What they tell you.

Right after you lose a child you hear many things. It seems everyone wants to give you advice.  Some is sugar coated and some hits you right in the face with raw honesty.  I have said repeatedly I don’t read these blogs. I put them on paper, publish and move on.  However last night I found one I wrote on a website. It was the one I wrote the day after we lost Gabby. I don’t regret one thing I have ever said or written. I do regret one picture I posted on the site and to this day I still regret positing it.  We were coming back for emergency shunt surgery for Gabby; I asked her to give me thumbs up and said if she did I’d get her a McDonald’s flurry at CHOP.  The picture is devastating, she is a shell of the girl she was, sad, tired, in pain. I do wish I could go back and not have taken THAT PICTURE. Also when we got to Chop the machine was broke and I couldn’t get her that Mcflurry. A year plus later I realize it wasn’t fair to Gabby. I don’t want the world to remember her like that. I want them to remember the smiling, golden hair angel she was.   At times people are upset, at times people have decided to disassociate themselves with us. In the last week four children I know or parents of children I know have lost their child to DIPG. Some of these parents have posted things I may or may not agree with.  They have also been attacked for doing so.  Let me tell you a secret….. It’s no one’s job to judge or decide what the right thing is to do.  Everyone has opinions, you know the saying about opinions, Opinions are like A*$holes, everyone has them.  Just like on September 12^th 2011 I was riding go karts with my other daughters less than 24 hours after losing my daughter, others handle the loss in their own way. Agree or disagree, it doesn’t matter.  My family wasn’t thinking clearly during that time, no one’s possibly can. Because no matter whom you are:  parent of a healthy child, parent of a child of Cancer, parent of a terminal child….. You cannot possibly comprehend the thoughts and feelings going through our heads.  It goes deeper than that, I can’t comprehend the thoughts and feelings going through another parent’s head that just lost their child and they can’t comprehend mine.  What it comes down to is everyone’s pain is the worst pain to them and them alone.  Carolynn, Madison, Kaitlyn and I have dealt with the worst pain to us! And a parent who just lost their child has suffered the worst pain to them.  The problem with Cancer and loss is as it destroys families everyone in the families wants to talk about how much they hurt.  It almost comes down to a comical contest of I hurt worse than you.  What I’m about to say is my opinion and my opinion alone.  Aunts, Uncles, cousins, Grandparents, etc.  Although they hurt, I can’t believe they hurt as badly.  Yes the pain is there.  But what isn’t there is the image of the first time your child cried, walked, said DADA!  What isn’t there is the constant reminder of the child you spent every day of your life with. Easter is Sunday, I need to be excited for the girls and Xander. But on the top of my mind, I can here Gabby screaming about finding the most Easter eggs during the hunt.  And I’ll hear that every Easter for the rest of my life.  Only a parent is going to have that as a constant reminder every holiday for the rest of their life.

So I read that blog from September 12, 2011 less than 24 hours after we lost Gabby….

Below is that blog:

Hell on Earth

Posted on September 13, 2011 by John

“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 sister’s 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 at8:00amand 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 probably 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 9^th 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 2^nd at7:00pm.  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 were 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 too 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 god’s 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

 As I said I haven’t read anything I have written.  But I read this one with tears in my eyes.  Do you know the one thing at stuck out in all of the sad and horrible things in that blog?  The fact that the day after we went to the funeral home saw our daughter, made arrangements and went home.  I remember none of that.  But what really sticks out is that we took Maddie and Katie to an arcade and Go Kart racing on the 12^th.  I can’t believe we made it through that!

Carolynn and I are on medication (surprise!)  We understand it won’t cure anything but right now it’s needed. We also see a therapist. Maddie and Katie do as well.  The thing that gets me is how did we get through that day?  The day after such a vital part of our live was ripped away so quickly, how did we function?

I have told Carolynn the sisters have it worse.  They don’t have the benefit of anti-depressants that we do.  And this may cause some back lash but I don’t want them on medication.  Some of these anti-depressants destroy short term memory. They go to play therapy and Art Therapy. Each day since September 11^th 2011 they have woken up and go on.  They handle it in their own way.  Sometimes I want to ask:  How can you just act like this didn’t happen? How are you not missing her every minute?  Of course I don’t, when they are ready to talk they will. And we will be here ready for them.

It’s my opinion they do these things because what it comes down to is our kids are stronger, more resilient, they will always hurt, but they go on and make the best out of life.  This is no difference whether they are healthy children or ones fighting illness.  Children are the true warriors, the true brave knights and princesses of the modern world.

I get the sniffles and I expect to be taken care of.  I’m a 39 year old baby.  I could never have been as strong as Gabby, or her sisters.  They had no choice; they faced it and kept moving.

My biggest struggle has been that every day I wake up and a piece of me is gone. (No different from my daughters or wife) and everyday for the rest of my life that piece will be gone.  I used to say the girls whenever I referred to them.  But there were three girls, now I say Maddie and Katie. Because the girls were always three. When I went to the store I would always get three of everything, now it’s a constant reminder I’ll only get two. This is another pain other members of our family don’t experience or probably even think about when they are shopping for their own children.   Crying every time you walk down a toy aisle, every time a little girl walks by that looks five. I broke down in my therapists’ waiting room the other day because there was a little blonde hair girl doing her homework. Something Gabby won’t get the chance to do.

