To my son, my hero, my love.
This is late because it took me days to sort out my emotions this year. You see some years are filled with excitement, and some years are filled with tears of the memories that come with your unplanned early birth. 27 weeks – was unexpected and terrifying. But I knew from conception that you would be a fighter. I just hoped you wouldn’t need that fighting spirit so soon.
One who gains strength by overcoming obstacles possesses the only strength which can overcome adversity.
We were told you would only live hours but no more than a week. We were given horrific odds. And despite everything, you would squeeze my finger to let me know you were still fighting. And here we are – at age 3. And in those three years you have showed us things beyond our wildest imaginations when we started this journey with you.
You taught us how to love with compassion – our hearts and eyes wide open. When your sister was born, I thought I knew what unconditional love was. And I do, love your sister without condition. But she makes it so easy – you tell her you love her and she smiles, returns the words and even gives hugs when the mood strikes. She can respond and also instigate these feelings of love. Love is a give and take, a dance of sorts. But you taught me what the meaning of love is when there is no typical reciprocation. We dream of the first smiles and the first kisses and those tiny moments that our babies look into our eyes and reciprocate those feelings we express. And you have not reached the point to do any of those consistently. In the last year you have made so much progress with responding, but its not the same. And that is ok. You have taught us to see love in a different way – the way that you communicate with us. And I have seen through talking to others – that its a way that you only show with us. As if we have a secret locked away from the rest of the world. And although most days it makes me look like a crazy person trying to explain it – I treasure each and every second of our stolen moments that you have just for me.
You taught us to really see people. While I was never one to single out someone who was different, I most definitely saw differences in people. But you have allowed us to see the bigger picture – showed us that its what is on the inside that matters. Someone with a disability might have more challenges but its the challenges that drive the fight in the person. People we have met through our journey so far are some of the strongest people I have ever met. And some of the most beautiful. Just like you. Your sister has a little girl in her class that happens to be in a wheelchair. And because of you, she has never once seen that little girl as a girl in a wheelchair but as a little girl in the first grade – just like her. And that is a beautiful gift of love that she will carry her whole life – seeing people for who they really are despite any other factors.
But regardless of what you have given us – I want you to know that each day of your life you are loved. Immeasurably. Some days are easy, and some days I don’t know how we will make it through – and some days I have been terrified that the end was coming. But each time, through faith and love we pull through. You are truly a miracle.
Once all struggle is grasped, miracles are possible.
I have watched you do amazing things in your short life – things that no one dreamed was possible. And I love you every moment of the good days or the bad days. I think I walk into your room and stare at you 500 times a day and tell you how beautiful you are. Even when you are drooling and snoring – you are the most beautiful person I have ever met. My love is not contingent upon your ability or lack of. Because I see you – for who you are – even though you have never spoken a single word to me and I don’t know if you ever will – I can see you. I do see you. And I love every ounce of you! All 18.3Kg of you!! (I know I said immeasurable but we do measure how much of you there is …. so… ❤ )
I never have a problem when people want to discuss your diagnoses. I have had people apologize and tell me that they know its difficult. First off, no they don’t know. But second, its not difficult. They are words on a page. They are not you. I could list off 700 diagnoses for hours and not a single one would ever make me feel any different because I look at you and I don’t see a single one. I see your heart and your drive and the love you have for all of us. So different for each of us but so complete. So while it might be easier to express affection with your sister – it will never be as simple and pure as my expression of love with you. We are forced to speak without words and love without sounds. But our hearts say it all.
I don’t know if there will be another year to look forward to. I so desperately hope I am writing you another letter this time next year. But, regardless of that fact I also want you to know – that I would change everything. I would give anything and everything if I could give you the life you deserve – where the only pain you ever experienced was scraping your knee the first time you climbed on a bike or the pain of heartbreak from your first crush. I would give it all in a second to give you a life with little pain and a lifetime of dreams for the taking.
Our dreams changed for you the moment you were born – to more immediate dreams. But nevertheless dreams. My dreams for you are more daring now – although to a bystander they look so simple: to crawl, to sit, to stand, to walk. But I dare to dream that you WILL do ALL of these amazing things and more. I have faith, my son. Faith that God has a plan and faith in YOU. I have seen your drive and your heart. I have no doubt that you are here to accomplish great things. I look forward to the rest of the journey and holding you in my arms and watching you exceed my dreams and soar!
Be faithful in small things because it is in them that your strength lies.
I love you my beautiful boy. Happy third birthday.