I refuse to give up hope

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I’m hoping my son will sleep all night tonight. I am hoping he will let me dress him tomorrow morning without a full blown tantrum. I am hoping he might want to watch something other than Peppa Pig again. I am hoping I don’t get yet another call from his nursery.

Although these are all unlikely tomorrow I can still live in hope. When he seems developmentally ‘stuck’ I still hope. I live in hope that one day he will learn to talk. I have to have hope. Hope for today, hope for the future. I can’t and won’t give up on him, or his sister or life.

I remember hoping that one day I would have children. When I was asked at aged 8 what I wanted to do when I grew up I said “have a husband and children”. At such a young age I never doubted for a second it would happen. The husband came when I was 21 but the having children part was a long hard struggle. Every month I remember hoping that this was the month..but it wasn’t. Every time I bought a pregnancy test I remember thinking that this was the time. Every time a friend or a relative announced a pregnancy or gave birth I hoped I would be next. I lived in hope for so long that hoping became harder and harder. Have you ever been in that place? Hoping that things will change for the better but not seeing anything different? It is a very hard place to be in. It can be a very vulnerable place to be in too. I was so hopeful about having children that I was willing to try anything to make the dream come true. It became an obsession at times. I read books, I dreamt about it, and I thought about it day in day out. And many years later I am back in that place of hope again. The circumstances are different but the desperately clinging to hope is the same.

I have visited that hope on so many times that it has become a familiar friend now. I have become so attached to hope on my journey that I now realise I can’t go anywhere without it. I refuse to give up hope.

You see not that long ago I never thought my children would ever learnt to walk. Naomi required input from physiotherapists, occupational therapists, and a paediatrician and after a month of using a standing frame she finally took her first steps aged 2 years and 8 months. It was another four months later before her twin brother took his first steps. I am now hoping Naomi will one day learn to jump, balance on one leg and climb. I am hoping Isaac will learn to kick a ball, catch a ball and hop and jump. I hope one day they will both be able to join in physical games with other children their age. I hope they will be included.

Naomi has selective mutism. She talks great at home but seizes up in unfamiliar and stressful environments. I hope, with help, she will one day overcome her anxieties and let others hear her beautiful voice. She has so much to offer and so much to say that the world needs to hear. I have so many hopes for her brother. I really hope he learns to talk in a way that he can be understood. I hope he learns to communicate his desires to others to lesson his frustrations. I hope one day he masters toilet training. I hope he will learn self help skills and be able to live with some level of independence. I want to hope for so much more. I so want to hope that one day he might fall in love, drive a car, get a great job, get a degree. But right now my hope only stretches so far. In time my hope will grow. As he achieves more and more (and he will) my hope for his future will increase. What gave me hope when I wanted to have a family so much was medical treatments. I am so thankful for IVF. So thankful for trained doctors and nurses who carried out the treatment and midwives who successfully delivered my twins . Now I am thankful for specialist nurseries and schools, teachers willing to specialise in special needs children, physiotherapists, speech and language therapists, occupational therapists, paediatricians, and other parents walking the same road as me who all give me hope. Hope that one day things will change for the better. Hope that one day our lives will no longer be controlled by autism, neurofibromatosis and learning difficulties. Hope that we can overcome difficulties and trials as a family and face a future that holds wonderful things for us all. I refuse to give up that hope.
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5 thoughts on “I refuse to give up hope

  1. there are many of us standing by with our bucket full of hope for our kids. you are right though, cross off the tiny achievements and put the next bit of hope in place..i leave the bigger stuff out of my equation at the mo!

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  2. This blog entry was beautiful. You are one of the strongest mothers I have ever heard from, and when I say ever, I mean it. Although times can get rough, you have stuck through every moment, and continue to be the best mom you can be. It’s obvious through this message how much love you have for your children and that’s inspiring. I have no doubt that even though your daughter (or son) can not speak to you, that they feel your love and are wanting to tell you so dearly how much they love and appreciate all you do for them. Your daughter is absolutely adorable in this picture, and I am sure your son is just as precious. My heart goes out to you as you search deeper and deeper for hope. It takes a strong woman to have a heart like you do for your kids, and I hope you realize that you were chosen to be this mother, because no one else is as strong as you are. When you wish to not have complications, or to not be woken up in the middle of the night, it makes me so sad, because I am so naive about what it is like. I have no doubt your twins will grow up to be wonderful adults. Thank you for sharing your story; I am truly inspired. 🙂

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