Gabby would be 7 right now, I had a facebook page  and I decided to get rid of it.  I just couldn’t look at the little girls that Gabby went to school with turning 7, losing teeth, going to first grade. Because the truth hurts. They may have been Gabby’s best friend before May of 2011, but two years later they have moved on, and one day she will be a distant memory.  I understand it, I’m forgetting things, things I need to right down. I wish I could hear her voice, feel her hand and smell her hair as I kiss her before bed and then sing three songs to her. I can’t.  We have one pillow we have sealed in a bag. It still smelled like her right afterwards. Neither Carolynn nor I want to open it because not only are we afraid that we will lose that smell, but more importantly that the smell is probably already gone. Then we will beat ourselves up for not smelling It every day till it that smell was gone instead of wrapping it in a bag.

So in closing, people tell you the second year is worse.  It is…. I cry daily, even more now that Xander is born. I look at him, the way the girls coo over him and in my mind I can picture her smiling saying “HE’s CUTE!  I wonder sometimes if the crying is good,  I wonder when will the pain stop, the anger, the constant feeling of missing a piece of me.  I don’t believe it ever will.  But I go on. I wake up; I shower, put on a suit and talk to people about trivial problems every day. When behind my smile I’m thinking: you have no idea.  Again it’s not my job to scold those who complain that the biggest problem they have is rising taxes or a transmission going. I would trade places with any of those people and be oblivious. In the past I went through the angry at normal people phase.  I came out of it and realized how ridiculous it was.  The Get Well Gabby Foundation was formed with the intention of one day making sure that those things were the biggest problems in life, not the fact that their daughters shunt was clogged and there is danger of a seizure.

 Long and windy

So yes the last year plus has been long and windy.   We have had ups and a lot more downs. The hope is as the years go down the number of ups rise in our favor.  We recently had a beautiful Baby Boy. And we formed The Get Well Gabby Foundation a registered 501(C)3 non profit corporation.  We have raised funds needed to support a major project at a local children’s hospital (more news to come by the end of April!! ) we have supplied over a 1,800 books to 3 children’s hospitals oncology departments. And we keep going.  This year we are planning another 5K, Gabby’s Celebration which will hopefully be much bigger and better!!!. We are still trying to come up with an official signature foundation event.  We are also always looking for people who want to run foundation “chapters in different states”. If you would like to discuss the possibilities with us please visit the site and email us. Either Carolynn or I will get back to you.  Plans are in the works for possible Golf Tournaments, additional 5K’s as well as a GALA.  Also the Cure Search walk is coming to Philadelphia in June!!!  Join us as a walker on Gabby’s Believer team or you can become a virtual walker. Directions are on the website Getwellgabby.org. Please visit the site, donate, purchase a shirt, remember we are 100% not for profit!  We donate everything! so have your company sponsor an event, or give the gift of a donation for your next loved ones birthday. 

We lost our Gabby, She didn’t get well.  But the Get Well Gabby Foundation will continue with your help and donations to make sure someday, somehow we will say:  We helped them Get Well.  Be there with us when we do!

Believe that we can get the Children Well

Believe we can all be as strong and resilient as these amazing children

Believe in what Gabby Represents (hope, Love, Innocence)

Believe we can be better

Believe these kids will be remembered

Believe

John, Gabby’s Daddy

I had a whole blog written, full of Doom and Gloom, the pain and suffering us as a family deal with on a daily basis.  That voice, that fear.  The struggle of getting out of bed each morning.  However this morning I decided I wouldn’t put that blog up. Instead I would talk about my Heroes.

Heroes

I’ve said countless times how Gabby was and is my hero.  The Last time I touched her face, held her hand was 14 months and 17 days ago. The last time I felt the warmth of her body was 14 months, 17 days, 18 hours and 15 min. I remember it like it was yesterday. Where her neck bent over her shoulder. I nuzzled my face into that spot and said I love you baby.

Yes Gabby is my hero.  But there are three other amazing women who are also my heroes. Carolynn, Madison and Kaitlyn Vogel. Three strong, brave women.  Maddie and Katie saw their sisters’ life end that night and January 16^th they were in the hospital room as their brother started his.  These two little girls have seen such horrible things, and still go on, still fight to survive and regain some form of normalcy. When Xander was born a few weeks ago he was having trouble with his breathing. I took the girls down to the cafeteria and told them.  Katie casually asked: Is he going to die?  I was shocked; I asked would she have asked that had Gabby gotten sick? Her reply: No, But that was before I knew kids die. Now I do.

This is not what I wanted for my daughters.  To speak of death no differently than discussing the weather.  These two girls are in therapy; straight A students in gifted programs in school, hurt, laugh and still manage to smile. They make my life worth living. They are my Heroes

 My Unstoppable Hero

 Carolynn is my hero. Where I have always been the dreamer, a big kid, a goofball. She has been the adult, the planner the voice of reason. While I went to work she managed the house, the kids, the things that mattered. 

Recently I was made aware of a contest where people could nominate a mother as Unstoppable on the Live with Kelly and Michael Show.  The winner will receive $100,000.

 I know we live in a fast paced world. We are constantly moving and never seem to have time. But if you know my wife, Carolynn, or have been touched by our story, please consider clinking the link below and nominating her for Live with Kelly and Michael’s “Unstoppable Mom Contest.” The contest is meant to highlight “Unstoppable Moms” that go above and beyond for their kids. Four finalists will be featured on Live with Kelly and Michael, with the winner receiving a $ 100,000 prize!

If you are new to our page or don’t know Carolynn personally, let me paint a picture for you.

