Transformed Dreams!

Here comes the second of my blogs. I tried to make it shorter, but I just don't know how to write a few words. Again, forgive my English, this isn’t my book yet. I promise I’ll have that one proofed before release. J

I want to start out with this wonderful poem:

Welcome To Holland

©1987 by Emily Perl Kingsley. All rights reserved

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The Gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy.

But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say

"Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

This is not my poem, but I could have very well written it. When I got pregnant for the second time and we knew it would be a boy, we were thrilled with the idea. My husband loves all sports. I like some sports. In our head we could see this baby boy playing a sport or two, any sport.

Before turning one, and before he was diagnosed, Baby M had a wonderful throw. He was targeted and strong, so I remember thinking “Baseball it is”. Soon after that we would know the devastating news about his disease. One of the very first dreams that faded away from our minds was our desire to see him playing baseball.

To any parent that is a big deal. When a new child is born, you wonder throughout his infancy and preschool years what he would grow to enjoy. You build castles in your mind and secretly gamble at all the different options you think your child will flirt with until discovering his passion. You enjoy this internal game along the way.

But when you are confronted with the sad truth that your child might not fulfill any of your dreams, your world changes in the blink of an eye. What do you dream of then? What is left for your child?

Well, as I see it now, I had two options: 1) I could sink in the sadness of the situation, become depressed, angry, sick and lonely, or; 2) I could decide to leave the misery aside and enjoy the new dream that God had about my son.

Well, guess which one I chose….

Yes, I chose the first option. For years I struggled with the fact that my son would not be able to play a sport like all his playmates. As a mother it was very difficult to undo my dreams. He would not play baseball, or basketball or soccer… or walk, or run, or climb a tree. I was waken up abruptly from a dream that was unreal and uncertain.

But slowly and after much spiritual counseling and searching of God I started gearing toward option #2.

When M was 5 we discovered something new, almost unheard of at the time. We discovered Power Soccer. Power Soccer is a rising sport for people on motorized wheelchairs. What started out as a local alternate way of entertainment for people with disabilities is now an International sport played much like any other sport. My son LOVED IT.

Soon after that we found that M was able to ride his chair really fast (6 mph) uneventfully and spin kick sharply, and think on his “feet” instantly.  Today M is one of the best players nationwide (at least to my eyes!), plays on one of the best teams in the US within his conference,  and dreams on being on Team USA someday and bring home the World Cup. I know, my gut tells me, he will.

We also learned to read M’s emotions by the way he wheeled around. A really fast, unstoppable ride meant happiness. A sluggish, dragged ride meant frustration or sadness.  Thankfully not many of those last ones were very frequent.

We discovered that M has an amazing capacity of memorizing stuff. Once he memorized, word by word, a 2-page long poem in 20 minutes. He could memorize his AWANA verses only after the second time of your reading them to him. He glances through his test materials once or twice and he comes back with grades of 100% (or more if bonus questions are included).

Best of all, M has a special gift of making people love him the moment they meet him.  He has come across many people in his life and not one has ever taken for granted ever meeting him.  I certainly don’t have that gift, but wish I did. However, this gift of him has enabled us to make lifelong friendship with wonderful families and people that we wouldn’t have had otherwise.

What did I learned from this new life I hadn’t plan for? I learned that a disability can bring a new perspective to things that you wouldn’t normally consider. You definitely learn to slow down and savor every minute of your day and your experiences. Preparing M for a Power Soccer game is a beautiful process. Searching in the closet for the right color of Jersey, uniform sweatpants, shoes, makes you expect the game with anticipation and excitement.

There is a high level of competition at Power Soccer, but in a “healthy” way. You want your child’s team to win, but you also want the other team to win. I know; awkward. Don’t get me wrong, I do like when my child’s team brings back the big trophy, but it is as exciting to see the other team, with people with similar disabilities, take home the prize, because you know how hard they worked to get to that place.

Finally, I learned that even with limitations, life can be enjoyed to the maximum when you focus on the things you CAN do rather than the things you cannot do. M has also understood this because he knows that God made him wonderfully. Even before he was born, God knew what all his limitations would be, and yet purposed him with a very special plan on this life.

Yes, we did not land in Paris as we had planned, but we landed in Holland where the smell of the tulips and the sight of the windmills have a deeper long-lasting, mind-resetting, life-changing effect that I would not change for anything else in the world.

“For you created my inmost being; you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made; your works are wonderful,
   I know that full well.
My frame was not hidden from you when I was made in the secret place,
   when I was woven together in the depths of the earth.
Your eyes saw my unformed body; all the days ordained for me 

were written in your book before one of them came to be.
How precious to me are your thoughts, God!
   How vast is the sum of them!
Were I to count them, they would outnumber the grains of sand—
   when I awake, I am still with you.”

Psalm 139: 13-18

Let me introduce myself and my family!

Hi, my name is Jennise Rodriguez. I'm not new at blogging, but I am new at this kind of blogging. I just want to open my heart to tell you about our family journey and life experiences. I hope to witness of how God has worked and continues working in us.

I will be opening my heart to very intimate things, but if I don't I will explode. I don't mean to make you sad, but I can't guarantee it won't happen. However, that is not my ultimate goal. What I desire and intend is to guide you to discover and experience God in your own life.

