Hell on Earth Revisited… A new Start

Before Gabby Got Sick I was a real  A$$hol@, I’m sure you can find people today that will say much hasn’t changed.  I was really good at finding peoples weak spots; I could identify need and if there wasn’t any I was an expert at “ creating need”. As a Salesperson in the financial industry this skill was a great asset. In the after work department it wasn’t as handy as you would think.  I wasn’t happy with my career, I hated what I was doing. I’m not bragging but I was very good at it.   This skill, this career helped me support my family, it helped Carolynn be a stay at home mom, working with the girls, taking care of them and managing the house.  This skill supplied us with free vacations, and lots of toys, gizmos and gadgets!  I don’t regret that life. I worked two jobs and took care of my family, they had most everything they could need or wanted. You have to remember back then I believed material things mattered.   After I lost Gabby I couldn’t do the job anymore.  I wasn’t good at the skill I crafted those last 12-14 years anymore. I did the math and realized in the five short years she was alive I worked more than I saw her, I just didn’t have it in me.  SO at the ripe old age of 40 I decided to go back to college get my masters degree in education as well as my teaching degree.  Problem solved!

 

 

So tonight I look at my career path and am happy, in about 1-½ years hopefully I’ll be an elementary school teacher, Carolynn and I will continue to grow the foundation and keep fighting for all your children.  Tonight I also looked at this blog, It started in June 2011 all the old ones are on the foundation website. As I have said before they started out hopeful, then got very dark, then back to a somewhat happier place then back down again.  Last year I wrote a blog titled “Roller coaster”.  That’s what I’m on.  This blog started as a way of telling everyone how strong and brave Gabby was.   Then it took on a life of it’s own. Right after we lost Gabby I went to the bookstore to find a book on how to survive the death of your child.  There were books on suicide, books on drug deaths, books that took on a major religious tone, books that took an anti religious tone and so many books filled with fluff.  I wanted something real.  SO I wrote… and wrote… and wrote… I never held back.  I wanted others out there going through this to know it was okay to curse, scream and yell, it was okay to be frightened, angry and devastated.  I wanted everyone to know bad thoughts were part of the course, something that isn’t in the 1,000 books you pick up on grief and it’s stages.

 

But tonight I realized something else as well, yes I’m angry (I knew that) but the blogs stopped being what I meant them to be.  I was on a downward slope of that roller coaster.  Lashing out with my arms at anyone within distance.  The blogs started to just be a bunch of wasted words on topics and things that had happened the last few years, on things that quite frankly weren’t worth talking about, things that didn’t deserve the energy it took to write about them.  So as I was out Christmas shopping tonight I decided it’s time to go back to what they should be about, Gabby, MY letters to Gabby, My stories about Gabby, Carolynn, Maddie, Katie and Xander.  These are the thinks I should be writing about, those are the things I WILL write about.  Those are the things WORTH writing about. And that’s what I’ll do.  Remember it’s a roller coaster I’m just trying to stay on the uphill climb as long as I can, Hopefully the drop on the other side won’t be as big as the last two years drops have been.

 

Since then We have formed The Get Well Gabby Foundation.  The Foundation has pledged $125,000 to AI DuPont children’s hospital, helped countless families and strive everyday to make a difference in the fight against Childhood cancer.  During this time we have gained so many more supporters who help us fight this battle.  So call this blog a starting point, but to start you all need to know where we have been.  In order to do that I wanted to share the blog I wrote September 13th 2011.  Two days after we lost Gabby, Two days after our roller coaster really took off.  I wanted to share this and encourage you all to go to the website at getwellgabby.org and read the blogs in the beginning, the ones were I listed each time all the things that made Gabby smile.  I’m finding my way back, my family is finding their way back, and while we do we will continue to fight this disease for our children and yours. The Get Well Gabby Foundation will make a difference and you are all making that possible.  I have never read the following blog; I typed in on that night, posted it and never had the courage to look back.  Tonight I have that courage… And I hope you do as well.

 

HELL ON EARTH……Published 9/13/2011

 

“2-3 months without treatment, 6-18 months with treatment” That’s what we were told.   For the first two months Gabby was put through hell.   A month in a hospital bed, followed by a month driving down to chop daily to be sedated for radiation treatment, weekly needles, daily medicines, at times we had to hold Gabby down and pour the medicine into her throat.  The third month consisted of daily therapy, and another operation, countless CT scans, emergency room visits and still Gabby couldn’t cry.