 Carolynn spent every single day of our Gabby’s life with her, including the last 3 months and 12 days as cancer stole her from us. Where most would wish nothing more than to crawl into a hole and disappear, she managed to move, care and make sure our other two daughters were handling life the best they could during this horrible time. She also helped and supported me while I was diagnosed with a chronic illness. She helped me to get better…to lose weight, eat better, and put up with my moodiness! And believe me I can be a real A@$hole at times.

 She helped as we formed a foundation in order to fight for and help other kids dealing with cancer. Never expecting anything in return, but for others to not to feel like we do, to not have to know the pain of one day saying “I outlived my daughter!” She helped assemble the foundation’s board, plan every single event on our calendar, and handle all the behind the scenes work that few are even aware of. She could easily have ran away and hid away from the world. Instead, as President of The Get Well Gabby Foundation, she was a vital part in the foundation reaching an agreement with A.I. DuPont / Nemours Children Hospital to donate $125,000 this past December to fund a ground breaking research software system and the Child Life Playroom opening in the new wing of the hospital next spring. She isn’t just the unstoppable mom for Kaitlyn, Madison, Gabriella and Xander. She is the unstoppable mom who is fighting for all of your children now.

 If she is picked to win this $100,000 it will all go directly to the foundation to fund our mission. She wants nothing for herself. All she wants is to make a difference and never feel like cancer won. She won’t let that happen!  She is my Hero.

 If that isn’t unstoppable I don’t know what is.

 All you need to do is email us at: Unstoppable.Mom@getwellgabby.org and we will send you a quick summary of her information that you will need in order to nominate her on the show’s website. Then simply click the link below, register with the show’s website if you haven’t already done so, and then fill out the nomination form with the information we provide. All submissions must be received by 6:00 PM ET on February 8, 2013.

http://unstoppablemoms.livekellyandmichael.com/

 The more nominations she receives, the better her chance of being selected as a finalist and being featured on a segment of Live with Kelly and Michael on ABC in March. Win or lose, just the exposure our “Unstoppable Mom” and the Get Well Gabby Foundation could receive on national TV could be just the push we need to make that next step that we are so determined to take! But to do so, we need your help!!!!

Believe in Gabby!!

 Believe in “Unstoppable Mom’s” like Carolynn!!

 Believe!!

 John (Gabby,Maddie Katie and Xanders Daddy and Carolynn’s Proud Husband)

Some key excerpts from the article:

[C]hildren with cancer could benefit sufficiently from more research into pediatric-specific treatments. While adult-oriented chemotherapy is proven to help cure cancer, it has innumerable side effects. Even though the treatments are approved for children, they are also the same used for adults, just at a lower dose.

But there is not enough funding for childhood cancer, specifically. The National Cancer Institute, a government organization, provides funding for researchers, but only 10 percent of them can move forward with their findings due to budget cuts. Most of the financial support researchers receive is from philanthropists.

In the meantime, research that could benefit children on an individual level stays in the lab, and doctors prescribe the same regimens that can be successful, but can also hurt the patient in several ways. Researchers say they are working hard to discover new theories and treatments, but they feel they are being held back.

The article continues, quoting Dr. Andy Kolb, a pediatric oncologist at A.I. DuPont:

The federal government has tried to improve community and industry investments, but their measures have fallen short, said Dr. Andy Kolb. Acts have been revised to incentivize testing for children, so that pharmaceutical companies would earn more money. However, it doesn’t incentivize positive results, Kolb said.

“Even if a drug has potential, there’s no requirement to do additional testing,” he said.

In the same time period, there were about four drugs approved for children as opposed to about 200 for adults, Kolb said. Instead of focusing on the next adult cancer drug, and testing it on children, he says, they need to find the next childhood cancer drug and test it on adult cancer.

“We’re at an age where drug discoveries and targeted therapies are exploding. Few of them have been effectively used in children,” Kolb said. “While it’s an exciting time to be a cancer researcher, the benefit has not filtered down to children with cancer.”

The Get Well Gabby Foundation will be making an announcement in the coming weeks about a research project of Dr. Kolb’s we will be helping to fund, thanks to your generous support!

And yes, if you’ve donated to The Get Well Gabby Foundation, now or in the past,  according to the Atlantic, you are officially a philanthropist. It feels good, doesn’t it?

Read the whole article: Our Disproportionate Focus on Adult Over Pediatric Cancer Research on the Atlantic.

John and I had to make a decision: Did we want to crawl into a hole or did we want to start fighting back against Childhood Cancer with the support of all of these wonderful people. Our family continued to grieve over the loss of our precious daughter and sister, but John, Madison, Katie, and I decided we needed to start fighting for a cure in Gabby’s name. We contacted a lawyer and started working on the legal aspect of creating a foundation. We reached out to friends and supporters to form our executive board.

February of 2012 was the official formation date of The Get Well Gabby Foundation in Memory of Gabriella M. Vogel. With that our fight changed and we started on our new quest to increase awareness and raise money to help others dealing with Childhood Cancer.

February 2012: A Valentine’s Dip for John

We challenged our Facebook followers to get us to 30,000 followers before Valentine’s Day. If we reached our goal, John was going to jump in the freezing Atlantic Ocean with Cancer Sucks written on his back.

We made our goal, and on a very chilly morning our family went to Bethany Beach for John to take his dip into the Atlantic. He was wearing only his bathing suit with Cancer Sucks written on his back and walked right into the Atlantic Ocean and froze his everything off!!!

It was worth it, since we follow through on our goal, all in the name of Gabby.

