Shaky Beginnings

This is Topher in a hospital bed at MUSC as he recovers from open heart surgery. This was our life in 2001. We spent a good portion of Topher’s first year in hospitals. Many of the people we met during those early months did not offer an encouraging prognosis. We were told (by others Down’s parents and some medical professionals) to expect this as the normal routine.

Now to be fair, we’ve had our share of scares…from pneumonia to staff infection to several choking episodes. His 1st grade teacher actually saved his life by performing the Heimlich when his airway was completely blocked by a Chick-fil-a biscuit (thank you Casey!)

For the first couple of years, we experienced a ton of medical concerns we haven’t had to walk through with our other 2 children.

When you’re a new parent, you really don’t know what the future will hold for your child. This is true for any child – and especially true when there is a disability with wide-ranging level of severity involved.

Thankful Hearts

The first year was really the only ‘abnormal’ year we encountered with Topher. Seriously.

By God’s grace, he is tremendously healthy! On top of that, he functions at a very high level for kids with his particular disability. We have met a multitude of families that face much greater challenges than we do with our son. And for that we are immeasurably grateful to God.

People laugh (or look at us strangely) when we say this: there are literally days that go by that we never even consider the fact that Topher has a disability. Seriously! We ‘know’ he does, but it just isn’t the ‘thing’ we think of when we look at him.

Only God Knows the Future

We don’t know what we’re facing in the future with Topher. Will he graduate high school on his own? Will he go on to college? Will he be able to perform adequately at a job? Is he going to be able to live on his own?

We see potential in him that he has yet to meet. He has so much more room to grow. Who knows what the picture will look like when he fully spreads his wings?

When we look at him today, it certainly looks like he has the potential and capacity to do even greater things than we could ever imagine! We know that God certainly can! Eph 3:20 says that God is ‘able to do far more abundantly than all we ask or think‘! That’s a lot!

Whatever Topher may go on to achieve, we only want him to reach his fullest potential in Christ.

Can any of us hope for more than that?

What is special anyway?

We have three children. They’re all special. We have an analytical personality, a strong willed child, and a child who needs more affirmation than others. They are creative, sassy, colorful, and very headstrong. Those are just our girls!

The point is, every child is unique. Every life is precious and special in that they were created by God for His purpose.

Just like Topher.

People balk when they hear Tabitha and I say this, but it’s true. We have, at times, had to remind ourselves that Topher has Down syndrome.

It’s not that he isn’t developmentally delayed. He is.

It’s not that we are in denial. We’re not.

And it’s not like we aren’t facing the challenge head on. We are.

It’s that we don’t treat or view him any differently than we do our other 2 children. He’s not ‘our son with Down syndrome‘ – he’s just…”Our Son“!

We motivate, teach, and discipline him like we do our other kids – in the way they learn and receive correction best.

The Unparalleled Beauty of Unique

We don’t think of Topher as special. We see him as unique. One of a kind. No other like him.

Each life is created by God and for God. I believe John Piper said ‘God is most satisfied in us when we are most satisfied in Him’ (or something like that). We do our best to teach our kids that their intrinsic value is not based on ability or talent. They possess the Imago Dei – they are the image bearers of God.

Not only are they created in the image of God, but He has a specific plan for each one of them…a plan already prepared that He has specifically equipped them to pursue.

‘For we are his workmanship, created in Christ Jesus for good works,which God prepared beforehand, that we should walk in them.‘ – Eph 2:10

When we embrace that truth, and release it through responding to the gospel, we find that we are all unique. We do our best to lead all of our children to pursue and fulfill that calling, based on their unique identity in Christ – not in an ability or a disability.

Topher is no exception.

Ok…so maybe he steals his sisters’ hearts…

But can you blame them?

Not a Special Club

The first thing Tabitha and I began to notice as we began our lives with Topher was this very interesting sub-culture that exists for children with any kind of disability. There are support groups, play groups, focus groups, groups for dads, groups for moms, groups for people with multiple disabilities, and so on…and so on. Basically, if you can think up a name for a special needs support group – there probably is one.

Now don’t get me wrong, we needed someone to help educate us about Down’s and walk us through the process of acclimation for therapies and early intervention and that kind of stuff.

