On Sunday, my son achieves a huge milestone. He will be ten years old. Ten is a big birthday for any child. For a child with a diagnosis defined as “death bringing”, it takes on new meaning. His life is the opposite of his diagnosis; full of life. He is living up to his name, Samuel which means God has heard. Indeed, He has.
As I look back on the last decade, many memories come to mind. Here are a few noteworthy events showing a miracle in the making:
On August 2, 2005, I was 35 weeks pregnant on bed rest in the hosptial. A
scheduled C-section delivered my son to the world. He was thrust into the Neonatal Intensive Care unit which would be his home for six weeks. He would receive his tracheostomy and g-tube during the stay.
In September, he transferred to the Pediatric Intensive Care Unit with a private room and lots of attention.
2006 greeted us with a surprise house fire which displaced us for eight months from our home. My son’s homecoming in February, six months after his birth, was in a rental house. We were overjoyed to have him home and had plenty of help with 24 hour nursing care. (We would eventually have nursing only eight hours a week.)
2007: Samuel experienced his first sleep study, the first step to weaning him off the ventilator. In November, we brought Samuel to church for the first time. It becomes one of his favorite places to go.
In August of 2008, Samuel surprised us by thriving off the ventilator for 35 minutes. A 2nd sleep study in September brings him one step closer to ventilator independence.
In January of 2009, we were blessed to experience our first family vacation. A gift from the Make-A-Wish foundation, we spent a week in our guest villa at Give Kids The World in Orlando visiting several theme parks. This training ground provided us the catalyst we needed to learn how to travel with emergency equipment and to show our son to a whole new world outside doctor appointments.
Samuel’s story was broadcast to a larger audience by the Catholic News Agency. www.catholicnewsagency.com/new.php?n=14845
On March 4, 2009, Samuel surprises us all by being off the ventilator for two and half hours. Another hint that he will one day shed the LTV950 ventilator. Samuel also shows a streak of independence as he crawls around the house trailing his ventilator behind him. What a delight to see him strut his commando crawl.
In July 2009, we experienced a shock. Samuel passed out and had to be rushed to the emergency room. In a few short hours after being admitted he was able to go home. We were reminded that our son is still a fragile child. I hugged him extra tight that night.
With the July incident still on our minds, we choose to go to the Florida Aquarium to show our little man a peak at the underwater world.
Samuel also met someone famous in the Tampa Bay Area. Mike Alstott is a former Tampa Bay Buccanneer who we met at a charity golf classic for United Healthcare. He’s the only person I give the okay to call Samuel, “Sam, the man.”
In 2010, Samuel gets adventurous by learning how to undo the Velcro holding his trach in. A sly smile spreads across his face as he gauges my response. I don’t show my shock and dismay as I secure the Velcro back in place. Thankfully, he doesn’t make this activity a habit to my delight.
In February of 2011, Samuel, once again surprises us. He is off the ventilator for a record ten hours. Little did we know then that our second miracle of Samuel being off his ventilator completely would become a reality.
September 24, 2011, he sits up on his mat. Show picture.
Just weeks after Samuel’s eighth birthday, August 2012, he is off the ventilator during the day and only using it three nights a week. The impossible will soon be possible.
As we watch Samuel excel in his ventilator trials, the everyday stuff of childhood still happens. On Halloween 2012, he loses his first tooth.
In June of 2013, a second miracle is realized as we are able to turn off Samuel’s ventilator. No more swooshing sounds of the ventilator methodically delivering breaths to my sweet son. No tether attaching him to a machine weighing more than himself. No beeping sounds or alarms from the LTV950. Instead, the machine is silent as my son finds a new kind of independence we thought he’d never experience.
With the days of the ventilator behind us, we plan a dream vacation. We go on a dry run driving to Tennessee and North Carolina in June of 2014.
With the success of this trip, we set our sights on Niagara Falls, Ontario, Canada. After we obtain passports, we venture out on our journey in July. Bringing Samuel to Niagara is a surreal experience reminding me of his first trip with Make-A-Wish. We’ve come so far, both in miles and in time.
With the success of two trips in 2014, we explore more of the world with Samuel taking a trip to Cape Cod in June 2015. Over the many miles we have driven, we’ve come to learn our little boy loves car rides. So much, he likes a car ride on a daily basis. Who knew when we started this journey with our little miracle man that we’d be blessed to show him the world. From being transported by ambulance to doctor’s visits, to visiting one of the seven natural wonders of the world.
To all of Samuel’s fans and prayer partners over the years, I can’t thank you enough. Each comment and prayer has been gratefully received. Thank God for His answers.
What will the next decade bring? Time will tell. I will continue to blog, sharing our journey’s as you follow our miracle man.