The ups and downs of living with a teen

A letter to my beautiful Daughter

A Letter to my beautiful Daughter

Dear Daughter

Today is ME Awareness Day and I am writing this letter to you, to let you know how amazing both Dad and I think you are.

You have had a very rough year with being ill, you have had days and weeks, of not being able to get up out of bed, you have had times you have been so shattered you have not wanted to move, days where you could not walk (or your bambi days as well call them).

You have missed a lot of school through being ill, missed out on seeing your friends everyday, going into town on a Saturday, meeting up in the holidays and sleepovers, although the wonders of the internet has meant you have been able to talk to them most days.

You have had so many Dr appointments, blood tests over and over, and MRI scan, which was a new experience for both of us, consultant appointments and physio.

We have missed our girls days and afternoons out, where we used to go shopping and a drink and cake and just have a laugh and a proper Mum and Daughter catch up.

We have not been able to have days out as a family, as it would have been no fun for you, with not being able to walk far or getting too tired far too quickly.

But, we have learnt to laugh, we laugh at your bambi days, we laugh if you get stuck as you can not walk, we have laughed at new ways to go up and down the stairs. Β We have turned the sadness into laughter, which as they say is the best medicine.

We have had our tears, I have sat and cuddled you when you have been down, held you tight when you have broken your heart at being ‘different’ and wanting to be ‘normal’ and go to school and go out with your friends, we have had so many long chats about all sorts.

I have cried many tears for you, I have laid awake at night worrying about what the future holds, how I feel so helpless as a Mum as I can not make you better and can not take away your pain. I worry about you constantly, and I have fought every step of your illness and I will carry on fighting for your needs.

But do you know what, both your Dad and myself have never been prouder of you, you are a true fighter, you have your Dad’s determination and you are trying so hard, to get back to school, to be able to go out with your friends, and I know you will do it. Β It will cost me a fortune with all the promises I have made to you on what you can do when you start to have your better days and even good days, but it will be worth every penny.

Your eyes still have that sparkle on your better days to show us you are still there, you have your cheekiness and wit, and you love nothing more than siding with Dad and ganging up on me.

Although, we have always been very close, this has brought us even closer together and as a family we will support each other and get through this, the way we know best with laughter.

With loads of love

Mum and Dad




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    1. Thank you, it is hard and she has her down moments but a little chat and a cuddle and she is soon feeling better about things x

  1. You guys are just such an incredibly strong family and your daughter sounds like such a wonderful brave soul, I would be as incredibly proud as you guys are if she was my daughter xx

    1. Thank you, believe me I have not been strong all of the time, it has been hard, but never showed my Daughter any of this x

    1. Thank you, the internet has been such a fantastic thing for her as she can still keep in contact and not feel so isolated x

  2. I can’t imagine how difficult it must be for you and your daughter, I’m glad that you are still able to find happiness and laughter though πŸ™‚

    1. We have always had a laugh so it just became natural to laugh our way through her illness, it also keeps her spirits up as well x

  3. This is so beautiful. Sometimes it is easier to write down words rather than try and fight through tears and remember things you had thought of beforehand.
    Keep fighting together x

    1. Thank you, we will continue to fight and I will continue to fight on her behalf and know one day she will be better x

    1. Thank you, I think it was harder to start with than it is now, although it is sometimes lonely and very hard to not feel down x

  4. Such beautiful words! I love how you try to make the best out of a bad situation. You have to stay strong and have a laugh even when it seems like the hardest possible thing to do πŸ™‚

    1. Thank you, I am a firm believer of laughter is the best medicine as it really does lift the mood, and it helps with my Daughter, and we try to laugh about her condition rather than feel down about it, and it seems to be working with her mood x

  5. Such a beautiful post. Your daughter is way too young to be going through things like this not that anyone at any age should. I’m sure with your support she’ll win xx

    1. Thank you, we are looking for that bright shining light at the end of the tunnel, and we know one day we will get there x

  6. Totally beautiful letter, brought a lump to my throat. Your daughter is obviously a total super star, will be a wonderful moment when she one day reads it X

    1. It is hard, but if she is having a bad day, she has work she can do on the computer at home now, so we just do a bit at home, we did maths on Friday and I learnt something, so is good for me as well x

  7. What an absolutely lovely letter to your daughter. I wasn’t really aware.of this condition until in read your posts. So you are doing a good job on raising awareness

  8. It is amazing how support you have given her as a family and how you continue to encourage her even when she is so sick. I hope she gets better as soon as possible but I know it will be a long road to recovery x

    1. Thank you, we do nothing special but keep her going, she has had a rough week this week and a bad day today, but hopefully tomorrow will be a better day x

    1. I did get a bit teary, but it is hard especially on her bad days as I have to be the strong and happy encouraging one x

  9. What a lovely letter in such difficult circumstances. You sound like a very strong family, especially trying to make the best out of the situation. Hoping your daughter has a future of better health.

    1. Thank you, we are a very close family and it does help, hopefully we will start to see more better days than bad days x

  10. This is a really beautiful letter πŸ™‚ You’re right to be proud of your daughter for being strong in face of this terrible illness and I hope that your encouragement keeps her afloat!

  11. Oh hun this is so beautiful. As you know I have followed your journey so far, and I think you are incredible – as is your daughter. I hope the future is brighter for you all. Huge hugs, Kaz x x

    1. Thank you, you would do just the same for your kids, it is so hard at times though watching them in pain or ill and not knowing when they will have a better day x

  12. Aw this is a lovely letter to your daughter. It makes me sad to hear of the difficulties some families face. I met a lovely lady on the train today whose little girl is only 18 months old and was on her way to have a brain scan as she has a large blood clot on the brain and it made me hold my kids that little bit tighter for a little bit longer tonight, they are so precious. Hugs xx

    1. Thank you, we all take health for granted, and it isn’t until something happens or you read or speak to someone who has health problems and it really makes you think and makes you so grateful.

  13. What an emotional letter. I think as parents one of the hardest things can be the helplessness we feel when our children are poorly. To have a child with a chronic illness must be so hard at times, with the whole family affected. But it sounds as though you have an amazing relationship and I am sure that you must be so proud of your daughter too. Sending lots of love- thank you for sharing your story xx

    1. Thank you, the helplessness is very hard but we do try to laugh our way through a lot of it, she has such an amazing personality she really does amaze us.

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