She Is Our Daughter

It is no secret that we have daughter with special needs.

She is 11 and cannot speak and she is beautiful.

We were so excited to learn we were expecting our fourth child. I had always wanted at least four kids - my wife was not as sure. We have always struggled to have children and our first three children were premature. Not an easy road to travel that.

We were almost ready to call it a day with trying for one more, but when we fell pregnant one last time, we were relieved and happy. 

This is our baby – so get ready world. 

Our other children were 9, 6 and 3 when little Sophie was born. 

Another girl! 

My wife cried for joy. 

Two boys and now two girls.

There was symmetry in that.

We were happy.

She was early like our other three babies, but she was healthy and we brought her home and life returned to normal. 

Soon Sophie was running fevers, crying continually and was not really meeting some basic milestones. We had her checked out many times and we were reassured she was probably just a little behind and there was nothing to worry about.

When she produced a single front tooth we began to get concerned. Our specialist's initial reaction was that she was probably fine, but when we showed him the tooth, he immediately frowned saying “that is ringing some bells – I had better check into this.” He finally asked us to get her an MRI and the results showed that our dear little Sophie had indeed been born with a condition known as lobar holoprosencephaly. 

I couldn't say it let alone spell it.

Our world caved in – well just for a moment. 

Our oldest son was already quite challenging for us after being diagnosed with autism, and now we had the prospect of a child who not only may be severely disabled, but may (according to our ferocious internet research on HPE) only live for a short time. 

OK, OK, OK.

Rally the troops, dig in deep, and take a deep breath. 

OK, OK, OK. 

So this is the hand we were dealt with. 

Time to get up and make the most wonderful life for this precious little girl. 

We can’t reverse what has happened. 

It was not our fault. 

It was not what we had planned.
It didn't seem fair. For any of us.
But she was here.

So now we were the parents of two very needy children as well as two exceptionally gifted middle children. 

No time to feel self-pity. 

We had work to do. 

Sophie grew slowly and developed some difficult medical conditions due to the HPE. Through medication we can control these things, as well as her diabetes insipidus and epilepsy.

And she began to grow. 

Being the fourth child in a boisterous family, we have never treated her any different because of her special conditions. She hardly crawled and used to roll around on the floor until she was nearly three.

That was OK.

That's who she is. 

And she was here.

There is a downside.

People are not tolerant of her unusual behaviour and point and make comments behind awkward side glances.
Some days, the actions of others seem to prevent us from being a normal family.
I have had the experience of people criticising me at the shopping mall for wheeling a grown girl in a pram.

Once we were asked to leave a cafe so as not to upset the other customers.

A random woman approached me and told me that she was a good reason for legalised abortion.

A sunday school teacher told us they simply don't deal with 'one of those'.

Many people just look on with sympathy albeit with great respect for us.
Inside they are grateful they do not have this burden themselves.

Many just stare.
Many simply pretend she isn't there - that one hurts the most.
They do not understand.

But she is here.

She has a voice, but has not yet talked.

She can say a few sounds and uses her own version of sign language. 

She still is in nappies and is constantly needing to be cooled down and hydrated. 

She has low muscle tone so walking and gripping is a real challenge for her. 

But boy does she try hard to do things. 

She is very slow to do most things for herself, but so what! 

She also has the most heart-grabbing smile. 

She laughs all day long and loves the swimming pool. 

Sophie enjoys eating and sleeps well. 

She has a bright and gleaming look in her eyes and also has a fantastic right hook! 

She attends a special school and although she can now walk, needs a wheelchair to cover longer distances.

Our Sophie is a handful as she gets older, but she is so much more a blessing in return. 

We are uncertain of what her future may bring. 

Perhaps she will just start to talk one day? Perhaps not. 

She will never be able to read and write.

FInd a life partner.

Have children.

Travel and be independent.

We don't have a lot, but we have all the hope in the world for her. 

And she is here.

Our goal is to never underestimate what she can achieve. 

We want her to have all that the world can offer. 

She will succeed in some things and will never do others. 

That is her life. 

Do we regret having her after all the things she has faced and will face in her future? 

Never! 

How could we? 

She is literally the love of our lives (as are all our children).


Thank God she is here.

You cannot help but be significantly changed by spending just a short time with our Sophie. 

Happiness fills her life as she does ours. 

Is she aware of her differences? 

Perhaps. 

Does it matter? 

No. 

She is here – for better or for worse. 

Not that we know what the worse is yet. 

Is the future scary for us? 

You bet.

Her lifespan is uncertain.

Tomorrow I may go to wake her and she will be gone.

I'm prepared for that.

Well, the idea of it anyway.
Actually no.
No parent is ever ready to lose a child.
I'm not ready.
If it ever happens.
Make each day count.
That's for sure.

You often hear the cliches of parents saying their children are their inspiration and heroes.

I don't admit to that.

It goes without saying.
I am just glad that she is here.

Sophie is a miracle of course.

She is a presence.

She is joy.

She changes lives.

You just need to meet her to know that.

But most of all . . .

She is our daughter.