May 2012: Cure Search Walk

We joined in the fight against Childhood Cancer at the Cure Search Walk in Philadelphia. Cure Search is another foundation that was established to raise money and awareness for Childhood Cancer. Our team was made up of several friends, family, and faithful followers that wanted to walk in memory of Gabby. It was a beautiful day and we were recognized by Cure Search for our teams fund raising efforts.

June 2012: Reading Phillies

We sold 200 tickets to The Reading Phillies game. There was a whole section devoted to The Get Well Gabby Foundation but unfortunately it was right in the beating sun! Katie and Madison were able to throw out a first pitch and we were granted a few other opportunities while there at the game.

July 2012: Blue Rocks

We gave away over 200 tickets to the Wilmington Blue Rocks game. The tickets were divided between the Oncology departments at Children’s Hospital of Philadelphia and Nemours/AI DuPont Hospital for Children in Wilmington. We made several families and kids happy with a day out to a minor league game that they might not have been able to attend otherwise.

August 2012: Fight for the Gold Night

We attended the Fight for the Gold night at the Wilmington Blue Rocks game. This night is devoted to the children who are being treated for cancer at Nemours/AI DuPont Hospital for Children in Wilmington. We participated in the pre-game parade on the field with several other Delaware foundations and children fighting this deadly disease.

September 2012: Softball Tournament

We hosted our first annual softball tournament in Kimberton, PA. We had 10 teams play together for the day to gain the title of champion. The team Bistro on Bridge was the ultimate winner of our tournament. They are excited to come back in 2013 to try to hang onto their champion title.

In addition to the softball games, the day was filled with a bake sale, raffles, a concession stand, and activities for the kids.

We are already in the planning process for our 2013 tournament.

More September: Our Second Annual 5K

September was a busy month for us, since we also hosted our second annual 5K run in Phoenixville, PA.

Over 200 people come out that day to run or walk our 5K course around the National Christian Conference Center’s property. We had a 50-yard dash for the kids who attended.

Among the people who attended we had two very special people come specifically for our race. Jennie and Hannah came all the way from Chugiak, Alaska just to run in our 5K. This aunt and niece duo is running races in all 50 states. They choose The Get Well Gabby Foundation 5K for Pennsylvania because they were so touched by Gabby’s story and what our foundation was doing.

October 2012: Gabby’s Birthday Celebration

October 9^th we celebrated Gabby’s birthday and an awareness event for other children that are currently battling cancer or who have battled cancer. We had activities for the kids, a face painter, baked goods, a DJ, and several balloons to release.

We released Gold balloons for those kids that are fighting cancer, white balloons for the kids that we lost to cancer, and pink balloons to celebrate our beautiful girl in heaven.

More October: Piggy Paint Releases Gabby colors!!

The Get Well Gabby Foundation worked to partner with Piggy Paint nail polish to create two colors specifically for Gabriella and The Get Well Gabby Foundation. The first color is a pink shimmer called Gabriella and a gold shimmer called Believe. The two colors are packaged together with a pedicure set. Proceeds from the sale of the Pedi-“cure” sets benefit the foundation to help support our mission.

Visit the Piggy Paint Website to see the colors and order them if you have not had a chance.

November 2012: Book Drive

We finished collecting books for our book drive in November. We collected new books for the Oncology units of three local children’s’ hospitals.

With your help, the foundation delivered close to 1,800 books to Children’s Hospital of Philadelphia, Nemours/AI DuPont in Wilmington DE, and Hershey Medical Hospital in Hershey PA. The books needed to be new to ensure they were free of allergens and germs.

The book drive was such a success, we will hold book drives twice in 2013.

December 2012: Book Drive Drop Off

The Get Well Gabby Foundation provided lunch and dropped off books to each of the three hospitals. Nemours/AI DuPont allowed the members of the foundation to come onto the Oncology floor and serve lunch to their patients as well as help them choose books for the kids that were in-patient.

The Get Well Gabby Foundation provided Christmas to a family in need this holiday season. The Children’s Hospital of Philadelphia offered us a name of a family that has two children that are battling cancer. They could use some serious holiday cheer. We played Santa and sent this family many of the gifts their children wanted for Christmas.

Year End 2012:

As the year comes to an end, we were given an opportunity to help out Nemours/ AI DuPont Hospital for Children with two very important projects they are working on.

Dr. Kolb, the director of the center for cancer and blood disorders has asked The Get Well Gabby Foundation to be a part of a ground breaking research opportunity for the four hospitals in the AI DuPont system.

They also asked us to fund the child life playroom that is currently under construction as part of the new hospital expansion.

Both of these projects satisfy our mission to fund research for Childhood Cancer as well as assist in the care and well being of families being treated for cancer.

This is a great opportunity for Nemours/AI DuPont Hospital for Children as well as The Get Well Gabby Foundation. See more information regarding these two projects and our involvement at the beginning of 2013.

Looking Forward to 2013

We had quite a year in 2012, and are gearing up for everything we plan to accomplish in 2013.

Within the first few months of 2013 we will introduce our new website, release our official press release regarding the grant we are giving to Nemours/AI DuPont Hospital for Children, hold our first national fund raiser with a Pajama Day, and introduce everyone to Gabby’s new baby brother… whenever he decides to arrive.

Please continue to share the story of Get Well Gabby and our Facebook page and our websitewith your friends and family. The more people we have following our foundation, the more we will be able to accomplish in the upcoming year in the fight against Childhood Cancer!

