This is the fifth post in a series sharing our experience with our son Topher and our journey with Down syndrome.

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?

This is the fourth post in a series sharing our experience with our son Topher and our journey with Down syndrome.

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?

This is the third post in a series sharing our experience with our son Topher and our journey with Down syndrome.

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!