Things we hate to do, but still need to be done

Things we hate to do, but still need to be done

I get it.  It’s not a fun thing to do.  You may drive all the way to the center and get turned away.  It’s cold in there.  It may take them a couple of tries to find a good vein.  You are worried you might pass out.  It might be uncomfortable for a while.  It’s boring.  It may take a little longer than you want it to.  I know all these things that go through your head, because they go through mine too.

You would think after our family’s experience, I would be giving blood every chance I could.  But, like you all – I get busy or some of these excuses start ringing in my head.  I have to be honest though, I do try as much as I can to give blood if I have the chance at a blood drive.  Giving blood doesn’t take long at all and other than having to control my alcohol or exercise that day – it doesn’t impact my life too much.  It’s like voting for me.  I feel good doing it and feel proud walking around with my elbow wrapped up in horrible blue tape for a couple of hours.  It’s like a battle scar that somehow says, “I care”.

Platelets.   For some reason this process is a whole new ball game.  I don’t give them as much as I should.  I’m just lazy about it really.  I’m very particular about my platelet giving.  It is a must to have someone with me to entertain me for 90 minutes.  I find that I try to bring Maitland with me so that we can kill two birds with one stone in the chair and knock out as much work as we can.  We sometimes get our best work done in those chairs.  I also like that she keeps my mind focused.  I can’t focus on Isabella too much in those chairs or the experience may become to painful.

I have had some very memorable platelet donations.  As you know, I find it easy to torture myself without even knowing it.  The first anniversary of her death, I decided to schedule a platelet donation during the hours she died of June 28th.  I figured that if I was going to do this in her honor, let’s really do it.  The center was full that day as we were really pushing for 100 platelet donors that week, which is harder than landing on the moon apparently.  I sat in my chair and watched seas of purple come in and out.  Everyone knew that I was struggling because I sat there trying to have conversation, but knowing that tears that were falling slowly from my eyes as I talked.

I could see the hour of her death approaching and I just wanted to die.  My brother came in during that time and sat with me.  I think he gave blood instead of platelets that morning but all I really remember was him being with me.  He was there with me on the day we found out she had cancer, up until the day she died in our house.  He is a quiet brother at times but his presence is heavy.  We don’t often talk during these times about what is really going on in our head – it’s like an unspoken thing.  He knew how hard it was for me as I sat there and sobbed.  He just sat there – understanding how the things we hate to do, still need to be done.  This is not where I wanted to be on this morning and he knew it.  He knew I wanted to be in my bed, sobbing and not sitting here in this gray chair.  But once again, I was doing something, not for myself, but for her.  It was the longest donation of my life – but the most meaningful.

We left that morning together and drove to pick out an engagement ring for his girlfriend, Laura.  He let me be a part of a huge day in his life, maybe because I let him be a part of mine.  We went to lunch and had a drink and laughed.  By then my tears were dried up and I had focused on the excitement of his day.  He was starting a new chapter and I got to be there for it.  It was a good day in the end.

Each year as this date approaches, I feel myself wanting to retreat.  I have gotten a little smarter and try to no longer go during that hour of her passing.  It’s just not a smart thing for me to do anymore.  But I still go.  I go because I know how important blood and platelets were to her survival.  I go because I remember her bruising from the slightest touch and how platelets repaired her body so easily.  I go because I remember her not being able to walk into the hospital, only to find out that she was in such desperate need of a blood transfusion that I would have to carry her tired body everywhere.  She would run out of the clinic after her transfusion, as if the events of the earlier day never occurred.

I go because every time I’m there and I check in, the staff knows me and knows her.  Someone there always says a kind word to me about her legacy and I know there is no where else I should be.

I go because it’s the right thing to do.  I go for her.

Please help us honor Isabella through your platelet donation with The Community Blood Center of the Carolinas during the entire week of June 21-28…AND at ANY of their locations.  Our goal is a 100 donations.

– DATES: Wednesday, June 21st – Wednesday, June 28th
– GOAL: 100 donations
– PHONE: 1-888-59BLOOD / Can call to schedule at any center
– EMAIL: plateletdonor@cbcc.us

I didn’t want to forget…

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

Miss Chrissy and Isabella

I didn’t want to forget…

“June is a hard month.  I couldn’t imagine what it’s like for Erin and Stuart, but it is certainly a hard month for me.  I think back on all the little things that I used to run around town doing with Isabella.  Silly things really.  But things that we did over and over, at places we considered our stomping grounds that made us both happy.

Red Lobster, I won’t go back.  This was Isabella’s all time favorite restaurant.  But I can’t find it in myself to step foot in a Red Lobster.  Janie and Jack, I won’t step foot in that store.  Isabella was very finicky with what she wore and the shoes she chose.  Boy did we make a good shopping team.  But I can’t find it in myself to step foot in a Janie and Jack or look that way when in the mall.  Genghis Grill, I won’t visit that restaurant ever again.  Isabella loved the little corn on the cobs and I laugh every time that I think of those darn things.  But I can’t find it in myself to eat at Genghis Grill. And after most food stops or shopping trips, we would pick up something chocolate.  Isabella loved chocolate.  Decadent and rich… something that only an adult size man could eat.  But she would eat every single bite, drink a large glass of milk, and laugh the whole time.  She knew that milk grossed me out and loved every second of it.

I can’t visit our old stomping grounds, but I keep her close to my heart at home in different ways.  Isabella’s art is hung up in my kitchen facing the microwave.  She would cook pop corn every time she came to my house.  I thought this was the most perfect spot, another memory of something we would do together.  I don’t notice it every day… but when I do it certainly stops me and makes me smile about all the times I had with her.

