As my husband and I prepared for the new year, we had several conversations about our plans for 2015. We knew this year would be a big year for us because I will celebrate my 50th birthday and we will also celebrate our 30th Wedding Anniversary! It’s a funny thing how the years creep up so quickly! It wasn’t that long ago that we said I do and heard the song “We’ve Only Just Begun” at our wedding and here we are ready to celebrate 30 years of marriage, which is a total gift from God, because without him we would be another statistic!
Not only will we celebrate the above mentioned milestones, but we are also preparing for my husband’s retirement slated for June 26, 2016. My husband, Rudy, has been a firefighter for the city of Los Angeles for the last 32 years and has been at every high-profile event including the Rodney King Riots, Malibu Fires, floods, Earthquakes, First Interstate Building High-rise fire and the list goes on. He has had several injuries requiring five different surgeries due to work related incidents. As a result of his injuries he has been in constant knee and back pain and we just found out today that he will probably need knee replacement surgery and another surgery on his foot – that will bring him home starting tomorrow! We hope he will be able to return to work in a year to finish out his last six months on the job, but it is pretty likely that today is his last day on the job!
It is so funny how things can change from one day to the next! We make our plans to the best of our ability, but only God truly knows what the future holds. My prayer is that my husband will be able to walk again before my 50th because we have an exciting cruise planned – a first for the both of us. We are both really grateful that Rudy reached his goal of paying off all of our debt at the end of 2014, so just in case Rudy is unable to return to duty in the next 16 months we will be financially ready for retirement. There are still so many decisions we have to make including whether or not to sell our home of 23 years. We have a pretty big house with a pool and now that it is 23 years old there are several maintenance issues that need to be done and the upkeep on the house is pretty constant. Rudy would like to purchase a condo and downsize so that we would be free to travel and not worry about the expense of maintaining such a large home.
It will definitely be an adjustment to have my husband home all the time, I’m so use to him being gone, but it’s also very exciting to see what our new life will be like once he’s past the recovery stages with his surgeries. We will miss our fire family, but we also know we will see them off duty! These guys are truly heroes in every sense of the word! They are fearless and give everything they’ve got to save lives and property! They are truly an elite group and I’m privileged to have shared my life with such a great man.
HOPE for SMA
SMA children truly have a touch of Heaven in their lives! They go through so much, yet they always have a smile on their face and truly radiate JOY and inspire everyone who comes in contact with them. They are born seemingly healthy at birth and their parents take them home and begin their journey of loving, nurturing and raising their precious babies. SMA symptoms usually don’t manifest until three to four months of age so most parents are taken off guard when their baby begins to get weaker instead of stronger. For a list of SMA symptoms and more on SMA please see earlier blog posts, but for now I want to talk about the amazing SMA Mothers out there in the world!
A Match Made In Heaven
I have watched not only my own daughter, Jessica, but many other wonderful SMA Mothers love and care for their children in superhero fashion! From one day to the next these very special women become nurses, doctors, respiratory therapists, social workers, insurance agents and medical supply specialists! They learn how to operate different types of medical equipment overnight to treat a disease that they just heard about for the first time in their lives. Their supernatural instinct and newly discovered methods of caring for their children save these precious souls every waking hour of each day!
I have personally witnessed these modern day heroes in action. I have watched them stare death in the face and go to work on their children using pulse-ox, suction machines, cough assists, oxygen, trach changes and ventilators to bring their child back to baseline. I have watched how these amazing women lovingly and willingly sacrifice the ordinary and simple things of life that most of us take for granted, like being able to sleep through the night because they administer treatments around the clock to ensure their child will thrive as much as possible. I have watched how the decor of our SMA homes are decorated not with the latest trends, but resemble intensive care units with supplies, medical equipment and specialized shelving and carts to accommodate equipment not to mention the fact that homes are now equipped with handicapped accessible ramps and our cars are now handicapped accessible vans. SMA children are truly born to amazing families that will do whatever it takes to nurture, love and care for them. The bond between SMA children and their mother is beyond description, but truly a match made in Heaven. Just one smile, one gaze into the eyes of their children somehow fuels these mothers’ strength and they continue the journey with HOPE, LOVE and INSPIRATION.
I have also witnessed how some of these amazing mothers’ have had to face every parent’s worse nightmare and give their beloved child back to Heaven. I have watched them walk the grief journey and be able to get through it with the thought that their child is now playing in the Heavens and in a perfect place where SMA is not allowed. They are wounded deeply and carry a pain that is only familiar to those that have gone through the same experience. They find comfort in talking to and encouraging each other and in keeping the memory of their child alive here on earth while their child is living in Heaven.
If you know an SMA or angel mom, please take a few minutes to let them know that you are thinking of them, perhaps send a little something to brighten their day as the journey isn’t quite as long with good company!
HOPE for SMA
You came into our lives and our hearts on January 18, 2009 at 2:10a.m. You were born in the city of Irvine, CA after an intense 13 hours of labor and delivery. It was love at first sight; we knew you were a special gift from God, but what we didn’t know was that you would transform our lives and that you would teach us more in the eleven months you were with us than any other person could teach in a lifetime.
Hannah, you were beautiful in so many ways. You were a champion, a soul of valor and truly our little hero. You were an over-comer! You radiated Joy and reflected the Master’s heart. You had a gentle quiet spirit and a gaze in your eyes that pierced our soul. You made us find strength within ourselves that we didn’t even now existed and you had a connection to Heaven that was evident on a daily basis. You would track Angels as we could see their reflection in your eyes.
