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.