I am mum to the amazing T who developed patchy hair loss just after her 3rd birthday and suffered catastrophic hair loss 6 months later, with all last bits finally falling out 3 months after that. The battle to accept this as part of our life goes on every day and I am very grateful for the Alopecia UK charity and community who all help me to make alopecia a positive part of our lives. It is a rollercoaster and a journey of constant twists and turns.

This is my letter, from deep inside of me to Alopecia.

Dear Alopecia,

This does not feel like Alopecia My Way, or Our Way. It's very much YOUR Way. It is very much You that is in control. Relinquishing control and not being able to make everything smoother for her is one of the hardest things you are teaching me. But you are teaching me and this is a journey and we will learn and we will flourish.

I don’t want to like You, but how can I not when You are an integral part of our daughter’s life? You are here every single second of Every Single Damn Day. In OUR pictures and in OUR memories. Every single milestone. But we still have OUR milestones, we still have OUR family, OUR memories. You disappear into the background compared to the joy we have in OUR lives with her.

I love her more than words which means I love You because You are part of her. Although I can see the challenges You already bring for her, the looks, the not knowing what to say. I want to fight You. But if I don’t embrace You, I don’t fully embrace her and fully embracing her isn’t something I have to even think about. So as unwelcome as you are, I welcome You into your family. We will walk together, with You, and I will walk right next to her. I will carry her when I need to, I will love her and protect her, and I will pick her up and tell her everything is OK. I will make it OK, even though deep inside I may not feel OK. And we will laugh together and fill ourselves with enjoyment and welcome questions from people, encourage curiosity – we will not hide from You. We will educate and share and smile.

The mound of emotions I must manage within myself alone can feel huge and sometimes I have to bury them deep inside me. But don’t all parents? All parents want the very best for their children and to minimise the challenges they face. So You haven’t made us any different in that respect, although You may have made us more aware.

I accept You even though it’s hard. We will face those hurdles that come from You and life in general. You bring unwanted extras such as treatments, wigs, regrowth, loss, uncertainty. We will embrace them like we embrace the other milestones in our lives. Riding a bike, learning to scoot, changing schools, growing up. Finding ourselves as our relationship grows. We will be aware of what we have lost – identity, hairdressing, bobbles, ponytails. Identity. Hair is a big part of identity but it isn’t the only part of identity. I would love for her loss of hair to not be the first thing that people notice. But they also notice her cheeky smile and grin and her curiosity and lively conversation. She will always be her if You are there or Not.

Hair can be so much more than 'just hair'. You are not life threatening but You are life changing. But so is winning the lottery and we won the best lottery ever when she came into our lives.

Sometimes I feel so ungrateful and guilty. People think she is sick, and she actually is OK. ‘She isn’t poorly, she just has alopecia’.

And she is OK. She is more than OK. She’s out there with no cares in the world, amazing and sassy and full of life. An obsession with sticks, with stones, riding trams and buses, swimming, dancing, park trips, play dates, farm days - laughter and fun. She is not letting You define her.

I will not let You define us.

Because actually everyone, every family has their nuances, their differences, their struggles – internal, external - some are more visible than others.

So, I will fight for her and celebrate her and always love every single part of her. I will fight for those who are like her and I will fight to celebrate everyone’s differences.

And she will live her best life because she is her and she is quite simply the best.

If I could give some advice to anyone who might meet a parent with alopecia or any child with noticeable hair loss or who just looks different it would be this: 

DON’T:

• Apologise for your child noticing that my child looks different – ask me about it
• Tell me everything is going to be ok – tell me that it sounds tough and ask me about it
• Look away and not know what to say – tell me that you can see my child has no hair and that you hope everything is ok
• Assume that because my child has no hair (or you see a child with ‘differences’), they are a boy (or a specific gender) – do ask me what their name is and listen when I say ‘oh HER name is..’
• Encourage yourself and your children to be curious and celebrate differences

Claire has set up a fundraising page for Alopecia Awareness Month which you can visit here.