Daily Skin Care Tips to Increase Your Good Looks

best Korean face wash for dry skin

Skin is a gift from the above and you have to take control of it. Don’t do what most people do and let the skin take care of itself. Your skin is not your heart or your blood traveling in skin, but it needs a little TLC to make it stay healthy for a long time. You should want to have your skin looking slick in your 40s. Increase your texture, smoothness, softness, and color palette of skin. Use face wash on your face and body shampoo on your beautiful body. Control your looks and control the way you make the world around you move. Here are some daily tips you can take to maintain the level of your skin.

Use Cleansers to Help Face Be Clean

Cleansers are a good wash product to remove all the junk on your face. Do you know how much trash is on your face? You got left over make up, soap, dust, insect, dirt, dirty water chemicals, and more. Get your hands on the best Korean face wash for dry skin or something similar soon. Face wash is not just a soap and water clean. Each one you buy is designed to take off all the substances on your face that do not belong on your natural face. If you want that natural look and want a clean face washer, go get a face cleanser product today. At first, your going to be a little skeptical but you need to remember that face cleaners remove everything off your face. Soaps do not remove the left over soap that is still on your face. Completely clean your face and take off everything that does not belong there naturally with a face cleanser.

Take Out Time to Relax

Taking time off helps your body regenerate itself and develop properly. Relaxing is just not something you do for resting. Body needs rest to help it fix the things that it couldn’t fix because you was working or doing some type of exercise. Create rest time so your body can regenerate parts of itself that needs updating. Your body works just like a computer. If it has been awhile since you did nothing, then please allow your self to do nothing. I understand you have to work on week days. But, you still have the nights to look forward to and on those nights you can take time off to not do work related things. I suggest you do not exercise too. Save exercise for weekends and make sure it is in two hour sessions.

Taking time off also reduces stress. Stress, is the thing that builds up over time when something bad happens. Relax to lower to lower your stress meter. Never let the meter get out of control. Stress might seem like something you can push off but it is not. Once you become too stress out, your body won’t function like it suppose to. You must rest to be your self and retain your mind. Take time off to rest when something happens. At least, make a schedule to rest in future.

Use Body Washes for Skin Type

Body washes are now available to treat every inch of your skin. Body washes strip away the dead skin on your skin and smooths out the roughness. Go take a bath with body washes that fits your skin type. Skin type body washes give you body higher performance. For instance, people who use the best Korean face wash for dry skin should use it if they have dry skin. If a person has oily skin or regular skin, they should not use dry Korean face wash. Each person has a different skin type. Knowing it is the difference between you getting high skin performance and low skin performance. People with sensitive skin do not have to worry about suing body washes because most body washes are accepting of sensitive skin. They do not make you have more skin problems then you already have.

Shampoo Your Baby With the Good Stuff

As you watch the baby sleep, you find yourself wondering if the hair in the future will look just as good. I been there too with my first child. All the worry I had about the child catching some type of dirty bacteria. Well, worry no more because there are shampoos out there that can help baby’s scalp. Reduce the hardness and make more beautiful locks grow. All you need to do is follow this little guide below I set up for you. Shouldn’t be long until you find the best shampoo for baby.

Make Sure There is No Sulfate in Baby Shampoo

Above all, take a look inside the shampoo and see if there is sulfate in there. When I say inside, I mean you need to read the labels. Of course, I mean read the labels on the back of shampoo container. Why? Sulfate is very bad for babies because it is not made for them. The substance is a very powerful penetration for dirty outside chemicals. If the high level of penetration touches the baby’s head, you might see a huge loss on hair. To avoid, buy a shampoo that does not have sulfate in it. It’s a little time consuming but your baby’s future is on the line.

Additionally, let gentle shampoo touch baby’s head. Babies have very sensitive skin. This skin reacts to shampoo and other soap very closely. Don’t let any dry shampoo come in contact with baby’s skin. Always, ensure the shampoo makes the baby hair feel soft. In future, the soft baby hair will multiple into very beautiful hair strands.

Find Shampoos That Do More Than Clean

Getting your the little head hair cleaned up is good, but always get the most for your buck. For instance, some shampoos can take your baby hair to another level. Increase the softness by 2. Turning that rough and uneven dry hair into a smooth machine. Also, the best shampoos for baby can turn the faded colors opening up on the edges into one full color. Use the best shampoo you can find at the market and make sure it comes with its perks.

Equally important, pick a baby shampoo product that is free from toxins. Toxins are everywhere you know. Lying deep in the water way sewer system and 3 feet from your front door. Prepare the baby for all outside disease by equipping it with additional defense wall shampoo. Make their life easier and less capable of catching a bad virus. Beware, the price of taking a baby to the hospital to get medicine has risen. Personally, I do not know the exact fee you pay for typical baby check up. But, hospital bills are rising I tell you. May want to heed the advice I say in getting the baby a good defense shampoo for hair. Could save you a lot of money you would be spending at that unforgiving hospital.

My bleeding scab

Days, weeks, sometimes months go by without a tear shed.  I’m learning how to wrap her up and keep her in a dark place inside my heart.  It doesn’t mean that a day goes by without her on my mind, I’m just learning how to live with it.  I’m trying to do things to make my life without her easier and sometimes that means not putting her in front of me.  I don’t visit her site once a week anymore.  I find it’s best for special occasions or a random drop in.  Visiting her on a set schedule just wasn’t working.  With her birthday and Mother’s Day behind me, I felt like it was going to be smooth sailing for a while. Yes, the anniversary of her death is approaching but I have a couple of weeks to figure that out.  Even Foundation events become more centered around what we are becoming as opposed to the reason why we are here or what we didn’t accomplish in time.

But then I have an event that brings it all back.  To protect myself I have learned to be a country mile away from our PR video.  I can’t hear the music, her voice or even acknowledge that someone in the other room is looking at her on the screen.  An amazing group of people came to Charlotte and through a contact that came across our story by chance – I was speaking to them about ISF.  The door opens, which means the video is over and it’s safe for my heart to walk in the room. And then close to 100 people are on their feet in a standing ovation.  I walk in stunned and realize half the room is wiping tears from their eyes.  Sweat beads form on every place on my body.  I find myself at a microphone and I’m stuttering.  I’m telling the story but I’m not telling it eloquently.  This story is so familiar and I know which parts of it are hard to get through, but suddenly it’s all hard.  I’m losing my train of thought, I’m saying “um..” every other word, I can’t make eye contact.  I’m failing and I’m not recovering.  To be honest, it’s all a blur to me and I’m revealing close personal things about my anger and sadness to a group of strangers. What just happened in this situation is that a scab was picked and I’m bleeding fast.  Once I realize this, I try to wrap things up quickly and my instinct is to run out of the room and never look back.  I won’t ever see these people again so I could probably get away with it.  But I stand there, dripping in sweat, wiping tears off my neck.  What the hell just happened?

