Saturday, December 31, 2011

Yes, We Have No Sitter

Since all of our babysitters are in Ohio and we live in New Jersey....that makes it kind of hard to really get too crazy on New year's Eve- or our anniversary- as they happen to be the same thing.
We knew that going in and I have to say I am really not that upset or put out. Our life is what it is. This is what we do. We are extremely careful about who watches our kids and though we are aware we may be being paranoid and nutty- it's ok with us. It really is. I can't compromise the safety of my kids because I want to go out and eat an overpriced meal and then go get a little tipsy somewhere.
We just had a family day today.

  • Early morning dance party hosted by The Butter Bean, complete with streamers, sparkly shoes and great Swing music.
  • Lunch while we sat and joked with each other.
  • Then a hike/meandering walk around the marsh.

We have laid in supplies for a bit of a party later on, to be finished with bowls of ice cream at midnight.
Until then, we will joke and laugh and play games and just enjoy this little family that has come about because a boy and a girl decided to get married those many years ago.

And believe it or not Les and I have had a couple of quiet moments to talk about the 18 years. I think we both know that this time with these young children won't last forever. Soon enough we will be able to go out and party when we want.
This is better.
Way better.
                                                                               Photo by Evelyn

Friday, December 30, 2011

Never Enough Time

Eighteen years.
How did THAT happen?
I mean to say, where did all of that time go?
18 years.
Leslie and I have been married for 18 years tomorrow.
There is quite an awful lot that I could go on and on about concerning our relationship and how we love each other. I really could...
But instead I will tell you this:
Sitting at the lunch table today, Les and I were talking, and the subject of our impending anniversary came up. We kind of looked at each other, a bit stunned and overwhelmed by the "almost 20 years" of this thing we did... have done...are doing... and in this quiet voice, he looks at me and sighs and says,  "Eighteen years. It doesn't feel that long".
And that was the most perfect, most romantic thing that he could have said or done.
And it's true.
It doesn't feel that long.
There is never quite enough time for the two of us to be together.
I feel that way and I know he feels that way and that is quite the bees knees after so many years.

Leslie, I love you more now than on that cold and snowy day 18 years ago. I love this life with you. I love our time together. I love our two crazy kids and mutant cat.
Thank you for these years and all of the ones to come.
Now, can we go play some more Skyrim?

Monday, December 26, 2011

The Verdict Is In

Evelyn has declared this to be, and I quote, "the most awesomest, best ever, most fun, five star Christmas ever!". Her parents agree.
As a parent, you sometimes get these crystal clear flashes of where you are in life, where you are heading, and a complete understanding of how absolutely precious your kids are. I had that this Christmas- nearly the whole time we have been a-Christmasing. I know that I was hyper-aware this year because of Brevin's HSFH- I hope that my awareness lasts. I hope that my heart never dulls and forgets how every single moment with these little people is a priceless gift.
Les filmed a snippet of the kids and I decorating the tree and as I watched it the next day, I was able to view it with that, "Mama's heart vision" and I saw my kids for what they really are: They are these incredibly small, innocent people. They are the magic bringers, the happy times, the things that make life worth living. They are my treasures. That vision also had a bit of a flash forward where I was acutely aware of how brief this time with them really is. I watched as Evelyn pirouetted about with her silver tights bunched up down at her ankles and Liam dropped the same ornament 6 times then tripped over the cat, then got bit by the cat, and my heart swelled inside of me until it hurt. 
Isn't that the best of what Christmas has to offer? That reminder that we are family, that there is love and enjoyment. It's a reminder that the cold and dark days do not last and that even in the darkest hour a few lights and family can awaken Spring in our hearts. 
The thing that I love best of all is that I asked Evelyn if she meant the presents or the tree and she said, "OH! All of it Mama! ALL OF IT! Us together, the cookies, the food, you and Papa, Liam, that bad cat, my cousin just... all of it". She gets it and that makes it easier for me to remember. 

Friday, December 23, 2011

Christmas Begins

Our Christmas did really and truly start the minute Brevin walked into his own home after 14 days of what I will call his "Hospital Staycation from Hell"- HSFH for short.

Then Grandma's house needed a tree...

Then we HAD to watch some Christmas movies...

Then the Dillons came home and started all over again....

Plus we baked cookies....

