My weekend away and other things...

It has been ages since I last updated my blog - a fact that my dear friend Kate reminded me of today. I met Kate when I was working in ED in a place far, far away! There was something about Kate that I liked immediately - although she later confessed she was a little bit stunned to meet me. You see readers, I haven't always been the well balanced individual you see before you (grin). In those dark, distant days I was a Registered Nurse who took life a bit too seriously...

Then with the birth of my dear boys I had an epiphany (great word isn't it!) and came to realise that life is far too short too spend it worrying about everyone and everything. That the most important thing in my life was to love my family and friends and leave the rest to the cosmos. Now this works well in theory, but now and then I still need a reality check. Sometimes I still get caught up in trying to do too much to the detriment of my dear boys. I mean the housework never ends does it? So why obsess about it when I have two little boys asking to do "puzzles Mummy". Anyway today I was doing my usual afternoon clean up and both boys grabbed me by the hand and asked to do the "Wiggles puzzle" - so off the three of us went into the lounge room and for the next hour we did puzzles, cuddled and played. Maybe I need more of those kind of moments, when I stop worrying about the chores and just enjoy being a Mummy...

Harry in particular has been quite clingy over the past week as I had a weekend away last weekend. A whole weekend of scrapping and adult conversation. It was utter bliss. I sat with my friends Freya and Mandy and we ate chocolate, scrapped and generally caught up on each other's lives. We stayed at the Old Mill in Hahndorf in a self-contained cabin. It was lovely - but SO cold. Each morning the grass was frozen and so were the cars. But we rugged up and kept scrapping. The best bit was arriving home and having two little boys and one big boy waiting with open arms...

My last bit of news is that a photo posted on the boys' website has been used by the Boston Medical Center NICU in their latest brochure. A few months ago I was contacted by email to ask for permission to use the image and I agreed. As I looked at the image of my hand holding a tiny foot I realised just how far we have come...

Sending lots of love to all our family and friends,
Lisa

Our new beanies...

Don't you just love these beanies! The boys' Nana & Grandpa brought them back from New Zealand and from that moment the boys have insisted on wearing them (even to bed).

Just had to share,
Hugs,
Lisa

Growing up and other challenges...

I have been looking through some recent photos taken of the boys - like these ones of Mitch in March - and I have been amazed at how quickly the time has flown by. I remember hearing from many mothers that their children were grown up and out of their home in the blink of an eye and now I see my boys growing up so very fast. As they are growing up they are also developing more and more of their own distinct personalities.

I'll give you an example -
this morning after his bath Harry refused to wear his red jumper no matter how many times I told his it was the same colour as Murray and insisted on wearing his Bob the Builder Jacket...

Then Mitch became upset when I took his socks of because he wanted to wear them in the bath!

Where have those compliant little boys gone? They are long gone and in their place are two very different, but somehow very similar boys who have opinions and aren't afraid to voice them (hmmm.... who do they sound like?). I have said since the moment the boys came home that I have loved each phase of their development , but this new phase is so exciting. Both boys want to communicate so much - and although sometimes I don't understand every word, I still see their brains developing as they learn more about the world.

Another issue I have been pondering - since a recent post on Austprem - is how to deal with prejudice or misunderstanding from others when it comes to my boys. You see everyone that knows my boys and their story are full of praise for how far they have come and what happy little guys they are despite such a rocky start to life. BUT I already have had comments from other people regarding their small size and appearance - most of these comments are kind, but some are downright offensive. So as a Mum how do I deal with this problem? And how do I prepare the boys for questions which might arise later on in life?

All things to ponder as we enter the Queen's Birthday Long Weekend, which is not on her birthday, but is a lovely excuse for a long weekend.

Hugs,
Lisa

Such a special bond...

I just had to share my latest layout...
Yes! It is the photo from my previous blog entry. I must admit it is one of my favourite photos and I have made sure both boys have a copy in their own albums. My labour of love at the moment is creating albums for Mitch & Harry. They obviously share a lot of the same photos, but they are different. I made the mistake of getting carried away and getting all of Harry's photos up to date and then realised (belatedly) that of course I would have to repeat the entire process again for Mitchell. Kev did suggest I could just write in Mitch's album "see Harry's album", but I don't think that would go down too well in the years to come. I hope that when the boys are older they will be able to look at their albums and get a true sense of their childhoods and the special people that helped shaped their lives.

Hugs,
Lisa

Check out my Slide Show!

Brotherly love...

Sometimes Mitch & Harry amaze me...

Some days they fight like cat and dog...

But other times they are so kind and loving to each other...

To give you an example I will tell you the story attached to the photo (above). Mitch still has some difficulties negotiating steep inclines and tends to avoid them. Anyway one day when we were in Canberra we went to a market. They had been so good sitting in their pram while Mummy & Auntie Jenn wandered about looking at craft and yummy food. By the time they got outside they really wanted to stretch their legs and so they were let out of their pram harnesses and took off to explore the world. Jenn's little girl Mikaylah was there too, but she was happy to play close-by. Anyway, Harry took off up a ramp next to where we were sitting - and Mitchell tried but fell over. He then called out to Harry - in words that I think only the two of them understood and Harry turned around, walked back down the ramp and held out his hand to Mitch. Then the two of them walked up and down the ramp hand in hand. Such a moment of utter sweetness...

Mitch & Harry I hope that you are always there for each other and that the obvious love you have never fades. When ever you need someone to help you through life you will have each other. Hold onto that, cherish it and never let it go.

with all my love,

Mummy

Mitch & Harry update...