Everyone is a little stunned I think and some come up to me, but I can tell they are scared to.  They should be because even if they say “Thank you”, it cracks my shield even more.  We decide to head out of there.

I must enjoy torture.  We immediately head over to Levine Children’s Hospital to help these people I just vomited on, conduct a carnival for the sick children.  I drive my car around and around the parking garage.  I could do this blindly because my car and my hands could do this blindly.  I enter the lobby and the smell brings me back.  It’s what i would compare to walking into an elementary school.  The smells of pencils and glue for you are the equivalent to the smells of band aids and cleaning alcohol for me.  Once my prison – this place is like an old hat for me.  Only here I have learned how to behave myself.  I can see old faces and give hugs and say hello.  Thankfully I don’t run into Dr. Kaplan because the sweat has since dried from my back.  I watch the bald children enjoy themselves and I know that what we are doing is worth it.  One boy catches my eye.  He is bald and he has new stitches on his head from a recent brain surgery.  I know that fresh scar because it’s scary.  It’s like Frankenstein.  It’s hard to hide and people stare and say stupid things.  I so badly want to stop the Mother and say, “I’ve been there”.  But I would have hated that if someone said that to me.

I try to shake off the day and shower it off.  I’m meeting this group of strangers out on the town tonight.  I’m wanting to meet them to try to redeem myself.  That person you saw is the worst person I am.  I don’t know who that was and I’m embarrassed that I showed her to you.  I put on a “going out” dress and decide to show them that I’m actually just a normal person like the rest of you that had something really shitty happen to them.  That’s all.  I’m just normal.  My girls and I are ready to dance the night away and I’m greeted by them with a round of applause.  I’m in a tight dress with eyeliner on and they are clapping for me.  Here comes the body heat.  My complete collapse earlier in the day sparked a commitment to a large donation to the Foundation.  And I’m being told this in my little bar dress.  I’m stunned beyond words and want to run but I stay and properly thank them for their generosity.  Can I get a drink please?

The rest of the night is a blur of self medication as I try to forget my own horrible story.

The next morning I wake, still in my clothes from last night.  I clean off quickly as I’m getting picked up in 15 minutes.  My wonderful development director sees me walk out to her car and her eyes are wide.  Yep.  It was that kind of night.  I give her a quick download of the sizable donation and the night ended just a couple of hours ago.  Now I must pull it together to meet with a family who lost their daughter to Neuroblastoma at the age of 2 after a fight that lasted under a year.

I’m composed, or so I think to have a business meeting.  How can our organizations work together in our daughter’s memory.  I’m drinking my coffee with a shaky hand and sunglasses on.  This amazing stranger sitting across from me proceeds to do exactly what I did just 24 hours earlier.  She reveals her daughter’s entire story as she cries in pain.  The memories, like mine, are so precise and awful.  We sit at the table and sob as we listen to the nightmare that is all to familiar.  I think to myself how lucky I was to fight for almost 5 years with Isabella.  I was always in a way preparing for her death.  But when your child is taken from you after just a couple of months, there was no time to prepare.  There was only reaction to horrible news and then like that… she’s gone.  Her scab was picked and she was bleeding at the table and I know what that is like.  There is no way to stop the bleeding – you just have to let them bleed.  I wished so badly that she and I were alone in a quiet room and not sitting outside of a coffee shop for the world to see.  When our scabs are ripped off, very rarely are we in a private place.  This happens unexpectedly and you aren’t able to stop.

I came home from my meeting and just sat in my bathroom with my head in my hands… crying.  How unfair that two seemingly normal people have to have times like this where we look like we should be committed.  Aren’t scabs supposed to heal and go away after time?  After two years, shouldn’t the scab be harder to break?  Shouldn’t we just be able to have normal lives after all we have been through?  But we never will.

I compose myself but look like shit.  I have to go to Grant’s school for his end of year party.  Just like the first day of school, it is a reminder of what she should be experiencing.  The kids are wild and happy and can barely contain myself.  We watch a video of the year the kids have had and each child’s picture is shown… sitting on Isabella’s memorial bench outside on the playground.  A beautiful child’s face, beaming their toothless grin into the camera.  But next to their face is a little plaque reading, “In Memory of Isabella Santos”.  EACH.  FREAKING.  KID.  I stand in the back of the room and shake my head.  Knife in the heart with each picture.

Calvary Graduation

Calvary Graduation

I leave early (thank god) and pick up Sophia from her last day of Calvary.  I walk through the parking lot, passed all the children in their yellow Kindergarten graduation gowns with balloons.  When it rains, it pours.  I quickly grab Sophia and give her teachers sobbing hugs.  I drop Sophia downstairs, draw the shades and crawl into bed.  Will this day please end?

I’m finally awake this morning after a well needed full night of sleep.  I get to pick up my nieces today for a full week of summer fun.  My 48 hours of misery seem to have all but left.  I had a nice dream about her as I was in and out of sleep this morning.  Maybe my reward for the pain I suffered over the past two days.  It’s like she says to me, “I’ll give you a break Mom.  You have had enough.  Go and live your life for a while…  But you know I will be back soon.”


New Year’s Resolutions or Mid-life Crisis?

It’s the time of year when most take a look back at what they accomplished, or didn’t accomplish and make a plan to make the next year better. For the Santos Family, I know that we survived last year, which I consider an accomplishment. It seems like ever since Isabella became sick, my NYR was for someone to just survive – majority of time it was for her survival. So now that we survived another year, I wonder what is ahead for me in 2015 and should I even make New Year’s Resolutions?