WHEW!! I think we may be almost ready for the big day...

You Know? Thanksgiving Did Actually Happen

Before I jump into the razzle, dazzle (snort) affair that getting ready for Christmas has been, lets remember Turkey Day. Shall we?

There we were at Smokewood, happily ignorant of the hell that was coming, and we feasted. Jodi came down from Geneva to spend some "quality" holiday time with us. There was turkey and gravy. Board games. Conversation. And what would Thanksgiving be without a bit of drama? So we had that too.
The food was excellent. The conversation was good. The yelling was entertaining (for some I suppose).

Notice something? No pictures of Brevin. Huh. That's because he was "sleeping" all day. Well played grown ups. Well played.
No pictures of Uncle Les because he was the photographer.

Then The Dillon Family went to Columbus to see The Klosterman Family. And there was more feasting, more conversation and pie.

And now onwards! To Christmas....

Tuesday, December 20, 2011

Heroes Emerge

This will probably be the last thing I write about concerning Brevin and all that he and Melissa went through but, I would be remiss if I didn't talk about the people in our lives that showed up and made a difference.
First, there was my parents, his Grandparents. I have never been a Grandparent so I can't begin to imagine what it's like to love a grandchild- so thinking about loving a grandchild that is fighting for his life is even farther away from what I am able to envision. I know that it was hard on them (and that is an understatement). I know that they were ragged and raw and just as lost as Melissa and I were. I know that they were there every single day. My Dad actually spent an entire 48 hours or more there at the bedside with them as I cared for my own children while they were sick. I know that my Mom was in a state of constant prayer and agony. I know that they were there and they did what they could. There was never any doubt about their love and commitment to that little boy.

This man who lived in his mother-inlaw's house for 6 days-essentailly alone, taking care of two kids- one sick and one frightened. The man that had my back, the only person I could look at and let out my grief and fear to. The man that returned to New Jersey alone to work his job, even though he wanted nothing more than to stay close to Brevin. The man that did not breathe easy until he saw footage of Brevin walking and running and chasing his daughter. My husband and rock, who is, according to Brevin, "The World's Greatest Uncle". He has the coffee mug to prove it. The man who would ferry his children one hour each way just so they could spend a few minutes with Brevin and eat a meal with their Mama. The man who loves Brevin like a father loves a son. 

Then we had the Aunt that would show up every single day. She sat with Melissa and I through at least two of her own vacation days from work and I am not sure that we thought to make sure she was eating. I know that she made sure WE had food and drinks. After her vacation days were over, she would work all day, grab a bite to eat and then show up at Brevin's bedside and stay as long as my sister needed her to- even if it was after her own bedtime. She would take the time to talk with my kids when they were there for a brief visit and she never failed to make them feel like things were as normal as they could be. She was strong and smart and she never let anybody get away with sub-standard care for Brev. She fought like a tigress when she needed to and she offered solid, common sense advice when she needed to. This is our Nonnie and we love her. 

Then there is the Aunt that would deliver entire meals of lasagna and bread- again after her own work day and after caring for her own family which includes her elderly mother (my Grandma). The Aunt that brought Faith - the one person that made Brevin leap out of bed. The Aunt that brought Nerf guns. This is our Mickey and we lover her too. 

And Faith..

And then there was Tilley (Jenny). My sister's friend from what? Junior High? Well, anyway they have been friends for a long while, so I was no surprised in the least by the way she showed up, prayed and cried over Brevin, lended us support just by being there. The way she got the word out. She truly is an overachiever in all that she does and I am so glad my sister has a friend like her. Heck I am glad that I can call her friend. She would leave her own boys, go in late to work, drive all by herself- just to sit with us. Just to be there. Just so we would know that we were not alone. And she would bring granola bars!

Then there is Tracy. Spacenik. The one that did surprise me. Her willingness to demand help for my sister, her audacious move to contact the HR Dept. at Melissa's job. Somehow I didn't get a picture of her. But she knows....what she did, what it meant. 

I have already talked about Mrs. Williams, Brevin's Kindergarten teacher. The woman amazed me. I will never forget her visits to Brevin's bedside and what it cost her to look at him and smile and not break down right there in front of him.

