30/09/2015

Mummy will your M.E ever go?

My daughter is exactly 6 & a half today which is something to smile about but this morning my heart broke a little bit. We were having a snuggle for 5 minutes before she got ready for school & out of the blue she asked me if my M.E will ever go. I told her I didn't know but that I hoped so & she told me she hates it as I can't do much with her or go out to many places & it isn't fair. Ouch.

As you may know I try to remain cheerful & try to be positive despite everything, but it totally got me & although I tried to give her some reassurance I had tears streaming down my face. I told her the stuff we do together is still nice & that this is just how it is. She said she just wishes we could do more stuff together. I couldn't agree more.

I said we would have a chat after school & write a list of some of the things we could try to do. My carer took her to school for me & the tears flowed. It isn't fair, she's so right. The pangs of envy towards other people who can do "normal" stuff are always there. I think that's understandable when you have so many restrictions & wish you could do the stuff you always took for granted.

I get so wiped out so quickly that when we go out I may not be up to driving back. Safety has to be a priority & obviously with such poor mobility I can't really walk anywhere either.

I usually have a carer with me when my husband is working & they collect my daughter from school so I am up to doing stuff with her rather than being too wrecked from the school run. However today when my carer came she was really unwell so I sent her home. The exclusive mummy time my little girl had said she wanted was happening quicker than I had planned!

I had promised her yesterday that we could bake & she never forgets stuff so it was the first thing she asked. As she can pretty much do it herself now I got everything out & she did all the work! Apart from a few bits like putting them in the oven, she did such a good job.



The finished results made her (& me) so proud! They tasted delicious too :)




After the baking I felt really tired so I had a lay down on the sofa & little Miss watched tv while she ate her tea. Then she joined me & we snuggled. My mum popped in after work & helped her have a shower so I had a quick rest.

I decided it was time for the chat & we started writing a list of things we could do. A few ideas we had were going for a hot chocolate at a local café, an ice cream at our favourite Italian deli, finding out about hiring a scooter at the park & going for a ride! Conker picking, finding leaves to do Autumn craft stuff with & going to a park to draw pictures. She also asked if we could go & watch a show at the theatre so if we do that I will have to have someone with us to push the wheelchair but I think it would be something we'd definitely both look forward to.

I am going to do a treasure hunt on our street too. I haven't told her about that one yet but I know she will love it.

I asked her what the main thing that she wanted was from what she had told me this morning & she said just to spend more time with me on her own. She said (& it really made me laugh) that because her daddy takes her out and about a lot that it's/he's a bit annoying!! She said it doesn't mean she doesn't like him, just that she wants to spend time doing stuff with me too. Bless her!!

I feel the same as she does & our afternoon today made me realise I'm not as useless as I sometimes feel.

If anyone has any suggestions for stuff we could do please leave them in the comments.


Thanks for reading :)


Ali 
xx

12 comments

  1. Ali this broke my heart a little on your behalf. It's so unfair that your health restricts what you're able to do with your lovely daughter. I hope with every bit of me that you do reach that 'one day'. Sitting down and writing the list together was such a beautiful idea and a real testament to your brilliant parenting. The things you came up with sound amazing and I'm sure you will both have a lovely time doing them, building memories you can cherish on the more challenging days. Sending you a great big hug. Faye xxx

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    1. Aw Faye ♡ Thank you so much lovely, really means a lot. I left her a note last night for when she woke up saying how proud I am of her & that I love her, made her so happy! She's my everything & I'm looking forward to having more Lucia & mummy time :) xx

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  2. I couldn't agree more with what Faye said. I hope that day comes too when you can do more with Lucia and be free of this illness. Lots of love to you both,
    Emma Xx

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    1. Aw thanks so much Emma. You're such a lovely friend & I hope we all get our cure one day. Lots of love xx

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  3. I have been thinking of you all so much since I saw your facebook post. I cannot imagine. You are truly an inspiration to so many of us and I feel you being such a wonderful mum to your little girl gives so many of us hope for the future. I love the idea of writing a list of things you can do together! I'm sure you are hurting even more than usual today but I just wanted to send you some love. You give motherhood your absolute all - it's clear to see from all of your posts. I hope you're also feeling proud of yourself for being the very best mother you can be xxx

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    1. Oh Anna I thought the tears had stopped but nope, here they are again! Thank you so much, means so much xx

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    2. Oh Anna I thought the tears had stopped but nope, here they are again! Thank you so much, means so much xx

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  4. Perhaps you could do her nails or have a general pamper afternoon, or get crafty like making art for her bedroom wall (Pinterest can help here) or cutting out pictures from magazines and making a collage. I bet she'd really enjoy anything one-to-one no matter what you do x

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    1. Sorry just seen your reply. Thank you! Pampering is a good idea, I usually do her nails but face masks & massages would be good! Also the collage idea is fab, she'd love doing that so thank you x

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  5. I find going to the cinema easy. As well as playing Orcgard toys games at home. Once a morning and once per afternoon.

    Amazon sell a book called "What is M.E? A guide for children" by Hayley Green. Subsequently, my children 'get it'.

    And I'd recommend "How to talk so kids will listen, and how to listen so kids will talk", by Adele Faber. As we excel at communicating well :-)

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    1. Thank you for your reply :) I am not so good with the cinema but we watch stuff at home & pause it so I can stop for a rest!! Will look into those books, thanks for the suggestions x

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