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Finding Miracles

One family's story of dealing with sacral agenesis, cleft lip and palate, surgeries, hospitals and miracles.

Meet Zachary

This is my son, Zachary.  He is like any typical 9-year old little boy.  He loves Star Wars, he loves to play on the PS4, he loves to annoy his little sister and he is sweet and caring.  One thing sets him apart from other 9-year olds;  he has endured 15 surgeries so far in his short little time on earth.

Before Zachary was born, we knew that he would be born with cleft lip and palate.  My husband and I prayed continually that our son would not endure this hardship, however the Lord had a bigger plan that is slowly being revealed to us.  After researching everything that we could about cleft lip and palate babies, our special little boy came into the world.  We could not have been more in love with him.  Instantly we fell in love with his wide smile and his beautiful spirit.

This blog will discuss our course of action for his medical treatment for Zachary, the lessons we have learned from this incredible boy being in our family, and our own journey from Las Vegas to Los Angeles.

I hope you enjoy this blog and I welcome any constructive insight or thoughts.  Please feel free to email me.

Featured post

A Letter to my Son – How do you handle trials?

My Dearest Zachary,

Where has the time gone?  I remember the moment you were placed in my arms and when I looked at your sweet face, I wondered what the world would hold for you.  I wondered how kind people would be towards you.  I wondered why type of a person I must have been to be blessed with a son like you.  While I knew we had a long road ahead of us, I never knew how long and difficult this road was going to be for you.

First, as you’re starting the fifth grade, you amaze me.  Your intelligence and wit are absolutely incredible.  Your love for Star Wars is really like nothing I’ve ever seen and your knowledge for details and facts is amazing.  You are so much fun.  You are also sensitive and loving, which makes being your mom a pleasure.

I’ve watched how you’ve handled all of your trials with such determination and faith.  You have always held to the knowledge that the Lord loves you and will help you through each one of your surgeries.  Even as we are approaching surgery no. 4 for the same exact procedure, you are still determined to make your life better and you hold onto the faith that this surgery will be successful.

Simply put: you are my hero Zachary.  In spite of everythingt, you can still laugh, still make me smile, and you are still concerned about others around you.  When faced with diversity, your compassion and love for others is indescribable.  I have been so blessed to be your mother and have learned so much from you.  Most importantly, I have learned that through all of life’s trials the greatest thing we can do is laugh and serve those around us.

Zachary you have the most infectious laugh.  I love hearing you and Faith laugh, I love hearing you laugh with your dad as you’re trying to tell him a story.  I love that in spite of everything, you can still find good in the world around you.  You make me smile.

With this being your 18th surgery, it still feels like the first one.  I hope you know that I would willing to trade places with you so that I could have the surgery and pain, instead of you.  The hardest thing I’ve ever had to do is watch you suffer.  I know that your dad feels exactly the same way I do about all of this.  He has said repeatedly “Why Zachary?”

Through everything, you are still my little boy.  I love you more than all the stars in the galaxy.  Like you say before every surgery “May the Force be With You”.

Love you always,

Mom 20170814_103317

May the Force be With You

Zachary is a huge, huge, HUGE Star Wars fan.  If you talk to him for even 3 minutes, you will realize he’s not your regular run-of-the-mill fan.  He is absolutely insanely obsessed with Star Wars.  We have a dog named Yoda, Zachary’s room is covered in Star Wars, and he can tell you every conspiracy, character and planet (nation?) that has ever existed.  Sometimes it is a tad bit annoying and at other times, it’s so fun to see him a fan of a movie from my childhood.

Scott is not a huge fan of Star Wars.  It’s okay, we don’t judge.  He knows some of the things about Star Wars, but not a large amount.  Me on the other hand, I can fill in some of the information that Scott can’t.  I figure between the two of us, Scott and I are one complete fan!

Zachary’s favorite Star Wars character is Princess Leia.  Yes, we had mourning and tears at our house when Carrie Fisher died.  Princess Leia in the gold bikini is Zachary’s favorite and yes, Princess Leia was his first crush.  (He would be so upset if he knew that I was writing this!) My favorite character is R2-D2.  Every word he says is bleeped out (potty-mouth)!  I also love an At-At Walker.  I have a remote control one sitting on my desk as I type.