Thank you to everyone who helped to make this a successful year. I look forward to continuing our fight against Childhood Cancer.

Carolynn (Forever Gabby’s Mommy)

If you would like to help support the foundation via Piggy Paint, visit PiggyPaint.com and use the code WeLoveGabby.

It’s been a long time since I have written, I’ve tried but each time I’m ready I run and hide.  Life is weird, the rollercoaster we are all on has curves and drops and huge inclines at times. But with every great climb there has to be a drop.

 The Foundation.

I’m happy to say we are making great progress. Not the amount we want, but progress nonetheless.  We worked with a company to develop nail polish in Gabbys name; we collected over 1,800 books to donate to CHOP, AI DuPont and Hershey Hospital.  Kids on the onco floor can’t borrow books due to their low immune system. When they take them they are theirs. My family reads together every night. I read to Carolynn’s belly when she was pregnant and to each of my daughters when they were babies.  We try not to let them watch too much TV.  Books are an escape, a way to use your imagination in anyway possible. So it was important to us to give this gift to these amazing children. Thank you to all who helped by donating books.  Please don’t stop! Keep sending them and we will continue to do so.

The foundation has been presented with an opportunity to fund a playroom for the Oncology floor at AI DuPont.  As well as fund research software that catalogs a number of things concerning fighting this beast.  If we move forward we are doing two things that make up our mission statement, funding research and funding these children. A playroom for these amazing children to be kids even though they are trapped in a hospital. And funding a research project to find a cure.

The thing that worries me is we are committing to five years to pay this off.  So I’m asking you all to consider donating to the foundation. After we lost Gabby we decided to keep fighting.  We didn’t raise the amount needed but we will commit to it, which will hold us responsible to pay it for the next fives or six years.  If anything happens we will be responsible, we will pay out of our pockets.  It’s a risk I feel worth taking.  We need a total of 125,000 and we are even a quarter of a way there. SO this Holiday season consider donating as a gift to a loved one in the name of these amazing children. We are developing a new web site, that should be up soon, visit our website at getwellgabby.org and all donation instructions are there.

 What’s in a name?

Getwellgabby was something created in a beginning because we wanted to keep people updated on Gabby.  We wanted her to Get Well.  After she earned her wings we decided to keep the name.  Get Well Gabby would help kids Get Better.  But as a foundation we have been dealing with people being confused. People asking if she got better.  It has been mentioned to us that we need to change the name.  We don’t keep a single penny raised; I work as a Private Banker for a very large bank to provide for my family. We don’t want to have a name that makes people think we are still trying to get Gabby Well.  I would like your ideas and thoughts in this process.  What do you all think?  The name is near and dear to us all, however we plan on doing this our whole lives.

 Anger

I have read so many comments about not letting anger take over, don’t let it sink its teeth into you soul.  I have heard parents with children fighting this complain about the angry parents who have lost children.  I understand what they are trying to say but don’t agree with it.  At times I’m angry.  End of story.  It’s natural to be angry, I lost a beautiful little girl.  But what these other parents don’t understand is that without anger how would we know what happiness is?  Without death how would we appreciate life?  My wife and children are amazing people, at times my anger comes out on them.  I wish I could control it. But I have bad days and good. We all do. It’s natural and healthy.  The secret is being able to move on and be happy. There are days I’m happy and days I’m not.

We lived a year away from the world. When money was tight we had to come back. Carolynn told me she couldn’t go back.  As an old fashioned man I realized even though I wasn’t ready I had to go back to work, deal with the world.  Lately most of my anger is because of this. I went back to banking, back to listening to people cry about fees because they couldn’t manage their money.  Telling me it’s their money and how can I charge a fee?  Well let me ask you something…. Can you walk into a grocery store and say I’m taking this food, I need it to live, how can you charge me for it?   Of course you can’t.  You have to pay. My job is the same.  You want a bank to guard your money but you don’t want to pay for it?  I deal with this daily.  And When I get home I’m jealous of Carolynn.  She is still hiding from the world.  Safe from the ugliness that is out there.

I have no right to be angry with her though.  I hate what has happened to us.  I feel alone; she has the house and the girls and me. She doesn’t have the world to deal with.  But she does, she is still dealing with managing the house, the girls health, the pregnancy.  And for this anger I am ashamed.  I want to be a teacher but have no idea how to start. I have a degree, not in teaching but in business. I want to teach elementary school, so if there are any teachers reading this in Delaware please email me.  I need help figuring it out.

As I said I hate what has happened to us. We are fractured. I haven’t spoken to my sister in I don’t know how long, my relationship with my mother is strained to say the least.  I see my in-laws and barely speak to them.  This is when the self-pity kicks in.  Carolynn has her mother to stick up for her.  I work and work, come home late and just want someone to say: It’s okay John.  But I don’t have that.  My family is broken, they want to talk about themselves all I want is quiet and to not feel bad about how I’ve been acting, not feel bad about being lazy when I get home. I don’t want to feel bad when I don’t call someone because it’s just too hard to pretend I care about the trivial life problems.  I know it isn’t right, but I can’t get past it.  It seems like a contest to discuss who is hurting worse. And I just don’t want to play.

 Endings

I bought a pink notebook.  I was going to use it to write all the things about Gabby.  I wanted to do this so I didn’t forget.  When I used to brush the girls hair I would pull the hair out of the brush and have a little hairball.  The first time I did this, Gabby was with me. I called the ball of hair a gooby.  The girls still remember it.  I bought this notebook to write these things down.

