Where do I start?
It seems like just when we are coasting along enjoying all the small victories with Zack; hearing new sounds, coming close to walking… we are reminded of how fragile his life is and of the ‘other shoes’ that could drop at any moment and change our whole world.
In a nutshell, after an MRI follow up with neurosurgery at Sick Kids yesterday, the doctor said that a shunt may be required in Zack’s brain to alleviate the pressure caused by his hydrocephalus. Sounds great, huh??
Wait, there are more surprises…it seems that this MRI showed that Zack’s skull and neck are not connected normally, meaning that he is more susceptible to serious injuries. In the eloquent words of our dear doctor (we actually liked him before this next sentence) ‘his head could fall off causing him to be a quadriplegic‘! Was he kidding?
Paul and I started to cry immediately while the doctor placed his hand on Paul’s shoulder. ‘You will just need to be careful and treat him as if he is two years old when he is ten’. No wrestling with his brothers? What about sports? Can he ever really play at the playground? How do we protect him and let him have joy in life???
I have to admit that I’ve been here before. Struggling with shocking news about our son, while trying to maintain my positive outlook.
I have to admit that I cried a lot yesterday. I cried at the hospital… at Starbucks and all the way home.
I have to admit I asked ‘why us’? How could we have let our guard down and been excited about how far we had come, only to have us reminded of how far we have to go?
I have to admit that I wanted a day off from being positive and being a cheerleader.
I have to admit that I wished life were different for me and my Zackie.
I have to admit, I wanted a nice glass of Chardonnay (okay maybe two).
I have to admit I took a look into Zack’s future to wonder what it might be like.
I have to admit that I took ONE day to feel these things…
Then it happened, as it always does.
I moved on.
I looked at Zack sitting in the backseat of the car on the ride home and he was laughing while he played with his hands. I cried again thinking that he had no idea of how sad I was or of how scared he should be- he kept looking at me… waiting.
Waiting for me to be his happy, positive mommy who always makes him smile. His cheerleader who jumps up and down when he does any new exciting things. His advocate who makes sure he is taken care of and gets all the help he needs. His nurse who figures out what is wrong when he is in pain. His biggest fan who always chooses to ‘live in the moment’ rather than wonder about the future.
There will be more days like this ahead. Of that I am sure.
But when my beautiful brave boy blew me a kiss and smiled at me… I became that same mommy, cheerleader, advocate and nurse that I always am for him. I was done with crying, feeling sad and even feeling that things were better. I went back to living in the moment and I decided to grab that kiss and live in THAT moment for the rest of that day.
Lisa
May 16, 2010 at 1:03 am (14 years ago)Everytime I read one of your posts, I have a huge lump in my throat and a tear in my eye. You are truly an amazing woman Heather – a real inspiration to me. Thank you for reminding me of how lucky we all are to be healthy and for reminding me never to take even one moment of life and living for granted. You will always be my hero!
the three wise menn
May 16, 2010 at 1:56 am (14 years ago)I found your blog while searching for other families of kiddos with special needs. I SO resounded with what you wrote here! Thanks for sharing your story, and being honest!
Andrea
http://munciemenn.blogspot.com
Soulla
May 16, 2010 at 2:01 am (14 years ago)Awwww, I wish you guys could catch a break! BUT, look how far Zack has come. He has overcome so many obstacles, and I’m sure this is just another small hump that he’s going to fly past. He’s so strong – and so are you, so try not to let this get you down. We’re all cheering for him!!!
Sherry C
May 16, 2010 at 2:31 am (14 years ago)I agree your way past due for a break. I had the shivers yesterday when I read your email and was thinking about you last night when I woke for my babe. It doesn’t seem fair at all for Zackie, but I know he will be running with the big boys one day. He’s loved, supported and celebrated, no wonder he is amazing everyone with his sucesses when so much is going in his little body. Keep up your positive spirit and enjoying all the little moments. Sending big ((hugs)) your way.
Lena!
May 16, 2010 at 2:44 am (14 years ago)BIG HUGS to you Heather. Everyone needs a day to be sad… but you’re right, living in the moment is better on both the heart and soul 🙂
Jana
May 16, 2010 at 2:25 pm (14 years ago)You are super mom and Zack (and the boys) are so lucky to you and Paul. Thanks for being honest with your post, that’s so brave of you. Remember your family, your friend, and your team- we’re all here for you and Zackie and we can’t wait for the next great thing he does! BIG HUG
TJZMommy
May 16, 2010 at 4:14 pm (14 years ago)I truly could never get through those kind of days without the support from our dear friends, family and even strangers.
I will never stop fighting for Zack and for the opportunity to keep him happy and allow him to have the fun that makes him smile. Thank you to my new friends who can also follow this journey-
Erin
May 16, 2010 at 7:33 pm (14 years ago)Heather, I always love reading your blog. You are so right… it’s easy to get stuch in the ‘dark’ of it all. To be able to find the bright spot and stay in it (the kiss, the mama, the trike riding) and truly live that moment, is a real skill. Zack is a trooper and I believe that the 2 of you are a real dream team who I have the joy of working with!
The mom of 4 monkeys!
May 19, 2010 at 11:46 am (14 years ago)So beautifully written….
Sarah
May 20, 2010 at 1:55 pm (14 years ago)Heather, your post is so touching, I admire you for being so strong. Don’t ever give up hope for this adorable son of yours. You are right, living in the moment is key. Lots of love from my family to yours.