Winners

Danielle Steel, one of my favorite authors..... I'm reading one of her newer books called, "Winners" I think it'll be a favorite. Malice and Accident are two others.

My world is medical. It's what fate decided for me I guess. It's not what I planned, what I planned first was being an entomologist, then a music teacher, then a therapist for abused kids, then life chose my fate.... Even once we get past all the stuff with either of the kids, I'm forever changed. I'll forever know what certain terminology means. Someday I'll likely work somewhere in the medical field now.

Even now as devastating losing Dallas has been, a lot has arisen from the ashes. Without spoiling Winners, it spoke many volumes to me. Some of the quotes from the book will be here but in many ways, I am like Bill, the father of Lily. Bill had so much anger and denial about not just what happened to his daughter but also anger for a while at any neurosurgeon who disagreed that Lily will walk again. Mine was Dallas, that nothing was better, I hated the new insurance company for causing this disaster in our lives and so much more....

Winners, even though it isn't finished, (1/3 left) really has touched me. I don't know if it's a matter of how "brave" everyone in the story is, or where I am in our real life journey right now or both. I want to share a few segments out of Winners that really resonated with me.

"I'll introduce you to my friends when they come to visit. The kids from my ski team said they would come by too," she volunteered, and Teddy looked skeptical. "Don't count on it, Lily," he said gently. "People mean it when they say it, but they're busy in the real world. They stop coming after a while. It's like we're shut away, and they forget. Whenever people leave here, they say they'll come back and visit, and they never do. And I think it makes people who don't have injuries uncomfortable to come here. It freaks them out to see us and realize it would happen to them. Don't expect your friends to come here too often. They just don't. I've seen it a lot in two years." He sounded philosophical about it, and he didn't want her to be disappointed and was sure she would be.

Another segment was:

He had been right about her friends - they never came to visit her. They always had an excuse not to, and instead of calling her, they texted her, "Sorry, I can't come by today... see you tomorrow." and tomorrow never came. "Oops, running late, catch you next time." "My mom won't let me go out.... my car broke down... I have exams... I have practice.... My dad won't let me drive the car." They had a thousand excuses not to visit her in rehab. Maybe it was just too hard for them, but it was a lot harder for her. It was what Teddy had predicted at the beginning. He had seen it happen to others in the past two years. He had seen very few friends come through and stick around. And Veronica, her best friend, was the worst offender. Lily got the feeling that she was trying to be Lily now, on the ski team, and with their friends. And she had seemed so fake the one time she did come to visit. She didn't even feel like a friend now, just someone Lily used to know. (Lily's boyfriend cheated on Lily while she was in the hospital and broke it off while Lily was just starting rehab also.)

One more was:

Thinking about The Lily Pad filled a void for Lily, and distracted her from the fact that none of her friends were coming to see her. Besides Veronica, a few of her classmates finally came once, and were so shocked to see Lily in her wheelchair that they didn't come again. They didn't know what to say or how to handle it so they didn't come at all. She talked about it to Teddy, but not to her father. She was too embarrassed to admit that she had no friends anymore. She felt like a total loser and as though she had ceased to exist for them. And in a way, she had. What had happened to her was just too shocking for them to absorb. Teddy was always sympathetic, and he was her only friend now, at the toughest time of her life.

Teddy was abandoned by his parents after he became a quadriplegic and was left at the Craig facility.

I remember anytime I left for a placement, I was told friends (What few I had) would be in touch with me, and especially when I moved out of the last group home and went back home and to the school district I had been in for a good while prior. Never happened. I would call them but they never called me and finally I quit trying, especially when all I got was excuses on why they couldn't talk long, if at all. Even after moving to Arkansas, except for once in a great while, a Facebook comment here or there, there are two I hear from still that I knew then.

Then the medical world changed a lot too. The older I get and the longer this medical journey lasts, the more and more silent my world becomes. The social life, what little I had, is barely anything now. Yet early on, I hated that. Now I sometimes cherish it. No drama! Sometimes I hate it still though.... I only wish the phone calls with insurance, clinics, and more was better sometimes. Not all are bad but sometimes even that is tiring, especially when people don't wanna listen or realize how serious something is.....

