that the system can only keep alive using experimental drugs that have horrible side effects that cause the disease to worsen. Chemo. Other dangerous drugs. This is a child! He is NOT an adult! We are doing everything we can to survive. I have no solution, other than not to give up.
Someone told me I need a better attitude. Someone else told me that from the outside, everything looks OK. He's alive! You should be grateful he's alive! Someone told me she was "holding space" for us. Whatever that means. I'm sure the intentions were good. Another said it was all caused by stress. Another said it's God's will that he's sick. Another person told me they don't know what to say to me. That person was the most honest and caring of all. And I love them for it. Because I don't know what to say when people tell me, "Well, he looks good!" Because, yes, he looks good.
And I know the truth. Nobody here is in control. We are treating a bullet wound with a tiny bandaid. Because a bullet wound could be healed by now. That, my friends, would be much simpler.
Good night.
A day of reflection. I miss my grandmother. I miss Sunday weekly talks with her. She was like a mother to me when mine could not be. A day of happy tears, getting a beautiful card handwritten for the first time from my boy, sad tears (my mom is gone on to the next world, and I miss her, too), and anxious tears. I never, ever thought I'd be able to have a child. In fact, I was told I would never carry a child to term. It was true.
It was a day of how's. A day of me running questions in my mind.
rain. I'm always grateful for the rain.
We decided after lunch to go to see a movie. My choice. Seriously? No action or cartoons. Yes...!
A friend suggested "Miracles from Heaven" when we talked about my little guy after an appointment a week ago. She said she thoght of me. So, off to the Cinema 6 we went after I previewed the trailer online. I was unprepared for what happened.
The beginning sets the stage well, then... Sickness...
Sickness very similar to my son's, including all the wreched things that go along with it. Because I don't want to give away any of the plot, I'll just tell you what it was like for us to watch it.
Me: I cried the entire film.
Little one: Acted like it was a horror movie. At one point crouches down in the seat, takes cover under my armpit and says, "Get me out of this place!" (keep in mind I showed him the trailer and he begged to go). Complete panic and fright until I calmed him down by lying to him. (Bless me Father..._
Husband: Mouth open, frowny face, throughout...then tears. And silence.
At the end we released holding our breaths.
How on earth did we get here?
Where going to a movie feels like endurance of the fittest PTSD victim. We were having such a great day. The movie took us all on an emotional roller coaster. You can read the book, see the movie, read the reviews, but nothing will take you inside our lives more than watching the movie as if you're the parents in the plot. Alone. In the dark. Because that's what our life is like right now. We are in the dark.
I decided that it's time to start writing more about what we're going through, because due to healthcare reform and other issues related to finances, friends are stepping forward and will be creating a go fund me page for Gerard. He needs angels. And fast. Angel investors, to be specific. Here's why...
I've had to stop working, which is demoralizing and humiliating. Because, unlike older children, younger children need attention immediately when they are chronically ill. Their tiny little bodies can decline much more quickly and wither down to nothing when you take your eyes off of them while they are this sick. The day I start applying for jobs and accept one is the day he is too sick for me to go into work. Other moms with chronically sick kids understand. Chronically sick kids with mystery illnesses give parents no wiggle room to work. Keeping the child safe and being their advocate to keep them alive is hard work.
We will be going to Mayo in June. On a wing and a prayer. We've saved enough money to get there, but there's nothing else left. No more reserves for a "rainy day disaster" should it happen (and there have been many of those this year), savings are gone, retirement accounts... All of it. All spent on medical bills and treatments and medicine and healing food since last June. Example; Monday. Opened mail. New stack of medical bills amounting to over $3,000. Had just paid bills on Friday (owed $2,090 for various medical balances). Hubby has panic attack.
We both need anger management classes.
Because we have insurance! Decent insurance! State insurance. They aren't covering so much...and are denying a lot...and are making lots of mistakes. Plus getting a $5 overdue notice sent to collections because no one called us about an eye exam bill? What? Yes... Yes. Yes.
Want to know what's frustrating about it. People ask...
Isn't my husband retired military? Yup. Doesn't your husband have a good job? Yup. But those benefits do not kick in until retirement age. He's not there yet. Do I have insurance? Yes. Through his employment. Between the three of us, come July, we will be looking at another $15,000 deductible. How is this even considered helpful? We are living on $50 a week after bills, taxes and medical bills. Sometimes.
Apply for disability? Get a divorce on paper? File for bankruptcy? Sell our home? These are the games people must play now. And when I hear presidential candidates speak, I only assume everyone in their lives is perfectly healthy. Seriously? With the crap people are fed and drink, the air we breathe and the chlorine in the water? Right... And if someone tells me, "Yes, but you have a husband..." one. more. f-ing. time. Yes, I do have a husband. Thank God! See the movie. You'll get it.
How does an educated couple get to this point? I've no idea. I don't pretend to understand. I ask God every day if he's really out there. I have faith that he is. I guess. But what I do understand is how people go bankrupt through no fault of their own. Fiscally conservative, responsible people who have worked their entire lives. Played by the rules.
It's pretty easy. Be good. Go to school. Get degrees. Get good jobs. Have a sick child. Have to quit job (one of you must quit to care for sick child). Try to utilize the medical system to keep child alive. Sick child? One that the system can only keep alive using experimental drugs that have horrible side effects that cause the disease to worsen. Chemo. Other dangerous drugs. This is a child! He is NOT an adult! We are doing everything we can to survive. I have no solution, other than not to give up.
Someone told me I need a better attitude. Someone else told me that from the outside, everything looks OK. He's alive! You should be grateful he's alive! Someone told me she was "holding space" for us. Whatever that means. I'm sure the intentions were good. Another said it was all caused by stress. Another said it's God's will that he's sick. Another person told me they don't know what to say to me. That person was the most honest and caring of all. And I love them for it. Because I don't know what to say when people tell me, "Well, he looks good!" Because, yes, he looks good.
And I know the truth. Nobody here is in control. We are treating a bullet wound with a tiny bandaid. Because a bullet wound could be healed by now. That, my friends, would be much simpler.
Good night.
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