But I haven’t.  Each day I feel I’m forgetting Things about Gabby.  Hell I don’t even know what I remember of forgot.  I’m afraid to write them down, because that will make this all real.  I’m not in denial. I know she’s gone. But the instant I start writing down memories I feel I have given up. But I Don’t even know what I have given up.

So I labeled this section endings. What does that mean?  It goes back to the beginning.  Books…… I started writing this blog and I have constantly heard you should make it into a book.  It’s not possible.  I think people were taken back by the fact that a father, a man could open up and share his feelings.  I did it for other fathers, a way of saying, it’s okay to cry, okay to be mad, okay to have one two many drinks every so often and curse the world.

The night Gabby earned her wings a couple came over.  Parents of an amazing little boy.  A boy who in my opinion will beat this monster he is fighting. A boy who will win where Gabby Couldn’t.  His Father wrote a book. He told me about it the night we lost Gabby.  The adventures of the chemo kid!  I suggest you all check it out. And Mike I’m proud of you!  But if I would write a book it would be different. Mine would be filled with the blogs and ramblings of a distraught father that at times lashes out at those trying to help… But what it comes down to is….. My book can’t be written because it has no ending.   There is no winner, no loser, it keeps going.  So how do you write that book? It’s impossible. In a situation like this, your life stops but life keeps going, changing you, and opening your eyes to a new way of life.  The simple fact is life might have a beginning but in the end you make your mark, Gabby made her mark, And it’s my family’s job to make sure there is no ending till we win this fight.

Believe in Gabby

Believe kids can get well

Believe that anger is needed to appreciate happiness

Believe you can be better

Believe

John ( Gabby, Maddie and Katies Daddy)

When your first baby was born, you probably read every book out there on how to be the best parent and what to expect from this baby. I remember having the book What to Expect When You Are Expecting and the books that followed in that series. I would follow along with them through my pregnancy and through the life of my new baby. Madison was my first-born. She was a little difficult during the first month or so of life. She would not sleep!!! I can remember looking everywhere in this book for answers as to what I should do with her. When the book didn’t work, I turned to friends with children. I didn’t have many at the time since I was the first of some of my friends and relatives to have a child. When that didn’t work, I called my mom and asked for her advice. I don’t really remember taking any specific advice on what to do, I think John and I just did what we had to do and hoped it would work and that we weren’t going to “screw” up our baby. Madison was breastfed. She would eat every 2 hours, the problem was, she was not a very proficient eater. It would take her an hour to eat and left her an hour to sleep before wanting to eat again. John would take turns with me at night. I would feed Madison for an hour and hand her over to John. He would sleep with Madison on the couch until she woke up hungry again (another hour later) and give her back to me. Needless to say, we didn’t sleep much at all!!! I don’t know when it finally clicked, but at some point she started going longer stretches of time and we could finally sleep for more than an hour at a time. There are some things you can’t learn from a book. This was one of them.  I know there were many more times that myself or my friends had questions regarding something that happened to their baby and what should they do. There isn’t a chapter in the book that explains everything to you in detail. Some things you just have to figure out for yourself and hope you are doing the right thing.

Gabby was diagnosed with brain cancer. We started doing some research on the particular kind of cancer she was diagnosed with and consulted our Oncologist. We were told by her and some other people, stop researching this; the news you will read is only going to be more devastating. How do you help yourself or your child when you are told not to read about what she was diagnosed with? At the hospital we were assigned a social worker. He came to visit us in our room and handed me a “goody bag” for lack of any other term. In this bag was a book regarding brain tumors, a scrapbook with Happy Birthday and Congratulations stickers, a disposable camera, and a few other things that aren’t very memorable. He handed me a few meal voucher coupons and told me to let him know if I needed anything. This was our support! Really??? I told him the thing I needed the most was to be able to talk to someone that had been through this before or was going through it now. I needed to understand what we were dealing with. I needed to know what to expect at the hospital, what to expect from Gabby, how we were suppose to manage everything. I was told because of HIPA, he could not give me that information but I could talk to people in the halls on the Oncology floor. That wasn’t much help since a lot of the people there were walking around with their heads down and in a daze themselves over what they were dealing with regarding their own child. We were able to make some connections with some families, but none that had the same diagnosis or the same treatment options. We were still very much on our own. We had to decide what was best for Gabby and our family. We had to figure out how to cope with all of our emotions and feelings and scary thoughts without the help of anyone else.

When Gabby was in a coma in the hospital, it all happened so fast, there was no consulting a book or anyone else to help us figure out what to do for ourselves or for Madison and Katie. We didn’t have a parent we could ask; ours had never been through this before. We did what we thought was best and sat down with them and were very honest about what was happening and what could happen. That was the day that we told the girls there was a chance that Gabby was going to go live in heaven. The alternative was that she would wake up from this special sleep she was in.  Katie and Madison came into the room and sat on the bed begging Gabby to wake up every day until the day we decided to bring her home. Again, another time that we didn’t have any reference. We did what we wanted as a family. We talked to Madison and Katie and again explained the situation. We asked if they wanted Gabby to stay at the hospital or did they want their sister at home in their house with their things. The decision was unanimous that we were bringing Gabby home to be with all of us at our house. They knew at this point she was not going to wake up but we still didn’t give up BELIEVING a miracle could happen.

