Blog – The Sarah Grace Foundation for Children with Cancer – Sarah's Angel

Today, November 9, 2016, is just an ordinary day for most.  But for us it is the 14th anniversary of Sarah earning her wings.   Can that be true?  Can it be 14 years?  It seems like 100, I feel like 100, but it also seems like it was just yesterday.   That day in 2002 had dawned so beautiful for a November morning and we had such great plans to spend the day together as a family.  Family; sometimes I question that.  Our family consisted of the four (4) of us and suddenly in a flash there were only three (3).  How did that happen; how did we go from a young girl just starting middle school who was never sick at all to a nine (9) month battle to save her life.   Sarah put up a great fight, never complaining and always smiling and still finding enough spunk to pick on her brother James.   I’ve always reflected on how it took nine (9) months for Sarah to be born and within nine (9) months of her diagnosis she was taken from us.  It’s unfair that our family unit was torn apart, so many “what if’s?” and so many experiences this daddy didn’t get to see with his little girl.  I also keep telling myself there must be a reason for all of this although after all these years I still can’t come up with an answer. 

I know Sarah is with us, in a different way, but she is with us; that’s what I try to believe.  I do believe she watches over James and protects him – I have to believe that.  Past that, I don’t know what I think or what I believe.  I used to be religious, 12 years of catholic school will do that to you, but I’ve questioned it all since the day Sarah died.  I had hope, I had faith, I had courage she would pull through but she didn’t and no almighty power could ever give me any reasonable explanation as to why a beautiful young girl who never did anything to anybody was taken from us.  Sarah only asked for one (1) thing; to live, and she wasn’t allowed to do that.  People tell us, even family, that we should “move on” we should “get over it” and for them I have words that cannot be published and a deep disgust in my heart for them.   If they walked in our shoes and buried their child I could almost guarantee they would never get out of bed.  WE do; we struggle through it, some days worse than others.  With deep grief there is never a day off, never a moment to not feel the loss.  It is real, it is painful and it never goes away!

Our Foundation, The Sarah Grace Foundation For Children With Cancer supports other children like Sarah struggling to survive.    On average 46 children are diagnosed with cancer every day – and fifteen (15) may not survive.  In the United States childhood cancer is the leading cause of death by disease among children. Our Sarah is one of these statistics and that keeps me very angry. 

So we remember today in quiet solitude the beautiful memories of a young girl who lost her life at the age of 12.  Sarah refused to give up and I hope in the end Sarah knew how much we loved her.  She is our strength and guiding light as we carry the torch of her mission to support children with cancer and make their lives a bit more bearable.  James is our shining star whose courage in donating a litre of bone marrow to his sister when he was only 10 deserves to be continuously recognized.  We are blessed to have James and he has kept us going and kept us laughing all these years.   So here’s to you Sarah and all the love and good times we shared.  Continue to strengthen us, guide us and watch over us.  Your “little brother” James is a grown man now and we know you watch over him; please continue to do so. 

We live a dream that Sarah is still here with us but she is not.  We live a dream that childhood cancer doesn’t exist, but it does.  We live a dream that we can make a difference for the children currently struggling for their lives; and we hope to do so.

Sarah, we hope you are at peace; Let the dream live on!

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Memories of Sarah – 2016

Today is Sarah’s birthday – she would be 26 years old.  Sarah has been gone more years than she lived and we struggle trying to get through each day while honoring her memory.

Sarah’s memories flow through my head, a recurring video of her life.  It keeps me awake, it makes me exhausted but I am so afraid that as time goes on I will forget; will I forget her voice, will I forget her beautiful smile and big brown eyes, will I forget the beautiful memories of times we shared while she was young?  I can’t forget, I can’t take that risk and so the video must keep playing.   Then, there are the regrets; did we do all we could have done while Sarah was sick?  The experts all say yes but the dad in me wonders why he couldn’t protect his little girl.

Losing a child is a loss like no other.  As a bereaved parent we are almost always misunderstood.  Only those that walk in our shoes can understand and remember that even our “good” days are harder than you could ever imagine.  The loss of a child is a grief that lasts a lifetime, there are no “days off” to not think about it; it glaringly hits us first thing every morning and never goes away. There is no “moving on”, “getting over it” no end to the grief we feel each and every day; it will remain with us as long as we live.  “Parents of an Angel” is a club that we never asked to join but we have been sucked into it and must deal with its pain and heartache every day.   Our family puzzle is missing a piece and without it there is an empty void we will never fill.  The empty chair at the table, the emptiness at holidays all represent a hole in our hearts and time does not fill the empty space; sometimes it makes it worse.

James, our beautiful boy, has grown and gone to a new chapter in his life in a far corner of our great country.  So we miss him too but are so very proud of who he has become.  Losing his sister when he was so young helped shape him to who he is and I believe Sarah is with him every moment of every day guiding him and protecting him.  I’m sure that once in a while he may even hear her voice with a “shut up James” which was so typical of Sarah.

And so, to honor Sarah’s birthday we ask you to remember; we ask you to live your life today – for one day – as if it was your last.  Don’t take anything for granted today.  On average 46 children are diagnosed with cancer every day and many will not survive.  In Sarah’s memory today we ask everyone to pause a moment and think about how sweet life is and yet how short it can be.   Take time to hug someone you love – tell them how much they mean to you.  Especially, hug your children, do something special with them and for them today.  Do it for them, do it for you, do it for Sarah!