Since Zachary was a little boy and became obsessed with Star Wars, he and I have always talked about Star Wars.  I shared experiences with him from when I was a child and wore my C3PO under-roos and my brother played with his Millennium Falcon and AT-AT Walker.  It was what we did.  It was our culture and it is now Zachary’s culture.

At CHLA, Zachary was part of a program for boys’ that all had cranial-facial deformities and one of the guests that came to their Tuesday night meeting was the actor that played Jar Jar Binks, Ahmed Best.  Ahmed taught the boys about self-defense and protecting themselves. Zachary was so excited he couldn’t even stand it!  He talked about it to anyone who would listen.

I share this because you need to understand the love and connection that exists with Zachary and I because we talk Star Wars, we love Star Wars and we often play with our remote controlled BB-8 (Zachary) and my AT-AT Walker.

A few surgeries ago, as they were wheeling Zachary off to the operating room, he turned to me and said “May the Force be With You.”  Fighting back the tears, my response was “And also with you.”  This has become our thing.  Before when they would take Zachary back, I would be crying and sobbing, he would be getting upset and it was an ugly scene.  Now, through our usual tears, we share our love for Star Wars and we connect even more every time.  Our one simple statement, says so much.

More than anything when Zachary goes to the operating room, I do pray and hope that the “Force” is with him.  I am hoping that God and His angels are standing around to help our little boy.  I know that they are and I hope that Zachary is able to feel them and that he is comforted by the “Force” in those terrifying moments.

Each and every time the nurses wheel Zachary away, I want so desperately to take his place.  I want so desperately to take from him the pain that I know he will experience.  Scott wishes he could do the same.  However, we aren’t able to do so.  Our brave little boy goes into that operating room and he fights.  Maybe not with a light saber, but he is a fighter.   He is the Yoda master of surgeries!!

One of the lessons that I have learned from all of this is that I hope the “Force” is with each one of us. I hope that in times of despair, trials and heartache, we can feel the “Force.”  Sometimes, we need to be Force in each others’ lives.  Sometimes we need to continue fighting.  Sometimes we need to look upward and have faith.

May the Force be with all of us. 20161029_175549

  This was Zachary in Halloween of 2016.  Yes, he is the dark side here.

Kylo Ren is cool, right?!?!?

 

The World is going to be a loud place!

Many times people ask me why I talk so loud.  I’ve always been a naturally loud person.  My whisper isn’t quiet and my loud can be heard across the neighborhood.  That’s okay though.  One of the main reasons why I am loud, is so that my son can hear me.

Since Zachary has been a baby, he has failed every hearing test.  When he was a baby, we figured it was just fluid on his ears.  When he was a little boy (3-4) years old, we figured he just needed tubes placed in his ears like other kids with his condition.  When Zachary was six years old, we had his hearing tested extensively and learned that Zachary only had approximately 20% hearing in his right ear.

Many times Zachary has to strain to hear a conversation and I often look over at him and see that he is lost in a conversation if another is speaking too quiet.  Zachary has learned to compensate for hearing loss when he is not around others who know that he is partially deaf.  He can read lips, he picks and chooses parts and focuses on putting those together to make sense, and he has no problem saying “what did you say?” in order to understand what is happening.  Zachary sleeps at night with the television on and many times when I pass by Zachary’s bedroom, I comment to Scott about how loud it is.  His response is always “it’s not that loud for Zach”.

While this year was difficult for Zachary at his first elementary school, one of the benefits of changing to a new elementary school was that Zachary was placed in a deaf and hard of hearing school.  Zachary is surrounded by other students who are experiencing the same disabilities that he is.  Other kids have hearing aids, the teachers use amplification systems, and Zachary feels right at home knowing that he is like other students.

After debating about whether or not to get hearing aids for Zachary or to see what other options were available, we were so blessed to be able to meet Dr. Hotchstim at CHLA.  Dr. Hotchstim, besides having a wonderful bedside manner, is definitely on the cutting edge of medical technology which can greatly change my son’s life.  On Wednesday, Zachary will be going to CHLA to have some bones replaced in his ear in order to help him hear from his right ear. When Zachary was born, the bones didn’t develop properly, and these bones will be replaced in order to help restore Zachary’s hearing.