This year we hit the 2-year mark since her death. Enough time had passed that I felt like I need to take steps to find out who I was again. While I continued to help the Foundation grow, I decided to take on a new endeavor by going back to work for the first time in 7 years. It seemed like the right thing to do because I felt my career tugging at my all those years that I was taking care of Isabella. I found myself furious with her sickness because I had put myself through college and had a career I enjoyed. I’m not sure if I would have continued full-time work with three kids, but I felt like I wasn’t given the choice. Being her caretaker took me away from who I really was inside. I felt like I lost who I was in those years because I had to become someone that I wasn’t destined to be.   So through the last 24 months I found myself searching for who I was again, without her.

I decided to go back and find Erin again. I began looking for a job and over the summer, stumbled across a part-time opportunity to go back to do technology consulting again. I jumped at the chance to fill my free time with becoming a contributing member of society and a contributing member to our household income. I love the freedom and satisfaction that a job brings because I feel like I’m in control of my own destiny in a way. The company was a small start-up consulting firm that allowed me to have flexibility and valued the impact I wanted to continue making on the side. Perfect.

In the last 3 month of this job I have had an awakening. I was waiting for this “ah-ha” moment of feeling like I have found my footing again. Yes. Yes. This is where I was meant to be before my world came crashing down. But instead it showed me something else. All this time, I had felt like her disease was taking me away from who I really was. In fact, it made me into who I was supposed to be. Sure, my job is fulfilling because I know I’m helping businesses achieve goals, yada yada yada. But, for a brief time in my life I was that girl I was destined to be and I didn’t even see it. It feels weird to me to do a job that isn’t saving a life or making a difference. Never in my life would I ever have thought that non-profit work was where my true heart would be.

I have talked to many people about it and realized that for a brief time period when I thought I was the unluckiest person in the world, I was really one of the lucky ones because I was where I was supposed to be. Not many people have careers that fulfill their “destiny”. Most people are punching a clock and bring money into their homes to pay mortgage and go on vacations. Kind of a sad thought really. All this time I spend pushing the Foundation and Isabella away so I can find myself – and it turns out to be the home I’m was looking for.

Ok. So it’s not a job that will make me feel like I’m settling into this new life. So what is it? Maybe it’s having another baby?

I know what you are thinking…. WHAT? First of all let me assure you all that I’m not pregnant. At least I hope I’m not as I’m on my second 90 Minute DogFish Head IPA.   I’m not sure where this itch has come from. I keep telling myself that I’m getting older and my window is closing. I feel that window closing so I tell myself that if I’m ever going to do it, I need to do it now. Do I want another baby? I go back and forth all the time when I see these movies with these families who get together later in life. They are these big families with brothers and sisters and grandchildren. I thought that this was going to be my life. 3 kids, 2 of who are daughters who never leave their mothers. But now I have 2. And we all know Mother’s lose their sons to the wife’s family. (Crossing fingers that Grant stays strong!) So all I will have is Sophia. And what if she gets into an accident one day and dies? What if she decides to be single the rest of her life or doesn’t have children? Where are all those Grandchildren that I will be taking to Disney when I’m older? You see where this is going here…

But I love my life with the kids right now. They can vacation, they can make a sandwich, and Sophia is starting Kindergarten next year. Do I really want to go back to diaper, naps, weight gain, sleepless nights. Not to mention half of my friends that will bail on me for good if I get knocked up. Who wants to be around a pregnant lady? I knew I had to make this decision soon.

And then it came to me in a dream. Clear as day. I decided that I was going to have a baby. But the voice in my dream told me. This child will never feel like a part of your family. They won’t know Isabella and they will forever feel like an outsider to her legacy. There are no pictures of Isabella with them, no memories of them together. This child will one day say, “Ugh.. not another Isabella story!” and roll their eyes as well tell another memory of her. I awoke the next morning with a sense of peace. That door is closed. For many families in our situation, it is something that fills a hole in their heart. But for us, it would not do that.

Where does this leave me? I have no idea. What I do know is that 2 big questions for me in my life have been answered in the last 3 months. So I guess my NYR is to figure out what the hell to do with those answers. I want to stay in my new job because it gets me back into the land of the living. And knowing that it’s not fulfilling my life’s purpose is okay. I’m not going to have a baby. (So party the year away right?) How else do I try to find myself in 2015? Or do I need be okay with not finding myself next year? Should I throw myself into writing again? Should I just help guide my family into who they should become? Do I just make NYR like the rest of the world? Okay. That’s what I’m doing.

So here are mine.

  1. Stay in shape. Enough already with the go hard/go home. Stick with it. You are getting older – keep it decent.
  2. Donate platelets once a month. (Already have my January in!)
  3. Figure out how to be better in my job every week.
  4. Do something with this Foundation. Turn it into something global or go home.
  5. Write ;
  6. Don’t be so closed off to new people. I oddly hate meeting new people. Change that.
  7. Spend quality time with my kids.
  8. Support Stuart in whatever he wants to do. He wants to manage a Starbucks? He wants to train killer whales? He wants to grow a beard? Great. Support it. Be patient with his goals.
  9. Do something in 2015 that I will always look back on and think, THAT was fucking amazing.
  10. Be okay with just being okay. Don’t feel like you need to figure out everything. Survive.

Wish me luck. Happy 2015.

Thankful.. that’s right. I’m thankful.

The past 24 hours have been quite the soul-searching journey for me.  As we roll into the holiday season, she feels so close yet so far away from me.  As I get out our Thanksgiving decorations, I come across turkey place cards that she helped me with.  Her little handwriting on the cards that tell Mommy and Daddy where to sit.  She never really was a big Thanksgiving kid.  But let’s be honest.. what child is?  They are all more excited about the family coming in and no school.  We all force them to “try” the turkey as they fill up on mashed potatoes and pie.  They play board games with their Grandparents (because I really hate to play board games), they get books read and rocked to sleep on top of a grandpa.  I love this holiday because it’s low-key.  It also means that tomorrow I’m officially permitted to listen to Christmas music without hearing Stuart bitch at me about disrespecting the turkey.

But the theme of this day is being thankful.  When you are a parent who has lost a child, you think that at times there is very little to be thankful for.  And maybe those things become clearer to you as more time passes.  Let me start by saying as an overall theme that there is nothing I want more in this world them to have her cuddled in bed with me.  Healthy.  But I know that if she were still here, that would not be the case.  She would be curled up on the couch, full of medicine and probably with a bucket close by.  It’s hard to say out loud that I’m ever thankful she is not with us.  But I shutter at what she would be like today if she were still here.

