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!

Tuesday, 19 February 2013


I recently read a book sent to me from a family friend in America. A good and perfect gift - Amy Becker. It was very surreal reading a story which almost feels so similar to our journey in so many ways - their Christian faith, their firstborn, their fears and sensitivities being a special needs parent.  

Subsequently, I read this blog post Reflections - posing questions around how to deal with the ups and downs, emotions, feelings.

Reading about other people's journeys helps me to reflect on ours to date, to grapple with emotions, connect and get a glimpse into the lives of those who are walking similar roads.All this a gentle reminder - to take time to reflect, to allow myself to be where I find myself and to remember that I'm not alone. 

Wednesday, 13 February 2013

Development Cycles

I have written before about the interesting development cycles that are associated with Down Syndrome. I don't think you'll find it in any medical papers (or maybe I just haven't read enough!), but most people you speak to tell you about it and most parents I've spoken to have experienced them. Maybe its only something that's associated with the first few years...will be interesting to find out.

Instead of a continually escalating development cycle like you would find in a normal child, who's always learning something new whether it be around physical, fine motor, language or social skills. The Down Syndrome cycles seem to follow long 'plateau' periods and then sudden 'development' periods. We were in a plateau period for about 6 months last year. It's incredible challenging and frustrating. Not seeing any changes, nothing seeming to be improving...but it also makes a development period even more rewarding. We seem to have been on a developing cycles for the past 2 months or so.

Katelyn has picked up so many new signs, is communicating using sign-language (as opposed to just signing a few animals) , seems to be understanding so much starting to stand a lot! Its a wonderful period to be in - so rewarding to suddenly see things changing.

Katelyn just loves it when I play the piano

She's so enjoying time on her trike. Its great that there's finally a bike of sorts that does work for her.

Post swim cuddles