Scott and I are both excited and nervous.  Excited because our little boy will no longer have to read lips, he won’t have to feel like he isn’t part of a quiet conversation, he’ll actually be able to hear us when we whisper, he won’t have to turn to his “good” ear in order to hear and because he’ll be able to lower the volume on his television.  We are nervous because there are always complications associated with a surgery and we are so hopeful that this will work for our Zachary.

We’re keeping our fingers crossed and staying positive that everything will work out for our little Zachary.  I’m waiting for the day when he tells me “Mom, you don’t have to yell.”  Those will be music to my ears!

 

Finding Love amid our Pain

I have learned an incredible lesson the last couple of months.  It is so difficult to find love when pain is so blatant and rampant.  In light of the recent elections and our new president, there has been so much pain, fear and uncertainty.  It seems like in today’s world, love, kindness and human decency have gone out the window.  I’ve learned, we must love each other.  We must love for ourselves.

Zachary recently experienced his own painful experience at the hands of a bully.  Someone who was supposed to be his friend, turned on him and physically hurt him.  While the details are unimportant, my son was physically hurt at the hands of another in the exact area where my son has had three (3) previous surgeries.  After bruising and severe swelling which affected Zachary’s medical procedures, we fought to remove Zachary from his school.  In what proved to be a long and tedious fight to protect our son, Zachary grew angry.  He grew to resent one culture of individuals because this individual and the other bullies in his class are this specific nationality.  Scott and I have tried diligently to help him deal with the pain and betrayal, but explaining forgiveness to a 9 year old can be very difficult.  I’m 39 and I don’t understand it!

With time, Zachary has grown less angry.  He’s far from where he needs to be, but he is still moving forward.  He is learning to advocate for himself, he is learning that his parents will fight until the death for his well-being, and he is learning that the Lord can step in and help him along the way to forgiving this supposed friend.  Zachary will never play with this friend again, however, Zachary is learning to forgive so that he can let the anger go.

One very important lesson that I learned from all of this is that we must find the love even in our most difficult and painful times.  We must love each other, we must pull together, we must help each other.  While it’s easy for me to love my dear son and help him during this difficult time, I found that I had to help him forgive those that had wronged him. Scott and I worked diligently, and still do, to help show Zachary that all friends will not turn on you.  We love him fiercely and will battle the wars on his behalf.

Once the physical pain subsided, the emotional pains were still there for Zachary.  He is seeking counseling in order to help him deal with the betrayal, pain and anger.

How often do we cause emotional pain in what we say to others or by our actions?  How often do we cause pain when we should be showing love and extending a hand of friendship?  How quick am I to anger at another without knowing the depths of hell they have walked?  My goal is to diligently spread love!  Love for myself, love for my husband and children and love for my fellow man.

Amid the pain, we must love!  20161214_151328

 

 

The Memorable Halloween

Halloween is such a fun and magical time.  I’ve always loved Halloween:  the crisp air of fall lingering,  pumpkin spice that can be found in everything, and the excitement of children and adults as they figure out what they are going to be this year for Halloween.  I’ve never been a huge fan of dressing up myself.  I prefer to hand out candy and watch the cute kids as they come to the door trick or treating.

For Zachary’s first Halloween, we learned that he would be having surgery to correct his cleft palate.  This was a huge surgery and one that would definitely make Zachary’s life a lot easier with eating.  I was a little disappointed to find out that his surgery would be on Halloween.  Little did I know, that this would be one of the most life changing experiences I would ever have.

Since Zachary was a baby, he was scheduled to head to surgery first.  Our doctor had arrived and while they were preparing for surgery, Scott, Zachary and I waited in his hospital room.  We noticed that several of the nurses and care givers were walking around with racks of costumes.  They whisked in and out of patient rooms while they laughed with the patients and talked about Halloween and collecting candy.

After we had left our baby with the doctors, Scott and I decided to head downstairs to the lobby to get some fresh air.  As we sat there talking, we noticed a beautiful little princess walking through the lobby.  She was dressed in a gorgeous pink gown, with a beautiful crown, her hair freshly curled and she was wearing sparkly silver shoes.  As she walked through, she held her head up high and looked beautiful.  Scott and I immediately noticed that she did not have any arms.  She was missing her arms from the elbows down.  This did not stop her from wearing her gloves though.  She put them on the ends of her arms and wore them proudly.  She was, by far, the most beautiful princess I have ever seen or will ever see.

