Wednesday, 14 December 2011

"Weebles wooble but don't fall down"

As I drove to town today with Addison in the backseat sucking away on her soother being quiet I almost could have closed my eyes and pretended we were on our way to go shopping to buy special Christmas presents for all our friends and family and not headed to the IWK to have an EEG and meet with the neurologist.  I am not so fortunate. It led me to a long list of wonders.....

What I wonder about......

  • What is it like 
    • to take your child wherever you want, whenever you want
    • to walk through the mall with your child hand in hand
    • to have your child look into your eyes and know they are safe because their mom is there
    • to wake up in the morning and not have to worry about fitting in the large amounts of therapy
    • when your child sleeps in in the morning not having to worry because this means they are going to be late getting their medication and might not get all their formula in for the day that they need
    • to go visit someone without feeling guilty because you should be at home doing therapy and stimulating them
    • to feed your child their favourite foods
    • to not wake up every single night to take your child off the pump
    • to have a shower and play peek a boo with your child who might be in the bathroom with you
    • to plan trips and family vacations that don't involve therapy
    • to wake up Christmas morning and watch your baby play in all the paper or with their new toys
    • to not spend every waking moment worrying about what diagnosis is coming next and how you will handle it
    • to not have people feel bad for you all the time and not know what to say to you 
    • to bake cookies, clean the house, cook supper, or just sit and watch TV while your child plays or watches TV or self entertains
    • to live the "typical life" that everyone dreams about when they start a family

And then I wonder if any of you have ever thought about how lucky Tyler and I are. We have this precious angel with us every day to remind us that nothing is easy and we must work for everything but in the end it is worth it.
We wouldn't change her for anything. She is Addison and Addison is who we love. We love her for who she is, regardless of what she does, says or how she looks. No one ever wants to be the person that no one wants to be and I feel that is us. I don't want people to be scared of special needs. It isn't scary it is just hard. Very very hard and it takes lots and lots of patience. I have learned more from Addison then from any teacher or person in the 26 years of life before I had her.
 I have learned
  • That the little things in life don't matter anymore
  • I had no idea what it was like to have a bad day before
  • Health is EVERYTHING
  • The brain really does control everything we do
  • Empathy is an amazing thing and some people just plain suck and don't have any and I have NO time for those people
  • What doesn't kill you will make you stronger

Like our neurologist said to me today when she gave us more bad news..."Weebles wooble but don't fall down" 
We will survive and we will try very very hard everyday to stay strong and not fall. 

Thanks for listening!


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  2. This is a beautiful post. Truly. Took Z to see Santa today and he arched so could not be held for the pic - so I held him and leaned to the side to keep out of the pic...I told them about his issues and they all looked extremely uncomfortable with the whole situation. They even looked a bit scared of Z....scared of my little baby boy? It was heartbreaking for me. Why does it have to be like that, we are all human beings. We all just want to have a normal life, to experience all the joys of being a parent and for our kids to experience the joys of childhood.

    You can start to feel guilty for not spending your whole day doing therapy but that is not life. There is a time for therapy and there is a time for life. Life is important for development, for love and for family bonds. So your instincts are right and always listen to those. We can't spend the whole day stimulating our kids nonstop, it's just not natural in any way and enough of this is unnatural as it is.......We need to keep ourselves going, and keep some sense of regular life going along with all the hard work.

    I'm also realizing lately I have no time for those without real empathy or caring. I've met a higher calibre of people since this and they fill my life along with my family. It's one good thing that has happened, and I've learned a lot from that. You guys are among those, and we are so lucky to have met such wonderful people!!! Your Addie is a beautiful, sweet and amazing soul and anyone on the planet should feel lucky to have come into contact with her energy. You're *always* welcome to hang out with us again whenever you're here and we are looking so forward to seeing you guys again ....xoxo Z, L, F, S xoxo

  3. Ashley and truly are the strongest people I know. My heroes. This post touched my heart and makes me just want to hug you all and tell you how proud I am to know you. I see and hear people complain about lack of sleep because their child was up all night, and they're tired because their child was misbehaving and I always think about you and wish people could see a day of your life so they could realize what a hard day actually is. I think your beautiful little Addison couldn't have asked for better parents than you. I love you all. xoxo