For the majority of her life, Stuart and I were always able to honestly say that she had so many amazing things in her life that outweighed the bad.  Once that scale started to tip, it became painful obvious to us that her time was ending.  And the scale tips quickly.   They go from occasional hospital stays or transfusions to you wanting them to be admitted so that they are comfortable.  One day you wake up and one side of the scale is on the ground like a seesaw with only one person on it.  That is what happened to us.

But through her passing, the clouds have parted and the sun has started to shine a bit. I’m able to see a little more clearly on what her passing and when she passed has provided for us.  So with that, I give you my Letterman top 10 list of what I’m thankful for through her leaving us.

1. Grant and Sophia.  This morning I woke to find them snuggling in Grant’s bed under the covers together.  “This used to be me and Isabella”, Grant tells us with a smile.  The bond that gets created by the brother and sister left behind is amazing.

2. Jackson.  My brother had a son a little over a month before Isabella died.  Every new baby should be the focus of family and I’m happy her sickness didn’t cloud his attention.

3. My Mom’s marriage to my Stepdad Bob.  This was on hold forever because of cancer.  I’m happy to report my Mom is now legally, Connie Stewart and I legally have a new stepdad.

4. Stuart finding himself.  He is no longer responsible for saving her.  He can now be a husband and father to the rest of us.  It has also removed the weight on his shoulders.  He can become who he is meant to be without the need of a ridiculous paycheck and maxed out insurance.

5. My nieces.  I am finally able to get to know them and actually spend time with them. They have developed into preteens who never got the attention they deserved from most of us.  They are developing these amazing talents and personalities that are so different from anyone under my roof.  It’s been a learning experience to me on connecting with them when I don’t have much in common with them.  I’m getting better but hoping to improve every day.

6. My dad.  My dad has had a rough year.  I’m not sure I could have given him the support he needed and deserved with her still here.  We are still developing our relationship but it has taken us 35 years to say “I love you” when we hang up the phone.  That phrase is here to stay and I love it.

7. Visitors.  All family visitors can now come to my house and enjoy themselves and not feel like they need to pick up the slack with my laundry, or my unorganized Tupperware and pantry.  They can come with a book and read by the fire, they can have a glass of wine and not feel like they are talking us off ledges.

8. My friends.  I’m extremely thankful to all of my friends who are still my friends.  I am mostly thankful to the ones who still find my friendship extremely valuable to their lives even without Isabella in it.  So many friendships in my life were held together because of Isabella’s sickness.  The ones that have held without her glue are like gold to me.  The ones who only want me in their lives with a sick child are not real friends.  This has become very clear to me as time passes.

9. ISF.  I’m so thankful for everything around this.  Mainly to the people who devote their time and energy to this cause and expect nothing in return.  All the countless people who do things in her memory every day and support us at the race, blood drives, fundraising events etc..  We are really doing something amazing with ISF and it is one of the things I am most proud of in my life.

10. Last but not least… Me.  That’s right.. I’m thankful for me.  I’m thankful that my ship did not sink.  I’m thankful that I find things in my life that are worth getting out of bed for.  I’m thankful that I have stopped feeling sorry for myself and that I look at Isabella as a blessing and no longer a curse on my life.  I have found myself a bit and I’m proud that I have not allowed a death to pull out the worst parts of myself.  Taking care of myself is critical in my survival of this situation and I have made myself a priority.  I’m healthy, happy and thankful for what I still have in this life.

I could probably list 100 things I’m thankful for.. but these are the ones fresh on my mind.  I’m not happy about celebrating another Thanksgiving without her… and never will be.  But I can be thankful for a lot..  It takes time to discover it and I’m finding out more and more each day.  Thankful.. a word that I thought would be out of my life forever – but here I am saying it with a smile.


Celebrating Birthdays Without Her

Baking cupcakes with her AG doll.

Baking cupcakes with her AG doll.

She would have been 9 on March 9th.  Two weeks from today, actually.   Right now I should be sending out an Evite for the group of girls who she would call her best friends.  I should be reserving an art studio or a horse farm so she can do something she loves with the people she loves.  My husband and I should be picking out the perfect gift that we have been having trouble putting off buying her for weeks.

Instead I am trying to plan a day around celebrating her short life.  It was just two years ago that we celebrated her last birthday with us.  So many of her birthdays were spent holding our breaths, praying this would not be her last, making our own wish as she blew out the candles.  There were ones where we didn’t even feel cancer breathing on the back of our necks.  Those usually ended up biting us in the end with a call from a doctor the next day saying she was riddled with cancer.  We would tell them they must have the wrong results because just the day before she laughed and played in a swimming pool with her friends.  How are these normal child birthdays for a parent?

Her birthdays are full of mixed emotions and memories for me.  And now that she is gone, I find that I’m once again unsure of how to feel on her day.  How do you properly pay tribute to a lost child on their birthday?  Last year I thought that surrounding myself with her loved ones and doing something to honor her was the perfect answer.  We hosted a blood drive complete with balloons and birthday cake.  Give a life in honor of her life.  What a great idea, right?  But looking at a cake that was decorated with “Happy Birthday Isabella” written on it in purple icing and having to hear everyone sing as someone blew out her candles made me just sick.  I remember thinking this was the worst way for me to spend my day.  I wanted to just crawl in my bed and pull the covers over my head and mourn her in my own way.  Instead I had to give hugs and wear a smile as I sipped my spiked coffee that somehow stopped my hands from shaking.  By the end of the day I just disappeared…exhausted as I crawled into her bed to sob.

As this next year approaches I have learned to protect my heart more.  We booked a local art studio that she loved and decided to offer painting sessions for kids to raise money for Neuroblastoma research.  Bright colored paintings and purple cupcakes.  No candles.  No singing.  Perhaps not even my face at the event.  In fact, my husband and I would like for the day to pass quickly.  But she has a brother and sister who are already asking what we are going to do to celebrate her birthday.  So even in private I can’t escape it.

The only people I can try to please on this day would be the people that still trip over her shoes in our home.  My two other children will always know this day and we will try to teach them about remembering her how she would want to be remembered.  We will go to one of her favorite places to eat and pick out pretty flowers to bring to her site.  I will wrestle with the feelings in my head all day of how this all came to be.  How I felt her kick in my belly and now can only place my hand on an inscription of her name.

