It is maybe the best indicator of what life is like with your four-year-old self that nearly a week has passed since your actual birthday and I am just now posting this. Better late than never, right kiddo? 🙂
Dear Danny,
Today you are 4 years old. I’d say I can’t believe it, or that I don’t know where the time went or how you got to be so big and so strong…but that wouldn’t be quite true. Time is flying by – that much is certain – but with this last year under our belts, the scars and the triumphs all stacked up beneath us, it wouldn’t be fair to imply that this foundation was easy to come by. You are a warrior, Danny. Daddy and I will always be fighting right beside you, but in these battles you are the only one who can carry the sword.
I wish it wasn’t the case, but I will always remember this year of your life as the road to Autism. Though, the journey that I am speaking of was mine – not yours. This time last year I was clinging to my denial so fiercely that I had convinced myself that it was hope. Now that I’ve caught up I can see that we have been on this road for awhile now. And, now that I am more familiar with the route, the bumps and turns don’t scare me the way that they used to.
There is just something about you, Danny. Something about your smile, your eyes, your incredible laugh – something that makes everyone who meets you fall in love. This year has been full of many wonderful things – unprompted ‘I love you’s and full speed running bear hugs. New friendships, new experiences, new words and skills – just so much new. And new is so typical…we know better than to take a single bit of it for granted.
This week you will start school again – your 3rd “first day of school” since last October. This year you will be riding a bus, going to an afternoon class, and going every day. This was the plan that we landed on when we determined that the County’s program specifically for kids with ASD wasn’t the right place for you. Now we hold our breath and pray that we’ve made the right choices. These tremendous leaps of faith that we take – trying to do the best and most productive things with this short window of time in your life – never get easier. But the only truly wrong choice would be not to make one.
So we set the stage for miracles…and we jump.
Without a doubt, your favorite book of all time is I Love You Stinky Face – a wonderful book about a mother’s love for her son. You received this book as a gift at your Baptism, so we have been reading this book together almost every night since you were about 3 months old.
I read it to you while you gazed silently at me through the slats of your crib.
(I’d whisper in your ear: “I love you, stinky face”)
I read it to you while you screamed and cried and thrashed because you didn’t want to fall asleep.
(I would tell you “I love you, my big, scary ape.)
I read it to you while you ran around the room ignoring me entirely, singing your own song and marching to your own beat.
(I’d say, “I love you, my sweet, terrible dinosaur”)
I read it and read it until it became our routine, until we wore 3 books down to the board. Then one day, out of the blue, you wanted to read it to me. At first you were impossible to understand – “Mama” was the only word of the book you could say well for a long time. But then came: “I love you”. And “dinosaur”. And “alligator”. Every night there would be more words to fill in the gaps.
Now, you start at the title page and read almost every line. When the boy asks his mother if she would still love him if he were a slimy swamp monster, you turn the page and pass the book to me to read her response.
“Then I would live by the swamp and take care of you always. I’d tell you, “I love you, my slimy swamp monster.”
Then you laugh, take the book back and read the rest.
And I marvel at how that line has always spoken to me – since the first time I sat beside your crib and read through the slats to my perfect baby boy. Before I knew what the world had in store for us. Before you somehow knew that it was the one part of the book that your Mommy should say out loud every night.
The line when she responds with how she would live, rather than with what she would give. When she offers no specific solution to his predicament, only reassures him that they would be in it together.
And I thank God for you – for the gift that it is to love you and play a part in the development of your beautiful mind, even as I accept that I may never understand it.
I have had a lot of trouble writing this particular letter to you, Danny. When I wrote last year, I told you that when it comes to telling your story I don’t feel like I have as much to say as I did in the beginning. That isn’t it exactly – it’s more that when I start to write out the details I can’t find any combination of words that conveys the forest without losing you in the trees.
I want to tell you that these last months have been difficult. Even on the heels of the great progress we have seen in the last year, I have been feeling discouraged by our circumstances more often than I would like to admit. The transition to the school year schedule has been a dramatic change in the tempo of our lives and you are feeling it. Tantrums and fits are still the most reliable way for you to communicate, and I have tried to hunker down with you and weather the storm with as much patience as I can muster. We have also come to realize that we do not have any access to Autism therapies through our current insurance provider, which is a setback deserving of its own story some other time and place. We are regrouping now, trying to find something sturdy to stand on before taking another leap.
The thing is – I never want you to read these letters and think that our lives were a constant struggle. You are more than a check list, more than a quest for services and more than a binder of daily reports. You are far greater than the sum of your behaviors on any given day. You are my Danny, my quirky little monkey. You are my privilege, not my chore.
4 years from now you will be an 8 year old boy – time itself will take care of that with very little input from me. What you will be is not in question. But whoyou will be? That is just beginning to unfold. Who you will be is worth fighting for even when the work is hard. Even when the odds are not in our favor.
I don’t know why, but I just have a feeling that this year is going to be a big one. Truthfully, they have all been big, but something tells me that this is going to be the year that changes everything. That we will look back on this time and say that the battles we are fighting now made it possible to win the war.
The world around you is overflowing with love – with so many people who care about you and want to see you thrive. Because of their love, I see His love all around you too. A constant embrace that lifts you up, that reminds me that we are all uniquely loved and our little family is not too small to be held in the very palm of His hand.
Whether this road that we are traveling takes us to “typical”, to the swamp, or leaves us somewhere in between, we will all be there together.
And as long as we are together, we’ve already won.
This Joyful Noise 