Overcome with emotion, Scott and I headed back upstairs to our son’s room.  Only then, were we met with kids dressed as superheroes, witches, and pumpkins.  These were kids that had recently had surgery.  They were being pulled in red wagons by the nursing staff or their parents, and they went trick-or-treating to all of the offices and departments at Shriner’s Hospital.

I was completely amazed that a hospital would remember to do something so memorable for their patients.  They provided these sweet children the opportunity to trick-or-treat, even though they were still recovering, couldn’t walk, or might have considered themselves as the “less-than-perfect princess”.  To every nurse, doctor, worker or whomever that works so hard to make the holidays special for these children, thank you.  Your kindness does not go unnoticed.  In fact, your kindness is life altering.

Words cannot express the incredible love and compassion I had for every child that was in the hospital that day.  They completely changed my life. Not a Halloween goes by that I don’t think of this amazing little girl that wore her gloves, straightened her crown, and paraded through the halls like the royalty she was.  I still get teary eyed thinking of this incredible Halloween that completely changed my life.

Happy (LATE) Halloween from Zachary!  20161029_175549

 

City of Angels

When non-natives think of Los Angeles, they associate it with smog, traffic, people and more people. Before Zachary, I associated Los Angeles with the Dodgers, the Hollywood Walk of Fame and famous people.  I had only been to Los Angeles a number of times; so few you could count them on one hand.

When Zachary was born, Scott and I knew that we wanted to get him the best medical care we could possibly find.  After doing our research and learning that there was only one (1) doctor that performed this surgery in Las Vegas, we quickly started looking elsewhere for medical care.  We chose Shriner’s Hospital because it was close to Las Vegas and offered the best chance of giving our son a “normal” life.

When we came down for the initial appointment, I was frightened of driving in Los Angeles. So many people and cars coming at the same time, I was on overload.  It was overwhelming, but I found hope in this busy town.  I found hope that the incredible doctors at Shriner’s would be able to fix our son.

When the time came for Zachary’s first surgery, Zachary and I checked into the hospital a day early, just to ensure that Zachary had fasted through the night and that we were there for the early morning surgery.  After saying my good-byes to Scott, I laid with my little boy in my arms and knew without a doubt that everything was going to be okay.

During the night, Zachary woke up for his usual feedings, however, after midnight, he was unable to have any more liquids.  Try explaining to a 6 month old that they can’t eat.  While I held my crying baby and praying continually for some kind of relief, I looked out the windows of the hospital that overlooked Downtown LA.  I searched this great big city to find the answers to so many of life’s unanswered questions.

The solace, peace and stillness of the lights that glowed through Downtown were mesmerizing.  In the quiet of the night, I discovered a love for a beautiful and incredible city.  The draw of my soul to this town is indescribable.  Words can not express in that first night, while looking at lights and buildings in Los Angeles, the love I felt for the town that would inevitably change my little boy’s life.

Over the course of the next six (6) years, this was my routine with every hospital visit and every long night spent watching my little boy struggle in pain.  As he laid in bed, I searched for my favorite buildings. I watched the weary mother with her bags of groceries and her little kids or the elderly couple as they walked their dog.  Yet every time, without fail, I found inner peace and knew that my son would be okay. I felt like I was being rescued by the City of Angels.

When my husband and I mentioned that we were moving to Los Angeles, the response was always “LA?  With all the people?”  My husband and I wouldn’t want to be anywhere else. My heart wouldn’t want to be anywhere else.

While being in Los Angeles, I have discovered who I truly am.  I have discovered my love for real estate and helping others plant their roots in this beautiful city.  I have made friends that are more than friends, they are my family.  Los Angeles is home.  The people are incredible.  The culture is amazing.  More than that, it’s a place I have connected with heart and soul.

I still love to drive and see the lights of Downtown LA.  I feel so much hope, peace and love for the city that has changed my son’s life.  The City of Angels saved not only my son, but me as well.

