The Purpose in the Aftermath

Y’all know about the devastation of Isaac’s cancer & paralysis so I won’t go over those horrific details again. What you might not know is how financially strapped we really were. Social norms dissuade us from sharing our financial situations, after all it’s a “private matter.” Who wants to publicly announce they are having financial issues, anyway?

NO ONE!

The aftermath of having a child with cancer is likened to a tornado that has ransacked an entire town with only a remnant of once was. You are left to pick up all the rubble alone as those who helped carry you thus far believe the hard work is done. There are organizations & resources a mile long during treatment, yet the clean up crew in the end is just you.  Our entire savings was spent trying to escape the memories of the physical location where Isaac was diagnosed. Our country as a whole was experiencing financial hardship but for us the load seemed extra heavy.

I was inspired to share my thoughts on our finances after re-reading Miracle Morning, by Hal Elrod. I no longer feel shame for this particular situation or care if anyone judges where we were. My hope is that others are liberated & choose to overcome their circumstances by taking action as well.

You may be thinking, why the picture of the food bank card above?

Keep reading…

Cancer was not in our life plan, but I made a decision long ago that I would live life as if it was.  When we first moved to Oregon I was dealing with extreme depression from the aftermath & my near death experience after childbirth. There was something that changed me on the inside when I began to think about someone else’s pain. After visiting the school Isaac would be attending I noticed the playground wasn’t wheelchair accessible. I began a quest after visualizing Isaac and kids like him watching their peers play. The thought of him sitting on the sidelines propelled me to act like a different person. What I wanted to do didn’t match my background, anything around me or anything I had done. 

One foot in front of the other I began sharing my idea, each time I was rejected it was like fuel to find the people who wanted to help. That wasn’t always the case, I remember one day sitting in my car crying my eyes out because it felt like the dial wasn’t moving. In that moment the rejection was so thick I could hardly get a grip on myself. It didn’t help that our finances at the time was barley enough for our young family of seven. During winter months it was worse & I found myself in one of 2 food bank lines to supplement. It was the most humbling experiences, serving others and being served. All of a sudden a idea popped in my head, I thought, the more I sit here and cry, I’m missing out on opportunities to find the people who would want to help. The shame from needing help disappeared (not permanently, that’s another blog post),I became relentless, taking down anything in my path that didn’t match what I was trying to accomplish.

The aftermath of my purpose lead me to that particular time, and sits with me now as I share these words with you. The remnant of my purpose is to share hope from those dark places. I want to be on the clean up crew of your aftermath, helping pick up the peices by showing what the other side looks like with conscious effort to change. Realizing if there were no tragedy to gain clarity we would have no hope to share to others. All the set-backs & struggles prepared me for the Blue Slide Project and this moment. The hard places where I felt alone or rejected, were grips I held on to as I fell with each set back helping me climb back up. Finding meaning for my life by helping others changed my mind about humanity, what our minds are capable of, & what is possible.

You know the rest of the story, my community rallied behind me & in 4 months we raise $53k for the first phase & a year or so later raised another $100k.  Building Grants Pass & Josephine County’s only wheelchair accessible playground. 

If I can stand in a food bank line, while organizing events and bringing people together to build a playground with my background & struggling with depression. You, my friend can do anything you can hope or imagine. Mindset visualization, affirming & showing gratitude for how far you’ve come gives power to your dreams.

Find your purpose in the aftermath!

I’d love to hear from you, comment & share your story we can do this together.

Mona:)

From parent to advocate

Can you please give him an x-ray? I pleaded with the doctor. I know his oxygen looks good now, but he stops breathing, please, give him an x-ray. The ER doctor looked at me and with a condescending tone and says, “How about this, you tell me what I’m looking for and I will give your son an x-ray”. I put my head down in defeat, and said, I don’t know what you’re looking for sir, I just know something is wrong. I knew it was not normal for a baby to constantly cry and scream in agony when adjusting position while breastfeedings. But I did NOTHING because that guy had a degree and he knew better than I did. I will never forget that conversation, months later those words would haunt me as I sat in a University hospital room with a 3 1/2-month-old son, newly diagnosed with stage 4 Neuroblastoma (cancer).

Do you know what stage 4 even means? I didn’t!

His poor little body had cancer everywhere, including his bone marrow.  I had plenty of time to think during our several hospital stays and the questions that always surfaced were, Why didn’t you fight harder & Why would no one listen?  I struggled to forgive that ER doctor who turned me away, I struggled more with forgiving myself for not protecting my son. After getting past the shock of his diagnosis and paralysis, I made a promise to him to always speak up when things didn’t seem right.

Why didn’t I fight harder?

Fear. I didn’t know my rights as a parent and definitely didn’t understand my role as an advocate. Doctors go to school for years, I know they know more medically but they do not know our children as we do. We can tell the level of injury just by the tone of their voice when they scream our name. We can hear the sounds of sickness in the middle of our sleep as we pop out of bed to their rescue, we know when things aren’t right.

