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 bit.....one 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!

Reflections

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. 

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 more...and...is 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

Need more stimulation mom...

She is growing up. Quickly. 

I totally under-estimate her, I am realising slowly that she's not a baby and doesn't want to only play with rattles! I'm having to get my act into gear and treating her like a child who can comprehend things, pick up things, adapt to things, play with sophisticated 'toddler' toys. Its been a long time coming - and maybe with the busy-ness of life, I've known this for a good few months but haven't really put anything into action. 

Because she's not physically changing like a normal child would and would naturally move towards new and different toys, exploring things that she wants to explore...the 'watching her grow up approach' - I'm having to 'guess' along the way of what she would be doing and trying to make where her mind is going come alive for her. Attempting it..should I say! 

But her friends are teaching her (and me!) along the way. So its time to find her a bike / trike / something that moves that will work, to find some 'clever', real-life scenario toys, get her drawing, play-doughing, talking (ok babbling more), learning animals, signing more..

Lets hope some fun 'playing' pictures to follow :)

World Down Syndrome Conference

I recently attended the World Down Syndrome Conference held in Cape Town - right on my doorstep. I  couldn't miss the opportunity, as I really can't see when else I'd get to go to one.

I hadn't thought about it that much before I arrived, possibly not the best move! The first morning was incredibly emotional. I can't pinpoint why - but must have been the mix of: seeing lots of other children and adults with Down Syndrome (like seeing my future before my eyes); watching closely to how parents were handling and controlling their children; listening to how people described Down Syndrome and listening to Down Syndrome people talk and share their stories. I was teary for most of the morning, desperately waiting for it to become more 'business like', but I soon realised that there was going to be nothing business like about it - for me at least anyway.

I attended some interested talks and workshops, was a good 'reconnect' for me with all the aspects that I should be dealing with and addressing with Katelyn.

Some things that stood out for me:
- Facing the realities of an 'Intellectual Disability'
- Education and the incredible challenges of inclusive education in a South African context
- The power of self-advocacy
- The weight of responsibility the parents take on wanting the best for their Down Syndrome children

Hopefully I'll find the time soon to run through my notes and consolidate my thoughts properly!

The light always comes

I have been mulling some things over in my head for a while now. Its a mesh of different thoughts, feelings and ideas...much more than the 3 that I can put down tonight :)

I have miscarried twice in the past 5 months. Both at 10 weeks. Both gave me enough time to really think about the fact that I was going to have another baby, think about us as a family, Katelyn, practicalities and also the random little things that come up in those first 6 weeks. So it was enough time to feel that I really lost something, to bring back my fears of pregnancy. I'm so grateful to God for carrying me through both those times with such tenderness, and even though it's been hard, I've managed to remain positive, full of faith and able to move forward.

The 'extra time' of this current season has allowed me so much.
A feeling of being so much more present in my time with Katelyn, which is such an enormous one for me - especially as she reaches new milestones.
A feeling of not being so absorbed in your own world but having the chance to take a step away from your immediate life, be reminded of the big world we live in, that there are always more people to meet and the opportunity to deepen relationships.
Making a decision to really make the most of this time not trying to rush it away, but enjoying what it offers us.

They are small things (and there are others), but I feel that God has shown me the joy of this season. It's not all plain sailing, but the light always comes.

a very cute and happy day :)                                  p.s. I seriously adore this kid :)

The Power of a Diagnosis

I've been meaning to write a post about Katelyn's thyroid test she had in March. I'm not going to get into all the technical details...will save that for another day, but after two and a half months on medication, I'm seeing the effects.

Then:
BAD appetite, NOT growing at all, weak and just not getting very strong (ok I know this is also part heart related), very constipated....

Now:
average appetite, its finally possible to manage her constipation, GROWING madly (suddenly rather round face and tummy...I'm all for it! ), SO much STRONGER.

I can't even begin to explain how much stronger she is. How much more determination she has. Its definitely not something that's always been there. She suddenly has the will to want to really try hard, to climb, crawl (however she can) and just go mad!

All it took was, reminding the doctor that we needed to do Thyroid tests...because unfortunately for us DS parents we have to prompt the doctors quite a lot in what tests need to be done and when. But it's worth it :)

For more info on Down Syndrome and the thyroid see this website's article.