What we didn’t need was to immerse ourselves in this sub-culture where people seemed to find their identity in their child’s disability.

Eat the Fish, Spit Out the Bones

We determined to apply the principle of ‘eat the fish, spit out the bones‘. Essentially, we took the good and learned all we could, but refused to become ‘The family with the Down syndrome child‘.

We didn’t want to be a part of a clique. We weren’t looking to make a bunch of new friends we only had a ‘special’ child in common with.

Listen, I’m supremely proud of who my child is and I want him to achieve his full potential in life. We just never wanted him to grow up in a vacuum – some sort of Down syndrome bubble – devoid of the social structure and interaction he will need to learn to navigate if he was ever going to live independently.

We have also made some amazing connections with some wonderful people who happen to share some of our story. But these relationships are the fruit of simply doing life and not because of some choreographed group exercise.

Some of the people we met did not know life outside of their diagnosis.

Their disability defined them.

Topher’s True Identity

Topher’s true identity is not found in his disability.

And to be fair, it is a very real disability. Nothing has demonstrated this more clearly than watching his 17 month younger sister catch up and then blow by him developmentally.

Topher finds his identity the only place any of us truly can.

In Jesus Christ.

The Bible tells us “Before I formed you in the womb I knew you” (Jer 1:5) and “you formed my inner parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made” (Psalm 139:13-14).

Topher is exactly who God designed him to be – quite literally down to the very last chromosome. I mean at the genetic level!

He is God’s masterpiece (Eph 2:10). And guess what?

You are too.

Topher has everything he needs to become ALL that God has purposed for him to be and do.

I have already said, I want Topher to achieve his full potential in life – and I do! The only way that doesn’t get perverted is by equipping him to pursue God’s plan in life and seeking to find his identity in Jesus and not his disability.

We would all do well to practice some of this. We teach our children ‘you can be anything you want to be‘ – and that’s simply not true. But you can be everything God designed you to be…

…and that’s SO much better!

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.

Our Journey

I have been a father to Christopher (Topher) Michael Lewis for over 10 years. December 9, 2000 we had a beautiful baby boy. December 11, 2000 we learned that Topher had a heart condition that was only found in Down syndrome children.

Our lives were forever changed.

Recently, I ran across a new blog from Rick and Abbie Smith who are walking through some of the same things we did over a decade ago. Noah’s Dad dot com has been a huge inspiration to many people and as I read their story of Noah’s birth (it’s worth you time, but grab some Kleenex), it forced me to ask a question.

Why have I had so little to say about our journey with Topher?

I did a search on my blog and you can see that in 4 years of blogging there are only 2 posts that say anything about Down syndrome. One for Topher’s 7th and 8th birthdays respectively.

What’s up with that?

Support Systems

First, let me say that I am a huge fan of sites like Noah’s dad that offer insight into the experience. I wish there was that kind of availability when Tabitha and I were beginning our journey. For one thing, blogging was not a word in 2000. It would have resulted in one of those red, squiggly underlines from your spell check.

Secondly, every single situation, every child, and each disability is unique. No two are the same.

There is no such thing as normal. What is normal for us may be highly unusual for another family.

That’s why these kinds of sites and support systems are desperately needed. When we left the hospital with Topher, we left with the hospital with far more questions than answers and, quite frankly, the standard line people recited, ‘God only gives special kids to special people‘ was wearing thin by day 2! (I almost punched a well meaning deacon’s wife in the throat. If you’re reading this…I’m sorry.)

Thankfully, we did talk to A LOT to people who could relate and that was remarkably helpful. Even more so if we had been able to gain online access to share stories with other families.

Our Outlook

I have a son with Down syndrome. Even so, there are days that go by that the fact of Topher’s diagnosis NEVER crosses my mind. Seriously!

So, in one sense, I am not surprised that I have had little to say about our journey with Down syndrome.

But, we have an experience and a platform to share what God has shown, taught, and done through our walk with Topher. To keep it to ourselves would be selfish in some sense. Many of the people in our lives never get to see the beautiful, tiny ways God demonstrates his nature through our miracle son. So, Tabitha and I are going to begin to share more, to write more about this topic.

Why so little?

On the other hand, I think a lot can be learned from some of the reasons we probably haven’t written more before now. As I have wrestled with the question of why we haven’t had more to say, I have boiled it down to a few thoughts.