There are people in positions of authority that can be very intimidating and can make you feel as though you are overreacting. It’s ok to fight for the rights of your child, but that doesn’t mean to scream until you are heard. Be respectful, ask questions, share your ideas because after all, you’re on the same team. Sometimes you may meet a condescending doctor who will look at you in a certain way to make you feel small, but that is his/her issue. It takes courage to stand up to people with degree’s but at the end of the day, they are just people. Regular people who are flawed and make mistakes. Sometimes those mistakes are fatal, and other times they are caught the next day by a pediatrician. My son was diagnosed with pneumonia the day after that ER visit, the follow-up x-ray a month after he was hospitalized would catch the mass, which triggered the specialist at the university to do more testing that found cancer.

I know I’ve shared my son’s story so many times but his story changed my life. It’s hard not to mention him because through his life I was able to be brave, find my voice, and be a better advocate for him and others around me. I eventually forgave that doctor and myself,  as Maya Angelou said, ” do the best you can until you know better, then when you know better, do better”.

There is a wealth of information and resources online yet parents still struggle with advocacy, not only with medical issues but within the school system. It was a circle of parents who created a support group where I was able to find encouragement. It’s our job to protect our kiddos, if something doesn’t feel right, reach out to someone for help.

Know your rights, click on the link below, or the next time you are at a doctor’s office ask for the patients’ rights and responsibilities pamphlet, read it, stay informed.

https://oregon.public.law/rules/oar_333-027-0080

When dealing with an IEP and 504 plan, Fact Oregon is a great resource, they helped me several times as I navigated the public school system. https://factoregon.org/

I kept the promise to my son and do so by making sure I’m well informed, but the information is useless without action!

Gift ideas that won’t break the bank during Christmas…

One of my Facebook friends was legitimately curious about why people get irritated with starting Christmas so soon. As I sat down to write out my reasoning the response was more of a blog post than a comment on a facebook status. Since I don’t like to waste opportunities, below is my explanation and a few gift ideas that won’t break the bank during Christmas. I want to be very clear, I don’t hate Christmas, I really don’t. I enjoy it all, the sights, sounds, smells, traditions, and spending time with my family. Growing up we didn’t have a lot, my mom would try her best to buy things we really couldn’t afford for a day that was supposed to be spent celebrating Christ. I don’t know if any of my other siblings caught on to how stressed out it made her but I did. My mom was never the type to keep up with the Joneses and neither am I but there is something about Christmas that makes you want to spend money you don’t really have.

There was this one year though, I wished for a dust buster to make my mom life a little easier. I could pull out that handheld device and follow behind my then two-year-old very active little boy instead of pulling out the vacuum cleaner.

It was going to change my life!!

Then…

December 7, 2007 my tiny, sweet & innocent almost 4-month-old baby boy was diagnosed with stage 4 Neuroblastoma(cancer). I remember the nurses forcing John and me out of the hospital to grab a bite to eat and process the new information. I sat at a nearby Applebee’s just sobbing, I would go to take a bite and sob! And just at the perfect time, Mariah Carey’s famous, “All I want for Christmas is you”, started to play in the background and I blurted out, I don’t want that stupid dustbuster, I don’t want it! All I want is my son to be ok, I don’t care about shopping for presents, I don’t care about traditions, all I want is my son to live! Cancer really puts life into perspective as John and I thought we would go Christmas shopping after Isaac’s appointments that day. It was unheard of that a baby would have cancer so we thought we would kill two birds with one stone. Our eyes were open to both the love and hurt that life can bring, even though I had experienced a lot of life, I had never known the pain of watching your child suffer. That year we got to experience just how truly generous people are around Christmas time during a tragedy.
As I grew in motherhood with 5 children, one with special needs, some years Christmas became too overwhelming. Life began to happen and it became harder and harder for me to get into societies version of the “Christmas Spirit”. I guess that’s what I want to make clear, my version of Christmas and yours are two different things. When I think of the holidays, I remember the organizations that helped my family and the people who gathered together to make sure that our Christmas was a little brighter. Although my love language is not gifts, the act of kindness towards my family made my heart super happy.
Looking back on my childhood, the gifts we received were things that we needed, clothes, socks, underwear and our obligatory Christmas Eve PJ’s. In addition, we made tamales, a big pot of beans, rice and baked cookies. I carried these traditions into my own family, when my kids were smaller, I started a Christmas Cookie Decorating contest, it was a way they could help as I didn’t have the patience to have them help.

