We’re in this together.

If you are a past visitor of my site, you can see things are in great disarray.  I apologize!  Please bear with me as I put things back together again and try to not only resurrect my old content, but catch you up on the last five years of our lives during which time we’ve been busy breaking barriers and enjoying the craziness.

I initially started blogging to work through the rainbow of emotions I was having over receiving what I perceived as a grim diagnosis.  The blog posts I plan to resurrect and repost are from those early uncertain days.  I suspect they might still be helpful to parents of toddlers and preschoolers who are looking WAY too far ahead and feeling overwhelmed by the big picture.

The elementary years get easier.  There is hope…and adventure and JOY!  Our lives have been blessed in large part because of cerebral palsy.  We have met people and done things that I would have never dreamed of.   Honestly, I’ve been too busy to blog and thus the need to pretty much start from scratch with this site.  The positive side of that is I just haven’t felt the need or the angst to work things out with the internet as my sympathetic audience.  I have so much to share with you! It’s mostly good, so I’m glad you’re here.  Read, relax, and realize this: you are not alone.

 

Our story.

Unlike a lot of moms, I never planned to be one.  I lived life as a free spirit after graduating with a Bachelor of Arts in Speech Communication from the University of Washington, working as a paralegal and a Realtor, traveling extensively to New York, Florida, Mexico, the Caribbean and Australia in my free time.  I bought and sold vintage coats on eBay.  I started a business called Instrumental Occasions, providing piano music for weddings and other special events.  I never settled down, committing only to my beloved state of Arizona – the first time with a townhouse in Tempe and the second time with a house on the fringes of the Arcadia neighborhood of Phoenix.  I chose that location because it was conveniently close to Dos Gringos, my favorite party spot in old town Scottsdale.

In late 2004, I received a call from my mother that would set an unexpected chain of events in motion.  She said my Nana was in the hospital and I should come right away.  They didn’t know if she was going to make it through the night.  I bought a one-way ticket to my hometown of Clarkston, Washington and spent the next several weeks going back and forth to the hospital to be with her at the end.  She was 92.  I was 34.  Up to that point, it was the most important thing I had done in my life.

While in Washington, I went to an old family friend’s house to watch the Super Bowl.  It was there that I met the future father of my only son.  It was a very intense period in my life.  The extreme sadness I felt over my Nana drifting away was tempered by the intense feelings I was having toward this man.  I fell in love and did something my family would have bet the farm I would never do.  I sold my home in Arizona and moved back home –for a guy.

We were surprised and blessed in November of 2006 with Phoenix Broyles Jose.  He was a week late and the birth was difficult.  Phoenix suffered meconium aspiration and was delivered by emergency C-section five hours after we arrived at the hospital.  Four months later, when he wasn’t reaching several developmental milestones, his pediatrician recommended he start physical, occupational and speech therapy immediately.  The period of time between that visit and his eventual diagnosis of spastic quadriplegic cerebral palsy six months later was a spiritual and emotional death and new beginning.  I would never look at life the same again.  I began my struggle to overcome my own ignorance, prejudice, fear and superficiality.  For instance, I was initially afraid of and resistant to all adaptive equipment.  Now I fight every day to do everything myself, without accepting help.  I find myself longing for “normal,” but appreciating the unique opportunities and experiences that come about because Phoenix is who he is.

Phoenix’s father and I never married.  We broke up when Phoenix was two and I returned to Arizona alone, embracing my role as a single mother and advocate.  My son is now a bright, popular 10-year-old who routinely inspires friends, family, teachers, care providers and strangers on a daily basis.  The sky is the limit for my little rock star.  He is a beautiful soul, inside and out.  Fortunately, he was born into a world that is vastly more accepting and inclusive than it was just 30 years ago.  I have no doubt that he will lead an extraordinary life, filled with more love than pain.  I no longer scour the internet in an attempt to find a cure.   Although I still believe in miracles, I have witnessed first-hand how Phoenix has the power to bring people closer to God – so why would God “cure” this divine ability?

Phoenix and I are traveling this bumpy road together but we each have our own journey, our own lessons to learn and to teach others.  He has given my life meaning and purpose.  My angel has cerebral palsy and I am a better person because of it.

Meet Phoenix

Blog

Milestones

Remember your first visit to the pediatrician where your child receives their first “grades?” He is in the “X” percentile for height and the “Y” percentile for weight. Some moms might feel like they are at the head of the class. “You, Mrs. Jones get an A+! You must have religiously taken your prenatals! Good …

About YOU

YOU were chosen…


Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

“Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter, patron saint, Cecilia.

“Rudledge, Carrie, twins, patron saint, give her Gerard. He’s used to profanity.”

Finally, he passes a name to an angel and smiles,

“Give her a handicapped child.”

The angel is curious. “Why this one, God? She’s so happy.”

“Exactly,” says God. “Could I give a handicapped child to a mother who does not know laughter? That would be cruel.”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it.  I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make it live in her world, and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.”

God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps, “Selfishness? Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word.’   She will never consider a ‘step’ ordinary. When her child says ‘Momma’ for the first time, she will
be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

“I will permit her to see clearly the things I see . . . ignorance, cruelty, prejudice . . . and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side.”

“And what about her patron saint?” asks the angel, pen poised midair.

God smiles. “A mirror will suffice.”

– Erma Bombeck, May, 1980  Continue reading “About YOU”