Then there was the love and devotion found in, what I think to be, a surprising place. We had the Step-mother that would work all night, then drive a long distance to see Brevin with her own eyes. She would arrive with balloons that made him smile and little sisters that made him laugh. I have no doubt that the feelings she has for Brevin are real and strong. 

The woman that sent a HUGE bag of snacks and slippers and magazines and blankets and puzzle books to the hospital- she rocks.

I would also like to talk about Nurse M. M was an absolute dream and I feel like she was an angel from Heaven. I could not have made it through those first two days without her and her quiet reassuring ways.

The good folks at my sister's work. The ones that donated money and PTO time. The ones that made the most awesome SuperHero Banner. I know that Melissa is in near shock at the generosity and love that came from old SamHo.

The people that would pray and pray and not even really know us. The entire 4th grade class at a certain Catholic School. The people on Facebook that prayed, left comments of encouragement and messages of love.

The family who prayed far and wide. My cousins. My Mother's cousins. 
The Aunts and Uncles. 

Our cousin Sarah who would come by on every day that she worked (she is a nurse in the same hospital) and most of her days off. The way that she could not rest until she checked all of the iv bags, the iv sites on his body and his general condition. How is it that I don't have a single picture of her either?! 
Sarah's brother, our cousin Chris who inspired Brev to throw a ball all of the way across the room.

The parents and teachers at Brevin's school. The outpouring of support in almost every way has left us all with a renewed faith in humans. I am not exaggerating- they have been amazing. Every child in Brevin's class has kept their well wishes, the pictures, their precious crumpled dollars rolling in- I hope every child in that class has the best Christmas ever because they are GOOD kids. 

If you said a prayer for Brevin... If you left a comment on this blog, Facebook, or Caring Bridge. If you stopped any part of one of your days to think of Brevin and send him good thoughts...If you sent money, cards, food...If you donated PTO time... If you were a Doctor that decided to treat both illnesses..If you are a Nurse that was right there in the trenches with us...If you made him a picture... Sent him a bear...

We thank you.
We are so moved by the things that you have done.
And please know that every single pto hour, every card, gift card, dollar and prayer were needed. Truly needed. 

This blog entry is no way was meant to include some people and not others. I tried my best to remember in detail, all of the things that were done for Brevin and Melissa. If I have somehow overlooked you here- please know that Melissa knows better than I where the help and support came from. (And I am sure I will get a call informing me of my lapses because she is truly amazed and grateful for your help.)

I have spoken of a fundamental change that has taken place with in my heart. Half of that change comes from seeing what God can do, and the other half comes from seeing what good hearted people can, and will do when called upon. I may never be able to repay any of you in and profound way but please know that I will strive to live by your example and pass along the kindness and generosity that you have sent our way.

In the words of Jenny..."look what God gave us!"

On Believing...Part 3

So how can I explain to you what it is like to end up in this place? This hospital room miles away from your home and a million miles away from anywhere you have ever wanted to be.
When the medical types told us to expect two weeks before we saw any progress- my brain kicked in overtime. I realized that Brev hadn't eaten in about 3 days- so I pushed for them to place a feeding tube. Now this is something that they absolutely would have done anyway but not until the next day or the day after. I REALLY wanted him getting nutrition because how else could he heal?  In goes the tube. They placed what they call an ND tube. It was a very thin tube that went in his nose, down his throat, down to the stomach and beyond, to the duodenum. From the Nose to the Duodenum. ND.
The reason for this is to bypass the stomach. If you don't have a big amount of liquid feed sitting in your stomach you don't get nauseous and you don't throw up and you don't get an aspiration pneumonia. Great in theory. Brev's tube kept slipping up into his stomach because there was a difficulty getting it in just the right place. We did have periods of nausea then. And vomiting. This boy went through about 3 or 4 placements of that tube. Can you even imagine? Melissa stood there every time and held his head and looked him in the eyes and tried her best to make it easier.

We also had special boots on his feet to keep his Achilles' tendon stretched out so that when he was ready to walk again, his feet would be ready.