Here we are 2019 and we still see people the most generous, grateful and kind this time of year. The famous 30 days of gratefulness starts in November, charitable giving is at its peak and kindness is everywhere, then come January it’s back to the way it was. Giving is not as much, complaining is through the roof and kindness is out the window. People wait for a tragedy to donate blood, unite as a country or show kindness because they are too stressed out in their lives to think about anyone but themselves. Hey, I’m guilty of this too, but I realized through the tragedies of my life that “Need knows no season”. Over the years Christmas stuff has made its way into stores in October, with no “Christmas Spirit” attached, this is my observation and it certainly doesn’t apply to everyone. I think the “spirit of Christmas” is beautiful and should last 12 months out of the year not just during December. Isn’t that the way it’s supposed to be anyway? Helping those in need, loving your neighbor as yourself and giving thanks in all circumstances? What a beautiful gift to give year-round and not just as a “thing” you do during Christmas time.

I’m not trying to rain on anyone’s parade, decorate your house in September for all I care but while you are doing it remember that there are gifts that don’t cost a thing. Gratitude, kindness, and giving to the poor. The video below represents the spirit of gratitude, and something we should do every day. Waking up is a gift! Having clean drinking water is a gift, food, lights, cars, they are all gifts. Tomorrow isn’t promised, we all have choices to make in life and the same 24 hours in a day. I’ve wasted so much time focusing on the wrong things that with my new perspective I want to use my 24 hours wisely. I want to serve God, my family, friends, clients(getting people into their homes is my favorite!), organizations and my community.

There are real needs that people face every day, not just during the holiday season and I hope my explanation doesn’t upset but rather inspire. A cancer diagnosis, loss of a child, divorce, death of a loved on all happen 365 days out of the year. None of us are immune to tragedy and we are all one choice away from living on the streets, standing in the food bank line, or having our car repossessed. Long story short, I don’t hate Christmas, give to those in need, be grateful, and show kindness.

P.s.
I think I forgot to mention that I worked retail for 5 years, so I can only handle Christmas music in small doses. The same songs playing continuously for 5-8 hours a day 5 days a week will make anyone go crazy. Thank God for live streaming music!
AND, since I mentioned God, don’t forget that Jesus is the reason we celebrate this beautiful holiday!

My Challenge…

Me and my brother David

I recently had to get on a scale and face the damage. I knew I was overweight but it was easier for me to accept that this is just the way I am. Struggling with weight my whole life, I bought into this lie. It wasn’t until December when my brother David passed away at the young age of 47, that I realized I needed to make life changing decisions when it came to my health. Not only for myself, but for my husband and 5 children who are only eating what I give them. I don’t ever want to put them in the situation to see me, like I had to see my brother.

It is heartbreaking knowing the past 5 years of cancer were not only catching up to me mentally and emotionally but physically as well. I have gained over 80 pounds, losing some and gaining it back double. I get motivation, then something tragic happens and I am unable to balance weight-loss and the situation. To be honest, there was a time I was fearful of trying to lose weight, I associated my weight-loss as a trigger for something bad happening. Now I realize it was just an excuse, but it was an honest fear which lead me to where I am today, over weight, tired, unable to participate in certain things and embarrassed to try for fear of judgment.  As I work through and celebrate Isaac’s journey I know I have come to a point where I need to let go, the pain, fear, trauma, etc. I have always needed to let go, I just didn’t want to or know how.

I have made the commitment to lose weight and work towards a more healthier and fit me. I have tied in the Blue Slide Project to help motive me to stay on track. The Blue Slide Project is a wheelchair accessible playground at my son Isaac’s school. For those new to our story, Isaac was diagnosed with Stage 4 Neuroblastoma when he was just 3 1/2 months old. Two weeks after his diagnosis he was paralyzed when his tumor swelled causing a spinal cord injury. I started the project last year when I noticed the schools playground was not accessible to those who use mobility aids. We still need $62k for Phase 2 and I thought this would be a good way to raise money. I am asking for people to sponsor me in my weight-loss journey, as well as partner. It will work like a jog-a-thon, you can donate “per pound” or you can do a  “flat number”. An example of “per pound”, say you donate $1 dollar a pound and I lose 150 pounds that’s $150 dollars, you could also do per pound, up to a certain amount. An example of a flat number is if I lose 50 pounds, I get $50 dollars. All money donated will go to the construction of Phase 2 of the Blue Slide Project:)

I appreciate your encouragement, I feel like the more people who know about this challenge the more money the playground will get. Please feel free to share and join. If you are interested in sponsoring me, please email me at monapinon5@gmail.com your name, address, phone number  and type of sponsorship. You can mail donations to Parkside Elementary 735 Wagner Meadows Dr. Grants Pass, OR 97526, make check payable to Parkside PTA and note for Blue Slide Project. Also “like” us  and follow my progress on facebook, http://www.facebook.com/TheBlueSlideProject

“Commit everything you do to the Lord.
Trust him, and he will help you.
He will make your innocence radiate like the dawn,
and the justice of your cause will shine like the noonday sun.”

Psalm 37:5-6

Mona