I remember a day almost 6 years ago, I was sitting in one of Ali’s many doctor’s offices talking about Costello Syndrome and all that the diagnosis meant.  We had just received the results of Ali’s genetics test and I was desperate for someone to tell me something to give me some hope.  We were talking about the cancer risk and I literally felt like my heart was being ripped out of my chest – I was terrified that my beautiful baby was going to get cancer and die.  She was a just few months old at the time, this was all new and we had this scary path ahead of us and the cancer risk terrified me.  It still does.  At that moment there was nothing the doctor could say to calm me and she knew it, so she gave me some words of advice and told me just to hang on until Ali turned 6.  At that point, from the literature available, it seemed to her like the cancer risk would be smaller.  I held on to that piece of advice like my life depended on it.  I’ve held on to it ever since, because to be honest, I’ve needed an end point, something to aim for.  I couldn’t just go through life indefinitely worrying about it and I’ve repeated her words to myself hundreds of times over the past 6 years…“Just get through until she’s 6”.  Today, Ali had her last ultrasound before her sixth birthday which is in 5 days.  I now know that there is still a cancer risk after 6 but I’ve become very well educated on Costello Syndrome and I do believe whole heartedly that the worst of the risk is behind us.  But regardless of that, we held on, just like the doctor said to and here we are, 6 years down this road.  Six years ago, sitting in that room, more terrified then I’d ever been in my life, it felt like it was an unreachable goal. It seemed impossible to live the life we were being handed every single day for 6 years and yet somehow we did.   Look how far we’ve come.  I have worried about cancer EVERY SINGLE DAY since I had that conversation.  I’ve shed so many tears and lost so much sleep over those cancer odds.  So this is a huge milestone to me, even if it doesn’t really mean anything.  For 6 years, I’ve been waiting for this day and hoping that when it comes, I can find a way to stop living in fear.   I am so tired of being afraid.  It takes too much energy to worry so much.  To me this day is huge because of how far away it seemed as I sat there searching desperately for some reassurance that we’d all be okay.  Six years into this journey we are all still okay.

Eight years ago tomorrow Madeline  came into the world. She has always had a bit of a flare for drama and we should have known that by the kind of entry she made into our lives!  Just like her little sister Ali, she was treated to jet plane ride to the city on the night of her birth and a lovely stay in the NICU.  Madi has always been very resilient and was discharged and sent home with us a few days later.  We were told that in time, we would find out what the damage might be.  Thankfully, she appears to be very typical 8 year old now.

Madi is an amazing kid.  It’s hard to understand what it must be like for her to be the older sister of a child with the kind of needs that Ali has.  Madi lives in a home with a lot of stress and with two parents who spend a lot of their time stretched pretty thin.  We try our best to make life as typical as we can for both of our children but it’s not always possible.  Madi just rolls with it.  She doesn’t question it.  She loves her sister unconditionally and just does what she can to help.  She often asks me what she can do.  Can she do the dishes?  Can she take the dogs out to play? Can she make her own lunch?  Mostly, I ask her to entertain Ali so that I can get things done quickly, so she plays with her and reads to her and they run around the house like a herd of elephants.

Madi used to miss out on a lot for Ali.  It’s just how it had to be.  We’re a family, we all make sacrifices for each other when we need to (even Ali does).  Now, Madi is just as active and social as any other kid her age and I’m very happy that our lives have settled down to the point that she can do more of the things that interest her!  Madi is really enjoying her after school activities and is currently taking Gymnastics and Zumba.  After Christmas, she wants to play basketball (we have a hoop at home and she loves to play with us) and she’s also interested in musical theater.  She spends a lot of time out in our backyard playing with our dogs and she loves to read!  She is really enjoying school and is doing well academically.  She is still loving french immersion!  She is apparently very enthusiastic and participates in whatever she can but she can’t pass up an opportunity to let someone know when they’ve offended her.  I think she gets that from me.   She also has a flare for drama.  You don’t want to be standing next to her if someone uses a hand dryer in a public bathroom and you certainly don’t want to use one yourself in her presence and for god sakes, don’t give her too much sugar!!!   She is a very kind, caring and polite little girl.  She treats everyone with respect and tries very hard to make other people smile.  We are incredibly proud of her.  We probably don’t say it enough but we’re very lucky that Madi is exactly who Madi is (although she does know exactly how to push my buttons).

The other day, Madi and I were talking about her new baby cousin that is on the way and she asked if she’d ever be an aunt.  We talked about Ali and about Costello Syndrome and in the end I told her that I didn’t think she would ever be an Aunt to her sister babies.  I said that it makes me sad both to know that she won’t be an Aunt and also to know that Ali won’t be a mom and Madi said, “That’s okay, she’ll help me with my babies”.  A little while later they were playing dolls and I heard her tell Ali that she could always help her with her babies even if she didn’t have any of her own.   That’s the kind of kid that Madi is and that’s why we love her so much.

So, to the little girl who made me a mom for the very first time (and caused me to pee my pants when I sneeze), happy 8^th birthday.  You are an amazing kid and we are so lucky to have you!  We love you!

It’s a cold, rainy Thanksgiving day and I’m stuck inside with a rather rowdy crowd but I’m thankful for them and their craziness!  I have a lot to be thankful for this year!

