Monday, July 12, 2010

Some days I forget...

Most days I seem to forget that Dylan has WHS.  I can go on about my day as if nothing is wrong or as if nothing is different about my life.  Then there are other days when I seem to be reminded constantly.  Even being pregnant again and knowing that everything is "normal" with this pregnancy makes me worry about our upcoming addition and the impact he will have on Dylan.  I find myself thinking, "how soon will the new baby surpass Dylan in growth and development?"  I am reminded when I am out and about with him and someone approaches the stroller, talking to him and he looks off the other way, not able to engage at all.  I usually say "oh, he's just tired."  They then smile and walk away.  Even when I am around friends and family I find that the conversation usually shifts to how Dylan is different.  I know that they don't mean any harm and love him terribly, but I wish that everyone could just accept that YES his head is a little flat, YES his eyes are always goopy and tearing, YES he may not respond to everyone, YES he is tiny, YES it is difficult to feed him, YES he is floppy but please try to remember that those comments hurt me and make it a constant reminder to me of Dylan's syndrome.  It's definitely not easy and I wish everyday that Dylan was born with all of his chromosomes intact but there is nothing I can do to change any of it.  I wish that we could all see past it but I know that this is probably not possible.  I seem to find myself deeply saddened and in a way depressed by all of this and I wish that I would feel differently and that the sad days would just go away.

I wish that the title WHS would release me from all of these sad feelings.  I want to live life happily without this title hanging over.  When he was first diagnosed I remember feeling like I was dying inside.  My heart was so broken I didn't know if I would ever recover.  I couldn't look at Dylan without thinking about WHS.  I know now that I will always be aware of its presence in our life and that's o.k. because there is no changing it.  WHS has brought a new meaning to my life - it has awakened me to a life that I never imagined I would have to live.  This has been a good thing. 

I don't want our family to be looked at as being "different," so that is why I can usually brush off comments, questions or looks and pretend that it doesn't bother me.  I wish that I could just say, "yeah he has WHS, so what" and move on.  I think that I am finally getting to that place but, it's taken me a long time. 

Dylan is now 16 months old and he is my little ray of sunshine.  When he smiles and his beautiful blue eyes shine he can light up a room.  When he squeals with delight and kicks his legs and flings his arms so hard that his whole body jumps it makes my heart go pitty pat.  When he is working on a new skill or trying to regain an old one that was lost I can see the determination in his eyes.  When his sister hugs him so tight and kisses him so hard that I am afraid he is going to cry or choke, but instead he just gives her a big smile and it makes me smile too.  He has endured more in his 16 months than most people will have to in a life time but I always find him in his crib smiling and happy in the morning.  He is so amazing.  He has made my life so amazing. 

Having my babes has been the most wonderful thing to ever happen to me.  I am completely grateful for my fantastic life.  Sure there can be a lot of rough spots but the beauty of life always seems to overshadow.  I will try to remind myself of this the next time I have these sad feelings (who knows this could happen tomorrow) and remember the ultimate beauty that my babes bring to my life.


  1. Fantastic post! I am very much the same really. I have always treated Ryley like he was any other kid. I have always given him every opportunity to enjoy and experience the world. Sometimes though, I just have to change the way I do it (and somedays he couldn't care less about what we are doing LOL).
    I STILL have those sad days where I wish he didn't have to suffer, or we weren't looked at differently. That is normal.
    MOST days we just live our life.

    The comments are the most hurtful part I have found. Those little reminders that in others eyes, our little men are not 'perfect' in a way that society accepts. But I usually have a little cry and hug my precious kids and like you, enjoy them for who they are.

    Love the photos of your beautiful kids. They are just gorgeous xox

  2. Your babes are beautiful! Dylan is so handsome and looks so happy. I am glad his gorgeous smile and sparkle in his eyes is back now that his cast is off and he can be back to life as usual. :)

  3. Kristy,

    Your children are so beautiful; Dylan is going to be one lucky little man to have a big sister and little brother around him to teach him what he needs to know and love him unconditionally. <3

  4. dylan is so gorgeous! each an everyday i just realize, our babies are such a wonderful gift from God! they're very good, behaving and just not simply cry like other 'normal' babies... we are so lucky!

  5. Hi Kristy,

    I stumbled across your blog via Ryleys and juct caught this post. I am the big sister (29) of Richard (27) who has WHS. I know I'm coming at this from a different persepective as I'm a sibling, not a parent, but I can tell you that WHS really really does become quite an insignificant part of your life.

    Richard is the most amazing man and you do become almost completely 'blind' to the syndrome entirely. And those feelings of sadness etc. actually turn to pity - not for the person WITH WHS, but the for the people that will never understand or know the joy and happiness that that person brings our family.

    I spoke to my Mum about your post and she gave a little coy smile and said she could recall thos same feelings all those years ago, but that she could assure you they will all change :-)

    Dylan is absolutely gorgeous - what a handsome chap and what a beautiful smile!!

    Wishing you all well. Look forward to reading more xxxx


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