What I find after losing a child is that things I do in her honor are so very private to me.  I’m always amazed at the advice that is given around what we do to remember her.  Even when you work hard year round on a foundation in her name that gives back to things that were important to her such as Neuroblastoma research, the Make a Wish Foundation and the Ronald McDonald House, you still hear whispers of what people think is right or wrong.  I can never understand the thought of this after all we have been through as a family.

If it is one thing that should be done without criticism it should be how a family decides to honor a lost child; what we raise money for, how often we visit her remains, how public we want to be on special days, etc.  I can’t begin to imagine having opinions on how others grieve, but oddly our society has an opinion about everything.

These opinions make days like her birthday feel stolen from me.  While I know she may have meant a ton to so many people, I feel selfish and think her birthday is my day with her.  For just one day I try to quiet the voices in my head of what others think is right and wrong and allow myself to relive every memory of her in my own private way.  I like to think of how her birthday would be in my perfect world.  The dress she would wear, the nail color we would pick out together, and even the new doll outfits and accessories we would select for the American Girl doll she loved at the time.

When a loved one passes away, all the things that once brought you joy such as birthdays, Christmas mornings and seeing fireworks… they all leave you with a bitter taste in your mouth.  As hard as you try to smile, the heartbreak inside you boils up like a volcano.  It’s hard to learn how to manage your pain on these days because you want to show you are strong and you want to start to live life in a positive way.  I know in time they will be less painful.

So this year there will be no singing and no gifts to open.  My heart only asks for one thing.  The only gift I want is to close my eyes and have the most vivid dream of her that I can.  It’s a dream where she wears a birthday hat and a smile and blows out flickering candles as a happy and healthy little girl and runs into my arms.  The reality is there is no way to be happy celebrating a birthday without her.  Unfortunately, I have many years ahead of me to figure out how to celebrate in a way that allows her into my heart without breaking it time and time again.

My look back..

Quiet time can do wonders for motivation.  My days are not filled minute by minute with ISF, race details or meetings so I’m enjoying the quiet.  I think more and more about writing every day and have set a goal for myself to eliminate anything that is preventing me from starting the process.  The one hurdle in front of me is revisiting the past.  It’s one thing I try hard not to do every day because I need to keep one foot in front of the other.  But I knew in order to move forward, I would need to look back.

3 volumes of her

3 volumes of her

So here it is.. my three volume Caringbridge hard bound book series.  When it first arrived, I was stunned.  Did I really write 3 textbooks?  No.. I didn’t.  I wrote one textbook.  The two remaining textbooks were pictures, guestbook entries, etc..  Thank goodness.  Otherwise it felt like a Hunger Games series or something.  I kept telling myself that I needed to read it.  But, I didn’t want to read it casually here and there.  I wanted to devote the time that it needed, that meant quiet time.  No kids, no TV, no nothing.  But finding that time can be hard.  So it became the hurdle that was preventing me from my larger goal.  Until about a week ago…

Enough was enough.. I started plugging through.

The beginning was an easy read.  Keep in mind that I was a business/tech major in college.  My sister was the art major who took creative writing workshops over the summer.  (What a dork.)  The first year was more of a diary of sorts and shout-outs.  We did this today, she felt like this.. so and so came to visit.  Blah blah blah..  ZZZzzzzzz..  It was just a way of me not having to update everyone at Target when I was buying diapers.

Some of it was like watching a movie that I had seen before.  I knew the outcome before the scene even happened.  There were parts when I had to read with one eye closed because I knew what was leering just around the corner.  Come on Erin.. those headaches were causing so much pain that they were making her throw up!  I would say these things to myself.  But my character in the book was oblivious to the symptoms or the manhole she was about to fall in… otherwise known as brain tumors.

I read how Isabella was so innocent in the beginning, taking it all in stride.  None of it really bothered her.  I actually think that she enjoyed it at some points.  All the snuggles and alone time that she received.  All the gifts and visitors and attention.  What 3 year old doesn’t crave this?  We moved our entire family up to Manhattan and lived a new and exciting life for periods of time! Brain surgeries and radiation sure, but sprinkled in it were weeks upon weeks of sharing a bed with Mommy and Daddy and all the pasta she could eat.  Not so bad if you ask me.

We had quiet times that we thought were quiet.. but in fact they were not.  They were just bridges between relapses.  We would think that our lives were becoming normal but we lived in a constant state of fear every day.  Everything in our life revolved around 3 months of scans that would be like rollercoasters of emotion.  A clean scan would allow 2-3 weeks of calm but then the coaster would start to ride up the track as she complained of a headache here, a leg pain there..  all leading you up to the top of the hill when you are about to explode from anxiety, heartache, pain and nerves.  CLEAN SCANS!!  Your coaster would roll down the hill.

We jinxed ourselves so many times.  How stupid of us to release balloons at the end of her brain relapse treatment only to relapse 3 months later.  Making a big deal about saying goodbye to different treatments.. Silly for us to think that we would never see them again.  6 months later we are back on the calendar for another dose of a treatment we told her was her last.  Just a series of lies we told ourselves.. and told her.

It’s funny because people tell us all the time how amazing we were, how inspirational as parents, yada yada yada.. But after 16 months I see the clouds parting and read what you all read.  At one point I built up confidence and began leading instead of following.  We discussed treatment options instead of received them.  We took breaks when we needed them because we knew it would make her stronger even if the doctors disagreed.  At one point she received a chemo called “kitchen sink”, meaning they threw everything at her.  It just about killed her.  But sure enough, she recovered from it.  They wanted to hit her again but we said to wait.. she was going to Disney World first.  And we did.  We freaking took her to Disney World in between kitchen sink chemo.  A week prior, she couldn’t get out of bed and she wasn’t eating.  But 7 days later she is riding “It’s a Small World” and swimming at the pool.  We were maniacs!

I got smarter and began to know my daughter.  I knew how her body would recover, how her counts were going to be before they even pulled them.  I knew what meds to give her and pushed out anyone that didn’t know what they were doing.  The squeaky wheel got the grease.  I assumed my picture was hanging up somewhere in the doctor’s office like someone who wrote a bad check.  “Watch out for this no it all.. “.

