Thursday, July 16, 2015

Open Note to all our Cancer Slayers...Thank you

You hear your child's first cry, you feel the greatest sense of relief and then love ... the one you will never be able to explain...comes over you.  I remember it, I had the blessing of hearing and feeling it 4 times, "Irish Quads" of sorts (being born 4 in 5 years) I remember saying many times, in the last 12 years. to myself that I am so thankful that I have healthy children. 

I didn't dream that we would ever be touched by Pediatric Cancer... Sydney who is 12 has Cell B Burkett's Lymphoma...and what I didn't know is when the "C"Word comes into your life there are so many feelings.  Some very obvious... and others so completely unexpected that you don't even realize what is happening when they are happening.  

Any of you that know me can guess the first feeling I had...anyone?   "I have to be Brave!"  I have to be brave for Sydney, for Ray, for Logan, Mirada and Dillon...I have to be oh so Brave.  The next, yep you guessed it, Strong...I have to be the pillar, the island in the storm, the Teddy Bear Blankie that makes it all ok.  I tried to do all of that but there were days... Days that I screamed WHY? Why her and not me?
I had a very hard time asking for help, I felt it was a sign of weakness,  and a dear friend reminded me, I needed help, and that so many wanted to do something... anything, because they were feeling the same way we were.  I couldn't believe the outpouring of love and support.
Helplessness, that one was a doozy, I would sit and listen to Doctors and Nurses talk, I would watch them hang bags and bags of fluids on her pole as that "medicine" was going into her veins, I held the blue throw up bag and still carry one every where I go, I watched her come out of surgery and press that morphine button so many times, each time breaking my heart a little more.  But her little smile was always there...ALWAYS
Thankfullness I call it the grasp for the outstretched hand.  I had a sea of hands to grab and I will never, ever be able to thank each and every person who helped.  I do have a renewed faith in humanity though.  I still can't get over that every single moment that I spent my baby girls side was donated leave from my amazing friends at work, Thank you just doesn't seem like enough. 
My family was always there with prayers and thoughts and finances and love... Thank you from the bottom of my heart, I didn't even need to ask everyone just pitched in.  Now on to my friends, those that I went to High School with, Those I have known since I was 3 or 4... Those I have known for mere months... WOW I am humbled, sometimes humbled to tears...crazy uncontrollable tears.
Teacher One of the most important thing I wanted her to learn is that, this is HER body, HER Cancer and HER treatment.  She became her own advocate and knows exactly how to tell any Doctor or Nurse what she has and how she wants to be treated.  You can't imagine how that empowered her!
Fear took over, and I just took that fear and spent every single moment with Sydney, doing treatments, Chemo (pronounced CH-emo in our house) Clinic Visits, fundraising, loving and exploring.  It is all I knew.  Because when fear was there the day began with me reaching over to make sure that my baby was still breathing, and then embracing that day doing whatever she wanted, eating whatever she wanted even exploring our new home base if she felt up to it. 
 Guilt Now this one is the worst, I didn't give my other kids or my husband the attention, information, phone calls, texts or even really existed for them.  I have insane guilt.  I felt that I had to focus all of my energy, as well as, keep Sydney's Energy in the right place to even keep going.  I will never ever be able to make that time up with them.  I missed Dillon's 16th Birthday, man that sucked! Poor Dillon he always seems to get the worst of it, I WAS able to get to town for Mirada's Graduation and Birthday but during that time I felt riddled with guilt that I had just missed Dillon's 30 days before.  Ray would call craving information about how Syd was doing and many times I had to just disengage because either a Doctor or Nurse was coming in or I just didn't know what to say or how to say it.  Do I speculate, do I wait for tests, sometimes I would just fall apart on the other end of the phone and why the hell did I do that to him?  Poor guy completely helpless 12 hours away listening to crying on the other end of a phone.  Good God! Thank goodness he understands me...don't get me wrong there were some days that we both just wanted to jump thru the phone at each other unable to understand what was going on at each others end of the phone.
Pain The physical pain I felt is indescribable and once again wanted to take her place so many times.
There were a few times I just wanted to grab her out of that bed and run... run home, run anywhere, anywhere but there.  Of course she has no idea that this was all going on... We just kept everything positive and really for the first time in her life enjoyed being an only child for those 110 days
Pride I am so proud of the girl she is, brave, The bravest of the brave... Slayer of Cancer Cells and the girl who says "I got this" and "Its only Cancer" can only make a Mothers heart sing with pride. 
She never shed a tear when she had her head shaved and we even skyped with Mirada so she could be a part of it.  Braveheart and Slayer of Slayers.
Love It takes a lot of love and a lot of people to make an experience like this come out positive.  She is an Ambassador for Childrens Cancer Research Fund, She is and always will be a advocate for "Love your Melon" who make sure all kids with cancer have hats to keep their heads warm and make them all feel like Superheros.  Sydney is now part of the North Dakota Make a Wish Chapter and has made it very clear what she wishes for... Stay tuned for that...Its exciting and lifechanging.  She was interviewed for the Minneapolis CBS News Morning Show about how she remaed positive during her journey that is still not over yet... but we are on smoother seas. 
There are many trips back and forth to Minneapolis for Syd, Ray and I for tests, scans and clinic visits... and one day we will be able to utter the words, cured and cancer free... but until then keep the positive vibes coming.  Kepp her in your thoughts and p[prayers and always keep the Slaying Spirit.
Give you wife or husband a huge hug or kiss today and tell them how much you love them.  LEt you kids know that they are your most precious gift in the entire world.  Because I know my precious gifts are Ray and the kids.... My amazing trophies that I am so proud to have and cherish them every single day!