You loved to watch Elmo’s World and we would often hear you burst out in laughter at Mr. Noodle! You enjoyed Sesame Street and Barney at all hours of the day and night – you were a night owl just like your mommy! You loved books! As we would get a book from your book bin you would immediately raise your eyebrow and wait for us to start reading to you, you loved to turn the pages yourself. You enjoyed balloons and paper…the crinklier the paper the better – even on your last night on earth the doctors covered a section of our tummy with surgical paper and there you were tapping and playing with it. You truly were an angel among us. Hannah your gentle touch is something we will always cherish! You loved us as much as we loved you; you had a unique way of making each one of us feel that we were your favorite. What JOY you brought to us! You had such a special love and soul connection with your mommy! How you adored Jessica – the center of your world! Although you were hospitalized on five separate occasions in your short life, even there you had every comfort of home because we all checked into the hospital with you! We danced, sang and entertained you day after day and enjoyed every second of it!
You were a happy baby and we have peace knowing that we did everything humanly and spiritually possible to make your life as comfortable, fun and meaningful as it could be. By the Grace of God, you were never alone as one of us was always with you. We will forever be grateful for every moment we spent with you! We miss our beautiful baby and feel a void and emptiness in our home, but we know that we will see you again. If we could design a perfect future for you it would have all the luxuries and beauty of Heaven…What better place for an Angel.
With All our Love,
I have loved deeply in my life. The Love of Christ in my life is the deepest love I have experienced. I accepted Christ at twelve years of age. As a little girl our family would take long road trips to visit family and my parents would always put on Christian Music during our trips. I remember sitting in the back seat of our little Toyota with tears rolling down my cheeks because I was so moved by the music and the lyrics. I remember feeling embarrassed and hoping that no one would see the tears. It was there that my relationship with Christ began. Through the years the love for my Father in Heaven has grown deeper roots which have allowed me to love my family and friends with the love that I have received from Heaven.
My husband and I will be married for 30 years this December. We have weathered many storms in life that would take most marriages out; but, because of our love and commitment toward each other our marriage is stronger than it has ever been. I believe one day I’ll be able to write a book on “Enduring Love Through the Storms of Life.”
Rudy and I have two beautiful daughters who are young women now. The love for our children has taught us all about unconditional love. Our family isn’t perfect by any means, we have had a lot of issues to deal with, but one thing that is strong and we can always come back to is the unconditional love we have for each other. I credit my children for my deep prayer life because they keep me on my knees.
Even with all the love I shared about above, still another LOVE came into our home. Our granddaughter Hannah-Rose taught us about love in the purest form. She was such a special gift from Heaven, she was perfect in every way despite the fact that she passed away at 11 months of age from a disease we never heard of. You can read about that in my previous blog posts. But, what I want to share about this PURE LOVE that Hannah taught us is that even though she is no longer on this earth – our love for her still grows. It is such an amazing thing. I didn’t know love was alive! It keeps growing even though the person you love may have gone to heaven. We can’t wait to see our Hannah again, but until then we are so grateful to God for giving us the gift of LOVE!
Happy Valentines Day
SMA Carrier Testing
Spinal Muscular Atrophy or SMA is the #1 genetic killer of infants under the age of two years old. 1 in 40 people unknowingly carry the gene responsible for SMA. SMA affects all races and both genders.
Because SMA is genetic, that means it is an inherited disease. We have discovered that the gene came down from my grandmother’s side of the family. Hannah-Rose was 4 generations away from my grandmother and was affected with this disease. There are many other “carriers” in our family and those carriers need to keep an eye on future generations to ensure that this disease does not take another life in our family. How can we protect future generations? By getting tested to find out if you are an SMA Carrier. SMA Carrier Testing is a blood test that most insurances cover.
BOTH PARENTS HAVE TO BE CARRIERS IN ORDER FOR A CHILD TO HAVE SMA
If you are a confirmed SMA Carrier all that means is that you should have your partner tested as well. If your partner also comes back positive as an SMA Carrier then you have a 1 in 4 chance of having a baby affected with SMA, a 50% chance that your baby will be a carrier, and a 1 in 4 chance of nothing happening. All the carriers have a duty to alert their children and future generations of SMA, because a carrier can pass the gene onto their child even if the partner is not a carrier.
If you are related to an SMA Carrier in anyway and you are expecting a child:
Please ask your OBGYN for SMA Carrier Screening. Let them know that SMA runs in your family. They will take blood and send to a lab. It takes several weeks to get results back. If positive, then test spouse. If both parents are positive for SMA Carriers then test child envitro. There is a test that can be on the baby called CVS: Chorionic villus sampling (CVS) is a prenatal test that detects chromosomal abnormalities such as Down syndrome, as well as a host of other genetic disorders. The doctor takes cells from tiny fingerlike projections on the placenta called the chorionic villi and sends them to a lab for genetic analysis.
The reason why you need to know if you are having an SMA Baby is to prepare for the baby’s arrival. Your baby will have a better chance of surviving IF YOU ARE PREPARED AHEAD OF TIME. To prepare ahead of time will save your baby’s life. Having the right doctors in place, familiarizing yourself with available insurance services and gathering the correct medical equipment for your baby will allow your baby the best chance to thrive.
Our family (the Prendiz) paid a heavy price for not knowing about SMA. We believe that our Hannah’s Story is saving lives because everywhere we go, every opportunity we get we alert humanity about this baby killer disease. Hannah’s life was not in vein, her legacy continues through her family and HOPE for SMA, a 501 (c) 3 Nonprofit Charity that was started in her memory and Exists to Find, Get & Give HOPE to SMA Families. Please visit hopeforsma.org for more information.
HOPE for SMA