Gabby went to heaven and we were there by her side. Again, we didn’t actually believe it was really going to happen and we didn’t know what to do when it did. Obviously we had made the proper arrangements for her even through it was gut wrenching making those calls. We didn’t know how to act, how to act towards the kids, how to help the kids to understand, etc. Gabbys story was on Facebook, and we got plenty of response from people telling us what we should be saying and doing. My question is how many of them have dealt with this personally or was this just their opinion on how they think it should be handled? Over the next few months we were criticized for many of the decisions we made or the way we were acting. Again, my question, how many of these people that were criticizing us have actually had to deal with a death of a child first hand? It took several months to start reading the self-help books on how to cope with the loss and how to help our children cope with the loss. Again, these books remind me of the baby parenting books. Not all situations are covered; you still have to decide on your own what is best for your situation and how to deal with it on your own.

We moved. Several of the books suggest not moving or making any major life changes for at least a year from the loss of your loved one. This was a decision John and I had decided while Gabby was sick in the hospital. We had decided that IF anything did happen to her, we would move from our current house. We talked to the girls and Katie was on board but Madison was not really a fan of moving from her friends. We needed to get away and be on our own. We didn’t want to be the people sitting in the stands watching our daughters play a sport while the crowd was watching to see how we were reacting. We didn’t want to get hugs from strangers at the supermarket anymore. We wanted a place where we could start over and heal at the same time. A place where the girls could make new friends and not have their sister as a shadow over who they are as a person. This is what we thought was best for our family, yet all of the self help books you read tell you not to do it! There have been times since our move that I have regretted it for one reason or another. I am sure all of us feel the same way. I know John felt a strong connection to the room where Gabby went to heaven. I personally could not go in that room of our house after that day. It held bad memories for me and I didn’t want to look in the spot where her bed was. Katie and Madison miss their friends and they talk about the house and the fact that they miss it. I have thought it would have just been easier for support when I have my days or moments to have someone close to call on to help me out with the house work, the girls, etc.  I have to remind myself that when I was there, I was getting an overwhelming amount of calls and visits from people that I didn’t really want to visit with at that particular time. I wanted to have my peace and quite and only deal with people when I wanted to deal with them. Another reason I love living where I am now. No one bothers me and if they call and I don’t want to talk, I just don’t pick up the phone. Of course it’s also lonely. Many, many people that I would have considered friends have just walked right out of my life and that really hurts. I have talked to other parents that are dealing with a similar death or even a child that is diagnosed with cancer and they are having the same problems. People they considered friends have just walked out of their life. None of my books talk about why people abandon you when you are so low and dealing with something so tragic. What is it? I can’t be a good friend to them so they decide they don’t have to be my friend anymore?  I have a few people that I needed to de-friend off Facebook because they would never comment on anything that I was going through yet they were always complaining or bragging about their own life. I could not hear this. You could not be a supportive person to me at all and now I have to listen to how your child is doing in school or where you took your last vacation.  I am not able to help be supportive towards you. I don’t have enough support for myself and my family some days, I definitely don’t have enough to offer some to other people as well.

Support Groups and Therapy have not been kind to us either. The books suggest getting involved with a support group. John and I found one in our area for parents that are grieving the loss of a child. We went to one meeting and didn’t ever return. Everyone in that meeting was older than us and had children that were older in age when they passed away. The reasons for passing away were varied; some were drugs, vehicle accidents, suicide, and one with cancer. I think we both perked up when we heard this one parent say that his daughter died from cancer. I think John and I were so desperate to make a connection we were on the edge of our seat to hear their story. The father then started to complain that his daughter owed him $20,000 when she died. This is the story he told, not about how much he missed her, or what they went through with her, that she owed them money. I think it took every ounce of energy in John’s body not to jump out of his seat and punch the guy right in his face. I would pay someone an unlimited amount to get my daughter back!  We left that meeting not feeling very connected to anyone. Due to our children’s schedules, it made it difficult to go back again and we would have rather spend the night with Katie and Madison than talk to people we didn’t relate to at all. We have also reached out to therapists. Katie and Madison as currently going to an art therapist once a week and have been for a few months. I was really hoping things would get better for them once starting therapy. I have noticed a decline in Katie’s behavior since we have started it. She seems to be more aggressive verbally towards us, her parents, and Madison. She wants to control EVERYTHING!  Again, consulting the self-help books, this is not the norm. The norm is that you take your kids to therapy; they start feeling better about themselves and start acting better. They start wanting to help you more because they understand what we are all dealing with not just their own emotions. Every day becomes a fight in this house over NOTHING! It could be that I ask them to pick up after themselves or that I tell them it’s not an OK day to have a friend over. The books indicate that we are going everything “right” because we are still showing them love, we are still involved in their life, we don’t treat them like they live in their sister’s shadow. We do everything for our girls and it only seems to get worse not better.

