Tomorrow is Ali’s birthday. Ali came into the world in the middle of a snow storm on December 21, 2009. She followed in the footsteps of her big sister Madi by being born in distress and needing an air lift to the nearest large center (3 hours by car). Things were complicated by the horrible weather and by the fact that the Airport was closed. We were so happy that they opened the airport so that she didn’t have to drive to the city during the snowstorm. I remember so vividly the excitement leading up to the arrival of our Christmas baby and even more clearly the feeling that came over me when I realized that something was very, very wrong with her. I used to think that I was glad that I didn’t know then what was about to follow but looking back I’m not sure of that anymore.
When Ali was less than a week old, she was given a drug overdose in hospital but even after the drugs cleared her system she struggled. When we finally took her home it was scary. She wasn’t growing. She couldn’t even tolerate enough formula to grow. Feeding her was horrible, she would gag and throw up and scream. We now had some idea that maybe the drug overdose, although horrible, wasn’t the cause of her feeding intolerance and delays, maybe something else was going on.
Very few people know this but I had always wondered about Ali. Something in my heart had always wondered if this was a child with extra challenges. The night she was born I just had a feeling that something wasn’t right. But that was a feeling that I just put out of my head and ignored. The drug overdose made it easier to ignore that feeling for longer but some things you can’t avoid forever and this was one of them.
In February we met with a Clinical Genetisist and she was very worried for Ali. Two simple words changed our lives forever; Costello Syndrome. That day still haunts me because I had feelings that I didn’t know I was capable of. I felt like my child was gone, lost forever and that she’d been replaced by this new baby that I didn’t know at all. That day is never far from my mind, I can honestly say that that was the most horrible day of my life. It’s a day that I wish with all my heart I could forget but thankfully, I can also say that from that point we learned to deal with our new reality. While I’d do anything I could to change this reality for Ali, she is my baby, she is the same baby she’s always been and I wouldn’t trade her for anything.
Over the past year Ali has exceed our expectations in every way. She is incredibly stubborn and determined. When she wants to learn a new skill she fights with everything she’s got, when she doesn’t want to learn a new skill she also fights with everything she’s got!
This little person is truly amazing. She has the silliest smile I’ve ever seen , she snores like a full grown man and she makes hilarious little sounds when she’s trying to express herself. Ali would spend hours laying on the floor with both feet in the air staring at her toes if we’d let her and if you start to sing. “Patti cake, Patti cake, bakers man…” it’s her feet that start clapping, not her hands. Ali loves to be nuzzled. She giggles when we kiss her neck and smiles and sticks her tongue out when we turn on Country music. She also plays a mean xylophone piano! Ali has just learned to clap her hands and to use the sign for “more”, she can’t help but clap and sign “more” like a crazy baby whenever she gets excited!
The reason I’m telling you all of this is because Ali has taught me a much needed lesson over the past year. A syndrome is just a syndrome, it doesn’t define a person. Ali lives with Costello Syndrome and because of it she has many obstacles to overcome but she’s not limited in what she can do. The sky’s the limit for our little peanut. Sure, Ali will probably always be different but what I’m confident in is that she will be the best person she can be. While some people who look at her may see a baby that is severely delayed, all I see is my child and how beautiful she is.
I’m not going to say that it’s been an easy year because it hasn’t. Ali spent 6 weeks in the hospital when she was born. Since then she’s been hospitalized twice for surgery and she’s had four trips to the emergency room. She sees six specialists regularly and has occupational therapy every week. She has tumour screening every three months. I still feel sad every day for what she’s lost and for what may come in the future. I’m no longer waiting for that sadness to go away because I am fairly confident now that it never will. But Ali has also gone from being a virtually blind, hypotonic infant to learning to hold her head up, roll over, hold her legs up in the air and reach, grasp and shake. She can track well with her eyes and she loves to watch what is going on in the world around her. She sits up and stands with support and is tolerating her feeds well and growing fabulously. She is also the most stubborn little thing that I have ever had the pleasure of knowing and I love her for it. She has come so far in a year and I am excited to see where she ends up in the next year and in many years to come.
At night when Ali and I sit together and snuggle in the rocking chair I often have to fight back tears. When it’s just her and I in the middle of the night, it’s hard not to think about everything that she’s been through and what may happen in the future. But as she sucks on my fingers and coos softly I can clearly see the most important thing of all. Ali is a gift. I love her with all my heart and we are so blessed to have her. There are no words the describe the bond I have with this child and if I could go back to last year when Ali left into the cold, snowy night I’d tell myself that although our life was going to be forever changed we would all be okay. I am a better person today then I was last year. There are always going to be hard times and battles to fight but we have Ali and that’s the way our world was meant to be. I truly wish I’d known then what I know now and I want everyone to know that no matter what, I will always be thankful for that special little Christmas gift that came into our lives on that cold snowy night one year ago tomorrow.
Happy Birthday Baby Ali, you’re perfect and we love you so much.
