She still needs a lot of extra help. Watching her grow from an under 2 pound tiny premature infant into the lively, happy, taller-by-the-day girl she is today, has been such a joy!

Sometimes I have to stand up for my daughter.

The circumstances vary- it could be in regards to an ill-informed comment on her ability to learn or understand something, or in response to a child making a cutting remark about Brielle.

I speak up for her, because she cannot speak up for herself. She is defenseless in that regard, and an easy target for teasing or pity.

I’m so thankful that Brielle is oblivious to words that would hurt her feelings otherwise.

She is the most innocent, trusting and happy girl I know! It really breaks my heart that there are people in the world who look down on her because of her disabilities, who discredit her abilities, who would tease her for her appearance or what she cannot do.

There are many mums and dads in a similar boat, I know will identify with this. So how do I stand up for my daughter? Well, let me give you an example.

Our friend’s four year old son came out bluntly the other day, “Brielle is silly.”

Now he didn’t say it with a smile or laugh, but really seriously and almost disapprovingly.

Brielle was scooting about the ground finding, and then flinging various toys at the time, in a group environment.

Maybe I read into it too much.

He is only four after all!

I pried for what he meant, and he repeated that she was silly.

I said, “You mean that she is a happy girl?”

The answer was no.

So mama bear mode kicked in.

I told him that we are all a bit silly.

That Brielle is a great girl, she’s a happy girl.

You see, what I interpreted he was trying to say, is that Brielle is different, she doesn’t act like a typical six year old, she doesn’t fit in with the other kids – she’s silly.

He wasn’t being mean, just expressing his thoughts.

So I gently stood up for my little girl in this instance, not wanting her to be singled out as being, ‘silly’, as she scooted about the floor with a huge smile on her face.

I am immensely grateful for the relationship that my four young daughters share.

I never tire of seeing them play with each other. Those little acts of kindness and sweetness. The sharing.

Don’t get me wrong- in a house full of girls there are plenty of cat-fights! Squabbling, bickering, little nudges, mean words and pulled faces.

Sometimes they drive me crazy! I wonder are boys like this too?!

But on the other hand, I do relish the times when they help each other, share their things and stories, give advice, play and sing and dance together, and just flat out enjoy each other’s company.

Ah, those sweet moments together, I wish I could remember and catalogue each one in my mind’s eye.

Thank goodness for photographs and short video clips to capture some of those precious moments.

The older girls really have been so good with their little sis with complex needs.

They’ve learnt so much about life, about disabilities, and about love, with the experiences Brielle has brought.

They absolutely dote on and adore her!

She’s now 6 years old, and they are as gentle and caring with her as they were when “baby ‘Elle” was a tiny, fragile baby.

A few days ago, my friend commented on how obvious the girls’ pure love and devotion for Brielle was.

She said she could see their faces and eyes light up when they were talking and playing with her.

That made me so proud and happy as a mama!

My girls are definitely more aware of others with special needs and disabilities now, since Brielle came into our lives. I’d say they are so much more sensitive and empathetic.

They understand the need for adaptive equipment, special support, alternative communication, artificial feeding, the list goes on.

I’m so glad that I have such great little helpers to daily infuse fun, laughter, love and companionship into our lives.

Brielle would not be the happy, engaging, inquisitive girl she is now, without the love and guidance of her big sisters, I know that for sure!

They would fight fiercely for each other. And so much more so for Brielle as she can’t fight for herself oftentimes.

Yes, siblings are the best. Happy National Siblings Day!

What is MY story??!?

You know, my very own, personal, one-of-a-kind, highs and lows, rain and shine, story.

What has happened, where am I going, what do I like, who do I love, all the important stuff.

Would I sugarcoat the times of heartache and pain and disappointment and stress?

Just how I would tell my story would definitely depend on who my audience is.

I would tell my story very differently to my children, than I would say, to a new friend, or to my work colleagues.

I think I would be more truthful to another parent of a child with special needs when it comes to my child, our joys and struggles, and everyday life.

In this age of smartphones, WiFi, tablets and laptops, we all seem to have our social media/Facebook/Instagram, ‘face’, or image.

We all want to project our very best images, the happy, beautiful, ‘perfect’, images of ourselves and our loved ones.

We thrive on the, ‘likes’, and compliments. But is this really real?

Sometimes it seems so removed from reality to me, like we are paying each other lip service.

We all have a deep-down, innate desire for acceptance, friends, comradery and community.

How much stronger would our communities and our friendships be if we only let down some of our walls, shared what really mattered to us.