When I speak of these procedures, they were all brutal. Brevin FOUGHT each and every one. Even when we thought he couldn't move, it would take 4 or 5 adults to hold him down for "procedures". I  hated being one of the adults holding him down, I hated seeing him fight and exhaust himself but I did like to see that fight. Because fighting is what Brevin does and that part seemed so normal to me. But seeing him on that bed essentially being tortured was enough to make my head spin and make me feel like I was either going to punch a nurse or throw up all over the place. So what must it have been like for my sister? I don't know. I do know that I would just say to her, "This is going to be awful. It is sister. Just go up there and look at Brev. Look him right in the eyes and just keep looking. Don't watch what they are doing". And she would listen, thank God, because listening isn't really her forte but she was so depleted she would just listen to her sissy. She would go to the head of the bed and she would bend over and she would look at his face and they would endure together. Tears would be streaming down her face and her arms and hands would be shaking but her voice would be there, talking to him, reassuring him. And that's the way it was for every ND placement or manipulation, for the spinal tap, for the central line...for all of it.

Not a single nurse was allowed to give him a bed bath. The nurses did not position him or change his sheets. His mother did that. Every. Single. Time. His mother took care of every single thing that she could do. He had pants and shoes that she would get him in - every day. She would wash his face. Fix his hair.

And then he had that morning where he freaked out.
And then Mrs. Williams, his beloved teacher came to visit
And we saw this:
That. That is a picture of a fading smile. A real and true Brevin smile. Brief, and a bit crooked but it was there. And that lovely woman sat by him and read to him and had a "snowball fight" with him and he smiled and he knew who she was and he remembered how he loves her. I realized that she was there because she had a job to do. Her job was to be the one that walked in and reminded him that there was life going on outside of that room, that he had something to get back to, there were friends waiting, learning to be done and fun to be had. We could not do that as his family. We were too overwhelmed by slogging through each minute.  She could do it though, and she did, and I will never, ever forget that. I know what it cost her too, to see him like that because I know that she loves him as well. And she is a mother so she knew that we were in a nightmare.

You see those smiles were just the beginning.
Once he started smiling, he kept smiling.
Smiles were all we had for days but they were really there and they were real and they were pure gold.
He started gaining ground. He had a few words come back. I think the first thing he ever said was a joke of some sort but I would have to verify that with his mother. It would not surprise me in the least. He started twitching fingers, then moving his left arm a bit.
He started being a booger and moving his legs where we did not want them. The movements were slow and jerky but he was doing it.
I will never forget the morning that DR. V came into the room and we told her something that he had done and this, tiny diminutive woman who had hedged her bets in each conversation we had with her, forgot what she was doing and jumped up and down a bit and smiled and laughed out-loud.

Those small things kept happening. So small that we would think we were imagining them. We had to verify with each other that they were indeed there. A twitch here, a skootch there. A smile. A soft, hard earned word. He would tire easily and his moods were becoming a bit unreliable, especially if he was tired.

He got to the point where he was "stable enough" to be transferred out of ICU. That happened on the first night that I left to see my own kids for a bit. Les brought them for a quick visit, we felt that Evelyn really needed to see Brev. That was a hard decision to make, I did not want to freak her out but I was expecting a very protracted recovery and I needed her to see where he was, so she could see where he was going. There are very few 7 year olds who could possibly handle something like this but I knew that she could, I knew it would be hard but I knew that it was harder on her not seeing him and knowing for sure.

I left with my kids and Les to go to Smokewood, to rest a bit and see my kids. They were in dire straights and needed me for a bit. Then the booger got transferred.

On his second night on the new room, I got a call from Melissa at 3am. Brevin was freaking out, having what we will call from now on, "a fit". That was the only way to describe it. He was freaking out, thrashing in bed, pulling at any and all of his lines, and he was screaming repeatedly for Evelyn. He was acting afraid, no, terrified. It seems the steroids had a little something extra to offer. Hallucinations.
Now we would add another med onto the list. It was a good med and worked well. By the time I walked into his room at 4am, he was sound asleep, softly snoring. Melissa was not.
That med worked well for him on the first dose he needed.
The second dose he needed? Well, a medication error happened and he was overdosed.
A new, new room it was then because he would need 24 hours of close cardiac monitoring to check for bad side effects.

And the next day there was a distinct lack of empathy from a Resident. A lapse in patient advocacy from the nursing staff. But one phone call from a certain someone had that all sussed out pretty quickly.

It was around this time when I thought to ask the Neuro Doc- Dr. C what he thought Brevin had. Was it the ADEM or the Encephalitis? It was BOTH! Only Brevin. Only Brevin could get a disease so rare that 8 in a million people get it- at the same time he got Encephalitis! If we had known he was fighting both from the start I am not sure how we would have been able to have hope and faith. Sometimes ignorance is bliss.

