Dreams Don’t Work Unless You Do

Dreams don’t work unless you do.  I found this quote by Maya Angelou a few months ago to send  with my son, Rigel as he worked to prepare to serve a mission for the Church of Jesus Christ of Ladder Day Saints.  Such a simple thought made such a deep impression as I continued to think about it throughout the day.

Dreams, the kind that are really worth dreaming, take work.  You’ve got to set a goal, roll up your sleeves, and with great determination  put your shoulder to the wheel to bring them to reality.

Harriet Tubman, an escaped slave, led hundreds of enslaved people to freedom via the Underground Railroad.

Liz Murray, who born to drug addicted parents, became homeless just after she turned 15 when her mother died of AIDS.  Without a stable home, supporting both her and her sister, she graduated from High School in just two years.  She was awarded the New York Times scholarship for needy students and accepted into Harvard.

Chiune Sugihara.  He was a Japanese diplomat in Lithuania.  When the Nazi’s began rounding up the Jews Sugihara risked his life by writing and issuing unlawful travel visas to Jews.  He hand-wrote them 18 hours a day.  When his consulate closed and he was forced to evacuate it’s said that he kept writing visas and threw them out  from the train as it pulled away from the station.  He saved 6,000 lives.  Nobody even knew what he had done until Israel honored him the year before he died.

Bai Fang Li was a Chinese Pedicab driver who donated more than 350,000 yuan to enable more than 300 poor students continue with their studies.  He did this until he was 90 years old.

How about Randy Pausch who inspired thousands with his lecture entitled “The Last Lecture: Really Achieving Your Childhood Dreams.  Now I can’t say that it was my childhood dream to have a son with intense special needs, but it IS my dream to rededicate myself to making his life an excellent one.

I think it is safe to say that each of these people made their dreams come true, even if that dream was to help someone else.

I dream of having the courage to follow my heart and my intuition in making Parker’s life the most excellent possible.  I’m rededicating myself to getting Parker the best medical care even if I have to find a way to take him out of state.  I’ve been reading medical reviews into the wee hours of the night trying to understand more about Pulmonary Hypertension and how to create an environment within his little body best conducive for the lowest pressures possible.

We have a few leads to follow.  When we quit feeding Parker continuous feeds overnight we noticed that we could decrease his oxygen requirements.  This gives us a bit of proof that those continuous feeds were causing Parker to reflux up over his trach and then aspirate into his lungs.  As we’ve increased his daily feeding volume we’ve seen signs that once again he could be refluxing over his trach and aspirating into his lungs. 

Trying to convince Parker’s surgeon that this was indeed happening proved to be one tough sale.  But, finally, we’ve received permission for a BRAVO to be placed on June 24 along with a Bronch to be performed both of which will let us know if the kid is aspirating into his lungs or not.  Weird as it sounds, it would be a good thing to discover he is still aspirating as we’ve seen in the past that aspirating causing Parker’s PH numbers to increase.

This would give us something to address in our dream of getting those pressures as low as possible. 

You’d be surprised to know how hard and how long I had to work to get these procedures added to his surgery on the 24th.  I was at the point of almost throwing my hands up in despair when word came through our Pediatrician that she was able to do the convincing needed.

Miracles quote

I’ll be sending a couple of those medical reviews to both Parker’s Cardiologist and his GI.  There is some proof that one of his meds is interfering with one of his PH meds, potentially lessening it’s ability to keep the veins in Parker’s lungs open and his PH levels low.

It may turn out that I just have a few pairs of eyeballs rolled at me, but I am resolved to be as big of a pain in the arse as needed to get the attention Parker needs by those who could potentially turn this disease around enough for Parker’s health to be increased and a few years added to his life.

To be honest, my dream is to have Parker’s PH resolve.  Dream big or go home, right?   As I’ve spent time in prayer I’ve felt as though this is the path for me to follow and I have the faith to see it to it’s destination where ever that may be.

A friend recently asked me if I could live with myself if I didn’t do all I could in regards to Parker’s pulmonary hypertension.    Going there wasn’t pretty.

What does it take to make dreams come true?  Faith and hard work.  Faith and hard work.

 

What are the big dreams you have?

 

 

 

 

 

 

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. Mama, you inspire me, you really do. And you’re having surgery the 24th? So are we, assuming we can get those platelets to a safe level, that is. Are you going to trach/vent on the 11th? We’ll be there then, too.
    Rebekah recently posted..Fun Times with Blood Work (Not Really)My Profile

  2. Chris says:

    I loved Maya Angelou. Her quote “We did what we knew to do, and when we knew better, we did better” has really been instrumental in guiding me. I always am first in line to chide myself for what I should have done differently (in fact, just this morning I was kicking myself for the one millionth time for something that happened in high school- seriously, high school), but I try to use that quote to forgive myself, at least a little. I hadn’t heard the one you quoted, but I have to say, I like the one about giving as much energy to your dreams as to your fears even more. Wow, wouldn’t that be life changing if we could all do that!

    I’ve said it a thousand times, but I’ll say it again in this public forum- Parker is alive and thriving because of YOU. Period. Don’t ever doubt that.

Speak Your Mind

*

CommentLuv badge