A Match Made in Heaven
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