Then a repeat EEG and MRI was done. Have any of you ever seen a Neurologist strut? I hear it is something to behold. The EEG was "like a different kid" and the MRI not only showed a completely unaffected spine, and not only did it show no new lesions in his brain, it showed that there was "significant improvement"  in lesions seen on the first scan!!!!!!!! This was empirical, unarguable proof that we would get our boy back! This was the fist whiff of the miracle!!!!!!!!

This new, new room though, that would be the place where the Miracle would start to unfold completely.
And I missed nearly every single minute of it.
You see, my two kids had been sick and they were getting sicker. So I took them to an Urgent Care. They both had bronchitis. I could not leave them because by this time I was the only parent in town, Les had to leave Ohio for NJ so he could get back to work.
The next day I was feeling like I had been hit by a Mac Truck, so I too went to Urgent Care. I had pneumonia.
So now the Dillon's would lay about convalescing and hearing tales of Brevin's progress second and third hand. I didn't care though- he was coming back to us and that is all that mattered.
By the time I was able to get back to the hospital and see Brevin, he had been there for 12 days.
Twelve days.

When I walked into his room, there he was, sitting on the bed being....Brevin. An almost completely normal, happy, walking, talking, goofing Brevin. And I nearly passed out as relief flooded my body. You can hear that your nephew is coming back. You can get pictures of him riding a bike in PT, you can have a conversation with him on the phone but, when you have come so close to loosing him and the last thing your eyes saw was this thin shaky boy laying in bed raiding up one weak hand to wave goodbye to his Uncle Les- you just can not truly believe until you SEE something different.

I walked in and crossed the room to sit on the couch. Brev climbed out of bed, smiled and WALKED over to me for a hug. I will confess to pulling him onto my lap and squeezing him very hard as a I cried with relief and joy and absolute love for the child that I was holding. He was with us. We did not loose him. He was walking and talking and making booty jokes and fighting with Liam! He wanted to walk down for ice cream and so we did.

He was still emotionally fragile thanks to the steroids and from the effects of ADEM and Encephalitis. The only way I can describe it is this : Brevin was there and he was functioning at a high level but it was like he was drunk. His speech was slow and slurred at times, he was more klutzy than usual (hard to believe) and he had this sort of stream of consciousness talking that would go on. We knew that those things would fade and that he would be completely normal in time. 

After a nice visit and a bedside picnic for the kids...

We went home.
Three hours later we got a call that Brevin would be discharged the next DAY!!!!!
During his time in the new, new room, the question of PT and OT was bantered about. It stared out that he was going to need in-patient PT in Columbus. Then he was going to need outpatient PT there at Akron. Then He was going to be able to do outpatient PT right in Mansfield. We just could not believe what was happening. It was like watching time lapse photography. Every hour of the day brought some improvement.

The next day Brevin was discharged from the hospital. He came home and walked into his house exactly 14 days from the day he was admitted to PICU. he was almost completely back to himself in 14 days. Do you remember? We were told not to expect ANYTHING for 14 days. And  in 14 days he was home.

I do not expect anyone to fully process the miracle that this is. I was right there, I saw how bad he got, how close he was to slipping out of this world and out of our lives, and I was there to see his recovery, and I know that it will take me the rest of my life to process what has been given to us.

We stayed for another week to be with him. I could not leave him and Melissa until I was certain things were stable. I am home now, preparing for our first Christmas in Jersey and you can believe I would NOT be here if I was afraid in any way that Brevin was not healed and here for good.
Yesterday he went for his PT evaluation in Mansfield.
He was sent home.
He doesn't need it thank you very much.
You see within 24 hours of being home, he lost even that drunken quality and the extra klutziness. He was running and jumping, doing gymnastics with Ev, he was singling songs, making jokes, saying his ABC's, counting... and it goes on and on.

He has instructions to never, ever put us through that again. He has made a solemn vow. Even more than that, something beautiful was given to us from God, the same boy has been delivered unto us twice. God does not do things half way.

All of those frantic prayers have been answered.
Brevin is here.
I am fundamentally changed by what has happened to my nephew.

And so we celebrate Christmas.

And we celebrate Brevin.