The Mumbelievables #4: Haanagh Smith

This week’s Mumbelievables interview is a very special one. Haanagh and Mike Smith are long-time friends of my husband Tim’s family, and when I began this series I had Haanagh in mind as someone I’d be honoured to feature one day. I’m so grateful to her for agreeing!

I wanted The Mumbelievables to be about celebrating the stories of amazing women, who happen to be mums, doing extraordinary things with their lives that we can all be inspired and offered strength by.

Haanagh’s beautiful family is a constant source of inspiration to us and she is, well – I’ll let you judge for yourselves – but she’s a powerhouse. Enjoy her interview!

I’m Haanagh. I live with my husband, Mike and three children, Harry (12) and identical twins Zachary and Reuben (7). I suppose my ‘trade’ is a midwife…up until the twins were born I was working as a community midwife which I absolutely loved. I had wanted to be a midwife since I was at school, so once I had done my degree and qualified as a registered midwife, I felt I had achieved my goal. It was nothing short of a privilege to support women through a very poignant time in their lives, in the happy moments and the sad ones. I loved to watch families be created right in front of my eyes.

At home, Mike and I wanted to have another baby to complete our family. We had the happy news we were expecting identical twins and we relished our forthcoming arrivals, making Harry a big brother. But things didn’t quite work out as we had hoped. At 29 weeks of pregnancy our twins were born far too early. From that very moment our life changed unrecognisably, although at that point we didn’t know how much.

For as well as the challenges prematurity brings, Zachary contracted meningitis twice in the first 2 months of life, and Reuben had a massive bilateral brain haemorrhage. We began the day to day hope and desperation for them just to survive.

Fast forward back to the present day, I am happy to say they did. They survived against the odds, although in time, Reuben was diagnosed with Quadriplegic Cerebral Palsy and the many health complications that come with this condition. Zachary was diagnosed with Ataxic Cerebral Palsy, learning disabilities, brain and spinal cord abnormalities and is severely deaf. However, without doubt they approach everything in life with a smile and determination that’s a joy to be around. They are 7 year old warriors whose zest for life is infectious.

As a result of their life long disabilities, I left my role as a midwife and became the twins’ 24/7 carer. Although I adored my job, there was no question that my children needed me to support them, care for them and be their advocate as we approached a new world of disability we had been propelled into.

Because of their disabilities, life is now very different for us as a family. When you are a parent of a child with a disability, no one tells you how to handle this. You need to find your own way into the world that you have been propelled into and to handle this the best way you can. As well as maintaining their health, for me it’s also been about ensuring the children are happy, to optimise their childhood and despite their diagnosis, to experience things other children do. I want them to find the fun amidst a life consumed with clinic appointments, hospital stays, medical treatments and therapies.

I now spend my time dedicated to the boys and getting them what they need to fulfil their lives. I also provide support to other families emotionally should they contact me after diagnosis of their child’s disability. I enjoy writing about my role as a mother in this life I now lead, and write a blog to capture poignant moments and feelings. I also do voluntary public speaking roles to discuss my experiences of this, which is something I would have laughed at if ten years ago you told me that’s what I’d be doing! I often smile at how your path of life can take a turn.

Who are you? What makes you, you?

I think of myself as a different person since the twins have been in my life. In many ways, I’m the Haanagh that existed before the twins came into my world, and I’m also the Haanagh that has evolved since. Those two Haanaghs are slightly different.

I’m still a daughter, niece, sister, wife, mother and friend. I still relish the company of those I love, regularly cry at anything I watch on TV, like a cup of tea that’s builder’s strength and enjoy becoming lost in the world of theatre when I have the chance to go. I still love all things sparkly, glitter, shoes, prosecco and unicorns! I love a chick lit novel or a TV crime drama.

As a person though, I just think I have become a better version of myself since I have been touched by disability and the lessons this has taught me. I have a far better grounding now of perspective and importance and the things that really matter to me and my family. I am lucky that I have Harry and the sheer joy he brings to my life. I am equally lucky I have Zach and Reuben who were dealt a very difficult hand in life, yet who have shown the world how to cope with a traumatic roll of life’s dice. I think my blood must be made up of 100 per cent pride.

If someone else was to sum you up in five words, what do you think those words would be?

Maybe…..