 

Memories of Sarah – 2015

Today is Sarah’s birthday – she would be 25 years old. Please share our post with everyone on your friends list and help us spread “Hugs For Sarah”. On average 46 children are diagnosed with cancer every day – and fifteen (15) may not survive. In the United States childhood cancer is the leading cause of death by disease among children.

In Sarah’s memory we ask everyone to pause today for a moment and think about how sweet life is and yet how short it can be. Take time to hug someone you love – tell them how much they mean to you. Especially, hug your children and hold them close. Do something special WITH them and FOR them. Do it for you, do it for them, do it for Sarah.

We remember today in quiet solitude with beautiful memories of a young girl who lost her life at the age of 12. Sarah put up a good fight and refused to give up. I hope in the end Sarah knew how much we loved her and how much everyone cared. She is now our strength and guiding light as we carry the torch of her mission to support children with cancer and make their lives a bit more bearable. We’ll finish today, of course, with Sarah’s meal of choice: McDonalds. So here’s to you Sarah and all the love and good times we shared. Continue to strengthen us, guide us and watch over us. Your “little brother” James is a grown man now and we know you watch over him; please continue to do so.

We live a dream that Sarah is still here with us but she is not. We have a dream that childhood cancer doesn’t exist, but it does. We have a dream that we can make a difference for the children currently struggling for their lives.
Sarah, we hope you are at peace; Let the dream live on!

Happy Birthday My Angel!

Today, March 31, is Sarah’s birthday.  Sarah would be 24 years old – but she is forever frozen in time as a young girl who was never allowed to grow up because of the horrific leukemia that had invaded her body.  As a parent of an angel it is still so unbelievably painful to remember the suffering that she endured and the realization that she is not here – we can never accept that she is not!  On the day Sarah was born the angels kissed her cheeks leaving the most beautiful dimples you could imagine.  Sarah was on loan to us for a short 12 years and during that time she demonstrated a love of life and heartfelt desire to make an impact on all those she came in contact with and she did just that.

We are left with the beautiful memories of a young girl that never really had a chance to live and we’ve been denied all of what you expect to see your children go through, dates, loves, schooling, graduations not to mention all the meals and holidays with an empty seat at the table.  I am angry – very angry – that we have been denied these things that should be such simple pleasures and are taken for granted so often.  My mind continually replays the videos of Sarah’s life – bike rides, camping trips, Christmas mornings etc., but I don’t want to look at pictures, I don’t want to look at her empty room, I want to look into her eyes; to speak to her, to touch her cheek.   Only my brother and sister “parents of angels” can truly understand how we feel and as bereaved parents the feeling of loss never goes away, it is always there like a bad toothache gnawing away at you.  We smile, we laugh, we say everything’s great but our hearts are broken and there is no piecing that back together.   We bury parents, grandparents, brothers, sisters but we are NOT supposed to bury our children.

The Sarah Grace Foundation is our way of keeping Sarah alive, honoring her memory and respecting and recognizing all that she went through which should not have been for nothing.  Although we have helped so many families it is never enough because it should not be necessary.  Our work to pass H.R.515  legislation to modify the current FMLA law to allow for parental leave due to the loss of a child is another way we hope to make it easier for our “parents of angels” brethren.

Remember Sarah – especially today.  Hug your children and tell them you love them, do something special with them or for them!   Hug anyone you love and tell them it’s for Sarah; life is short and life is sweet and is gone in a moment.  We will spend Sarah’s birthday by placing her “cake” on her grave as we do every year.  No parent should have to spend their childs birthday this way!

 

Memories

I can hardly fathom that eleven years ago today our lives changed forever.  When we got up on the morning of November 9, 2002 we planned on going to the movies but Sarah was too tired.  She sat up on her bed several times and said she was very tired and wanted to lay back down for a while.  Eventually it was decided that James and I would go to the movies and Marissa and Sarah would hang out.  James and I went to see “The Santa Claus” but just after the movie started my cell phone buzzed and Marissa said something was horribly wrong.  Sarah was lethargic,

weak and incoherent.  The doctor instructed us to immediately go to the emergency room.   James and I rushed out of the theatre and I carried Sarah to the car.  As we approached the LIE on our way to North Shore Manhasset the police were checking inspection and registration stickers on the entrance ramp.   I pulled over and explained the situation and at this time Sarah was not conscious.  I asked the police for an escort, or some help, and they refused and said they could not escort us to Manhasset.  As we drove away I heard one highway patrol officer say to the other “how about that, he wants an escort…”.  I will never forget those words and I will never have respect for our police department, “Nassau County’s finest…???”

As we entered the emergency room the chief oncologist and his staff were waiting for us but nothing they did, or could do, could change the situation; Sarah was fading and this time they couldn’t pull us out.  Sarah passed that afternoon, not two hours after we arrived in the ER. 

We had so much fun prepared for that day and I’ve never understood how it could have gone so horribly wrong.  I can never understand why that beautiful, young, caring heart stopped beating.  I know Sarah is at peace and her suffering ended that day but I will never understand why!  Today as we commemorate the anniversary of Sarah’s passing, her “Angel-versary” I try to remember the good times, the laughter we shared but somehow all I keep hearing is “you’re not funny daddy, I don’t know why you even try…”.  Sarah told me that many times and it still resonates in my head.  Once when I was teasing Sarah about boys and how one day someone would come along and steal her heart she replied “I’m never getting married, I’m going to say here and haunt you forever…..”    Those words now have a different meaning and how true they have become.

Sarah, we miss you terribly and all the good works we do in your name somehow can never fill the void created in our heart on that cold November day.  

Rest in peace my angel

 

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