I went into 2017 figuring all would certainly not be perfect in the medical world but at least maybe we would stay stable in Dallas as well.
All was stable till we went to Dallas in March and on the way home I got a call saying any increase in headaches and we were to come back to Dallas for at least ICP testing and likely another cranal vault. That was just the beginning...... The motion sickness out of my son was trying to pick up again so anytime he would cough in the car, I expected pukes and hoped that I had a good change of clothes, lots of Lysol wipes, puke bags or at least an empty cup and a very patient and forgiving daughter that would catch for me while I drove.... That went on for months. It was our normal.
Summer rolls around and so far so good. No worse issues out of my daughter and my son was doing good beyond occasional motion sickness. Not far into June our world changed forever......
New insurance. Thus the war was on again to keep Dallas. We had these fights some over the years but nothing like this. Ten years of documentation accrued plus the three years worth for my son all gathered. EOB's and so much more. All to provide proof of continuity of care for my kids. Many phone calls with case management of the new insurance, doctors in Dallas and the pediatrician. I had a small army fighting and praying. We had hope. My son was due there soon, we had the Ronald McDonald House set and waiting to know the day of travel if we had a room or not. I had the name of our frequent flyer back-up hotel ready just in case like I had for years.
Than all crashed.....
August 30th, almost a full month since insurance has been switched, we lost the war. It was probably the hardest call the pediatrician's nurse had to give us. I bawled...... I did. In all the years of having that clinic see us, that was the first time they had ever heard or seen tears.
Though also which I know is how the medical world works, as soon as I had told Dallas what had happened and that we would no longer be able to travel, I have heard nothing from them. I have however been in email correspondence with the cranio doc we had and I have updated him on how things have gone since. I have gotten a few replies.
Yet here it is months later and in a sense I still grieve. It sounds nuts but to talk about Dallas with good memories yet then remember it is no more still stings...... I won't miss the traffic though!
I also grieve in that we'll never see the Ronald McDonald House in Dallas again either. That place despite so many stays, had many good memories of the kids playing, thriving, the families we met and more.
Despite that I have more confidence in the current team, especially thanks to how they handled my son's last surgery that we were NOT planning on, I do have greater respect for them as well. I only wish now that Children's can do a better job about the appointment center making timely appointments. A six month follow-up should not wait to be scheduled till past that six month mark..... The kids were SUPPOSED to see their neurologist every six months but lately it's been every 9 months or more because people can't get things done right....
So much more has changed as well. I've blogged on this in the past so I won't get into it much here but my social life is pretty much non-existent. It's never been much since college anyway but even less in the last few months. Both real world and Facebook. I think I'm liver sauce because most nobody likes that. Many broken promises and people giving on me over the years, even recently. I'm used to being a loner now but sometimes the memory of what I once was shows its ugly face. People don't want to hang out with me for whatever reason and I've accepted that. Usually...... All I need are those that are willing to accept me for everything that I am and my household along with those I am around at Celebrate Recovery and the rest can keep their Chick-fil-A sauces. Link
"Not being invited to the party or out shopping or just hanging out with your friends hurts. And both my kids (and I) have experienced that feeling.
I hope they grow up to understand what this wise woman knows—You can’t be everyone’s favorite sauce so don’t try! Thank you Amy for these wise words—"
~ Melissa Blatt Lambert ~
(Written by Amy Weatherly)
In & Out Beauty by Amy
“So, a couple of friends and I went and grabbed lunch at chic-fil-a a couple of weeks ago. It was delightful. We spent roughly $20 a piece, and our kids ran in and out of the play area barefoot and stinky and begged us for ice cream, to which we responded "not until you finish your nuggets," to which they responded with a whine, and then ran off again like a bolt of crazy energy. One friend had to climb into the play tubes a few times to save her 22-month-old, but it was still worth every penny. Every. Single. One. Even though we were all wearing stretchy workout pants and headbands to hide our greasy hair, the staff still refilled our sweet tea. With a smile. And extra ice. And nobody stared when our kids screamed and squealed and acted like tiny fools. And everyone said "My pleasure," even when they had to sweep the mess of crumbs off the tile floor that our precious tyrants left behind.