Isabella was developing into a little girl beside me.  She knew that I was on her team and Mom would do anything and everything to get her out of the hospital.  But in this process she began to lose control of things and began to rebel.  It was such a hard time for me because I felt like I was fighting the fight for her every day and she was fighting me back.  It was like knives in my heart at times.  I know she was just looking for something to hold on to as well but it didn’t make the pain any easier.  At times I felt like I hated her because she didn’t get what her cancer was doing to me too – or maybe just didn’t care.

She’s clean and then she would relapse.  She’s clean again.. and then she would relapse.  This cycle continued for years.  The ups and downs of putting her through things – thinking that this would be the thing that saved her.  But then receiving the news and having to tell her as her lip quivered that she was sick yet again after all she had been through and her beautiful hair that she treasured would once again fall to the ground.

It was 5 years of giving her the most amazing gifts in the world and then taking them away again.  The cruelest life at times for all of us.  I remember her freaking out once about getting her line and having to tell her that if this line didn’t go in, she would not get the medicine she needed and she would die.  Can you imagine that?  Sure, we tell our kids to wear seatbelts because they could save their lives if they were in an accident but this is different.  Holding her arms tight to her sides and looking her right in her eyes as tears fell down my face.  YOU WILL DIE IF YOU DON’T DO THIS.  Shittiest thing I have ever had to say in my life.

I read a point in the book when my writing starts to change.  It’s not retelling a day’s events.  It becomes writing out of fear.  I think I started to know how the story was going to end.  I lost confidence in the drugs and knew that in a certain number of months or years.. all I would have left of my daughter was this book.  I began to dump my dreams and fears into it because I didn’t know what else to do.  But as the author I can read through the text.  I tried to write as if no one was reading but I knew.. Some of the things I wrote were just too PC.  People felt like I was pouring my heart out to them but I was holding back so much it’s disgusting.  I’m not sure what people would of done if I wrote all my true feelings.  That’s still hard to do at times for me out of fear.  It is the one thing I have to learn if I try to accomplish this goal of mine.  Write and not care at all.  Write all the truth.

I accomplished this goal on Caringbridge only in the last month.  I always had a small percentage in my mind that thought she could pull through.  That she would be the miracle that everyone told me was going to be.  She kept beating the odds so it was still a dream that could come true.  But in May of 2012, the cancer was up and down her spine.. Watching her body give up.  That small percentage went away.  She was ready and I was ready.  Stuart and I question ourselves all the time if we were all just got too tired in the end and all stop fighting together.  Maybe it was the science; maybe it was wrong decisions… who knows.  But in May – we cut the cord and watched her die.

I read the entire journal without crying until that Memorial Day trip.  She stopped getting out of bed; she started to have vision issues.  The cancer was all through her just eating her alive.  I wish so badly that I could go back and shake myself that last month because I knew it was happening but didn’t REALLY know.  I would watch her lay in bed and reach out to things that weren’t there, talk in conversation that didn’t make sense..  she was dying right in front of me and I’m not sure if even then I understood it.

How in God’s name I was ever able to write in the journal about what was happening to her.  Even up until she died I was still thanking people for meals or trying to get people to donate to research.  WTF?  Instead I wish I were documenting her every breath so I can watch the horrible movie over and over and see her so clearly.  I thank GOD every day for the journal I wrote on Thursday, July 5th… one of my last.  That entry is all real and I had no fear of writing that.  It was raw and honest and I sob until I am shaking when I read that.  I can see it all as if it were happening right again in front of me.  And that is what writing should be.

After I composed myself, I went to pick up Sophia at Calvary.  I got out of the car and walked up to her name plate.  I put my hands against it and pushed as hard as I could for some reason.  I don’t know what I was doing.  Trying to move the monument?  Trying to bust through her plate to her ashes?  Not sure.  All I know is that I hate that all I have left is that stupid book.  A book I will cherish forever.

Catching apples

I love October.  When it seems your entire life revolves around the month of September, the date of October 1st feels like heaven.  Sure, there are lots of loose ends to tie up from our big event, but nothing that keeps me up at night.  I am oddly finding times of pure silence or relaxation – which is great right?  Right?

When you live a life for years running at full steam, the times of quiet can give an uneasy feeling.  I am finding things to do of course.  Lots of things I WISH I could have done are getting accomplished.  I have thankfully found a new workout routine that seems to be getting me out of bed… and I’m addicted to it.  I get to volunteer at my kid’s schools and get to know who their teachers are and who they run with on the playground.  Time with friends and family are finding conversations not centered around marketing ideas, PR opportunities, race figures.  Hell, I can even devote time to my (rightfully) attention starved husband.  This is all good.  But I find myself wondering, is this all there is to me?

Over the years of caring for a child you tend to feel that who you are becomes a bit lost. Before the big “C”, I was a project manager at LendingTree.com and actually really enjoyed my job.  Sure, all jobs have something that drives you crazy, but I felt like I was learning and providing value to something that was cool and fun.  My opinion mattered on subjects outside of soccer sign-ups and birthday party themes.  I actually felt smart.  But when things in your life suddenly change and you become a mom or a “Homemaker” (worst job title in history), you start to lose pieces of yourself and feel well, let’s face it.. Dumb.

I ask myself who I am now that these life changing events are behind me.  Taking a good look at myself is hard.  It seems like everything I am is centered around someone else.  I am a mother.  I am a wife.  I am a friend.  I am a daughter.  I find myself looking at a blank piece of paper and struggling to write something down that is who I am.  I can easily blame myself for this because I have built myself up as “Isabella’s Mommy”.  A title I take very seriously.. but once again centered around someone.

Sometimes I wonder if it is because I don’t have a job?  I know, I know.. I am President of the Isabella Santos Foundation.  Which at times is a REALLY COOL JOB.  It’s a job I am very proud of, but it’s also a job that at times can be very unhealthy for me.  My therapist says that after the race is over that I need to find out who I am.  Hmmm.. that sounds like it might be fun.  But unfortunately life takes over and whatever I once spent my hours doing is now filled with other stuff that isn’t really about me either.

Is that what being a Mother is all about?  Giving up yourself for others?  Not really being anyone when you are standing alone?