*On a side note, I saved this picture a number of years ago and I fail to remember the source.  Please forgive, but thank you to this photographer for this amazing pictures of Los Angeles.

Lesson learned: Finding Someone’s True Character

When Zachary was born, we knew that he would be born with cleft lip and palate.  While we didn’t know the extent, we still were prepared for the worst case scenario.  Zachary could not have been anymore perfect.  He was beautiful in every sense of the word.  When the doctors eventually placed Zachary in my arms and I held my little boy, my entire world changed.  I knew then and there that I would do anything for him, I would make anything happen for him and I would take care of this sweet little spirit the Lord had given me to watch over.

My dad had come to the hospital not knowing that I was in active labor and he was in fact, the second person to hold Zachary.  Scott was the first and he took Zachary over to see his Grandpa.  This was my father’s first grandchild and he was immediately taken with Zachary.  At that time he said something that has stuck with me.  My dad said, “Zachary will always be able to see the true character of others because of everything he will experience in life.”

When you look at Zachary, he looks like any other kid on the playground at school.  However, he is far from it. Zachary has been through so much in his short time here on earth.  While other kids are able to play soccer and basketball, play trumpet or french horn, or even spend the day walking at Disneyland, Zachary does not have those same experiences.  Zachary’s summers consist of having and recovering from surgery, wondering how many weeks until he can swim, he selects instruments that are not played by the mouth, and he spends his day at Disneyland in a wheelchair because he tires too easily.

Making friends has not been easy for Zachary.  Many of the other kids make fun of how he walks, how his nose is slanted or how he talks.  We expected there to be bullying, we expected that it would be difficult.  Zachary has experienced bullying at school and church.  Yet, one thing remains: Zachary can see the true character in others.

Zachary has two (2) friends at school.  He absolutely loves going to school to be with these boys.  They play and even when Zachary runs slower, they wait for him, help him and are kind.  When we are walking home from school, Zachary and his friends are often waving to each other and planning to see each other the next day.  Zachary also has a great friend with a boy from church.  This young man came over during the summer and spent time with Zachary playing video games.  They were able to keep each other company, allowing Zachary time to recover.  This little guy said to me, “I don’t care what Zachary looks like or how he walks.  He’s a cool friend.”

You may be feeling bad that Zachary doesn’t have a best friend, but he does.  He has a few.  His no. 1 bestie:  his dad.  Those two are amazing to watch together.  Scott serves his sweet son and the love is bountiful.  His no. 2: his little sister Faith.  Faith is his biggest advocate at school and can often be found defending her brother to others.  Yes, they fight, but the love between these two is incredible.

While Zachary doesn’t have a large circle of friends, he does know this: his friends are real. They are genuine.  They are his biggest cheerleaders.  It made me stop and reflect upon my own relationships with people.  Am I friends with people who are fake? Who are only talk? or people who love me regardless of whether I’ve gained 10 lbs. or lost 10 lbs.? Am I being a genuine friend or am I one who gives lip service? How can I be someone’s cheerleader and make their world better?

Lesson learned:  always, always be genuine.  Surround yourself with others who are genuine.

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“We’ll be Forever Friends won’t we Pooh?” asked Piglet.

“Even longer,” answered Pooh.

picture from wondersofdisney.yolasite.com

 

 

Disability doesn’t define us

This week, Scott and I have been focused on hiking more and getting our kids more active.  We love to go hiking in Griffith Park.  Not only is the scenery incredible, but the trails are challenging.

When we first started going hiking, we knew that Zachary would have some difficulties with hiking.  We took it slow because we always wanted to include him and make him feel part of the group.  After seeing him struggle, my dearest friend Paula (my kids refer to her as Aunt Paula), found him a stick and spent countless hours sanding and staining it for Zachary.  Zachary loves his hiking stick and uses it to help pull him up the mountain.

Thursday we went hiking.  We set on our course and our group had decided we would hike up to what is known as Bee Rock.  This is a 3.5 mile hike and it was the first time the kids had done a hike like this.  About 3/4 of the way up the mountain, I noticed Zachary was starting to struggle.  He was upset.  After not being able to go out on the edge of the rock because I was afraid he would slip and hurt himself, I pulled him back from the rest of the group to ask what was wrong.

