This is the second post in a series sharing our experience with our son Topher and our journey with Down syndrome.
I’d like you to meet the Lewis family. There is me, Tabitha, Marybeth (15), Topher (10), and Gracie (9).
We are a normal family.
Well…
Sort of…
As normal as any family of 5 I suppose.
The Birth
Our story goes like this. We were a family of 3 when Topher came along. Topher’s older sister (Marybeth) was 4 when he was born. Tabitha and I wanted to have kids closer together, but we were coming off of 2 miscarriages.
Tab’s pregnancy was very normal and otherwise uneventful. None of our tests showed any abnormalities. Topher’s femur measured a little shorter than normal, but hey, it’s not like his Dad has been dunking any basketballs lately! We, like most parents, were expecting a happy, healthy baby.
When the day arrived, we went to the hospital and started our pre-game routine for all Lewis baby deliveries: the whole family gathering, Tab on a Pitocin drip, me downing an entire Pepperoni Lover’s Pizza from Pizza Hut. I feel for women who struggle with labor. My wife has never gone through a “hard” labor (easy for me to say, right?) She was made for birthing babies. 3 children and she has pushed a total of 9 or 10 times – total! We breezed through the delivery.
He was here!
1st night, no issues.
2nd day, no issues.
We would have gone home on day 2, but we were allowed to stay an extra day because Topher was having a little difficulty breast feeding and the lactation specialist couldn’t make it by the room. That would turn out to be a very good thing!
During the 2nd night after he was born, Topher entered into heavy breathing distress in our room and his 02 saturation dropped dangerously low. The nurses at first brought him oxygen, then ultimately took him to the nurses station to keep a closer eye on him. It seemed like time stopped.
Our Diagnosis
The next morning, red eyed and weary, my wife and I waited nervously for Topher’s pediatrician to make his way to us. When he proceeded to tell us that some of the hospital staff (though he did not agree) had noticed some subtle features of Down syndrome, my wife and I just stared blankly. We then informed him that our son was not the Down syndrome child, but the one with the breathing difficulty.
That’s when he told us about Topher’s heart condition.
I don’t remember many of the details over the next few days. I do remember that because of the questionable and half hearted way his doctor approached the diagnosis, we were dealing with a situation where we thought there was a 60% chance our son did not have Down’s. We were in some kind of limbo with our son in the NICU for a week.
That is, until we met with his cardiologist. Dr. Ben Horne was going over the details of Topher’s heart defect and made some kind of comment about kids with Down’s. I was quick to point out that we didn’t know for sure that was his diagnosis – we were waiting on his genetic testing to come back. Dr. Horne looked me squarely in the eyes, put his hand on my shoulder, and said ‘Your son has Down syndrome. You need to accept that so we can focus on his heart condition.’
Bam!
There it was. Like a hand grenade dropped in my soul!
Different Struggles
My wife and I had very different struggles in those early days. She had a harder time with his heart condition but accepted his genetic diagnosis almost immediately. I was less concerned about his heart because they knew how to fix that and even said if you had to pick a heart defect, this would be the one you would want to have.
But I was devastated about his Down’s.
I am embarrassed and angered by some of the thoughts I had during that time…but I had them. I mourned the death of an idea I had – a dream for what my son would grow up to be and do.
On top of that, I knew absolutely nothing about Down’s. The total sum of my knowledge on the subject wouldn’t have filled a thimble.
Man, were we in for some surprises!
Heart Surgery
At 4 month old, Topher had a procedure at MUSC to repair an atrial ventricular canal defect in his heart. Instead of 4 separate chambers in his heart, he essentially had one. This caused fluid to back up in his lungs and cause congestive heart failure.
In the months leading up to this, we spent another 30 days in the hospital when Topher contracted pneumonia. OK, that was pretty scary – heart and lung issue complicated by an illness that attacks the lungs?? The nurses and hospital staff were AMAZING during this time! We actually moved into the hospital into one of the NICU hotel rooms they have in limited supply. What a blessing!
When we went down to Charleston for the heart surgery, we were told to prepare for 4-6 weeks. This was the first time we caught a glimpse of what life with Topher was going to be like.
The entire round trip, surgery, and recovery – driveway to driveway – took 6 days! The top pediatric cardiologist in the nation at the time said he had never seen a recovery like that!
As surgeons and physicians were performing heart surgery on my son, the Great Physician was doing some work of His own in our hearts.
The Classroom of the Divine
There is really nothing that can prepare you to see your 16 week old child with tubes protruding everywhere, breathing on a respirator, bloated from surgical anesthesia.
What I know is this. Just as Topher learned the comfort of his Daddy’s grip in the recovery room, I was learning to trust and cling tightly to my heavenly Dad.
You see, Tabitha and I have learned many, many things over the course of our journey with Topher – our whole family has!
What’s our greatest takeaway? It would have to be that God meant it in His word when He said that ALL THINGS (good things, bad things, in-between things, things we don’t understand) work together FOR GOOD (the best possible outcome for His glory and our ultimate benefit) for His children (Romans 8:28).
Even when we can’t see what He’s doing. In the times we don’t know how it will end up. Especially when it seems like chaos is winning. He’s still in control! We need only look to the cross to know that God reigns even when it seems like darkness abounds.
Some of the deepest, purest theology is contained in the words of the little children’s prayer many of us recited when we were young: God is great. God is good. (Borrowed from a book titled Sun Stand Still by Steven Furtick).
He is great. All-powerful. All-knowing. Sovereign. Reigning. At all times. In all places. In every situation. There is no time ever that what is taking place is not under His purview and oversight.
He is so good. Holy. Righteous. Loving. Compassionate. Just. Perfectly complete in all of these attributes. Not defined by my definition of these words but defining Himself the meaning of perfect love and righteousness.
This is true for me. This is true for my family. This is true for you.
I hope this brings you some comfort in whatever situation you are facing today. If you belong to Him, all things are ultimately working together for good.
If you don’t belong to Him, perhaps today is the day to surrender your life, receive His grace, and become a fully committed follower of Jesus Christ.