If we were brave enough to expose our struggles and weaknesses, and had a chance to support each other in everyday life.

If we made more of an effort getting to know each other’s stories.

It’s not easy telling your story.

Telling not only your accomplishments, but your weaknesses and fears, too.

You’ll find though, it’s only when we are honest and real with each other that we can really relate to each other and find true support.

Our children need to hear our stories too.

They are so thirsty for knowledge of the past- they want to know about their heritage, mummy & daddy’s background, the funny stories, the sad stories and everything in between!

Retelling family events, personal events, hopes, dreams, past mistakes with your little ones (as appropriate to their level), strengthens your bond and is really healthy for your parent/child relationship.

And it’s a good thing to encourage them to express themselves as well.

They are unique, complex, wonderful human beings and we should all celebrate our uniqueness and personal journeys in life!

My sister and are used to being separated by many miles – when we lived in the States, they were in the UK.

Well, we each have adorable 5-year-old girls.

Our youngest, Brielle, whom I often write about, is actually a few months older than her cousin Sophia, as she was born very prematurely.

For Sophia and her siblings, this was their first opportunity to see Brielle in person (not FaceTime), and interact with her.

They were very curious about her cochlear implants, her special way of eating, her unusual modes of mobility and fascinating equipment like her walking frame and chest therapy machine.

They all were so patient and gentle with her!

Possibly a little intimidated!

Their mum and I explained things to them in simple terms.

Sophia and Brielle had great fun at the playground, swinging side by side and holding hands.

She would help her cousin walk by holding onto one of her hands while I held the other.

One day at our house, they made a game of pushing Brielle around and around in our big arm chair, much to her delight and smiles. She doesn’t talk, run about, or play conventionally as they do.

So… they figured out what way she DID PLAY, and happily engaged with their disabled cousin.

They figured out a different kind of playing with Brielle.

Brielle enjoyed the company and noise of all her cousins and sisters playing. There sure are a lot of them when we all get together.

She loves to get in the thick of activity, and never wants to miss out on the action!

It was really sweet on the cousin’s last night over for dinner, all the kids got together and recorded their own silly video inspired by the ‘Active wear’ parody.

It made my heart happy that Brielle’s sisters included her in the video too.

They valued her being in on the action.

She had no clue what they were doing, singing and acting and using a phone to record their video.

She wouldn’t have minded being in the other room scooting about on her new car or playing with her blocks, being independent and in her own wee bubble.

But it would have bothered me.

You see, although Brielle is developmentally and socially not at all at her age level, she needs to be included.

As her mama and number one advocate, I’m so thankful for my daughters, my nieces and nephews for coming to her level, and figuring out how they can include her, and figuring out a different kind of play.

I’m an eternally optimistic person by nature. I like to think that my almost 6 year old will sometime-eventually-learn how to eat.

I often get asked by family, friends and strangers alike “will she always be tube-fed?”

Well, my heart wants to immediately respond in confidence and full assurance “NO! She’s going to learn how to eat!”

I am clinging to the hope, the sometimes distantly looming hope… that she may eventually, in her own time, decide and learn how to eat and drink by mouth.

Sometimes I feel guilty or bad, that we haven’t done and aren’t doing everything we can to help her learn to eat.

Negative internal voices sometimes tease: you must be doing something wrong, surely she should be eating by now!

But in all honesty, I don’t know what more we could have done with her or are doing.

It can be downright exhausting – feeding therapy and everything that goes with tube-feeding your child.

Brielle has always depended on artificial enteral feeding, since she was a teeny premature baby weighing just 810g. Her nostrils were too small to pass a tube through for the first few months, so she needed an orogastric tube initially.

She came home from hospital six months later with a gastrostomy tube.

We’ve worked with so many specialists and therapists. She’s even been on an intense feeding program at the Children’s hospital.

We will continue to work with the speech and language therapist, and offer her oral stimulation and pureed food and thickened drinks as she tolerates.

I really just don’t really know if she’ll always be tube-fed. I certainly hope not.

Eating is such a social and fun everyday activity, and it would be so lovely to see her enjoying her food by mouth.

Oh how I would SO LOVE to do away with all her syringes, extensions, replacement buttons, and everything related.

I would love her to eat like her big sisters.

But do you know what? She may never be able “eat”. And that is ok.

We just want to give her many opportunities, and see where she goes with them, in her own time.

One thing we’ve learned with Brielle is that she will set the pace and decide what she wants to do.

Our job is to support her, love her, open up the world to her, and see how she blossoms.