All people tell me is that I should take time for myself.  Make myself the number one priority for a bit.  Once I’m above water, then and only then will I be better for others.  But life isn’t that way.  Life is about trying to shove 15 pounds of shit in a 10 pound bag.  We are trying to do everything we can during the hours we have each day and very rarely is that spent on really improving ourselves.

I feel like when I take a step back and look at what I’m doing its constantly trying to achieve some work/life balance.  Work/life balance is an urban myth if you ask me.  I find that everything in my life is an apple that is ready to fall of the tree.  The house is in shambles, try to get things in order here.  But then when you do that, your son starts having issues because he’s not getting the attention he needs.  So you try to spend quality time with him to reel him in and while you are doing that, your daughter clogs the bathroom toilet.  While you are unclogging it, your husband is calling to chat but you can’t grab the phone.  You get distracted answering emails and checking in with your mom and then it’s off to after-school activities and a rushed dinner and bath before  the kids lay down for the night.  Your husband comes home and asks why you didn’t call him back and just wants to know about your day.  When really your day was just a series of catching apples before they fell to the ground.  He then wants your attention as you clean up the house for the third time today and then you fall asleep at 9:30.   Alarm jolts you up for the bus at 6:15 am.  Does this sound like anyone else’s day?

Now I’m not saying I’m constantly on the run for others.  Did I get to have a glass of wine last night with a girlfriend?  Yes.  Did I watch an episode of Orange is the New Black?  Yes.  Will I get a pedicure this week?  Damn right.  Not sure if that is making me who I am.. maybe just giving me nice looking toes.

I keep telling myself that maybe it’s time for me to go back to work.  Maybe I need something that forces me to stop doing all this nonsense or apple catching throughout the day.  Ideally, I would love to write and actually get paid for it.  But that too seems like an urban myth.  It seems that it is all a game of who you know.. who has time for that?  I know, write the book right?  Does anyone realize what a daunting task that is?  The fear of failing on the book is preventing me from starting.  How silly.  My fear is that in the quest to find myself I will go out and get some part-time job at Tory Burch or something… someone stop me.

So in closing.. how does one find themselves?  How do they bring meaning to their life when it seems so empty and lost?  How do you figure out how to write characteristics of yourself on a piece of paper without them being centered on others?  Seems like all my questions are revolving around urban myths, the fear of failing and Tory Burch.  And that’s never a good thing.

Awareness.. what a bullshit word.

 1.knowledge or perception of a situation or fact.
  1. “we need to raise public awareness of the issue”
    synonyms: consciousness, recognition, realization;

With tomorrow being the start of Childhood Cancer Awareness month, I sit here on the eve of September 1st eating my dinner with my family.  I am chatting with my husband Stuart about how I should write something for the month of awareness.  Then I say, “Awareness.  What a bullshit word.  That word is the problem.”  And just like that, my   blog post comes to you today.

I’m sure the word awareness comes from back in the day when no one spoke of cancer. The “C” word as it was called.  People died quietly.  Very rarely was a child with cancer was even seen.  Probably because there were no real treatments for them so they died so quickly.  Even 20 years ago they were barely saving one child who was diagnosed with neuroblastoma, so I was told at our initial MSKCC consultation.  Hell, we were told that Isabella wouldn’t have survived her brain relapse if it would have been just three years earlier.  So there you would have had it.  Isabella, dead 9 months after her initial diagnosis.  There wouldn’t even been enough time for me to get her story out to you.  So awareness month was a good thing back then.. hey, meet this little 3-year-old with cancer.. Nope wait.. She’s already gone.

But now times are changing.  These kids are fighting harder and longer.  Their stories are getting out there because the chemo drugs are not curing kids, they are extending their lives.  People ARE aware of them.  The awareness of pediatric cancer is out there.  But now we are getting stalled because the movement is not moving.

Here is what a typical pediatric cancer looks like this month.  You “like” a couple of Facebook posts about childhood cancer or maybe even “share” one.  You think about signing up for a childhood cancer 5k but your life is busy so you don’t get around to it.  You take your kids to soccer practice and do homework and have drinks with girlfriends and go to work and church and read People magazine to catch up on your favorite celebrities and how short Lindsey Lohan’s shorts were in NYC the other day.. Oh no she didn’t you say.  And then you are running errands in late September and start noticing the city turning pink and think, “I need to schedule that mammogram.”.

Then it is October 1st.

Did you know that the 2012 cost of government elections was more than 6.2 billion dollars.  Did you know that in 2012 the cost to RE-ELECT the SAME president was estimated to be 2.6 billion dollars.  That is something you should be aware of.  Because in 2012, we spent less that 10% of that 2 billion dollars funding childhood cancer research or less that 5% of the 6 billion dollars cost of 2012 government elections.  And just 4% of the total cancer funding goes to pediatric cancer.  Also scary to think about, 60% of all funding for drug development for adult cancers comes from pharmaceutical companies.  What is the percentage of funding for drug development from pharmaceutical companies for childhood cancer research?  Almost zero.  Why?  Because children’s cancer drugs aren’t profitable.  Ouch.

There is some awareness for ya!

So back to my issue with this awareness word.  The movement I want to start is this.. Let’s maybe change what your September looks like.  Print off a picture of my daughter.  Tape it to the back of your doors in your house.  That’s right, the front door and the back door.  Every time you walk out the door, take a look at her.  She died in my bed on a Thursday morning around 9:30 while her little brother was at camp at the YMCA.  She was 7 years old.  She died about 80 years early.  She also died because she ran out of treatment options.  She died because her cancer has very little funding and her drugs aren’t profitable.

Look at her picture when you walk out the door for your awareness.  “Awareness”.  Check.  But then when you get in your car to take the kids to school, go to work, go to the gym..  think about something you can do that is ACTION.  Forget awareness.   September is childhood cancer “ACTION” month.  Do something that day that is action to save a child’s life.  Sign up for race, make a donation, research what is really going on, ask your friends to help, talk about it, have a lemonade stand, write your congressmen, help a family who has a child with cancer.  Can’t think of something to do for 30 days?  Email me, I’ll help you with your list.

Cancer is an epidemic in this country and I’m confused as to why people aren’t freaking out more than they are.  Probably because they don’t have it.. yet.  Or maybe because we are all so “Aware” of cancer but aren’t taking action against it.  Maybe we are all waiting for the future of cancer.  They show it in the new Matt Damon movie as a scan on your body that just “SNAP”, get’s rid of it.  Truth is, that is not even a remote possibility in your life time.

