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

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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

The boys first day at child care

Today Mitchell & Harrison had their first day at child care. They were very excited as we drove into the carpark, but Harry was a bit sad when it was time for Mummy to leave. I went off to get a haircut and then spent the afternoon watching trash TV and reading trashy mags. I rang to check on the boys a couple of times and they were having lots of fun and were enjoying all the new sights and sounds. Then I arrived to collect them and Harry really didn't want to come home. Mitch however asked for a cuddle straight away and didn't let go until he was safely in his car seat. By all reports it was a successful first day and they played well with their new friends. So same time next week we will be back to "kindy" for the day. It makes me realise how quickly my beautiful boys are growing up. They are sociable and affectionate and reasonably confident - I just hope that Kev and I have prepared them for the world outside of home.

Hugs,

Lisa

Blogging against disablism - the world through my boys' eyes...

Imagine looking at the world through the eyes of your child...

Imagine only seeing the person - rather than their disability...

Imagine loving everyone with a kind and open heart...

Imagine...

I had dreamed of being a mother for many years, but I never dreamed the life lessons that motherhood would teach me. Having two beautiful boys has opened my eyes to a whole new way of experiencing the world.

Mitchell and Harrison have many friends and make more friends wherever they go.

They smile equally at the young and the elderly. Sometimes they blow kisses.

They love their Great Nana's "car" (wheelchair). They love giving Nana kisses. And they talk to everyone in the nursing home from the nurses to the residents.

They love their Uncle Trent. They don't care that he has Down Syndrome. What matters is that he enjoys playing with them and has the best collection of DVDs!

They have friends with feeding tubes, wheelchairs, oxygen tanks and other equipment...

BUT this is of little interest - they just want to play and have fun.

They happily talk with anyone they meet. They love everyone with an open heart.

Their world isn't tainted by prejudice...

What a wonderful way to live...

If only it could be like that always...