Today you turn six years old, little one. And like every other parent I wonder how that’s possible. I feel like I only took a breath since you’ve been born, so how can six whole years have gone by?
You made me a mother. You! Without you, I would not know what this impossibly huge love feels like. It’s a love that fills up every empty space, it could move mountains. It’s a totally unconditional, practically indescribable love. How can you put into words this big love? It is a gift, a blessing beyond anything else. You gave me that. I am happy you are in my life, and I also feel sad because it seems that our time together is always fleeting. Already I miss your chubby hand in mine. I miss the way you smelled as a baby. Not that new baby smell, but the one that was just yours (and your sister had it too.) No one else could smell it like I could, not even Daddy. It’s like how mama animals know their babies by their smell. I always wished I could put it in a bottle and keep it forever. Your blanket that you used to tangle yourself up in smelled like you too and when you were sleeping at night I would inhale deeply as I kissed your sweet head, and my heart would melt. I hope one day you will know this kind of love.
I’m sad because so much of your short life has been filled with pain and challenges. I hope it doesn’t make you feel broken as an adult. Instead I hope you see it as a testament to your strength. I wish you’d had more of a childhood. You were so little. So full of joy and happiness. And, I weep because we never get to have it back. Unfortunately, that’s the way life is. We can’t hit pause and then rewind. We can only ever move forward. I hope you will always know how much I love you. My deepest wish is that someday you will be well again. You will be free of this disease that has taken over our lives.
Today you are six and I realize that we still have so much to teach you about life… like how to love and be loved, how to make good choices, and so much more but it feels like there’s not enough time, especially if so much of our time is spent managing this disease.
There will come a time when you’ll learn things all on your own – as the main character, the leading man, in your own life and I will step back – as best supporting actress. That’s the way it’s supposed to be. But for now I’m the leading lady in your life and I will hold onto that as long as I can.
Before I was a mother, I had a vision of the kind of mum I’d be. I imagined living in a big house on the beach. It was always summer and apparently there were no bugs because the doors stayed open and children were free to run in and out of the house playing happily. I pictured standing barefoot in the kitchen in a long summer dress making food and drinks for friends. Everything was so relaxed and lovely. Sand was tracked through the house but I was so happy I didn’t care. Okay, hold on a second. As my mum said, when I told her this vision of heaven – “That’s not real life. That’s a movie! And you would hate sand tracked through the house.” It’s true, I would. In real life we live an hour away from the beach, and we live in Canada so we get to enjoy four seasons. I’m far from the serene mum I imagined. About the only thing that’s true is the barefoot thing. What I’ve learned is that being a mum is so much more and requires so much more than I could have imagined.
Today you are six and I believe you will get better – maybe not today, or even tomorrow. I know we are in this for the long haul – but you will get better.
You are a smart, sensitive, gentle soul. And you care – never stop caring. Don’t let the world change you or crush your spirit. Because, darling, it will try. People will try to change you, but you are strong. Be authentic and true to yourself always. Life is incredibly precious and fragile. I often wonder where life will take you. But wherever it takes you, remember that I will be here whenever you need me.
Every birthday I silently cry over what feels like another lost year. When you blow out the candles I wish for a year of health and happiness, of peace and serenity, instead of turmoil and chaos. But I will appreciate the moments of goodness. I recognize the limitations on our lives at this time and will focus on what we can do instead of dreaming of things that aren’t possible right now. But don’t think for even a second that I’ll stop dreaming of good things for you, because someday you will be well and those dreams will come true. I hope you will remember the good moments. Every night, when we ask you at the end of the day what your favourite part of the day was you always have lots of good things to say, even small things like: having tacos for dinner (your favourite,) going on a bike ride…. Then we ask what was the worst part of the day and it’s never what we would have guessed. It’s things like: you didn’t get to play at the park longer or you wanted two chocolate popsicles, not one. I hope the good times are what stick in your memory.
Every night I tell you, and will keep telling you: “I love you darling, to the moon and back. I love you forever, I’ll like you for always. As long as I’m living, my baby you’ll be.”
P.S. My loves, if you ever read all of this someday, please don’t feel bad. I write our story because there are many more children, just like you, and families, going through the same thing. They need to know they are not alone. We need to raise more awareness so hopefully more Doctors and Health care professionals will educate themselves about PANDAS and Lyme Disease so that people don’t have to suffer as long as you did. Hopefully children will get help and treatment sooner. Your lives are important. You have purpose. And that’s why I share our story. xoxo