His response was immediate. “I’m different than everybody else.  I’ll never be able to do what you do.  I hate hiking.”  I stopped for a moment to collect my thoughts. The first thing that came to mind was that our disabilities don’t define us.  I told Zachary that he wasn’t defined as a kid with birth defects or disabilities; he is Zachary.  He could be Zachary who decided to stop hiking because it was tough or because it got hard. He could stop walking, give up and be unhappy, or he could choose to be Zachary who was tough, who fought against all the odds the world gave him, and who would come out a strong warrior because of everything he had been through.  Zachary had a decision to make.

As Zachary was thinking about what we talked about, I went and took a rock from the trail.  I explained to Zachary that the rock by itself is small and insignificant.  We can drive over it, kick it, and throw it back to the mountain, but if you put rocks together, you form mountains.  Mountains are strong, immovable, and withstand numerous storms.  While Zachary may be the rock, together with his dad and I, his doctors, his sisters, his friends – we are the mountain.

Putting the rock in his pocket, he looked up at me with tears in his eyes.  Scott explained to Zachary about being a warrior.  While Scott has had to endure many hardships in life, he has grown stronger because of those trials.  We have gone stronger because of our experiences with Zachary.  Not saying much, we headed back down the hill to finish our hike.

This morning as we were headed to school, Zachary looked at his rock and said, “Mom, I’m a mountain.”

I have learned so much through this entire experience with Zachary but the greatest lesson I’ve learned recently has been that we can not allow our disabilities to define us.  Zachary will continue to hike, no matter how hard, because he is a warrior.  Zachary will continue to endure countless surgeries because he is a warrior.  That is how Zachary wants to be defined, not as disabled.  He is a warrior.

Third Lesson: Sacrifice

Parenthood is never easy.  Ask anyone who has diligently given of themselves in the role of mother or father and they will probably say it’s the hardest thing they’ve ever done. Part of being a parent is to sacrifice for your children.  Parents sacrifice their time, money, energy, resources. While it is the hardest thing I’ve ever done, it is the best thing I’ve ever done.

I want to tell you a little bit of our story because one of the greatest lessons I learned was about sacrifice.

About three and a half years ago, it was a usual night.  Zachary and Faith were chasing the dogs around the house and they were playing and laughing.  We had a multi-level house so you walk up three steps to go to the kitchen and dining room and then down three stairs into the family room.  Zachary is very unsteady on his feet and while running, he fell against the stairs.  He took out a huge chunk of his knee.  At the same time, my husband and I looked at each other and said, “it’s time to move and get him better medical care.”

For the next few months, my husband and I discussed everything that would be necessary for us to move from Las Vegas to California.  We were living in a 4,000 square foot home with a swimming pool, five rooms, 3 bathrooms, huge kitchen.  We both had really great jobs teaching and my husband had been teaching for 19 years.  He had seniority at the school district and was not in fear of losing his job if there were any district cut-backs.

When Scott and I made the decision to move our family to Southern California, we knew that we were walking away from great jobs, a beautiful home, stability and comfort we had made in Las Vegas, and our family and friends.  It was a lot to walk away from, but the lesson I learned from all of this was that it wasn’t really a sacrifice.  When it’s for someone you love, it’s not a sacrifice.

While we gave up a lot leaving Las Vegas, we’ve gained so much from being in Southern California.  My husband has a great job teaching and he recently wrote a historical novel which has been published. I am no longer teaching but have found my true passion in real estate. None of that matters more than the fact that we were able to save my son’s feet. Had we not moved down here, we would have eventually had to amputate Zachary’s legs below the knees.

I’ve learned that truly loving someone means doing whatever it takes to ensure that they are happy and healthy.  Being a mother is one of the greatest responsibilities I’ve ever had in my life.  I would give up everything, including my own life if necessary, for my children. I don’t consider this a sacrifice, it’s what I call being a mother.

I have grown so much from our move to Southern California.  I have truly found who I want to be and who I was meant to be.  If I hadn’t made the “sacrifice” to move here for my son’s medical care, I wouldn’t have found me.  It hasn’t been a sacrifice at all.  I found myself and I’m truly grateful to my son for giving me that.

motherhood-quote23

 

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