1. Determined
2. Stoic
3. Loyal
4. Compassionate
5. Strong

I think these probably would be the sort of thing, due to the nature of my life now and how I need to be advocate for my boys. However, my husband would probably throw in Stubborn (! I can’t deny it….), and shoe-obsessed!

Who are the three most important people in your life, and why?

Hard question, as obviously my three boys would take all of those spots! So I am going to unashamedly cheat here and say:

1. My family. That’s all of them, including my mum, dad, sister, cousin etc not just my husband and children. They formulate the skeleton of my strength and keep me going when things get tough.
2. My friends. I am one lucky girl. I have lots of incredible friends who ooze fabulousness. They are ready to listen when I need them to, but equally provide the fun factor that reinstates a smile. I love how each of them are so different, but we share a common goal of support love and friendship for one another. Everyone should have a girl tribe.
3. Team Twins. This is my affectionate nickname for all the professionals that are involved with the twins’ educational or health care. Raising twins with a disability is not a one person job. It’s a team effort that extends out further than family. Yes, Mike and I may be at the helm, but it’s a ship that’s steered with the help of a wide circle. Therapists, teachers, carers, Drs, nurses, just to name a few. You can imagine how many specialists have to be involved in the care of children as complex as mine, and we have some incredible knowledgeable and excellent ones on Team Twins! I am grateful and respectful of their input, however big or small a role they play.

What are the three most important things in your life and why?

Probably my sense of calm in a crisis (which there have been several!), my sense of humour (which I have been required to call on more times than I care to think!), and my support network. When you put these three together, they are a winning combination in my way of life.

What does confidence mean to you?

I think for me, it’s being comfortable in my own skin. To know that I have faith in myself and in my actions and beliefs. If I can hold my head up high and know in my heart I think I am doing the right thing, then that gives me confidence in myself.

How do you feel about yourself now compared to before you became a mum?

My pathway into motherhood hasn’t been a straightforward one. There have been the lowest of times, the blackest of days and nights when I would be distraught with the grief of what happened. But taking the lows means you can also enjoy the highs. Of which there have been many. The grief doesn’t just lie in what you have gone through, but lies in what could have been. I grieved for the children that the twins should have grown into, the adults they would have become, the family moments we should have experienced. In many ways, your hopes and dreams wither.

But after a while, I learned that there was so much beauty in what we had. The grief started to dissipate and our lives became about what the twins could do and not what they couldn’t. We started to forget the ‘what ifs’ as they just consume you.

I suppose therefore that I feel I can cope more as a result of motherhood. I no longer sweat the small stuff and accept what I cannot change. I learnt the value of what was important to me and being a mother, with the challenges we have, made me take the biggest dose of perspective I will ever be prescribed. There has been nothing more life affirming and it’s been a testing, rewarding, painful yet grateful lesson of love.

What advice would you give to someone who doubts herself?

That old cliché, ‘you’ll never know how strong you are, until being strong is the only choice you have’, is more true than I ever previously gave it credit for. It’s almost my mantra! If someone had showed me in a crystal ball what we would have to face with the children, I never thought I would have been able to cope. But as a general rule of thumb, it’s important to know that you can rise to any challenge if you believe you can. Things won’t always feel so raw, things will become clearer over time, so if you buckle up and follow your heart, things will be ok. You are stronger than you think.

What’s the most important lesson you’ve learned in your life so far?

Follow your gut.

That’s the best thing I have ever done and continue to use daily! My gut so far has never ever let me down. Go with your instincts and do what your core tells you is right. Along the way, you may make mistakes. I have made some corkers. Essentially though, it’s a learning curve and makes you into the person you are today. Don’t beat yourself up when things go wrong or you slip up. But, if you follow your gut, you generally won’t go too far wrong.

And finally, where is your happy place?

Home! When the twins were born, I didn’t know if they’d live or die. As time went on, and it became clear how disability would affect them, I was scared. I was scared I couldn’t be the mother they needed me to be. My husband said ‘Haanagh, we just need to take them home and all we need to do is love them’. That’s the best advice I ever received, and that is exactly what we did.

We cherish them all with love and laughter and when we shut the door on the world and when I tuck them all up in bed at night, I know they are happy and safe and we are on the right path. I don’t know how long that path is, or where that path will take us but together, we are doing just fine and home is where our hearts are!

You can follow Haanagh’s inspirational journey and gorgeous family at www.haanagh.com.