Winter Solstice

Our school celebrated the Winter Solstice last Wednesday with a lantern walk, it was a beautiful and very cold night. The boys LOVED their lanterns, which we (actually I) made over the past few weeks of playgroup and at the end of the night each child received a gift - a Dahlia bulb to plant in the garden to wait for spring.

Mister "I have a flame!" manic grin

I can take it from here Dad !

(this is the only photo of Owen that wasnt blurry I think my old olympus is on its way out.

POP up outta the hole

I am SO out of the hole (re my last post)!!!

Thanks for the love and understanding of my friends.

Sometimes I think I live my life like its a sprint race, I think if I just stretch that little bit further, I will get to cross the finish line and THEN I can relax and rest. But I am coming to realise that life is more like a marathon and along that 42km run you have to pace yourself and you have to take some sustenance along the way or else you are really headed for trouble. My sustenance is provided by connecting with friends both those who KNOW DS and those who don't. This week has been connection week for me I've slowed down had lots of cups of tea, emails and love from friends, I feel good again, rested, calm and ready to continue.

And I thought I would add a video of Owen and I sharing a book, this is the one he learnt his colours from, words are few but through signing we have real communication.

The Hole

I have fallen in a hole or The Hole this weekend.


I suddenly lost faith.


The future was overwhelming.


I felt regret.


I thought of nothing but the struggles ahead.


I could see all the 'differences'......... and I hurt.

I have not had such a difficult time really since the early days. I thought I was past all these feelings and thoughts, so I was disappointed to fall so hard all over again.

The weather has been bleak these past 3 days and that feeling was certainly reflected within me.

Pick a Color

So we had a therapy visit yesterday its been 5 months since the last time we saw them.
Owen Finally stacked those (#*%$ blasted rings for the first time - with ease, like he had done it 100 times before. His hands are tiny and it has always been difficult for him to grasp those thick, slippery suckers, but yesterday he blitzed it.

They asked what had we been working on and I said with honesty - "nothing" then feeling embarrassed I added "ummm I have been showing him the signs for different colours ! (phew relief, yes I had been "working") But then the therapist said well we don't expect colour differentiation until much later, do you think he knows any of the colours? Well honestly I have never tested him all I have been doing is showing him him the signs of the colours when we look at books - green grass, red flower etc. So the therapist holds up two of those pesky stacking rings, a red and a green ring and sayes to Owen "red where is the red ring" and he reaches out and chooses the right colour ! (but I am thinking okay there is a 50/50 chance that he will get it right. She does this with different coloured rings 3 different times and he gets it right 3 times ! And the therapist sayes "he knows his colours" and I can tell she is a bit shocked.

But in the back of my mind I am thinking this could just be luck) so when she left, Owen was playing with some toy cars so I hold up two, a red and a blue and ask him where is the blue car and he looks at both carefully and I can see him thinking, and then he reaches out and grabs the blue car and now I know for sure. He does know his colours because I have seen it in his eyes, I have seen his understanding. And I feel humbled that I even doubted him.

Owen you are Rockin it baby.

Stereo- type

Lets face it sometimes the Down Syndrome Stereotype fits and you just gotta wear it.When O was born many well meaning people said "oh They are such loving children" nope Owen is not, he is your typical 2 year old he will give it when he wants but is far too busy most of the time to bother and we also heard "oh They just love music" and this is the stereotype that fits Owen like a glove!

This kid LOVES music, he asks me to sing to him all day long and if I am not singing then there is a childrens music CD on. I can think of aleast 5 musical toys that he has worn out the batteries in, my other 2 have ever done this to even one of their musical toys. The latest victim is Wags the Dog who gets played incessently if the said Childrens music CD or I am not performing .
Owens idea of heaven is book/music CD set. Currently The Golden Kangaroo is the soundtrack to our lives (and if you don't know it, think yourself lucky) its on in the house and in the car, he asks for it to be played over and over. I dream about it, I wake up signing it, I try to ignore his "Kangaroo" noise but he just goes on and on about it and ends up lying beneath the stereo whinging and signing turn it on, turn it on, until I relent. Any suggestions for favourite childrens music CD's prefferably ones that don't drive a parent crazy with it on a loop gratefully accepted.

Heart Day

27th of May 2009

My little angel, they took you away from me today to fix your heart.
I handed you over and when I saw you again I didn't recognise you, you were so swollen and covered in tubes and wires and I held my breath because I could tell you were not with us. Death sat quietly waiting in your corner of the room and I realised that Death was not a cruel malevolent spirit waiting to snatch you away, but instead is a silent watcher, and it was waiting for YOU to make a decision whether to live or to pass, and if you decided to pass then Death would sweep you up gently and guide you there.

On the third day after the operation I walked back into PCIU after a having a break and nothing had changed, you were still on life support, still on the same drugs, still had a pacemaker telling your heart when to beat but I could tell just by looking at you that you had decided to LIVE, you were BACK and death had left your corner of the room because it was not needed anymore. From that moment you went from strength to strength and slowly but surely the tubes came out, the medication decreased and the pacemaker and oxygen were finally removed.

Our first cuddle with your mended heart (one happy mumma)

27th of May 2010
One year later and you were THRIVING we call you Chubb-Nut because you are so pudgey and squidgy and fat.

(nibbling on your heart beads; one bead = one procedure )

27th of May 2011
Here you are today, just amazing, what an incredible gift those surgeons gave us that day 2 years ago, an opportunity to see you grow and experience the joy you bring to our family. I love you sweet heart and thankyou for the choice you made.

(your so proud of your heart beads !!)

Loving your life !

Myofacial Trainer and the Calender

I decided to hit the dentist with all 3 boys in the same week - which was efficient but mad. All of Owens teeth are finally through with the upper incisors finally pushing their way into place! Now he can't use teething as a reason for being in a Funk !!!

The dentist would like to start Owen on an Infant Myofacial Trainer in about 6 months time to expand his palate, straighten the alignment of his bottom teeth which are crowded and to get his tongue to sit up behind his front teeth rather flopping onto his bottom jaw. He doesn't' have a tongue thrust problem but he does have an open mouth position which the dentist sayes can lead to mouth breathing (he breathes through his nose at the moment). Mouth breathing is not great because it narrows the face and palate and Owens palate is very high already so that there is no "house" for the tongue. The trainer is meant to train the tongue and widen the jaw and palate and develop good breathing habits. The dentist has used it on their own child with great results, so I am willing to give it a try.

Also been very busy with my older 2 boys lately also with medical things nothing too huge but nevertheless worrying and time consuming. I am living by my wall calender at the moment, I can't function without it, I have to check it everyday to see what's on and I can't make follow up appointments unless I am at home and standing in front of it just so I don't double book. Roll on June - when it looks like things finally start to settle down..............................