I just love that place. The only way they could make it better, in my opinion, is to add babysitters, but I won't push too hard for that. I'll leave that one alone. Because, I dunno. Maybe that's a lot to ask of an establishment that sells $6 spicy chicken sandwiches out of paper bags and plastic trays. Maybe. Or maybe I'll write a letter, I don't know. I need to mull that decision over.
So anyways, we are eating. And I look at the half-eaten dipping sauces spread out on the table before us. I have chic-fil-a sauce, because, let's be honest, it's the best. Someone else has Polynesian, and someone else has good ole, classic ketchup.
And I laughed, because, 1. How could everyone not like the chic-fil-a sauce?!?!? I mean, seriously and 2. It reminded me that everyone is different, and everyone chooses differently, and what everyone needs varies. So I probably shouldn't take it so dadgum personally when someone doesn't like me, when someone doesn't want to be my best friend, when I feel left out or excluded. I mean...I can't do it. I can't be everyone's chic-fil-a sauce. And neither can you.
For some people, you are going to be too salty, and for others, you are going to be too sweet. For some, you will be too bold, and for others, you won't have enough flavor. You will be too much and not enough for some people's taste buds to handle and THAT IS OKAY.
That is soooo okay. God didn't make you to be loved by everyone. He didn't make you to be one-size-fits-all and generic and boring. He did not send you to this earth so that you could please all the people. He did not create you to be popular or to be invited to all the parties or to be included in every group text. He made you to love Him, and to follow Him, and to carry out His very specific purpose by being your very own distinct flavor.
Your flavor won't be for everyone. Take a deep breath and learn to be okay with that.
And the next time the devil tries to attack you, or make you stumble over the vicious lie that you are less than, or insecure, or like something is wrong with who you are, because you are feeling rejected, or alone, or unliked, repeat these words. Scream them if you must: I CAN'T BE EVERYONE'S CHIC-FIL-A SAUCE. And then just keep on running the race God has set out before you. Run it hard. Run it good. Run it long. And run it in your very own style.”
Easy to do sometimes, other times not. Often not, right?
So I hope that as we go into 2018, no surgeries, no changes in quality care for my children, good health and that I accept whatever fate has for me, even if that means I keep being a black sheep in the world of "normal" sheep...... Myself and my kids will be stronger for it.
I hope though too I can find out in 2018 why my son keeps dealing with hypoglycemia without warning.... It's not often but often enough to keep me on edge to watch like a hawk and not feel like I have to test him all the time. I don't, but only when he seems "off" yet those that know me, know that just waiting isn't good enough for me. I wanna know why and how to fix it.
So anyway, here's to 2018.....
~ Special Momma ~
New insurance. Thus the war was on again to keep Dallas. We had these fights some over the years but nothing like this. Ten years of documentation accrued plus the three years worth for my son all gathered. EOB's and so much more. All to provide proof of continuity of care for my kids. Many phone calls with case management of the new insurance, doctors in Dallas and the pediatrician. I had a small army fighting and praying. We had hope. My son was due there soon, we had the Ronald McDonald House set and waiting to know the day of travel if we had a room or not. I had the name of our frequent flyer back-up hotel ready just in case like I had for years.
Than all crashed.....
August 30th, almost a full month since insurance has been switched, we lost the war. It was probably the hardest call the pediatrician's nurse had to give us. I bawled...... I did. In all the years of having that clinic see us, that was the first time they had ever heard or seen tears.
Though also which I know is how the medical world works, as soon as I had told Dallas what had happened and that we would no longer be able to travel, I have heard nothing from them. I have however been in email correspondence with the cranio doc we had and I have updated him on how things have gone since. I have gotten a few replies.
Yet here it is months later and in a sense I still grieve. It sounds nuts but to talk about Dallas with good memories yet then remember it is no more still stings...... I won't miss the traffic though!
I also grieve in that we'll never see the Ronald McDonald House in Dallas again either. That place despite so many stays, had many good memories of the kids playing, thriving, the families we met and more.
Despite that I have more confidence in the current team, especially thanks to how they handled my son's last surgery that we were NOT planning on, I do have greater respect for them as well. I only wish now that Children's can do a better job about the appointment center making timely appointments. A six month follow-up should not wait to be scheduled till past that six month mark..... The kids were SUPPOSED to see their neurologist every six months but lately it's been every 9 months or more because people can't get things done right....