When this started we believed she could beat the odds, she would hit the 17th month and a new treatment would come out giving her more time.  Another few years and another new treatment.  We never stopped believing that would be how this all turned out.  A miracle girl cured.

Vacation

Our other two daughters went through the hell of having invisible parents for three months, being shuffled from family member to family member, taking out their anger on one another.   At the end of August we said we needed to get away.  We traveled to the great Wolf lodge.  Gabby was miserable the whole time.  When we took vacation in the beginning of Gabbys life, and she was an infant.  As she sat in her stroller and watched her sisters play and laugh it filled her with smiles and giggles.  She hadn’t yet learned that she could do the same thing.   Fast forward almost six years and gabby is sitting in a stroller again, however this time as she watches her sister’s laugh and play she knows she used to be able to do the same.  She knew what she was missing while as an infant she didn’t.  She was trapped inside a body that was shutting down. She was helpless to stop it.

 The Beach

We came home for one day before leaving for the beach.  Again at the beach gabby was miserable.  When we took her to the beach she would just close her eyes and pretend she was asleep rather than watch her sisters playing in the sand.  The only thing she wanted to do at this time was eat and sleep.   Unfortunately it was getting harder for her to eat.  At the beach we noticed Gabby was a lot more lethargic, something was wrong, we called the hospital and they said bring her in.  So her only real vacation was cut short, Carolynn and I drove Gabby to CHOP.  She had a CTscan and we were told she needed a shunt to drain the fluid in her brain.  I asked the doctor was the swelling due to tumor growth or tumor breakdown.  She looked at us and said it was breakdown.  We were overjoyed that was a good thing, even though it was just a guess on her part.  She couldn’t tell for sure but all signs of improvement led her to that deduction.

I had to drive down to the beach and pick up my other two daughters because I didn’t want to have to end their vacation as well.  However Hurricane Irene did that anyway.  Gabby stayed in the Hospital till Saturday and came home.

 Home

Gabby kept declining, she was now having trouble eating her favorite ice cream sandwiches and even DIBS after the first few days, she also lost the ability and power to drink through a straw, and she would grab the cup and place it to her mouth and pour milk in.   The milk would pour right back out.  She was so thirsty but couldn’t swallow milk or at least much milk.  Imagine being in a desert dying of thirst, you find a beautiful lake full of water however every time you tried to take a sip it would pour back out of your mouth leaving you still thirsty.  HELL on earth.

On Saturday Morning our middle child came down with a sore throat and was getting sick, we made an appt to take her in to get checked for Strep.  That morning Gabby couldn’t even swallow ice cream. Carolynn called oncology and they said bring her in.  I took Kate to one doctor, Carolynn headed to CHOP.  It turned out Kate had strep.  When Carolynn took Gabby to Chop we both thought it was a problem with her shunt, they would fix it and she would be right home.   As Carolynn sat in the ER she told me to stay home with Kate and she would let me know more later.     I received a call from Carolynn the doctors told her they were very concerned about Gabby and she should call me and have me get there fast.   I arrived there at about10:00 pm.   Gabby woke up looked at me; I hugged her, talked to her for a little bit and said I loved her.  She then drifted off to sleep.

 2:30a.m.

Carolynn screamed JOHN; I fell off the couch to the sight of about ten doctors/nurses in the room with Gabby in a seizure.   Her heart rate was over 200bpm.  They looked at us and said do we want them to just let her pass away in our arms right there or should they put a breathing tube in.  Of course we chose the tube. That morning we were told the tumor had grown, swelling was worse.  They would treat her with more steroids and other medicine to see if swelling would go down and she would wake up.  She was in a coma.

 Sunday through Friday.

The next several days we watched and waited, eventually gabby opened her eyes and looked at us.   She couldn’t talk or move and wasn’t able to show pain in any of her extremities when they did tests. Eventually she did show she felt pain in one foot and one hand.  This stay in the hospital was filled with numerous discussions and choices no parent should ever have.