I try to go to her gravesite every couple of weeks.  I want to make sure all the weeds are pulled, all the dead flowers are removed and fresh ones are put in their place.  I never want Erin or Stuart to visit and see things that would hinder them from feeling her spirt.  And others visiting other graves…. I want everyone to know how special this girl is and the mark she is making.

And in the end the one thing I remember the most… I just didn’t want to forget.  I would rub her arm and her head (I loved that bald head) over and over as we cuddled.  I had to force myself to remember what she felt like.  I didn’t want to forget.”

– Miss Chrissy, Isabella’s best friend & family friend

We can accomplish so much more if we fight cancer together.  Learn more about donating to the Isabella Santos Foundation.

Just one more minute to tell her how grateful I am…

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

Just one more minute to tell her how grateful I am…

Isabella and Daddy

I wish I could say I love Father’s Day. For me, it’s simply a tough time of year. Heck, let me put it blunt… a shitty month overall.  As fast as it comes every year, I wish it would just be over with. God how I wish I could just push this dark cloud away and enjoy this time of the year. But I can’t. So many of my last memories with Isabella took place over this holiday time period. I can recall every minute of opening her last gifts to me, both at home and at Red Lobster, the last time we ever went out – her favorite restaurant in the world and she couldn’t even enjoy it. Not to mention, the endless hours of lightly scratching her back as my arm cramped up and yes, I kept on doing it no matter how much my arm hurt. What else could I do my baby girl was dying, right there in front of me.

For the sake of Sophia, Grant, (and Erin), I’ll bury it on Father’s Day. I’ll get excited when they celebrate the day, shower me with hugs and homemade surprise gifts. Oh yeah, I’ll play the part. They all deserve it. I know they love me dearly and I know I couldn’t have moved on without their love. The kids continue to love me in such unique ways. Grant is so confident and funny. He truly cracks me up on a daily basis, and I have this deep belief that we will be best friends forever. And Sophia, oh lordy, she has been my rock. She fills up my love bucket like no other. She’s hugged and kissed me through my hardest times. Not sure I’ll ever let her move out. But obviously, someone is still missing. I’m told to focus on who’s here and be appreciative but on Fathers Day, I just wish I could have one more minute with her. To tell her how grateful I am – and always be – to be her daddy.  How much I miss her hugs, laughs, her voice and her love. She made me a better person and being her dad, and with Grant’s and Phia was my greatest gift.  She taught me how to be a dad, or maybe more truthfully, she broke me in. Our memories together are not any better than others I have or will experience as a father… they were just ‘my first firsts’. Grant gets some of the firsts now, but for me, those initial 7 years were really the wonderful learning experiences and I’m changed forever.  Those will always remain my greatest father day gifts.

I know there is part of me that has changed. I am and will be slightly broken forever, but I wouldn’t take back a minute that we spent together. Not one minute of pain if it meant I would have to give one minute of happy time together. I love you each so very very much and hope to have many, more Fatherly moments together.   Love you always, daddy.”  – Isabella, Grant and Sophia’s Daddy

We can accomplish so much more if we fight cancer together.  Learn more about donating to the Isabella Santos Foundation.

She was the love of his life…

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

She was the love of his life..

Isabella and Daddy

“Even in the end, he did all the things I couldn’t do. He chose where to take her to be cremated because I could not know where that building was located in Charlotte. He picked out the beautiful gold box she was placed in, he paid for her final resting place, he spoke with the pastor, he bathed her after she died and carried her out of our house. There are things I was not strong enough to do, but he was. He didn’t think twice about doing them because for him, it was just more ways he showed his love for her.

He hasn’t been the same since she has left us. I don’t think he has ever experienced true love like that in his life. She loved him unconditionally and he has never loved someone as much as he loved her, including me. What they had was unique and every daughter should be so lucky to have a father love her the way that he did. He would of done anything to save her and she was the love of his life.” -Isabella’s Mommy

We can accomplish so much more if we fight cancer together.  Learn more about donating to the Isabella Santos Foundation.

He never takes it for granted…

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

He never takes it for granted…

Sophia, Grant, Isabella and Daddy

“Father’s Day is tough. I try my hardest to make the day special for Stuart. I know for me, Mother’s Day is hard and can at times be painful. I hate to have him experience the same pain. I always try to ask him what he wants to do but he answers don’t consist of much other than breakfast with the family. We do cards and gifts to tell Stuart how much we appreciate him… but it never feels like enough.

Just last night as the two of us sat at dinner alone, I asked him if he wanted to write something about Father’s Day. It’s a weird post for me to write because I’m sure I could never communicate what he is thinking. But Stuart is a talker, not a writer. He could talk for an hour about what he is feeling about Father’s Day, but cranking something out on paper just doesn’t happen easily for him.

The interesting thing he said that resonated with me was how he felt like Father’s Day is all about thanking your Father for all they do. But in fact, he doesn’t want to be thanked. Just the opposite really, he wants to say Thank you to all of us for the gift of being a Father. He said how thankful he was to be a Daddy to our kids and that is what this day means to him. It’s the best thing he has done with his life.

My kids are very lucky to have someone who considers his role a true gift and he never takes it for granted. I’m confident that our kids will always be amazing people because of Stuart’s role in their lives. You can always see the love my kids have for him in their eyes. He means the world to them all.” -Isabella’s Mommy

We can accomplish so much more if we fight cancer together.  Learn more about donating to the Isabella Santos Foundation.