Support

Ranakpur-Jain-Marble-Temple-pillars-Frescoes-Apr-2004-02

Support.  That is what one needs when a loved one is diagnosed with cancer.  Flat out.  We need it.  Whether it’s in person, virtually, thoughts, prayers, hope, money, food brought to us because we are too tired to cook, a nice note on a Facebook page, a card in the mail, a smile from a stranger who saw my Fuck Cancer shirt or saw the back of my van that has super hero stickers and my Fifty Shades of Grey “Laters Baby” sticker next my “I wear Gray for my Son” sticker and the Childhood Cancer magnet and the “My son is a fighter” with a gray ribbon magnet.  Support.  From family and friends and new comers that find our story on social media, or in the media or hear it from one of friends or loved ones.  It all means so much.  We appreciate it in ways we cannot describe with words because it’s a feeling you get when it matters.  When we were first told about all of this and feeling scared and down and angry, people surrounded us with love and care.  When I couldn’t pray because my faith was rocked to the core, people did for me.  When I cried, people cried with me because I have shared it all.  The good, bad and ugly of it all.

I have taken flack for videos of him in pain posted on his Facebook page when I was desperate for help.  People think I am exploiting my son when really I just want people to know the truth.  Cancer Sucks.  It’s despicable and it doesn’t discriminate at all.  I have been told I am killing him with chemo and with morphine by cowards who hide behind their cold and mean words in a personal message.  And then I offer them my hand and try to help them and understand why they would say such a thing when maybe they are just so grief stricken from the loss of a loved one that they lash out, but know this I am doing all I can to save my son and cherish every minute we have with him.  I have had people tell me I am not doing enough because of certain things that are illegal in our state sadly when I feel it shouldn’t be.  I am all for whatever gets you through the night and especially for those that are sick like my son and could benefit from it.  With that said I am sober 78 days because it wasn’t helping me through the night anymore.

And on the flip side, our community has taken Adler and our family in their arms and hugged us when we needed it. We had a benefit last year for Adler put on by a group of my friends and some family that was outstanding.  The out pouring of love and support that day left us emotionally wrecked and humbled beyond belief.  And people continue still as we just had The Axemen, a local fireman’s motorcycle group, raise funds for Adler and also Aaron’s graduating high school class raised money for us just last weekend.  Teary eyed and humbled yet again from the love. We have been given gifts by many people for him and cards and stickers and toys and gift cards and words of inspiration that stay with me all day long and into the night when my  mind is at it’s weakest.  Jeep clubs, women’s groups, local banks, schools, groups of gamers that know us, kids who just want to help have donated time and money for Adler.  Strangers have brought us meals that we gladly ate and appreciated.  We are on so many prayer lists at churches that God has to know Adler by now!!!  If I am forgetting someone or a group I apologize but there are just so many people that want to love him like we do.  And that has restored my faith in some aspects.  Humanity is so broken, but love does still exist.  I see it everyday amongst all the hate and anger and crime, it’s there.  It’s there because a child, our child shows them strength, courage and conviction.  He is the light in the dark and it follows him like a rainbow where ever he goes.  Adler is contagious.

Pillars are the foundation to many strong structures through out history in architecture and this community and the love that has formed around Adler and his social media family and our personal friends and family too will not let us fall.  We are held up in thanks to you all.  I have dark days and light days and no matter my days, people read my words if the want to and I hope it touches them in some way.  I have shared this journey not only for the public to see into our lives and the life of a child with cancer, hydrocephalus and adrenal insufficiency but to quietly ask for help.  My husband and I have learned through all of this that you do in fact have to ask sometimes and not be afraid either.  A good friend of mine said to conquer fear you must step outside of your comfort zone and I certainly have had to do that many times along the way.  And because of the reinforcement of the people we haven’t been alone in our fears.  Sure, we are boots on the ground and the ones fighting the battle and holding the bucket when he pukes, taking him to his weekly chemo and holding that IV pole when he needs to get up as the poison drips into him and we hope it kills the cancer for good and not him in the process and yes I am up nights with him and was in the pain prison with him but with out my outlet that has now become my support group, I would not be where I am today.  I wouldn’t have all the kind and loving and caring, meaningful words from people all over the world or right next door to keep me a float.  I will not sink, even though the ship has been capsized and pulled over and under and back up right……I keep going and that’s from the backing of supporters that we have.  Bold As Love is our motto, our Jimi Hendrix song but it’s so much more than that to us and to so those that know the meaning behind it.

So, if you follow, thank you…..if you have prayed, thank you…..if you have donated, thank you…..if you have sent a virtual hug or given me one for real, thank you……if you have sent gifts or just love out into the universe for us, thank you.  If you know and care and continue with us on this journey of unknown length, thank you.  Much love to you all.  May we ALL see land soon from the helm of this ship I steer through the storm of the sea of our lives.  Thank you for everything.

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