In a way it may sound corny but this is exactly the way I have seen how this change in our medical world was. Except my island wasn't goofball, it was Texas. I see where this devastation would fit many things, for different people. For our most recent, it being that we lost our team in Dallas due to insurance.

For a while now Inside Out has been my son's favorite movie. All he wants is Bing Bong, the imaginary friend.

credit

Yet the other day, watching this for the millionth time with him, watching the face on Joy as that island fell and disappeared, made me think of this change in the journey.

credit

I'll be honest though, my personality is more like Sadness.... Yeah, as if that was never noticed. lol Yet sometimes I think too much too. *Imagine that!* So yeah....

Yet if you have seen the movie, at the end Joy and Sadness worked together to make a new island. That's what has happened here in a way. It's scary though honestly... Yet I'm starting to see that maybe, just maybe there is hope and restoration in this horrible mess.

You see, my son's MRI looked great. All four doctors (Two we had in Dallas and the two new ones) said it did. Yet almost like it was a hunch, the new craniofacial doc had us go down the same day for a CT scan. That was fun..... Insurance wanted to be stupid about it and also all my son did during it was cry..... Though at least we were able to get the imaging needed. Now though the MRI was good, the CT was not. It showed fairly significant copper beating and more...

THEN not two weeks after the CT scan and plans to do something in a few months about it, we find out he has grade 3 papilledema. Oh boy.... Never saw that actually happen in either of my kids, though I knew what it was.... Game on though because things better get done in a timely manner now. If Dallas could have gotten my daughter's surgery last surgery done in 2012 within a month of things going south, surely that could be done in a smaller state and everything, if not even better timing.

via GIPHY

It took a couple of days of fighting scheduling stuff and me about to do the momma bear stuff to get all settled. I always stayed professional but I was firm in as late as mid December was not acceptable. I was told at first that it may have to be then.

via GIPHY

We do have a surgery date finally. A lot to do between now and then though....

Yet even last night as I'm tying this part up, a song came on in one of my playlists that I listened to a lot before and during the time of my daughter's last surgery in Dallas. Let it burn. Yet the epiphany I had listening to it, on repeat for a while.

I watch the city burn
These dreams like ashes float away
Your voice I never heard
Only silence
Where were you when our hearts were bleeding
Where were you? It all crashed down
Never thought that you'd deceive me
Where are you now?

How long can you stand the pain?
How long will you hide your face?
How long will you be afraid?
Are you afraid?
How long will you play this game?
Will you fight or will you walk away?
How long will you let it burn?

I watched my security in Dallas burn down. I watched it fall, it came down with a heavy crash covered in ashes. I cried out to God with tears, anger, despair, all of it. I felt like all I was hearing was silence. I felt like God deceived me, punishing me, going to make my kids suffer.... Yet all I did was hide behind my fear and anger..... My world crashed and there was nothing I could do about it......

Just like Bill in Winners.... Helpless against the waves that continued to crash into the wreckage left by the storm....

I have no choice though now but to hope.... Hope that my children will get what they need.... Hope that in the frustrations with these changes that I don't scare off the new team, that in fact I can show them that I'm an ally. Just like I was an ally with Dallas. Yet even with Dallas I was not afraid to speak up. I hope most of all, that as the unknowns approach, that this team will care for my children as well as Dallas did, if not even better....

I sure am going to miss this skyline though..... Nothing I can do about that.....

I'm going to have to get used to a new skyline at night, if I get to see much of one. I was one of the lucky ones to get this view the last two nights being admitted with my son following his decompression surgery.... It's a view I'll never forget.... It was an even better view in D-10 than it was at the Ronald McDonald House. That's a place I will miss too....... For many reasons....

The rules here are so different and our chances of ever getting a room at the one in Little Rock are almost nil, let alone getting for more than one night, no matter the reason, inpatient or not. Maybe part of that is we live over two hours out from the Little Rock one, not three and a half hours, which is about the farthest one could go in Arkansas to get to Little Rock. So, as I will always, ALWAYS support that charity, I will miss Dallas for several reasons.....

Too bad insurance doesn't cover hotels as secondary placement to the RMH.....

No matter what though, by the end of this journey, we will have won.... I just wonder how disheveled I'll look at the end. I'm definitely not model material now as it is and never was.

via GIPHY

Blessings!

~ Special Momma ~