I have a calling to write our family journey in a book, but quite honestly I find it extremely overwhelming. I have so far written maybe one chapter and don't know where to go from there. I am blogging hoping that I can get my thoughts a little bit more organized and hopefully collect them into what would be my book someday.

English is my second language, and I don't have anyone proofing my writing so, please bear with me and forgive me if I make mistakes. Just ignore them! :)

I have a wonderful husband, Albert. We have been married for 17 1/2 yrs. He is a wonderful man. Our marriage has not been perfect, we have had to walk some rocky roads, but all in all, I am a very blessed woman. He was my high school sweeet heart and still rocks my world. I love you Papi.

Three years into our marriage we had our first child, a girl, Baby J. J is a very special girl. She is caring, cautious, loving and fearful of God. She is very involved at church with the children ministry and is learning to play the guitar to be part of the worship team. J is also a JV cheerleader and is in her High School choir.

A year after J, Baby M came along. M is just a sweet young man. M has always been the kind that loves to please you (well used to, now he's a teenager!). M was a perfect baby, to our eyes, slept through the night at 3 months of age, was great to take care of, and made us very proud, as well as J.

But M came to change our lives in a way that we could not, in our wildest dreams, ever imagine. After M turned 1, we started noticing certain physical traits that were not normal. After raising our concerns to several doctors, M was diagnosed with a muscular disease called Mitochondrial Myopathy.

I have never heard of this disease before. Ignoring what it was I did my own research about it. My heart was ripped apart and split in multiple pieces. I learned that Mito would little by little consume my little boy's muscles until he would be become completely dependant on others to help him with daily tasks that we normally take for granted like brushing his own hair. Mito would also severely affect his health and well-being.

The research proved to be true. M eventually lost his ability to move on his own and became dependant on a wheelchair to take him to places. When M was 3 yrs old, he became very ill and after almost losing him we had to make the horrible decision of intubating him with a tracheostomy and a ventilator. That has been so far, the worst and most painful decision I have had to make in my life.

It has been almost 10 yrs since that tragic moment. M is still on a ventilator and on a wheelchair. He needs assistance with just about anything and needs to be accompanied 24 hrs a day. The farthest anyone can be from M is 10 seconds, due to his medical needs.

However, M is one of the happiest persons I've ever met. There has never been an occasion when I have heard M complain about his limitations or his life. M is tough and adaptable to most situations as long as he is demonstrated true affection and caring.

We learned to live a new life that we had not planned on. We had to change our goals for new goals and forgo of our plans for the future to live one day at a time and enjoy that day only.

J lived a wonderful childhood, but completely different to that of her friends. She played with dolls, teddy bears, and plate sets, but she also learned what a trach, a suction machine and a catherer were. J learned that weekly visits to the hospital or doctor offices were normal "field trips" for our family. J learned to see her environment as normal, even if just for our family. And she was okay with it.

After many years of emotional instability I was able to put all my fears and monsters away. I was at a point where I was able to lift my head and say I was okay with Mito in our family and we would do the best of it. We would have the most normal life that a family with Mito could have.

And just when we thought that we had fully adapted to a different life, about 11 years after M was born, God surprised us with another family addition, Baby G, another boy. The moment I knew I was pregnant was the moment all my monsters resurrected. I literally felt a stream of cold air take over my body. "What if this happens one more time?", I thought to myself.  However, I decided that I was being extremely ridiculous and that those thoughts shouldn't have place. It was time to rejoice because a new baby was being added to our family.

Exactly one year after Baby G was born, and after suspecting some abnormal traits, I heard the worst words a parent of a child with severe health issues can hear: "Your baby also has Mitochondrial Myopathy"...

Ok, give a sec until I recompose myself here. :'(

Baby G is now 2 yrs old and is showing almost the exact same traits that M had at that age. Baby G is quickly losing his ability to move around on his own and his muscles are wasting at a very rapid pace.

"Devastated" isn't even appropriate to describe one's feeling after these news. Once more my world crumbled up, only twice as fast this time. Double the confusion, double the uncertainty, unmeasurable sadness... There are simply no words at times to describe what one's heart can feel in this situation.

However,  for as many times as I have felt lost and hopeless are the many times that God has come to rescue me. His Grace has multiplied over this life of mine to continue walking in faith knowing that He has a plan that is perfect and that He has not missed any day or any episode of our lives.

The Word of God has become my fort. In it I find the refuge I need when I am most vulnerable. To hear God speak to my heart gives me enough strength to live one more day and stand whatever tribulation comes my way because I know He is with me. Thanks to His word I can be content and have hope.

"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13.

It is possible to have joy and peace regardless your circumstances but only after knowing where your life lies upon. Only the power of the Holy Spirit can give you that hope, that joy and that peace necessary to face tribulations in your life.

It still hurts, DEEPLY, but having the hope that God is in control makes it hurt a little bit less.

I will continue blogging to let you know where I have been and am, emotionally, and how God continually helps me to keep my eyes fixed upon Him. I hope you can continue following my blogs and that if in anyway these might help you, to God be the glory. I pray that if you are going through a difficult situation at this time that you will find in Him the Hope that you need to continue moving forward.