She had tubes and needles going into her everywhere, it was horrible to see this delicate flower so bruised, she still had a three inch incision on the back of her head and stomach that hadn’t healed and a week later we were back in the hospital with her.  What happened to our plan?   What happened to 6-18 months?  The doctors came to us and said we had three options, perform basically two more unnecessary surgeries in our eyes to take care of the shunt infection ( it was a minor infection and wasn’t what was keeping her asleep) treating that would only help if she started to move and became alert.  The doctors told us it wasn’t what was doing this.  The second choice was just to keep her hooked up to everything,  she had been given all these medicines for close to a week and nothing changed and they didn’t feel it would.  The third was take out the tube and see if Gabby could make it.  She was showing she could take breaths on her own so we decided to take out the tube.  We talked about it two days before we officially decided.  It wasn’t the breathing that they thought she would die from it was if she would be able to handle her secretions and basically not asphyxiate on them.

 Taking out the tube Thursday 

The room was filled with doctors, they removed all her IV’s with the exception of her port, and we said we love you and goodbye.  They removed the tube and placed her in our arms and left the room.  We sat there quietly crying holding her tight listening to her breath. An hour later they came back and Gabby was still with us, still breathing, still fighting!

Each night before the tube and the night after the tube was taken out we said goodbye to our daughter.  Because each night it looked as she wouldn’t be with us when we woke, we were afraid to go to sleep, afraid to miss that last breath, afraid to miss feeling her leaving us. True Hell on Earth.

 Going home

The doctors told us she was dying we decided we wanted to take her home and let her be surrounded by us, her sisters and her puppy.  There was nothing else they could do for her that we couldn’t do at home, with equipment the hospital set up in the house.  We talked to her sisters the day before and explained that Gabby would most likely be going to heaven and gave them the choice if they wanted her at home when she went.  I was surprised but they both said yes they wanted her home right away. We also let them know they should never give up hope and keep believing that a miracle was possible. We were supposed to leave Friday at1:00pm.  Carolynn woke me Friday at 8:00am and said the doctors had told her Gabby was actively dying and if we wanted to go home we needed to leave now.  They couldn’t guarantee she would survive transport.  Only one of us could go in the ambulance the other would have to drive home alone.   Carolynn went in the ambulance, I gave Gabby a kiss, said I’m sorry and goodbye. I packed up and tried to get home.  A portion of 76 was shut down so I had to take a different way home at time exceeding 100 mph, because I knew the way things are for us, I would probally not  get to say goodbye and hug her again.

 Hell Breath by Breath

Gabby’s new bedroom was our downstairs family room, equipment was set up their Carolynn and I slept next to her, neither of us wanting to close our eyes because we were afraid again each breath would be her last.  We were by told by the nurse we should call a funeral home and at least be ready so we wouldn’t have to do it afterwards.  I can’t describe the fear, the pain we felt watching our baby take breaths, deep ones, shallow ones, stop breathing for a second here and there.  Wondering was that it?  Did I miss it?  Talking about should we have a private or public viewing, where we should have the memorial or celebration of life.  The one thing that remained constant was each night we said goodbye to our baby, and each morning we woke up after we passed out from exhaustion and she was still with us.  A friend asked me during this time was there anything we needed.  I replied: More time.   The more and more I thought about it I’m not sure I wanted that anymore, of course I didn’t want to lose by baby, however watching her, listening to her little heart beat so fast, working so hard I just wanted her to stop hurting. But every night we also clung on, believed, hoped for a miracle to happen the next day, that night, movement in the hands, eyes opening wide, anything, we never gave up that hope of a miracle. We didn’t take Gabby home to die, we took her home to be surrounded by the people who love her, away from the doctors, the ouchies, the hospital, we took her home and kept waiting for the miracle that she deserved.

 9/11/2011

The day started like the last few, Carolynn sleeping on the bed next to Gabby me on the couch we pushed next to the bed.  Her breathing was the same as it had been the night before, I had a dream the night before that she had woken up and was okay.  Unfortunately it was just a dream.  The girls went out with friends in the morning while Carolynn and I stayed to sit with Gabby.  We talked and sang to her, Katie came home, got a shower then came downstairs with us.  We put on the Disney channel. I laid on the floor as Katie lay in bed next to Gabby holding her hand, Carolynn on the other side of her.  Carolynn said her breathing was slower now and it was getting slower all day.  She went up stairs I looked at Gabby’s knees they had started to turn blue from lack of oxygen I would guess to her extremities.  All her energy was being moved to her heart to help it beat.   Carolynn came back to the room, I leaned over and whispered in Gabbys ear, I love you baby, your strong and beautiful and I’m sorry I couldn’t protect you from this.  I said I love you again, told her she won’t hurt anymore, and to wait for us and one day we would come to her.  Then I didn’t say goodbye I simply said see you later.  Right after that she took her last breath at8:18p.m.

