Sunday, 14 February 2010

It hurts like hell :>(

When we received Emilys diagnosis I can vividly recall our conversation with our Genetist.  I can remember saying to her that with Emily being so young we/she could still get away with her disabilities as she was still like a "toddler" and people would not judge her for not speaking or for tumbling alot, as that is what "normal" toddlers are like anyway.  I recall voicing my concerns that as she got older her disabilities would become more obvious and would take over her "cuteness" of just being a delayed toddler...

I'm starting to see this is beginning to happen now - AND IT HURTS LIKE HELL.

I have noticed that children her same age DO see her as different and not all children know how to deal with this - so she is excluded by some.  I don't blame those children of course, it doesn't make them "not nice" children - at the end of the day Emily IS different to them and they will find it hard in their own little minds to make sense of why Emily cannot do the things that they can do so easily ~ like talk, draw and paint without a grown-up helping, dance, sing, go to the toilet, take off & put on her own coat and countless other things - the list would go on and on......

Only this morning Joshua (her big brother - age 6 1/2) came down the stairs and said to me ~ "Mum I have had a brilliant dream, Emily was talking and playing just like me!!"


I do try to put a smile on my face most of the time but it doesn't mean that I'm coping with Emilys diagnosis. I have fears that only parents of a special need child would ever understand.  Most days something hits me...... it may just be an old dear asking Emily her name of which I have to answer for her, it may be seeing another child looking at Emily as if she is odd, it may be party invitiations being passed about of which Emily is not invited, it may be the frustration of trying to sort out appointments with speech & language therapists the list does go on.

Most days there is something - THAT HURTS LIKE HELL...


  1. with you all the way tracey. Hugs
    Katie xxx

  2. I know the feelings you are having. Though putting our faith in's not always easy to see the other kids their age doing things that our little ones can't. I secretly wish she could do that....and then I brush myself off and remember what a special gift she is & we will just go on and take things one day at a time.

    Love & Prayers from Pooh's Corner

  3. With you all the way Tracey, Vikky has those feelings most days too. Christine xx

  4. Hunni everytime i read ur Blogs My Heart melts, Look at ur Beautiful Daughter. She puts a huge smile on lots of Peoples faces. Your always gonna wish u could awake from that dream and it be a little better because you want for her what Josh has and what most take for granted. But when u awake in a morning and Emily sees ur face ur the one she smiles at first because ur the one who helps her to communicate and do all the things that maybe, hopefully she will do herself one day. Emily has got one thing most children could never have and thats u and ur hubby and her big brother Josh who love her so so much.. And thats for what she is.. Keep up all the hard work hun. xxxxx

  5. I think you are fantastic and you should be proud of the way you care for Emily and fight to get her the care that she needs. Emily is a credit to you as is your litte boy xxx louise kirby xx

  6. Tracey,
    Thanks for following my blog. I am very glad that you found me!

    I just want to say that the way that you are feeling is how I have felt in the past. I still have times where I feel this way and it does hurt so badly.

    It does get easier as time goes on. My daughter is almost 8 now and we have been through so much. I have found that when I am feeling this way, I focus on how precious my daughter is and how very much she is loved.

    Be kind to yourself and allow your feelings to come and go. It is okay to feel this way, and these feeling will go away soon.

    Take care, Debbi

  7. I know exactly how you feel. My Amelia is at Kindy, shes 4yrs, and everything you just described is/has happended to her. It breaks my heart. But I love her anyway.