MS my Hero and A Mother's Love


Last week my 18 year old son was officially diagnosed with Multiple Sclerosis.

Writing has always been therapy for me but there are some experiences that are not easy for me to talk about or to write about. This is one of them! However, the load that I am carrying is heavy and I want to drop it in the hands of something greater than myself that can take it over.

After a celebrated high school homecoming game last year, I brought Joshua to the ER. He was experiencing right side numbness and tingling in his arm and leg. An MRI revealed lesions in his brain. He went though a mirage of tests and was initially diagnosed with an acute autoimmune disorder, ADEM.

November 2, 2015 Yesterday I told him I laid hands on him while he was sleeping. I told him he gasped for air when I was done. He laughed and told me I was a witch! I smiled and said,
"Watch the magic....and open your heart." He said, "My heart is open."














In truth, I never felt comfortable with that diagnosis, but I went with along with it. His treatment consisted of high dose intravenous steroids to reduce inflammation, and on his own, he also adopted a more mindful approach to eating which included cutting meat and dairy out of his diet. He got worse before he got better but after a month his symptoms started to improve and eventually they went away.

He had another follow-up visit to his neurologist in March, and after a repeat MRI we celebrated with what appeared to be an unexplainable reversal of symptoms. Some of the lesions were no longer visible and many had decreased in size. Together we ruled out the need for any further testing or other diagnosis outside of the acute onset. We looked forward to his graduation!

June came and graduation happened! To know our story is to understand the exhilarating feeling that came over me watching both of my children graduate- especially Joshua. He hated school and fought me and his father relentlessly even threatening to drop out months before graduation. That day was one of the best days of my life! We all graduated!

College was not in his immediate plan and I was fine with that! His twin sister, Sunshine, made a different choice. Her plans included college and we geared up for her transition. With my oldest son, now 25, and the twins at 18, I was resolved in releasing myself of parental responsibilities and looked forward to embracing a new chapter in this wonderful life knowing that I had completed my duty to see them through high school. Those were my plans!

A few weeks ago, the same week that Sunshine was moving in to college, Joshua was admitted to the hospital again. This time he was experiencing right side facial numbness and left side pain and tingling in his leg. Another MRI revealed more lesions on his brain and spinal column. I was blind sighted when the team of doctors came back with an MS diagnosis.

After another bout of intravenous treatments (3 days) and without any intervention or care with next steps we were sent home. Two days later I was moving his sister into her dorm room.


As a woman I have experienced many painful periods in my life. As a mother my first instincts are to protect my children. For me, there has been nothing more painful than the polarity of this experience and watching my child (and our family) experience challenges in life that I have no control over. It has silently ripped through me.

Joshua has been a gift faced with many challenges. A few years ago he was also diagnosed with Asperger's Disorder (Autism Spectrum Disorder). Brilliant and often emotionally disconnected, the other more personal variable in all of this is that my son does not believe in God.

To know me is to know how deeply connected I am to the spiritual world. My mission as clearly as I know it be is grounded in loving others. It is with this love and compassion that I serve my son- unconditionally! At all times, even when he gets under my skin, as teenagers often do, he is, just as he is, a perfect expression of the embodiment of God with the power to transform the lives of everyone he touches. He is transforming my life!

This has not been an easy pill to swallow but in digesting all of this I am being forced to examine my own landscape and beliefs and to clean my house of things and experiences that no longer serve me. I am grateful for the support that many of you have offered and continue to give. I am also grateful for the gift of writing that has helped me to lighten my load today. I celebrate the gifts and the walking instruments of healing that we each are to one another. I celebrate our children. They are gifts to the world. They are our heros and our sheros.
After his initial diagnosis with Asperger's, I celebrated Joshua on his 16th birthday by writing this:

From the Hebrew name, Yehoshu'a meaning "YAHWEH is salvation". Joshua was one of the twelve spies sent into Canaan by Moses, as told in the Old Testament. After Moses died Joshua succeeded him as leader of the Israelites.