Every day I’m aware.  I’m aware that she’s no longer with me.  I’m aware that my 3 year old daughter, Sophia is inside coloring a picture for her right now.  I’m aware that Isabella should be in the third grade this year.  I’m aware that my husband lives in fear that he will never be able to love his children as much as he loved her.  I’m aware that  my 6 year old, Grant has nightmares about her.  I’m aware that every day for the rest of my life I’m going to feel like there is something missing.  I’m aware of a lot.  So the word awareness works really well for me in my life.  Describe my life in one word actually and it’s probably awareness.

So let’s not make this month about just liking a Facebook e-card about cancer or reading  a family’s caringbridge entry and then walking away.  Let’s all admit that awareness is just a legacy bullshit word and lets all commit to making this month about action.  Action saves lives, awareness does not.Here is your awareness picture

Here is your awareness picture

August.. the smell of relapse

With Sophia heading off to the first day of preschool I find myself feeling so anxious these days.  Of course the race is 30 days away and it’s on my mind but there seems to be a familiar pit in my stomach that I can’t shake.  This past week or two I have had ups and downs of sickness, extreme fatigue, loss of energy and overall a horrible cloud of moodiness that has parked over the top of me.  Why is my body breaking down so much?  Then today it hit me as Grant and I were walking Sophia into school.  While everyone else is feeling the rush or back to school and the smell of freshly sharpened pencils, all I know is the smell of relapse.

It seemed like clockwork for us that every August we would be due for scans.  We would swear to ourselves (aka lie) that this year was going to be different.  She wouldn’t miss school, we would be on top of things in her classroom, we would be a normal family.

Another first day, another relapse.  (Neck)



And then a call would come that would tell us that her tests came back positive or the lump on the side of her neck was not in fact a swollen lymph node but in fact a tumor.

First days of schools were missed, supplies not purchased, teachers not met.. instead we would be having sit down conversations about our next fork in the road.  How do we keep her alive?  We would spend the next month traveling about and spending nights in the hospital while everyone else got to know the school routine and meet new friends.

So now here I am.. it’s August and there is no relapsing.  School supplies?  Check.  First day of school?  Check.  Meeting teachers?  Check.  Then why can’t I shake that relapse pit in my stomach?

I decide in honor of the first day of school, Grant and I will head over to visit Isabella.  I have gotten away from my weekly visits over the summer due to crazy schedules and the kids.  I was ready to come back to her because she always grounded me.  Maybe a visit with her with cure the pit.

I assumed Grant would stay in the car and watch Kung Fu Panda 2 so that I could have a minute to catch up with her.  The predictable kid I thought he was jumps right out of the car and grabs my hand to visit.  We sit down together on the bench as I inventory the gifts laid before her.  I can always tell Miss Chrissy’s gifts and a new pin wheel from her BFF Soleil.  Soleil was her best friend that she met on her first day of preschool at Calvary.  She is no doubt getting ready for 3rd grade this year which seems crazy to me.    My eyes fill with tears as I try to just look straight ahead.  I then of course feel Grant’s hand on my back like a shock through my body.  Sometimes in life things happen and I feel like it is Isabella.  This was one of those times.  A tiny hand on my back telling me that everything was okay.  I turn to smile at him and see his eyes are filled with tears too.

“Feels just like she was here yesterday doesn’t it buddy?”


I know he has been thinking of her lately because he has started to play his little recording he has of her wishing him good night.  Twice this week he called Sophia, Isabella too which means she is on his brain.

Then comes all the questions.

“How do they put on these bodies in here?”
“How did they put her in there?”
“Who put her in there?”
“I think I can see here in there”, as he looks through the holes.

At what point to you share with a 6-year-old the process of cremation?  I decide to tread lightly here and tell him that Daddy and I decided to make her body into ashes through magic and put in a pretty box instead of putting her into a casket in the ground.  We did this so that she could be above ground and listen to the birds easier and hear Sophia play on the playground behind us.

The only thing he heard was ashes.  Which I then had to describe further as something that looks like dust.  Which made it seem worse.

“So can we open the box and look at her?”
“No buddy.  It would just be ashes.  You wouldn’t be able to see her.”
“How do they make her ashes?” – MY DREADED QUESTION
“Well, they do something special to your body that turns it into ashes.  But her body was not really her anymore honey.  She already went up to heaven.”
“So she really doesn’t know that you did that to her.”
“Right.”  (ugh…)
“Well don’t do that to me.  I want to be in the ground.”
“Ok.  You can go in the ground.  I just thought she would like to be up here so she can hear her wind chime and feel the breeze.  And one day when I die, I can go next to her box so we can be together down here and together in heaven.”

At this point tears are falling from his eyes and I can’t figure out if I should have locked him in the car or if this is just how people talk to their kids about this stuff.

Long pause.

“Well, maybe put me in a box too so I can be next to you.”
“Sounds good to me.  Who wants to be in the ground with bugs anyway?”
“Mom.  That things is shut so no bugs can get in.”
“How do you know?”
“How do YOU know?”, he tell me.
“Fair enough.  None of this really matters to Isabella anyway because she is happy up in heaven.”
“She is always happy?”
“Yep.  And she can be anything she wants to be.  She can have long red hair, or be a Mommy or play with kittens all day.  Just happy all the time.”
“When I go to heaven I want to have green hair and drive a car.”
“Sounds good to me.  I just want to be with you guys all the time when I’m there.”

We sit there in silence for a bit and he tells me that he wants to bring something out for Isabella.  Something that she can hear because she is above ground.  He tells me that she always liked the jewelry box next to her bed that when it opened had a dancing ballerina in it.  He wants to bring that our for her.

“And a picture of her and I together.”  He tells me with tears.  “I think I will come out here as I get older too, Mommy”.
“I think she would like that.” I tell him.

I wish I could say that the visit eased the pit in my stomach.  Or unfortunately maybe now it has given Grant a pit in his.  I think that sometimes these visits to her solve problems or maybe they just answer questions.  Maybe it was just something Grant needed to reconnect with her.  I just like feeling her hand on my back every once in a while.  Telling me that it’s okay.. there is no longer the smell of relapse in the air.

Ib and Grant
Ib and Grant