I know that I have talked about my goals for a foundation for parents dealing with pediatric cancer while we were in hospital with Andrew. But since I have more new readers than old ones now, I will explain my goal with this PureHeart foundation.
While we were in the hospital with Andrew, I saw a huge need for a charity that caters to feeding the parent’s souls as they help their child heal cancer. Yes there are some charities that help parents financially but there is a lot of paperwork, red tape, and you have to be really poor. They don’t get that no matter how much money you make, you are going to be poor when dealing with pediatric cancer no matter what your income! Well, except for the 1% maybe, they are the only ones this wouldn’t effect financially. If you make even $30,000 to $40,000 a year you don’t qualify for aid. SERIOUSLY? So only if you are really poor or really rich do you have financial support.
Beyond financial support there is nothing feeding the parent’s souls. We are on the front lines of this war on pediatric cancer and nothing is feeding our soul to keep the good fight up. We sleep in chairs, when we get to sleep, the Clown house is there but you don’t want to be there too long because you can’t stand being away from your child. We are there helping our children through extremely aggressive treatments, calming their fears, making them smile, helping them to the bathroom, cleaning up bedpans, changing linen when they sweat too much or vomit from the chemo, or have accidents, bathing them, measuring urine, etc etc. And we do it with a brave face so our child isn’t scared even though we are shaken to our very core with the fear of losing our beloved child, our heart. And your heart aches as you watch this savage disease not give shit about how amazing your child is as it ravages their bodies but not their spirit. Ok, even this brought tears to my eyes as I remember doing all of that and more.
This is why this foundation is my heart’s desire. I want to be able to go in and pamper the parents and feed their souls on a regular basis. Have people volunteer to give chair massages, mani/pedi’s, hair, whatever else we can do to help the parents feel normal, even if just for an hour. Having that on a regular basis would help tremendously! I had it a few times in the four months we were there and certainly could have used it a little more. With the amount of stress to deal with, parents need pampering on a regular basis so they can be better parents to their children. The children are well looked after as they should be, so should the parents too though. They need the pampering as well so they can be better parents to their children who are fighting for their lives. people would tell me to take care of myself. HOW??!!!! You can’t! You need help!
I also plan on working with the nurses, because they know the real deal of what is going on with the families. I want to ask them who needs a check for their mortgage, their electric, food etc. and just write out a check to whatever utility they need paid. I don’t need to know what they make, if they need help they need help!
Then my goal down the road is to have a retreat for parents to go to, to de-stress from hospital life, a place where they can just be themselves and not the club title they were thrown into, “cancer kid mom or cancer kid dad.” We are more than that! Living in a hospital for months at time, making life and death decisions everyday for your child has you on edge to say the least. Then you’re just thrown out into the world to deal with this horrendous ordeal you’ve been through as you try to piece your life back together with no resbit. You are a shell of a person trying to keep everything together, especially if your child passes. The retreat would be a place for parents to help make sense of their lives if their child crossed as well. Something like the Maribal Spa in Arizona, only it caters to parents dealing with pediatric cancer. I want them to be able to come and totally receive, no giving! Give them tools to deal with grief or recover from the stress of hospital life. Couples need time to be a couple again and heal. Many relationships don’t survive this trauma.
The children have Make A Wish and other charities that cater to ill children’s dreams and that is so awesome, but what about the parents? Who’s caring for them? The PureHeart Foundation that’s who! These children need and deserve healthy parents emotionally, spiritually and physically, and that’s where we come in!
To keep up on what we are doing with the Foundation and how to help, click on the link above. The link to the Foundation isn’t up yet on pureheartspace.com because it is still so new, but it will be very soon. That is where we will be putting info about the Foundation, fundraisers we have coming up etc. We are partnering with some wonderful charities, businesses and people, this is going to be HUGE! Be a part of it!
IT’S ALL GOOD!