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.

Crawling

Wow, I happened to look back at a post I wrote in June last year. I will Crawl
Amazing how strong she was...but mostly shocked when I really think about how much Open Heart Surgery and her bumpy recovery has affected her.

Quite something to process.

She is getting stronger though :)

Scars and foreign objects!

I don't know why, but I've been thinking about Katelyn's scar a lot lately. I think a combination of being reminded of how physically set-back she has been because of her operation last year and also wondering how her scar is really healing. I've realised how I don't even think about the fact that she has a massive scar down the front of her chest as well as a very obvious foreign object inside there! (aka...pacemaker!). I've had to make sure that if i take off her top in front of others, that I warn them or explain why she has significant scarring.


Anyway...was interesting to look back at some pictures, be reminded of how far she's come..

Her initial scar after her first heart surgery (Banding) at 3.5 months. This scar is now a very delicate thin line that you can hardly notice.

The little body before...

Her after just being home for a few days...whole body battered and bruised with from all the drips and lines . 

This is two months later, after the scar wasn't healing well (her body half rejecting the pacemaker) - they had to put her under again to restitch her up. Pacemaker was shifted a bit and still very swollen around the area.  

This is just three weeks after the second operation - all bandaged up - trying to get the pacemaker to stay put!

Again - just a week later, the white plaster there just to help the pacemaker from shifting too much (in the end didn't help at all!)

Another week later...looking good...but still looks swollen.

Then two months later, the left and right side of her chest look very different (difficult to see), but there is a big step in her sternum so the one side looks more swollen or as though someone knocked her with a brick!

the pacemaker has found its place....perfectly obvious...can't miss it!

example one of her in action...what her body movements do and how they show off her pacemaker...

the ultimate....rib cage, pacemaker and scar all in one...but most importantly...the cutest little  girl!

Celebrating 2!

I cannot believe its been 2 years. My little girl is 2.

In some ways it almost doesn't make sense, when you see her and may expect her to be around 11 months old  based on size and abilities...but nope, she's a whole 2!

So many thoughts cross my mind when I contemplate the past two years:  how much she's had to go through, how exhausting and long its felt, how gorgeously cute she is, how when you wait so long for some things the reward feels so good, how we really are still in baby phase, how I love the fact that she's still good at cuddles  :)

Katelyn Louise has quite a lot to show for her two years. Something I can't shake though, is the feeling that she is the one single thing/person in my life that has had the biggest impact on me as a person. Not the 'having a child' part, something so much more than that. It's the questions she's made me answer, the awareness and perspective she's brought to my life, what she's brought up in me, learning over and over to be patient, loving, not jealous, accepting, easy on myself and just so much more. So, I feel like these past two years have begun a journey in me that will continue forever, but one that is so rewarding...because honestly...with a cute kid like this...my heart continually smiles :)

Don't really have proper pics of her relaxed bday celebrations...but here are one or two for now.

From this....

really no clue what is happening with everyone staring at me :)

finally a smile :)

** The best part of the day was that her 3 month old cousin, Sarah-Hope was there. I'm still preparing to write about her and how these two are going to be fab friends...but I may wait until her mommy has done version one of her birth story...hint hint :) **

Those Moments

Sometimes I have these moments, where I find myself feeling so sad for my special girl for all she has to go through.

When after a stretch of issues(of any kind) over days or weeks (in a good phase) and she just cries and cries in bed at night, I just can't not pick her up,hold her tight to tell her I'll always be here for her and that its so yuck that things are so tough for her. 

Its not a depressing emotion, just a deep one. I'm full of faith for the life she has ahead of her, but I cant pretend those moments dont exist.

An Unhurried Life

I have been so challenged recently - through a chapter in a book (The life you've always wanted, John Ortberg).

Just a few on the list that described me: constantly speeding up daily activities; at a robot, I'll always try and guess which lane will be quicker to go in, I'm watching the opposite robot turn orange so I can get into gear, continually multi-tasking, feeling like I need to make 'time worthwhile', not spending enough time with the 'right' people, must achieve something with time...

Here were just some extracts that I wrote down that were thought-provoking to me:

" Life is cluttered when we are weighed down by the burden of all the things we have failed to say no to. "

" Superficiality: If superficiality is the curse of our age, then hurry pronounces the spell. Depth always comes slowly."

" We have traded wisdom for information, depth for breadth, we want to microwave maturity "

"Love and hurry are fundamentally incompatible. Love always takes time, and time is one thing hurried people don't have."

"...we are just too tired, or too drained, or too preoccupied to love the people to whom we have made the deepest promises. this is when...you find yourself rushing when there is no reason to, underlying tension that causes sharp words or quarrels, you sense a loss of gratitude and wonder, you indulge in self-destructive escapes from fatigue - alcohol, watching too much TV, ..."

There is so much more - and its concluded in describing the need to force yourself to slow down, finding solitude and taking extended time-outs - that's the most important part, but I'm trusting God I can write a post about that in the future :)

** on the side, it's also challenged me that I'm going to need to slow down a lot in order to take-in each day, and enjoy each day that I have with my little girl! **

Healthy Happy Holidays

Some pics from our holiday...lots of beautiful swims, cuddles, meals out and about, sand, sun...

Milestone Mania

My child...she's just manic these days!!!! Got to be the result of 7 healthy weeks. She's stronger, louder, more determined, smiley, cheeky, totally naughty and everything else in-between.

How am I meant to discipline her when...

* She stands up in her high-chair when I'm trying to feed her...I mean, she's figured she can put pressure on her feet and stand...I'm ecstatic! 

* She tries to launch herself onto me to pull my hair (and hard!)....I mean, she's got enough strength to do whatever she has to do to get herself onto me...I'm smiling!

* She puts on tears to not eat...I mean, she's realised that there are multiple emotions in this world...I'm thrilled

* She pulls everything off the table when she's standing next to it...I mean, she's figured that if she gets her hands on the table I may help her up...I'm overjoyed!

She seems to be getting closer to crawling by the day. She all of the sudden got from lying down to sitting up (with a teeny bit of nudging) all on her own yesterday ( I thought she was miles off)...and by the end of the day she was literally leopard crawling. She is figuring it all out very quickly. Even if she isn't quite strong enough for crawling yet, the patterns are slowly coming together.

When I finally get my pictures off my phone, I'll be able to post some gorgeously cute photo's of my strong little thug. 

I think the next stretch is going to be Milestone Mania!!!! I can't wait!