I’m thankful for Madi and Ali who are making A LOT of noise by screaming, running around and slamming doors right now.  It’s annoying but life hasn’t always been so typical in our house so I’m thankful for all the typical things happening today.  I’m thankful that Ali can slam the doors with enough force to shake the house and that Madi, who used to need to live her life pretty much in silence can run around and get Griffin all riled up without making her sister lose her marbles.  I’m thankful that Ali can now yell, “Griffin Bad” over and over again as the puppy runs around the house doing swimmers turns off walls and couches and stealing Polly Pockets and Barbies.  I’m really thankful that Burton is just laying with his head in my lap looking up at me waiting for me to do something with him because I couldn’t handle two children and two dogs going crazy in the house on a rainy day!

I’m thankful that Ali fell in the toilet this morning (although she may not be) because it reminded me how independent she’s become and gave me a much needed laugh and a break from all the commotion.

I’m thankful that I can’t cook a turkey tonight because Ali won’t eat it because if I cook a ham she will!  A couple of years ago, I couldn’t have cooked a Thanksgiving meal for Ali unless I wanted to puree it and put it through her G-tube and it’s the best feeling in the world to have that all behind us.  I’m also thankful for my slap chop and my magic bullet because we’re still working on the whole chewing thing.

I’m thankful that I have to give Ali a needle tonight.  Partly because saying, “Bend over so I can stick this needle in your butt!” never gets old and always makes her giggle and partly because the alternative was to continue to fight for a medication that we thought she needed but may never get.  I worried about getting this medication for over a year and about her health and safety because she didn’t have what I thought she needed.  I’m thankful that I live in a province where this medication is readily available to us and where we don’t have to sell our house to pay for it (because some people do).  I have a real love hate relationship with this medication.  It scares the hell out of me but at the same time, it gives me peace of mind and I’m thankful for the peace of mind and the fear, they both help us make the right decisions for Ali.

I’m thankful for Costco and their huge bulk packs of cheese strings, Laughing Cow Cheese and yogurt drinks!  Ali takes forever to feed but give her a yogurt drink and a “Cow Cheese” and she’s like a high end vacuum!  Madi likes to point out that she actually chews so doesn’t need Ali’s beloved “Cow Cheese”, so cheese strings by the hundred it is!

I’m so, so thankful for OT, PT, SLP and VT.  As much as I dread spreading pudding all over my own face to show Ali how fun it is or curse them when Ali tells her sister to “Shut Up” or compliments me on my “Boobs and Butt”, they are a huge part of the reason that Ali is who she is today.   Early intervention changes the type of adult that children like Ali become and there is nothing more valuable than having a good team behind your child.

I`m thankful that I can now submit my FSCD claim on line…enough said!

I’m thankful for Jason.  I couldn’t do this without him.  I’m thankful that we can do this together and I have someone to both enjoy the chaos with and get through the tough stuff.  Parents of children with special needs often struggle to hold their own lives together, it’s really, really hard.  Our social lives pretty much end, we deal with mountains of stress and guilt and worry all the time about our children and our choices.  He makes me laugh and lets me know that it’s all going to be okay.  I’m not sure what I’d do without that.

I’m thankful for my family.  As far away as they are, I know that they will always be there if I need them.  It’s Thanksgiving and I wish we could all be together (only partly so that someone else could do the cooking).  I remember having big family holidays growing up and I loved them.  I wish my kids had more of that.  But what counts is that we all know how lucky we are to have them even when they’re far away.

Happy Thanksgiving everyone!

Tonight I was sitting watching Madi and Ali’s Zumba class.  I was thinking about Ali and how difficult Zumba must be for her even though I know that she loves the class and looks forward to it.  I’ve had several people at school tell me that Ali is giving Zumba lessons in the hallways so I know that she’s excited to be there but sometimes watching it is really hard for me.  As hard as she tries, it’s very difficult for her to keep up.  She often ends up facing the back of the room or with her eyes caught up in the lights.  She can’t really see what the instructor is doing but she can see the kids all around her dancing so she spins around and around trying to copy someone.  Madi is an incredible help to Ali in that class.  She guides her little sister around the dance floor and keeps her on track, often spinning her around and reminding her to watch the instructor.  Even with all of Madi’s help, it’s a really fast pace for Ali and it hurts my heart to watch how much she struggles to keep up.  I wish that Madi could just dance and not worry about Ali but she seems to have taken on the role of Ali’s guide in the class and I’m very proud of her for that.  Zumba really highlights Ali’s differences for me which is why I struggle to watch it despite the fact that I know she’s having fun.  Thankfully, I can always trust Ali to remind me what a miracle she is.  Today, she was dancing away and she hopped!  She actually left the ground and landed on her feet!  It was the first time in her life that she’s managed to get off the ground while trying to hop and she looked so proud!  She absolutely beamed as she turned to me and although I couldn’t hear what she said,  I saw her lips moving and am pretty sure she said, “Mommy, I did it!”  The pride on her little face made the sadness that I was feeling at the moment go away and instead I sat there thinking about how lucky I was that I saw that.  I get to see all her little miracles.  I’ve been struggling lately with her diagnosis.  I know it’s been a long time since we found out that Ali has Costello Syndrome but I still go through really difficult times when I wonder why this happened to her.   I don’t even understand why I still struggle sometimes, all I know is that I do and that sometimes, I still feel an incredible amount of sadness for her.  When I watch her at Zumba or with her typical classmates, it’s hard not to think about what life would have been like had Costello Syndrome never entered our lives.  But Ali always finds a way to show me that she’s okay exactly when I need her to.