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! 

A Working Mom

Its been 2.5 months. I've had a half 'real' job. Real it is...but technically half-day.

Its been a fascinating journey since I started working. There's the whole leaving, being organised, child ready and prepared for what may lie ahead for the day...but that's just a side-line and can be as big a deal as you make of it (I think!!!!).

What's been interesting to me, is people's responses to the fact that I'm now formally working after 19 months of being at home (or in hospital should I say :) ). I get many 'congrats, so great that you ready for that now', 'must be so nice to have some other stimulation', 'so happy for you that you can have a bit of your life back', 'you've done so well so far, time for a bit of a change'. I've found it quite strange trying to process what people perceive that I may be now, or the point I've reached, or whatever else they thinking.

Truth is, I wasn't looking for a job. It just happened. It happened quickly too. No time for planning, preparation, organisation and all that. I'm ONLY doing it, because I'm so interested in the work...and the financial benefit is an enormous blessing to the household.

I feel like others are defining me as something different now because I'm working. I don't want to be defined by what I do with my time, but by who I am. I don't want to be defined as someone with a special needs child, who's working half-day...I want to be defined as a person with real character-traits, with a sense of humour, who cares, supports, loves, enjoys life. That's other, but most importantly, I don't want to feel I'm more valuable now that I'm working, I want to find my security in who I am, not by what I do.

**Yes, so on the side...I enjoy the work. But it does come at a big cost. Katelyn needs lots of particular, specialised attention, and her medical needs in the past few months are incredible difficult to keep on top of, so it creates a general average state of chaos in the household. Without my amazing husband, we'd be nowhere. Who knows where the year ahead takes us, but as long as we're true to who we are and what's important, that's my true desire.  **

Encouragement

My encouragement from Job 11 today. In amongst so many questions about life,I know the peace of God.God truly is good.

 17 And your life will be brighter than the noonday; its darkness will be like the morning. 18 And you will feel secure, because there is hope; you will look around and take your rest in security. 

Don't want to...but have to...Constipation

Never in a million years did I think I'd be writing or thinking this much about something I really don't want to discuss! But I figured, for my own benefit - I'm going to have to write this all down, so that I can refer back to it when I've lost my marbles :)

We deal with significant constipation issues, a mixture of contributing reasons: post-op (the effects of so many very hardcore drugs-morphine,anaesthetics etc in a short space of time), muscles just not strong enough from the low-tone with Down Syndrome and then the fact that she's really not mobile at all, so when she starts to move around it'll get much better I'm sure.

So here's my list, starting with the most natural things, the things I've learnt from various doctors / physio's / specialists...and the progression that I take (daily) when figuring out at what stage of the process Katelyn is at...the joys :)

*I really may have left something out...if I do...I'll add it in another day, so forgive me!*
**Obviously, drinking the right milk and eating good healthy foods(not processed/refined) is an essential**

Natural, non-medicated options:
-Flaxseed oil                            
To mix a teaspoon into food daily / twice daily. Has so many other benefits too.
-Fruit...like prunes, peaches, paw-paw            
Fruit-fruits that help your bowel move. Be careful, if she doesn't drink enough, high fibre fruits require lots of liquid to work successfully, otherwise it has the opposite effect (apple, pears, banana's) 
-Bathing or sitting in warm water
So good for the stomach and bowel, relaxes it 
-Water and sugar water....always good
-Glycerine suppositories
These are not medicated, your body doesn't become reliant on them in any way. They only release the 'plug' if there is one.Can give multiple a day.
-Tummy Massage
         
To the next step:
-Laxette
Laxette is not a laxative. It just helps soften the stool, it doesn't make your gut move. Katelyn is on a very high daily dose of it, and I am continually re-assured that she will not become reliant on it as you would if you took a laxative. Can give a really high dose - though can end up in cramping and discomfort.
-Pegicol
Pegicol seems to be far superior to Laxette. Sachets that you need a prescription for. The trick is, they need to be taken along with enough liquid for it to bind itself too. So unless Katelyn drinks 150ml minimum when giving her a              pegicol, it can have the opposite effect. When she is very bad, she unfortunately doesn't drink much, so I often have to rely on Laxette and not Pegicol as I probably would prefer. 
-Dulcolax
This makes the bowel work. Katelyn seems really uncomfortable when I give her one, but I have to do it often. Preferably only every second day, and not for an extended period. 

My new next step to avoid hospital:
-Enema(1/2 adult dose)
Not even going to go into it...

If no luck...then back to the doctor, x-ray....then hospital admission for a washout....

**Thanks...I needed to get my head around it again. I'm so full of medicine schedules, that sometimes I forget to apply my mind to this daily, as its really (for me at least) about daily staying on top of it if possible, otherwise she stops eating, drinking and it only gets worse. **

Where did the time go?

Feels like its been a lifetime since my last post.Yikes...its November!

Katelyn has had a tough time since being home, with throat, nose, tummy, wound issues...all one after another. She ended up back in surgery after 4 weeks at home, as her wound wasn't healing around her pacemaker. So they cut her open again (not the whole way up, but almost), moved her pacemaker and stitched her up nice and tightly. Out of theatre and back onto a ventilator, which really was just hard to see...after all that she's been through...going in for a 'surface' surgery...and back to that state.[I of course know it was the best thing]. Anyway, she struggled a bit in hospital, and came out after 6 days on more medication than after her open heart surgery! After that again, has been one thing after another, ears, coughs, noses etc...with the one odd happy day inbetween, but her poor little body I think has had enough of getting attacked by things! I keep trusting that we're on the road to 'good health' soon...or at least to get to 7 days straight of a happy healthy little girl! Desperate for her body to get a chance to get strong again, start preparing for crawling (military mom almost in action) and learning more and more.

I've started working. In amongst the medical chaos I'm trying to get a good few hours work in a day...proving to be interesting jumping from work meetings to doctor's appointments, sending Katelyn with others to doctor appointments, daddy covering for me while I'm at work. So all interesting. It feels like madness, but this madness feels right (how is that possible!). 

But in between all of it, Simon and I had a great night away, we celebrated Simon's 36th birthday (getting seriously old!), had some good times with friends and family. Katelyn still manages to charm her way through life, making lots of doctors, granny's, passers by, nurses all smile...which always warms my heart. When I think of the past 7 weeks, I can't quite believe what she has gone through (and I wonder why she bursts into tears when she sees a syringe!) but still, even when she's feeling pretty rotten, she smiles and gives me a nice warm cuddle and I just want to squeeze her tighter.

Think we're in love with her more than ever before, so proud of her and looking forward to what lies ahead for her in the summer months to come.