Born January 11, 1998 weighing 4lbs 13 oz at 10:39am (26 minutes following the birth of his twin sister, Sunshine), Joshua Arturo Alvarez is the youngest of three born to the loving parents of Jose Francisco Alvarez Sr. and Shawn Marie Trimble- me.

Giving birth to twins was special enough but I knew Joshua was special when unlike his sister who chose the traditional route of birth through the vaginal canal, when Joshua's time came to enter the world, he turned around, went the other way, and chose a different route through a forced Caesarean birth. My hero!

Both were premature, but I knew he was special when unlike his sister who had to remain in the hospital, Joshua came home with me. We bonded for days and it was special. He was special. And unlike his sister who came home with the lungs of a great diva singer in the making demanding attention, Joshua was quiet. He could entertain himself. My hero!

He hardly spoke, and Sunshine who looked after him like he was her little brother would often try to speak for him. But at three years old, when she thought she knew what he wanted and she called it out, Joshua said, “Shut up!”. I knew he was special. My hero!

I used to call Joshua my warrior prince. He has always been a leader to me. He has had a gift for seeing things in a way that others don't. He also has a gift for saying things that will make your head spin. Not seeing eye to eye, I remember when he was younger, he told me, “You people...ya'll are all crazy.” I have always sensed his ability to get me to slow down and see things from a different perspective. Like walking in a garden, because of Joshua's presence in my life, I learned to stop and really smell the roses. I knew he was special. My hero!

He has been in an Individualized Education Program (IEP) from the time he was three years old and getting him through school has been a challenge to say the least. Without a label or diagnosis, he has just been learning different. He has shown me an educational system gone terribly wrong and how easily children and families can fall by the waste side being dependent on a system that is struggling in and of itself. Children and families need advocates! He has taught me that if you [I] don't fight for you [me], you [I] can't expect other people to do the work for you [me]. Being co-dependent is no longer an option! As his mother, the frustration of seeing my child struggling through life and school has been painful. Hearing him ask me over and over again, “When will they find out what's wrong with me?” or “Stop wasting your time with me.” or “Why do you care?” or “Why don't you give up mom?” God knows all the times that I thought about giving up, but Joshua has taught me the power of perseverance and the power in not giving up. My hero!

We have had certainly had our share of battles but he has also taught me the power in letting go. Last year he put on the brakes with, “I've had enough!” I have witnessed the courage in surrendering. I have witnessed his courage. I had already watched a year earlier as he dropped out of the Civil Air Patrol (CAP), a program that he loved but struggled with. I watched him choose to repeat a class that he struggled with and risk being taunted by his peers instead of going to summer school. I watched him drop out of driver's education days before he was eligible to get his permit by saying, “I'm not ready!” And though he wanted to drop out of high school – that was not an option- I watched as he chose instead to transition into a non-traditional classroom and course of study this past school year. Sunshine came home and told me that she heard other kids ask her, “Why is Joshua in that class? That class is for retards.” She didn't punch anybody and he didn't care what other people thought about him. They are both my heroes!

Through Joshua, I have witnessed the power of accepting what is and loving him/me/life unconditionally. I have witnessed his transition to happy. Last week, just shy of his 16th birthday, Joshua was formally diagnosed with Asperger's Disorder (Autism Spectrum Disorder). A part of me is angry that he wasn't diagnosed sooner but another part of me is happy. For I know the hell we've been through but we made it! It's funny that regardless of what the diagnosis is, Joshua says, “I don’t have any of that!” My hero!

Brilliant is this child- this young man- my son! And outside of the video games that he loves to play, Joshua, who loves history, politics, and perusing the internet for information, uses words that I don't know the meaning to sometimes. He told me last week that I could be a sage. I didn't understand him at first. I burn sage (all the time). I have been known to smoke sage. I love sage! But to be a sage? “What is a sage”, I asked him. I was completely embarrassed for not knowing the answer. He told me that a sage was a wise person- a spiritual leader. For me, it was more classic irony to see that the thing that we are looking for is right there- right there within us. We are the answer to our questions. A breath away...My hero!

Joshua wants to be a hero.

My dearest Joshua, look no further, you don't need to be a hero, YOU ARE A HERO!

With Love,
Mom




Popular Posts