Dear Dylan,
This letter isn’t really for you. I suppose it’s for me. Maybe for the world. It’s the letter I wish you could comprehend. Deep down, I think you do understand, how far you’ve come and how proud we are.
You entered this world on December 10th, 2000. You arrived three weeks early, 90% dependent on oxygen. I was told 24 hours after you were born they suspected you had Down syndrome. Even though I only got to hold you in my arms for fifteen minutes immediately following your birth, I knew in my gut that something more was going on besides “wet lungs”.
You spent one week in the NICU. You looked out of place - you were a whopping 7 lbs 14 oz surrounded by 1-2 pound preemies. Between your size and red hair, your presence in that space was clearly known. It’s remained that way ever since.
The social worker and NICU department head met with us three times before your eventual discharge. At the time, I didn’t really understand it. You were my son, I couldn’t wait to get you home. We hadn’t had a prenatal diagnosis. I was a week shy of my 22nd birthday. Those overseeing your care wanted to ensure we wanted to take you home. They were ready - even expecting - us to give you up because you had Down syndrome. I’ll never forget the little room we sat in, meeting for a 3rd and final time, you tucked into your infant carrier, dressed to go home and your dad saying, “He’s our son, we love him, he’s going home”. I recall their expressions - a look of surprise, relief and concern all wrapped together.
We left the hospital and the journey of raising our 1st born began.
Despite all odds, you were, and even now, a remarkably healthy child, which is not always the case for those with a Down syndrome diagnosis. You’ve got some odd’s and ends going on, but all manageable.
By three months of age, the early intervention had begun. You and I set out to all sorts of initial doctor appointments to create your baseline of development, both physically and cognitively.
I remember your “Baby’s 1st Year Calendar”. I wanted so badly to put the cute little stickers for all the milestones on the beautiful pages, but I couldn’t - and I had know idea if you’d even hit some of them. I had a good cry and tossed it into the trash. I remember crying out to God and saying, “I know you’ve got him, no matter how long it takes”.
As you grew, you hit your milestones - you were using sign language by your 1st birthday and walked at 18 months. You discovered your shadow. You loved to clap. Oh how you loved to pray - anywhere and everywhere! There was a delay in hitting many significant milestones, but before I knew it, I was wishing you weren’t running so quickly!
By age three, you knew every number and letter of the alphabet - upper and lower case - and by four, you knew their sounds. Shouting out the letters and numbers on license plates was your favorite and books and flashcards were your first best friend.
I remember sending you at the mere age of three on the school bus to preschool. You adored the bus. You bounded onto the bus and never looked back.
Pre-K and elementary school brought struggles and triumphs. You had phenomenal 1-1 aides and teachers, as well as the mediocre. Unfortunately, you also experienced, at minimum, a verbally abusive preschool teacher that directly impacted your classroom experience for years to come. We didn’t know what was occurring at the time, but the truth has a way of becoming known. Despite the hurt and anger I held within me, I let go and let God and you grew and thrived and overcame the damage those early years of education brought.
Middle school and puberty tested us all. God placed the perfect teacher, 1-1 aide and extra support staff into your life. You love roller coasters and the one you took us on during those years left us feeling like we were stuck upside down in a loop more often than not. Yet by 8th grade, you were giving us a glimpse of the young man you were growing into.
During elementary and middle school, your desire for independence grew but safety was a concern. We set out on an adventure and Yoko, the ultimate service dog, entered your life. Your bond with one another was beautiful. I will never underestimate the power of an animal. Her influence and presence in your life was one of the many things that shaped you. When her time came to cross the rainbow bridge, she took a piece of each of our hearts with her. Her passing showed us just how much you had grown. You had crossed a bridge of your own and no longer needed the assistance she had brought you.
High school was finely upon us. We stepped out of the box and placed you in a setting that was unconventional. You showed us what you were made of in your freshman and sophomore year - growing by leaps and bounds in every area imaginable. Your junior year brought struggles with your diagnosis of Graves disease. Forcing you to step back from so many things you loved was hard on you (and us) - physically, socially and emotionally. You persevered, your diagnosis improved and we had high hopes for your senior year.
Your senior year took a turn. We never found a 1-1 aide. It cut like a knife to move forward with home school after such an incredible three years, but God had clearly slammed the door. We crept forward, full of anger, guilt and frustration. In complete transparency, your dad and I asked ourselves, “What the hell is happening to our senior?! THIS is what his senior year looks like after all these years of blood, sweat and tears?!”
Then the week of March 16th arrived. Covid-19 closed California. The world as a whole came to a screeching halt. Your grasp of a pandemic is non-existent. I have a love-hate relationship with this.
As the weeks of sheltering-in-place have passed, we believe God has shown us the bigger picture. If you had returned to your senior year the way WE envisioned it, your disappointment would have been far more intense. Grasping what the world is experiencing is difficult for you. Yes, there are things we had planned for you and they are postponed, but they will eventually happen - even if your graduation ceremony doesn’t occur until the fall! Had you returned to the setting we thought suited you, many things would have likely been cancelled all together. That’s not your cup of tea.
So here we are, nearing the end of May. Your graduation ceremony was scheduled for May 16th. Obviously, that didn’t happen. Various ways of hosting a graduation have been tossed around, but you deserve nothing less than the ceremony and party we’ve been planning. I know you would agree. You love people. You love a party. We’ll get it all rescheduled ASAP. You aren’t going to college. THIS - your high school graduation - is one your biggest milestones. You deserve nothing less.
When I think back to the day I threw away your 1st year calendar and wondered what milestones you would hit - or maybe not hit - I never would have imagined what has occurred over the course of these years. I’m glad I didn’t depend on that calendar or any timeline to determine what you could do, but rather God, walking side by side with you, allowing you to grow at your perfect pace.
You walk proud and tall. The world notices you.
You are well spoken. You have opinions.
You know what you love. You know what you don’t love.
You are silly and fun. You love to read and write and be creative.
You adore people. You love and feel fiercely.
You did it. You grew up into a young man.
I have absolutely no idea what your future holds, but if it’s anything like these past nineteen years, it’s going to be phenomenal.
Kiss Kiss,
Mom