We have a huge feat to undertake in the next few months. Not only do we have to get through another year of major holidays, but also we have to get ready for a new baby. Our house seems to be in constant disarray and we need to get a handle on it so we can welcome a new baby into our home. Again, another step in life that get’s mixed messages through the self-help books. Some agree that a new baby is just the thing a family needs to continue the healing process. A baby can make the family feel “whole” again. Not to replace the child that has gone to heaven but to bring new life into the house and new joys that aren’t there anymore. Others will say that we should be focusing on the surviving children and should not bring another child into the house until years later. Well, this mamma isn’t getting any younger and if it was going to happen, it needed to happen now or I would be too old to have another baby. We have had our up’s and down’s with this pregnancy as well. When going in for an ultrasound, there was a spot discovered on the baby’s brain. The doctor that came in to talk to us about this was again, not the brightest in dealing with this sensitive family. She brought it up in the ultrasound room in front of Katie and Madison. She read on my chart what had happened to my other daughter but didn’t know exactly what DIPG was or when it gets’s discovered in a child. She needed us to tell her if Gabby was born with this or was it something that developed. She also told us what this spot could mean. It could have been the indication for an extra 18 chromosome. An extra chromosome is fatal to a baby. It could continue to develop in utero and then die within a few days of being born, or it could die inside my belly and either be a still born or I could have a miscarriage late in my pregnancy. This they tell us in front of my children who have just witnessed their little sister go to heaven less than a year ago. Needless to say, we excused the girls from the room and continued to talk about our options to find out what exactly we needed to do regarding further testing. Again, no on here to help us figure out what to do and say to our children that just heard potentially devastating news about their unborn sibling. We opted to do additional blood tests and they came back negative, we also were scheduled for an additional ultrasound to see if the “spot” resolved itself with some growth. It did!  We are back to being cleared as having a normal, healthy baby. Again, the emotions around this are too hard to comprehend ourselves and too hard to explain to our children.

I guess to sum everything up; there are many things in life that don’t have a manual. You have to learn as you go and make good choices and learn from the bad choices you make. I would love to write a book about our experience with Gabby but who will that benefit? Will it benefit the parents that were just told their child has DIPG and they are in the same state of denial that we were in? Will it benefit the parent who loses their child to cancer and can’t come out of their grief to read about someone else’s grief and how they handled it? Will it help other families to deal with their surviving children and help them cope with the loss of a sibling? Will it help me to put all my raw feelings down on paper so you can see how I really feel about the whole situation? John has been the one that has been very vocal throughout our journey. I have been pretty quite in the background. I am not ready and willing to open up my feelings for the world to hear. I am sure much like John’s feelings, people will be opinionated, and will judge me for what I say. I don’t need that or want that. I just want everyone to know that there is no manual to help you get through this particular phase of our life. There is no book that explains what we should or should not be doing or acting. There is no parent out there in the same situation as ours that feels the same way we do. Everyone feels different and handles things differently. I wish there was a book that I could read and take the advice to make my family feel better and able to handle the world. I wish their was someone I could talk to that would make me realize that I am doing the best I can without judging me or making me second guess everything we have done in the last year plus. I wish that people that claim to be your friend would actually support you and show up when you announce that you are in town doing something to support a good cause. I wish my kids’ friends would actually show up and support them when we are in town as well. I wish this never happened to my family and my precious baby girl.

So if you know someone that is going through a rough time, say something to him or her. Even if you don’t know what to say, say something, not nothing. Call before you come over and make sure they really want your company. Don’t do it for you, do it for them. Don’t abandon your friends when they probably need you the most. If you don’t get a call from them, pick up the phone and call them. You can’t wait for a grieving person to want to call you, you need to call them. Be supportive; help them to make the best decisions even if they aren’t the “right” decisions. There isn’t a manual or a book out there that will describe every situation for you and how to handle it. Help yourself or help your friend, neighbor, family member to get through their rough time and the only thing you should want to get back is feeling good about yourself.

Believe

When Gabby was sick, books were one of the few ways she could escape her hospital room for a few minutes. Things that used to be simple for her, like watching TV, were very difficult for her in the hospital.

This year, The Get Well Gabby Foundation would like to do something for the children with cancer who can’t leave their hospital rooms this holiday season.

We are hosting a book drive to collect NEW books to distribute for children at The Children’s Hospital of Philadelphia, Nemours/AI Dupont Hospital for Children, and Penn State Hershey Children’s Hospital who are inpatient over the holidays.

The Get Well Gabby Foundation will be sponsoring a catered dinner for the patients and their families when the books are delivered.

Many of these children can not even leave their rooms during their treatment because their treatment weakens their immune system to the point where a case of the sniffles can be life-threatening. Everyone who comes to see them must wear a full gown and mask before they can get close.

Please help us brighten at least one child’s holiday by donating a new book for them.

We Need Your Help!

• You can purchase new books or gift cards for books and mail them to us at PO BOX 555, Ocean View, DE 19970.
• You can purchase books or drop them off at a participating book store that is collecting books for us. As of today these are Chester County Book and Music Co. in West Chester, PA and The Children’s Book Garden in Ocean City, MD. You can visit this page for an up-to-date list of participating stores.
• You can work with your child’s school during the upcoming Scholastic book drive. Several Phoenixville, PA area schools are already involved.
• You can help spread the word to others:
  • Send this page to your Facebook friends!
  • Run a book drive at your School, Club, or Church and send us the books!
  • Contact your favorite bookseller and ask them to become a collection point for us!
• You can send a donation to the Get Well Gabby Foundation and note that your donation is for the book drive.

However you choose to support us, we need your books by November 15th, 2012 so we can have your book in a child’s hand to brighten what could be an otherwise very lonely holiday.

Thank you for helping us help these children.

Piggy Paint

With the holidays fast approaching, don’t forget about Piggy Paint’s Pedi-“cure” sets for the special girls in your life.

You can give them a gift they will use every day: Non-toxic, Natural as Mud™ nail polish and 25% of your purchase price goes directly to support The Get Well Gabby Foundation mission.

Visit the Piggy Paint website and enter the promo code WeLoveGabby when you check out. You get 15% off your order and FREE shipping on any order over $40!

If you don’t know what color they would like get them a Gift Certificate and let them choose exactly what they want!