Saturday, 21 March 2015

To my daughter on World Down Syndrome Day

I have no doubt that when you’re older you’ll think this day is all about you. Right now it seems you think the world revolves around you J But this day is about so much more than you – it’s about me, your father, your family that love you so and everyone else that your life touches.

Down Syndrome has taught me to open my eyes wider, to accept everyone as valued and purpose-filled.

We know that Down Syndrome means some challenging realities for us and you, but we also know that you are an incredible blessing to us and we are completely madly in love with you [how did you get us so wrapped around your little finger???]. I was nervous to love you when I heard of your diagnosis yet now I am fiercely and proudly in love with you.

So…it’s almost your birthday…that day is all about you – but today is celebrating all that Down Syndrome has brought to me and many others.

Friday, 6 March 2015


Katelyn is a big sister. Little sister Jessica, is having to learn really quickly how to handle her overly enthusiastic, come overly emotional older sister prodding, poking, pulling...I'll leave it there!

early days...
As I watch them together, I pray for a very special relationship. Its been a real answer to prayer having another child. I hold this little one each day with an extra squeeze acknowledging this incredible gift we've been given. Then I hold Katelyn with an even bigger squeeze - wishing I could talk things through with her, chat to her in detail about what Jessica is doing, asking her what she's thinking - but instead, we have lots of deep hugs and simple words and I'm trusting that that is just what she needs right now.  

so sweet getting onto her level

Katelyns' new way of smiling ;)

Saturday, 2 August 2014

I think we can say it....she's walking!!!

I cannot describe the joy it brings me to see my little girl taking steps around the house.I think she's taking enough steps for me to officially call her walking!!!

After almost 4.5 years, to now hear footsteps around, to see her standing in the doorway waving goodbye to me, to suddenly have her at my side - has to be one of the most wonderfully rewarding milestones we have reached with her. 

There are lots of aspects and challenges around her walking still - but that will not steal my excitement or make me less proud. The delight on her face in her new found freedom brings deep joy to my heart!

Friday, 31 January 2014

I Love Swimming

Katelyn loves swimming. I have a water baby!

...and in a month...hopefully i'll be posting photo's of her swimming and floating on her own (with some floating assistant of course!!)...

The first school year

I better get a quick post in there before its the end of Katelyn's second school year!

For what can be a very daunting day for many, I knew inside that Katelyn would adjust to being dropped at school rather easily. She's is incredible with people and very easy and trusting of others. It helps that at school there is absolutely no shortage of love.

One on one time in action - she gets 45min a day one on one time, what a spoil!
Katelyn enjoyed school - and for the first year she progressed continually and didn't seem to hit any developmental plateau's like she had before - everything just slow and steady. She struggled with her health, and at a stage was only making it to school every odd week for a few days before she came down with something else.

Unfortunately after a bad chest infection in Autumn we knew we'd have to change our strategy - as the impact on our family having her sick every second week wasn't worth the few days she went to school.

She got healthy over the winter school holidays, and we kept her at home for most of the third term. What an impact it made having her well for 2 months. She flourished, was so happy - so it helped justify the decision! Her doctor started giving her immune boosting injections every 3 weeks, and ever since those settled in, we've had a relatively healthy ride. She was healthy for a wonderful family holiday at the beginning of spring and managed the full fourth term with only a few days off.

Happy at the Christmas concert! First time she's ever kept something on her head - amazing what school does!

Its been quite an adjustment having a girl at school 5 days a week (especially when school is not just down the road!). But the biggest adjustment was definitely for me. Learning to find our feet in amongst people who don't know us, don't know her and for many, don't know much about Down Syndrome - particularly as the year went on and the other kids developed so much around her. I feel it allowed us a process that we needed - allowing the thoughts, feelings and emotions to take us first to Christ, making us more united as parents and really just more totally in love with Katelyn than ever before.  

Saturday, 24 August 2013

2 beautiful years...

This day will always be a significant day for us. Our entire focus for the first 18 months of Katelyn's life was getting her to her Open Heart Surgery day. It took us what felt like an eternity to get there and when we got there it felt like life stopped for a while. I read back to those blog posts now, am reminded of the intensity of that time, but my overwhelming memory is the incredible grace that carried us through.

The operation and her slow and rocky recovery have affected her physical strength so much and we still continue the journey towards getting her walking. Its slow, but we are getting there. We continue to have pacemaker checkups every 6 months but her heart rhythm has come back on its own and her pacemaker is there 'in-case' its needed.

What an incredible 2 years its been. Despite her physical challenges [and loads of sickness in-between], the change in her has been phenomenal and its been wonderful watching her develop, communicate through signs, go to school and do big girl things.

It seems as though we started walking out from under the black clouds on this day two years ago and that even-though the grayness was hard for a while, now it feels like we are standing in the sun. I'm so incredibly proud of this girl and eternally thankful to God for his never-ending grace.

The two years in pics...

24 August 2011

7 days later she went back into theatre and had a permanent pacemaker put in.

1.5 months after coming out, she back into hospital to be re-opened and restitched up.

6 months later....

Still haven't really grown into my pacemaker much...but as cute as ever!
1 year later....

scars starting to get a bit better...and slowly filling out around my pacemaker

 18 months later...

18 months later I start to become more physical, doing weird and wonderful things...doing my own version of crawling

Pacemaker still very much there...but I'm getting much bigger anyway!

2 years later...
 Her scar isn't the greatest, but when you've been cut open three times while your wound was trying to heal, i can't really complain!

Now...just loads and loads of happiness and smiles!!! What a joy she is...

Dads reflections

My first little addition to my wife’s reflections....when Carol mentioned to me yesterday that Saturday (today) would be 2 years since our little fighter’s heart was fully repaired, I could not believe it. We then scrolled back and had a look at some photos of her during her surgery time, and oh my word, it really got us quite choked up – there were more machines, pipes & drains than Katelyn! Her little body was so lifeless during those ICU days. We both agreed that if she was to undergo that now that, we don’t know how we would handle it & we would be in a far worse space. It is so clear that this little munchkin of ours has not only come so far herself but she has edged her way deeper and deeper into our hearts and minds.

I am not going to lie, this journey to date has not been easy at all, and we have plenty of challenges and struggles with Katelyn but to say that she has crept into my heart & grown on me is an understatement. Something that we often say to each other is “Shame love, she has so many challenges...” - the thing is though, she is such a fighter, so brave and courageous, that against all odds, she continues to astound us. Katelyn does struggle to do the most simplest of things that we all take for granted, but this does not stop her repeatedly trying again. When most of us would have given up, she keeps going!

When I look back at that lifeless body in ICU and how she was when we eventually took her home, I realise how far she has come.....her communication via sign language & even the odd word, her eating, her swimming, her singing & dancing, her pulling herself up & her general getting about.....and she even sleeps a bit now.....J

I have been working from home for about a year now I think, so I have had the privilege of seeing my special girl quite a thing that I always look forward to is when she wakes up from her afternoon sleep & before heading down the passage to Barney......or lunch......she pops her head around the corner into my office just to say hello.......actually probably just to make sure that I am working! The joy of seeing that smiley face every day is really a blessing!

As coined while she was in hospital, Katelyn will always be #ourlittlefighter – she has an incredible spirit & such tenacity; I have learned so much from her already and look forward to all she has teach me in the future!