As the readers of my blog would know we have recently been concerned that both boys may have Cerebral Palsy. Today we saw a specialist at the hospital and he is cautiously optimistic that both boys are showing NO signs of CP. He acknowledged that they are developmentally delayed, but he says that their level of language and motor skills would still be considered within the "norm" for their corrected age. It would be remarkable if they didn't have delays due to their extreme prematurity, low birth weight and rocky road through NICU - so Kev & I are both happy that at this stage there are no glaring problems. As for their odd walking style he noted it wasn't consistent with CP - as it comes and goes and he feels that as the boys develop muscle mass and strength they will become more stable.

He also mentioned that extremely premature babies often have learning problems - which aren't always based on intelligence, but on the way the child learns. So we need to be mindful of working with the boys' kindy and school teachers to find the optimal method of learning for both boys. From my very rudimentary understanding of learning this can also be the case for many full term children, but it is interesting. Recent research has indicated that the premature baby's brain is anatomically different to the brain of the fullterm baby and this may help explain the learning difficulties and developmental issues faced by many premature babies.

What does this mean for Mitch & Harry? Life for them goes on as usual - they are happy, sociable little boys, which will hopefully stand them in good stead for the future. We are extremely blessed that despite their awful start to life they are walking, talking and developing. It is certainly not the case for all premature babies born so early. Now we have a plan for some additional therapy to assist them and us in optimising their development. While we are mindful that there may be further hurdles in the future, we are trying to focus on enjoying the boys' childhood while preparing them to be happy, sociable individuals. And they certainly are social butterflies as evidenced by this afternoon in the hospital playground - both boys walked around the play equipment holding hands with a new little friend they met and talking with other children.

Hugs,
Lisa

Just listen...

Today I was reading one of my favourite blogs Terrible Palsy and the latest post Analyze this really spoke to me. It made me stop and think about the times that I would blunder in where angels fear to tread and try and say something comforting (or so I thought) to someone who was suffering.

My Dad and I have recently been discussing this very subject - why people feel the need to offer platitudes rather than just listen. I suppose it partly comes from an inherent human need to comfort others. It may also be that rather than truly listening to what a person has to say we anticipate what we imagine they might like to hear.

I'll give you and example -
Recently we scattered my beautiful Mum's ashes at the seaside. I was obviously upset and many people came up afterwards to speak to me.

Some told me my Mum was in a "better place" -
Better than being surrounded by family and friends who adored her?

Some told me at least Mum wasn't suffering any more -
I wondered would Mum have chosen suffering over death
- chosen to stay a little longer to see her baby grandson Liam?

And some told me that Mum was "ready to go"
But I wasn't ready for her to go and I am sure my Dad and my brother
weren't ready for her to go either.

Don't get me wrong each of these statements was said with love and concern - and yet they provided little or no comfort to me...

One special friend who I have known since childhood said something to me that touched me so deeply and made me realise she understood my pain. What did she say? What wise words did she impart?

She said "I am so sorry".

Four simple words that reached out to me and gave me comfort.

I suppose there is a lesson for all of us -

Most of us just want to be heard
We don't need solutions or answers
We just want someone to reach out and show that they care...

Thank you to all of my friends and family who show me how much they care about me.
Each hug or kiss helps provide me with the strength to face another day.
In return I hope I can really listen to what you are saying
- to stop, take a breath and listen to the true meanings of your words

With much love and gratitude,
Lisa

Moving slowly forward...

After a weekend of tears and constant questions I managed to return to a semblance of normality today. I needed this time to grieve, rage and question what I had been told - but I realised more than anything Mitch & Harry need me to be their Mummy. So this morning I spoke with our lovely local doctor and he contacted our new paediatrician to request an emergency appointment. Then I spoke with our Neo (another lovely doctor) who was able to clarify the issues for me and reassure me that he had organised for us to see the specialist next week. So things are moving slowly forward.

But what helped me more than anything was the outpouring of support we received from friends, family and strangers. I was humbled to receive a message from an inspiring woman Glenda Watson Hyatt - please take the time to look at her blog Do it myself and I am sure that you will be inspired too. I also received a lovely message of support from Shelly. Two ladies I had never met - but who reached out to me with such kindness.

Now that the dust has settled (so to speak) Kev & I are just taking each day as it comes. We are waiting to see the specialist and paediatrician and are hoping that we can some answers to our questions. For now we are focussing on taking care of the boys and each other.

Today I watched Mitchell determinedly sort through blocks and Harrison steadfastly working on his puzzles and I was amazed at how far they have come in the past few months. They are happy little boys and they love life. Despite this bump in the road we are blessed to be taking this journey with them...

Hugs,
Lisa

Where do we go from here?

Well today we visited our Neo for the last time and prepared for our transfer to a local paediatrician. The Neo commented on how well the boys were growing - they are now within the "normal" parameters for their actual age for height and head circumference and are only slightly underweight for their age. He thoroughly examined the boys and then dropped a bomb-shell that it is probable that both boys have Cerebral Palsy. I am absolutely gutted. I have always felt that the boys' gait was an issue - and have been comforted by the physio and Neo's belief that there was no indication of CP. But the Neo explained that by now he would expect that their stance and gait would have improved and that their coordination would be better. So both boys are being referred to a specialist and a paediatrician and from there we will know what the future may hold. So now we have a weekend of wondering. Of course my beautiful boys are just the same - loving, affectionate and dynamos - but now there is something hanging over all of our heads.

I am just so scared for their future...

Lisa