Here are some reasons we haven’t been more vocal about Down syndrome or our journey:

1) Our lives have not been defined by Down syndrome

2) We don’t treat Topher differently

3) We are blessed with a high functioning child

4) Early intervention works

I will be writing a follow up post on each of these areas over the next couple of weeks. If you are a family walking through this journey I hope they are helpful to you. If you know someone that is experiencing the unfolding of this kind of news, I hope it will give you some insight.

Above all, I hope we can see the glory of God revealed in the most surprising ways. I hope we can learn together that God really doesn’t make mistakes. I hope we can see that even when things seem dark and answers distant, the God of this universe is holding you in the palm of His hands. I hope it stirs your soul to know that Jesus knows what it is to walk where you are walking.

The verdict is in. God is good.

Even when we can’t see how.

He’s still good.

Michael Guglielmucci singing Healer

I just read this new article (includes video) early this morning and I immediately had a couple of thoughts. In summary, let me give you the basic details:

Hillsong released the song Healer on their latest album. At a Hillsong service, Michael Guglielmucci performed the song while wearing an oxygen tank. He said the song was inspired after he was diagnosed with terminal cancer. As it turns out, he was never diagnosed with cancer. It may be that his own family was not aware of the deception.

This song has been used to draw many people to Jesus in spite of the circumstances or motives that led to its writing. In fact, a couple of months ago, I sent an email to our entire staff at WAC after I saw the live performance. It is incredibly moving.

I was reminded as I learned the news of this story that God can be glorified through less than glorious circumstances. Truth can be communicated even through people who are untruthful.

Phil 1:18 says “But what does it matter? The important thing is that in every way, whether from false motives or true, Christ is preached. And because of this I rejoice.”

TAKEAWAY: The motives of an individual do not take away from the Truth about a Sovereign God! He really is THE HEALER – the healer of sickness, disease, brokenness, hatred, unforgiveness, jealousy, debt, past failures, and ultimately death itself!

** Pray for Michael Guglielmucci and his family during this difficult time. It is my understanding he is undergoing counseling for this situation and he could certainly use the support of The Church as he seeks ”Healing” in this situation.

The gospel of John gives a fantastic glimpse into the peculiarity of the event.  John opens up by writing “In the beginning was the Word. The Word was with God and the Word was God…and the Word became flesh and dwelt among us”.  He dwelt among us!  I can accept the miracle, I just can’t explain it.  God loved me so much that he went to incomprehensible lengths to get to me to show me that love.  He came here and walked around in a body just like mine.  He experienced the emotions that I experience.  He got hungry like I do.

Today, I am thinking of this season that we call “Christ”mas (at least in some places still) and thinking of how far away from what was really going on in that manger we have wandered.  The festivities and all the “big” that surround Christmas have swallowed up the deeper and so much more profound reality of the simple, yet unfathomable truth that God came to us as one of us to make a way for all of us. 

My friend Carl Cartee wrote a song called Glorious Impossible that captures the impossible irony of that moment:

See the virgin is delivered in a cold and crowded stall
Mirror of the Father’s Glory lies beside her in the straw.
He is Mercy’s incarnation, marvel at this miracle
Lift your souls now and receive the Glorious Impossible!

It is so unthinkable to imagine that God himself would stoop to my level to accomplish what could not be accomplished any other way.  But that’s exactly what happened.  So today, I am thinking about what Jesus did for me – and for you!  Even in the cradle, we can see the cross.  Bethlehem’s humility always leads to Calvary’s humiliation.  As the angels join in joyous celebration of this barnyard birth, we must never forget – he was born to die!  He was raised to bring life to us!  So today, I just want to say thank you Jesus for what you did for me!  In light of that, and everything Jesus has done for us, I wish each of you a very Merry Christmas!

I don’t know about you, but sometimes I am guilty of thinking my God is too small. I am inspired by the words my friend shared with me: “I still believe in the God of the Bible”! He is still in the business of miracles. I am moved by the notion that nothing is too big or small for my God. “Jesus looked at them intently and said, ‘For humans it is impossible, but not for God. All things are possible for God.’” What are you expecting God to do in your life? See you soon!

In Christ,
Chris