I remember being told when Ali was about 3 months old that she’d always be low functioning and miserable. Today, Ali graduated from Kindergarten and she won a Sunshine award!

Ali, who has been through more this year then a lot of us ever go through won an award for always being positive and cheerful and for helping to enhance school moral and encourage positivity. I have never been prouder of Ali then I’ve been this year. Last summer, Ali went through some really awful testing. It had to do with her hypoglycemia and as her mom, it hurt me to watch. She started daily injections in September and immediately began to experience symptoms of a tethered spinal cord. She went through testing for the cord issue and had a test that in my opinion is probably the most awful medical test she will ever have. She had surgery on her spinal cord, went through a recovery and then needed to get 12 Botox injections in her leg. She’s now in the midst of serial casting. All that in less than a year and on top of her regular echocardiograms, ECGs, ultrasounds, blood work and medical appointments. We’ve also required more of her this year then ever before in both therapy and at school.

She’s had a really busy and difficult year. I wouldn’t blame her if she was miserable and worn down, after all I feel like we’ve all been though a battle this year and I’m ready for all these issues to be resolved. She faces challenges that no one should ever have to face and she’s starting to understand that most kids don’t have to do all the things she does and yet, she won the Sunshine Award! She smiles through everything.  She never gives up.   Even when the tests are scary and she cries and asks us to stop them, she still leaves the room smiling. She is amazing and I can’t tell you how proud I am of her. She has so much strength in that little body and she is so brave.  While she’s dealing with lots of challenges, she is constantly worrying about others and how they’re doing.  She has grown this year into a thoughtful, intelligent and caring little girl.   I am so proud to say that I’m that happy little girl’s mom and I’m proud of the impact she has on the people around her. This kid was never supposed to be happy and today, she got a Sunshine Award!

The Strength in our Family.

I struggle a lot.  I sort of live my life wondering (and worrying) about what comes next.  There are times when I feel so worn out from it all that I look at my calendar of appointments, activities and work and I want to run and hide.  I panic and I start to freak out and think we can’t possibly do it all.   There is one person in this world that shares all of that with me and that’s Jason and I really couldn’t do this without him.  He’s the strength in this family, he keeps us going when I’m ready to crawl into bed and call it quits.   He keeps us afloat when I’m planning to abandon ship!  Jason is the one that reminds me that we always get through it – together we get through everything.  I will openly admit (and I think that Jason would too) that we handle things very differently.  While I’m running around having an all out panic attack, he’s cool as a cucumber but I know that doesn’t mean that he doesn’t feel the stress every bit as much as I do and I truly admire his ability to let things go because I can’t seem to manage that.  As maddening as it is at times I appreciate the calm way in which he deals with our lives.   Jason and I are a team and I’m really lucky to have him as my partner in all this craziness.   He’s just a great guy.  He’s smart, he works his butt off for our family and he loves us and we know that no matter what he’ll always be there.   Jason alone deserves every bit of the credit for the person he is.  He is a great father and husband because he makes the choice to be, not everyone makes that choice but I’m thankful that he does.  Today is Jason’s birthday and I want to thank him for all that he does for our family.   I hope he knows how much we love him – kids, wife and dogs.  Happy Birthday!

What about the kids like Ali??

I’m going to post something today that may not seem like it has that much to do with Ali and it’s probably a little more political and opinion based then you may wish to be reading from me but something’s been bugging me and I’m going to get off my chest. If you stop reading now, I won’t be offended.

I saw a letter last week that was sent home from a school in our town about a coin drive for Syrian refugees that was being organized by a group of children. I thought it was wonderful that a group of children were organizing a coin drive for people in need. I looked for some change and stuck it in Madi’s backpack so that she could participate. What better way to teach her about compassion and to help remind her how lucky she is to be safe then to give her some change to contribute? She sees the images on TV during news broadcasts, we all do. Why not take the opportunity to teach our children that we should do what we can to help, even if just in a small way? So I started talking to her about it and she told me that some of her friend’s parents think that “Syrian Refugees” (not her wording but that’s what she meant) should just go home. These people fled their country, most of them by foot because they had to choose between being slaughtered and running for their lives. They lived in fear that their homes would be blown up and that their children would be murdered. They were doctors, lawyers, teachers and engineers. There were young families, seniors and people with disabilities. They weren’t that much different then us. They were hungry, afraid and more desperate than I imagine most of us have ever been and yet, people are telling their children that they should just go home? I’ve read all over social media, amongst rumours about the refugee program in Canada (most of which are false if you actually do the research) that people feel like we need to help our veterans, our homeless, the disabled and the unemployed people in our country before helping people from another country. That’s all great, let’s help our own but please don’t use people like Ali as an excuse not to help people from other countries. We need to remember that the Syrian refugees are not coming here because they wanted to. They left their homes behind. They left all their possessions and they were separated from their families. They literally ran for their lives with the clothes on their backs. To me that doesn’t compare to an oilfield worker who lost his job or a senior who is living off a small pension. Why?  Because in Canada, we don’t have bombs falling around us and children running in the streets with machine guns. I don’t understand how as a society it is suddenly okay to be so openly prejudice against a group of people who desperately need our help. How is it okay to encourage people to turn their backs on them? I see it all over social media, all the time, posts about refugees (and even immigrants) and about why they shouldn’t be here, why we shouldn’t help them. So my question to the people who think it’s okay to speak out against this group of people who can longer help themselves is this. What happens if we ever need help? How would you feel if you had to leave your home in the dark of night because you knew that in morning it would be a pile of rubble?  What would you do if your neighbour aimed a gun at you and tried to kill you? What would make you throw your child into a dingy and float across an ocean? What would you do if when you were finally safe, nobody would help you? For followers of this page, what would happen to my family and my daughter in a place like Syria? I think about that a lot when I see the news, what happened to all the children like Ali? That’s why this is on my blog and probably why it affects me the way it does. I think we need to count our blessings and if we have to share them because we just so happen to have been born in one of the safest places in the world then that’s fine with me. If it’s not fine with you then I think you really need to do some thinking.

A blog about living life one day at a time with an amazing little girl with Costello Syndrome.