Before I start, I want to mention, I will be writing about myself and Hope, it’s not my place to comment on how other people deal with situations or how they feel. This is my thoughts, my feelings, my story.

Hello again, Ben here, it’s Heidi’s week off from writing, I have my family size packet of cheese rings next to me just waiting to be devoured so let’s jump right in. Last time I wrote about acceptance and grieving, this time I want to write about strength, weakness and something I call the push.

Having a child is hard, having twins is harder but having one with a disability; there are days we just fall into bed, the house a mess and we sleep! Over the last two years, it has become clear that I have many weaknesses and faults, that is one thing I won’t deny. However, having Hope in our lives has shown I have a strength I didn’t know I had, buried deep inside, waiting to burst out. This strength silences all the weaknesses I have, making them insignificant. Why do I have it? Because I need to have it, for me, for Hope and the rest of the family. I have to have it for the days where it’s just plain hard!

I want to start with something we all have, yet struggle to admit. Our weakness. When I think about our lives, we all have weaknesses in one form or another, but we also have that hidden strength as well.

Obviously, Hope has a physical weakness in the form of low muscle tone, all babies with Down syndrome do, it’s an area that we need to continually work on improving for many years to come. Sometimes it’s hard not to see how much she struggles when Alexander is reaching all the milestones and she isn’t. I know I’ve gone home in tears from Physio many times because she’s just not improving.

I remember, when she first started to commando crawl, the metal skirting that they put on the outside of the carpet, was too much of a challenge for her. She physically could not move over this small metal line.

Lifting her head for more than 2-3 seconds off the ground would exhaust her.

More recently, Standing without leg splints, her legs would buckle and would collapse under her.

We will be continuing to work with Hope to conquer all of these physical challenges.

This is our week.

Monday – Occupational Therapy and Speech Therapy

Tuesday – Daycare

Wednesday  Daycare and Speech therapy

Thursday -Daycare and Dietician

Friday -Physio

Saturday – Swimming lessons

Sunday – rest.

At the end of the week, we are all physically exhausted! Once you add in full-time work for both parents, spending time with Hope’s 2 brothers and doctors/specialist appointments. There is no time.

There are days where we are constantly either working, travelling to and from therapies or doing home packages, I get the feeling that our family life suffers. Before I know it, it’s 7 pm and I haven’t spent any time with Hope’s Brothers and they are heading to bed.

But it’s a necessity at this moment in time. It’s the balance of weakness (how I’m dealing with a home life balance) and strength (Preparing Hope for life, ensuring she doesn’t get left behind).

Another huge weakness going through this journey was my mental health. This part only a handful of people know, I don’t exactly scream it from the rooftops.

During the pregnancy, I was diagnosed with “very high levels of Depression” and “extreme levels of anxiety”. I was put on medication and for the next year, I felt like a failure, I felt shame, I felt weak and worst of all, I felt embarrassed that I had to take a pill to “cope”.

Should I be medicated because of my emotional state about this pregnancy?

That was my thoughts regarding the stigma about mental illness.

Looking back, I was struggling, I can see that now, but I asked for help, that is when that hidden strength started to reveal itself. It’s ok not to be ok!

Now enough with the doom and gloom and let’s move onto strength, and honestly, I can go on and on and on about strength with myself and Hope. Hope has been a fighter since the very beginning, if you have read Heidi’s blog, you will know how much she had endured in the first few months of her life. She hasn’t stopped fighting!

Hope’s Physical ability, while slow, has begun to improve. We work hard to reach milestones, but Hope does so well. She takes everything I throw at her, gives it her all and just keeps going. I know it’s tough for her, I see it in her eyes, I see it on the exhausted look on her face and I see it as she collapses into bed after a hard physio session.

On many occasions, I have said to her “you have had heart surgery, what’s another 10 stair climbs?”

I honestly think I see her eyes roll, the sassiness is through the roof with this girl, but she does it. She does it because she knows she has to.

Our family bond is strong, I know I mentioned it as a weakness before, but with weakness comes strength. I am so blessed to have a wife that knows when I’m struggling, or am exhausted or haven’t seen the boys for a while. Our family bond is strong and grows stronger every day.

Lincoln, Hope’s older brother, has strength, empathy and compassion like nothing I have seen before. Lincoln understands that on my days off, I won’t be home a lot because I’m out at appointments. For a four year old to understand and accept is massive.

At the beginning of the year, when Lincoln was at preschool, the teachers were asking what they did on their break. The kids were telling stories of holidays, family gathers etc, when it came to Lincoln he said:

“I went to the beach, we went camping, we had a huge tent, we even had our own bedrooms” then continued to tell a story about his adventures at Christmas. Except, none of it happened.

In reality, he spent day 3 hours a day travelling back and forward to Westmead hospital where Hope was admitted. Not once did he complain or sulk or asked why, he just did it. Lincoln is such a good big brother, the pride I have in my heart for him is infinite.

Lastly, while on strength, I want to acknowledge that we have a fantastic support circle around us, Friends, Hope’s therapists and loved ones. Each and every one of them gives us so much strength to keep going. There are no words for my gratefulness for them being in our lives.

And finally something I like to call “The Push”. It’s something I have to do for Hope, I push her so she knows no boundaries, that she can do anything she puts her mind to.

Imagine a coach, cheering you on, screaming for you to go harder, faster so you win the game. That’s what I put the push down as, except, I’m not the coach, I’m the dad. This isn’t to win a game, it’s a race to the next milestone. This doesn’t just last 90 minutes, this is every second of the day.

I push Hope now so she learns to push back when she needs it!

Recently, I spoke to Hope regarding learning a new skill while we were in a group setting, obviously, I won’t say where or who It was, just know that I wrote a very stern email to the manager and I expressed my disgust in a very firm but polite way. Can you tell I’m still upset about it?

“Hope, if your brother can do it, you can too”: Me, the loving father.

“Well, that’s not fair you need to be more lenient, you know she is delayed”: Jerk Face who I hope got fired.

Next time I write, I will be writing about the topic of “Society and it’s views” but for now I will leave you with a letter I wrote to my kids:

Lincoln, Alexander and Hope, when you grow older I hope you realise:

When I discipline, it’s because I love you.

I won’t hide it when I cry, so you can see men DO cry.

I will push you to achieve more, because I can see how far you can go.

I will sleep next to you when you are sick, to show that you are never alone.

I will try to move heaven and earth for you, to show you that it certainly is possible.

I’ll be hard on you, so life isn’t hard for you.

I will love you with all my heart, to prove that your love is endless.

I will show you respect, so you know how to respect others.

I will constantly say “I Love You”, so you when your older, you can have this feeling with your children.

You may think I’m mean and unfair at times but when you are older, you will understand. You will look back to see everything I do for you is out of absolute, pure love.