Me Awareness Week – A Letter To My Daughter

Me Awareness Week - A Letter To My Daughter

Following on in my week of posts dedicated to ME for ME Awareness Week.  I am finishing with a letter to C.  She goes through so much and knows how proud we are of her and how much we love her, but at times it needs to be there for her to see if black and white.

Dear C

You have been ill since you were 11 years old.  At first we just thought you were getting used to Secondary school. It was new to you and a lot harder than Primary School.

If only we knew what lay ahead, nothing prepared us for when you had your first crash and the start of our new journey of living with a Chronic illness.  We have had a lot of tears and also a lot of laughter.

The early days

At the start when you collapsed as your legs would not work, or you were unsteady on  your legs.  We would call them your Bambi days.  Sometimes I would find you in a heap on your bedroom floor as your legs had given way.  Luckily Dad was home a lot of the times this happened, and he would pick you up and pop you back on your bed.  Unfortunately, he was not always home and it was left to me.  We ended up laughing so much as I tried to get you back into your bed.  Probably not the most conventional way but we managed it, no matter how bad the days were we always found a way to have a laugh.

The heartbreak

I have lost count of the times I have held you while you broke your heart and cried, telling me everything that was worrying or upsetting you.  How much you wanted to be normal and wanted to go to school.  Where I would fight back my own tears as my heart broke alongside yours without showing you.  

I wish I could have waved a magic wand and made this happen for you.  This illness has taken away your life, your education and your friends.

Your talent

Since you were little you have always had such a love of art, and one thing that you have not lost is your love of drawing.  It is something you can pick up and put down.  I know I tell you all the time but your pictures are amazing.  I am so very proud of you and you have such a talent.

You have an online friend who you have been talking too before you became ill.  She is the one person who has always been there for you, every day she is there for you.  You have never met but she is going to be close to us in the summer.  Your face when you told me and asked if you could meet her was full of joy.  How could we say no. 

Meeting a friend

Last year, you managed to meet up with your friend, how I kept the tears at bay I do not know.  You both have your own medical problems and have both lost education and friends.  You both looked so happy chatting face to face.  It did affect you days after but the pain that followed was worth it for a few hours of normality.

Three years ago you found out that you were going to become an Aunt.  Your face said it all, you were not impressed.  Since becoming an Aunt, your world has changed.  You adore the role and the bond you have with L is amazing.  There really is some special bond you two have and your face lights up whenever you talk about her.

None of us know how the future will go, but we will do everything we possibly can so you can lead a normal life. At the moment we are trying to sort your education for next year and we will get you that and prepare you for your adult life.

We love you so much and are so very proud of you.

All my love

Mum xxx

Me Awareness Week - A Letter To My Daughter

You may also like

22 comments

    1. Thank you she does know all this and we are extremely close, she is very guarded on her illness but hopefully she will see this one day

  1. This is such a heart felt post, I love how much support you have given and will continue to give to your daughter, you both have a strong connection.

  2. Quite an amazing and heartfelt letter. I’m glad that you guys are close and that she has a very supportive mom by her side.

  3. This is such a lovely letter and you must be so proud of your daughter as her whole life changed, but it’s so nice that she managed to meet her friend last year x

    1. Thank you, it did change in a blink of an eye really right in front of us. This is why I have been writing about ME all week raising awareness as it is a misunderstood illness. We are very proud of her she really amazes us. That day is something I will remember forever one day of normality

  4. What a beautifully written letter, I can’t even begin to imagine how hard it must be for you all but it sounds like together you guys are unstoppable and that’s pretty special. So glad she got to meet up with her friend too, it sounds like they had an amazing time!

    1. Thank you, it is hard but it is daily life so the normal for us really. The day she met her friend will be with me forever she suffered after but was so worth it x

  5. You sound like my mum. We are extremely close and she has fought hard to get me the help i need. I have ehlers danlos syndrome but also fit the m.e criteria. The exhaustion is cripling. However i went to uni when i was about 22. I studied design. Because it didn’t have set lectures, i was able to go to my room on campus to sleep and then i went back to class. My tutors were very understanding. Your life will be different but you can achieve anything, just in a different way. You’ll get to appreciate the little things in life that so many people are to busy to notice. Never give up hope. x

    1. This is what Mums do we fight for our children, and in some ways having an illness gives parents and their child a stronger bond. I am so glad you went on to study this is what we tell C there is no set time limit for anything x

  6. I read this with tears streaming down my face – it resonated so much. I was C. Diagnosed in 1998, aged 10.

    For me it actually ended up being a misdiagnosis, but we didn’t discover this for many years (I was…gosh, about 19 or 20 I think?) and so growing up AYME and the “world of ME” were a massive part of my life and I still keep some of the links.

    If you ever want to talk I’m always happy to listen. It was a long time ago now, but I have the “other perspective”! (and I still live with enormous energy problems and severe disability)

    1. I am so sorry you went through this and had a misdiagnosis, I know just how much that stole from your life and your teenage years. I am glad they finally found the right diagnosis and like wise am always here if you need to talk x

  7. What a beautiful read! It is really hard for you both to live with this, there is no greater pain for a mother watching her child suffering. I wish you would find something that would ease her pain.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.