She went quietly, no noise, her heart just couldn’t handle all the work anymore.   Carolynn held her, Katie held her, I held her, we cried.  Our baby was gone. I can’t describe the silence as Carolynn and I looked at each other and back to Gabby.

I had to call the nurse to come and make the official time of death and unhook her from all the tubes, we told her not to come till 10:00.  Maddie, Katie, Carolynn and I took turns singing her favorite songs to her, hugging her, talking about how she will always be with us. In our hearts.  We should be honored we had her for five years.  Gabby was right when she told me months ago that when she was six she wouldn’t be sick anymore.  Her birthday is October 9th she won’t be sick that day.

After the nurse officially pronounced her, you have to wait for the funeral parlor, it was important to us that she was not placed in a bag, and she wasn’t.  We told them to give us 20 more minutes.  The five of us sat downstairs each one of us holding her and singing songs to her.  When the last song was sung, I picked her up, walked her out to the van outside, and placed her on the gurney.  Kissed her as they covered her head with a sheet, kissed her again and said how sorry I was that I couldn’t protect her, how sorry I was for not being strong enough for her, and how she would never have to hurt again.  They took her; it was raining and thundering, Gabby going out with a bang.

 9/12/2011

Went to the funeral parlor to talk about the viewing, we are having a public viewing on Thursday September 15th; we figured we owed it to Gabby to honor such a special girl.  We are also planning a big celebration of life on her birthday, as a friend of mine said, it will be Epic.

Just sitting in a funeral home knowing your five year old is somewhere in the building on a table alone is enough to haunt you for the rest of your life, the fact that right after you need to go to a florist to get flowers makes it that much worse.

When we got home the girls wanted to do something fun, we took them to ride go-karts and play lazer tag and arcade games.  The whole time we had to have a smile on our faces for them, when they would run off Carolynn and I would just sit and stare blankly at the floor.  This was all wrong, there are only two, and Gabby would have loved this. It truly sunk in when we were leaving and the girls were walking in front of us.  Two of them, with an empty spot on the right of Madison where Gabby should be.  Hell on earth.  The day we took Gabby to Chop the first time we were supposed to go to Chucky cheese, she loved the place, I wish we would have taken her, we told her we would go later, in the hospital we told her we would go when we got out, she never got well enough and she never got back to chucky cheese.

Neither Carolynn nor I want to drive the minivan anymore, it was bought right before Gabby was born for her, our family of 4 was becoming five and we needed a bigger car.  We had her brothers come and take it away. It was too hard to drive and look and see an empty row.

 God and the wrath of Facebook

Earlier tonight I posted something on face book, and I’ll share it with all of you again.  I simply stated that everyone who thinks she was in a better place was wrong.  Her idea of heaven was playing with her sisters and getting hugs from her parents.  God was the person who put her through three months of hell then murdered her.  God’s plan was to take her somewhere better and leave her family in hell?   I think I said something about I’ll show you a video tape of our family Christmas from last year and the one coming up, lets see the difference.  Then I said God is a good guy sarcastically.

The post upset a lot of people, some accusing me of asking for prayers the last three months and now spitting in gabby supporters faces, to others basically just calling me bad names.  I deleted it, it is Gabby’s page and I didn’t want that Hate on there.

Looking back at what I said I only regret one thing, actually one sentence.  When I told everyone they were wrong.  It was a statement.  I shouldn’t have done that. I am open to all discussion and respect everyone’s view, that statement was close minded.  I shouldn’t impose my beliefs on others and accuse them of being wrong.  Everyone has the right to believe what they want. I mean Hell I’ve been shouting believe for three months. So I do apologize to those that I said were wrong. You are entitled to your opinion.  So take that sentence out. However I still believe and stand behind everything else I said, if you choose to judge me, go for it.  I promise I won’t judge you and be as close minded as some people when it comes to faith and religion.  I welcome all your thoughts and prayers, my whole family does.

Gabby touched so many people and my family and I appreciate all the support of the community, volunteers, face book followers and anyone else I am missing, I would never want to do anything to make any of you feel we didn’t appreciate it. We love you all. Just remember be open minded, when it comes to religion ,take a breath and compare it to soda.  Some people drink Pepsi, I just choose Coca-Cola…  My miracle was having five years with her, she was the true angel. But she isn’t in a better place in my opinion, a better place is sitting on the couch with her sisters and me playing Mario kart on the wii.