So much more has changed as well. I've blogged on this in the past so I won't get into it much here but my social life is pretty much non-existent. It's never been much since college anyway but even less in the last few months. Both real world and Facebook. I think I'm liver sauce because most nobody likes that. Many broken promises and people giving on me over the years, even recently. I'm used to being a loner now but sometimes the memory of what I once was shows its ugly face. People don't want to hang out with me for whatever reason and I've accepted that. Usually...... All I need are those that are willing to accept me for everything that I am and my household along with those I am around at Celebrate Recovery and the rest can keep their Chick-fil-A sauces. Link
"Not being invited to the party or out shopping or just hanging out with your friends hurts. And both my kids (and I) have experienced that feeling.
I hope they grow up to understand what this wise woman knows—You can’t be everyone’s favorite sauce so don’t try! Thank you Amy for these wise words—"
~ Melissa Blatt Lambert ~
(Written by Amy Weatherly)
In & Out Beauty by Amy
“So, a couple of friends and I went and grabbed lunch at chic-fil-a a couple of weeks ago. It was delightful. We spent roughly $20 a piece, and our kids ran in and out of the play area barefoot and stinky and begged us for ice cream, to which we responded "not until you finish your nuggets," to which they responded with a whine, and then ran off again like a bolt of crazy energy. One friend had to climb into the play tubes a few times to save her 22-month-old, but it was still worth every penny. Every. Single. One. Even though we were all wearing stretchy workout pants and headbands to hide our greasy hair, the staff still refilled our sweet tea. With a smile. And extra ice. And nobody stared when our kids screamed and squealed and acted like tiny fools. And everyone said "My pleasure," even when they had to sweep the mess of crumbs off the tile floor that our precious tyrants left behind.
I just love that place. The only way they could make it better, in my opinion, is to add babysitters, but I won't push too hard for that. I'll leave that one alone. Because, I dunno. Maybe that's a lot to ask of an establishment that sells $6 spicy chicken sandwiches out of paper bags and plastic trays. Maybe. Or maybe I'll write a letter, I don't know. I need to mull that decision over.
So anyways, we are eating. And I look at the half-eaten dipping sauces spread out on the table before us. I have chic-fil-a sauce, because, let's be honest, it's the best. Someone else has Polynesian, and someone else has good ole, classic ketchup.
And I laughed, because, 1. How could everyone not like the chic-fil-a sauce?!?!? I mean, seriously and 2. It reminded me that everyone is different, and everyone chooses differently, and what everyone needs varies. So I probably shouldn't take it so dadgum personally when someone doesn't like me, when someone doesn't want to be my best friend, when I feel left out or excluded. I mean...I can't do it. I can't be everyone's chic-fil-a sauce. And neither can you.
For some people, you are going to be too salty, and for others, you are going to be too sweet. For some, you will be too bold, and for others, you won't have enough flavor. You will be too much and not enough for some people's taste buds to handle and THAT IS OKAY.
That is soooo okay. God didn't make you to be loved by everyone. He didn't make you to be one-size-fits-all and generic and boring. He did not send you to this earth so that you could please all the people. He did not create you to be popular or to be invited to all the parties or to be included in every group text. He made you to love Him, and to follow Him, and to carry out His very specific purpose by being your very own distinct flavor.
Your flavor won't be for everyone. Take a deep breath and learn to be okay with that.
And the next time the devil tries to attack you, or make you stumble over the vicious lie that you are less than, or insecure, or like something is wrong with who you are, because you are feeling rejected, or alone, or unliked, repeat these words. Scream them if you must: I CAN'T BE EVERYONE'S CHIC-FIL-A SAUCE. And then just keep on running the race God has set out before you. Run it hard. Run it good. Run it long. And run it in your very own style.”
Easy to do sometimes, other times not. Often not, right?
So I hope that as we go into 2018, no surgeries, no changes in quality care for my children, good health and that I accept whatever fate has for me, even if that means I keep being a black sheep in the world of "normal" sheep...... Myself and my kids will be stronger for it.
I hope though too I can find out in 2018 why my son keeps dealing with hypoglycemia without warning.... It's not often but often enough to keep me on edge to watch like a hawk and not feel like I have to test him all the time. I don't, but only when he seems "off" yet those that know me, know that just waiting isn't good enough for me. I wanna know why and how to fix it.
So anyway, here's to 2018.....
~ Special Momma ~
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