 Next

Now what?  I have no idea, so many things we regret, so many horrible things we remember.  Gabby last said I love you to me June 2nd at 7:00pm.  I have it recorded on my phone, I’ve played it a hundred times since this started, I’m addicted to hearing my baby say it for the last time, how many people can honestly say they know the exact time someone said I love you. It’s a date burned into my mind.

Am I angry, of course I feel what happened to Gabby is no different that someone waking up walking outside and randomly killing someone, murder is murder. Again my belief, not trying to impose it on anyone else. She was cheated, murderers and rapists walk the streets yet she was taken, not just one person died that day we all did.  Gabby didn’t want to be part of a plan, she wanted to play guitar hero with her sisters and fight me for the cake batter bowl.

She loved monster high dolls, last year she was Frankie Stein and I was Frankenstein, this year she was going to be Claudine wolf and I was going to be the wolf man Last year our older girls ran ahead and even in the cold and the rain, Gabby and I went to ever house in our neighborhood, her sisters quit ½ hour before us, that’s the type of determination she had.  I can’t even bear to think about Halloween now.

We where going to Disney to stay at the Polynesian and go to Disney and Universal through the make a wish foundation.  That can’t happen now, it was her wish.  My girls asked me are we still going.  I can’t bear to tell them probably not.  We have a stacks and stacks of bills to pay, Life is still going on, and mortgages have to be paid. Actually we can’t even open the bills yet, we keep saying tomorrow.  How do I explain we now can’t go to Disney and stay on the beach where they will do Luaus?  We told make a wish we wanted that hotel, because if Gabby was to sick to go to the park she could still see the fireworks over the water.

Going back to work is terrifying to me, but it has to happen, as I write this Carolynn just came running in crying clutching Gabby’s blanket, screaming I want my Baby back.  What do you say to that?  What would the religious tell a grieving mother holding the blanket that gabby wouldn’t let go of for five years. As she screams I want my baby back?

Would they say: it was gods will and we have no right to her? Would they blame it on Satan, would they tell us She was placed here to be an example of how one child can bring so many together?  None of those answers will bring peace to a grieving family.

I want to run away, get a job where you don’t have to worry about it when you go home, there are no sales quotas or numbers to hit, and I want to live life, enjoy life, and enjoy my family. I spent more time at work than I did with Gabby during her five years of life, I will take that thought to my grave.  So maybe running away to the beach, getting a jeep, starting over but never forgetting is the answer.  I’m not sure, all I know my house scares me; I don’t like being in it, all the happy memories only lead to sadness.

The website and the face book page will be kept up.  I will blog  and maybe the next one will be about the happy moments, Right now I just can’t think of any of them and am afraid to watch old video tapes of her.

On that note I won’t say goodbye, I’ll just say see you all later.

 Hug your kids

Love your kids

Believe in your kids

Never take them for granted, they could be gone tomorrow or five minutes from now, never forget that. Even years after this, let gabby have taught you that, work , money, status. None of that is important family is. Go hug someone right now.

Believe in them

Believe in yourself

Believe you can be a better person, parent, and friend

Believe

BELIEVE IN GABBY

3 thoughts on “Hell on Earth Revisited… A new Start

  1. John, Yesterday for the first time Claire & I heard Gabby’s story. We were both blown away and filled with overwhelming grief for you, Carolynn and the rest of your family. As a father and now a grandfather I can’t begin to imagine how difficult your world has become. I truly wish there was something I could say or do to assuage your grief. What I can promise is that we are fully committed to helping The Get Well Gabby Foundation in any manner we can. If I can ever be of any assistance to you, Carolynn or your family DO NOT HESITATE to contact me.

    Our thoughts, prayers and positive energies will always be with you, Carolynn and your family.
    Kevin & Claire Free

  2. Today I finally had enough courage to seek out Gabby’s page. I’ve had friends speaking about her since she became sick, but kept myself too busy to look. I know there are no words to describe what I’m feeling right now….but what I’m feeling is more genuine, more heart felt, and has more clarity than any thoughts/ feelings I’ve ever held. I wish you great positive energy and love that will fill your lives with power and joy. I hope some day to shake your hands and see a smile on all your faces. I am MORE human because of your journey.