Hey babe, it’s me. Every day I rise from bed I think about you and how much I miss you. Today is a special day. Our Son Jeremy is graduating from High School and I wanted to write you this letter to let you know how much I deeply appreciate everything you did to get us here. I want you to know this day belongs not just to Jeremy, but also to you. While I am still wrapping my brain around how this came to be, I know one thing for sure, this day would never have happened without you.
On November 1, 1999 we boarded a vessel called Uncertainty. This was the day we were told we would give birth to a child with Down syndrome. We had no clear destination, knew the seas would be choppy, and the weather completely unpredictable. Nevertheless, you immediately took the wheel and steered our ship forward. You were the Captain and I was your Mate.
As our journey unfolded, we encountered the rough seas and unpredictable weather we expected. We waged a long and exhausting battle against our school district to defend our son’s educational rights. We endured long and stressful IEP meetings involving lawyers on both sides. Through all of this, you took the loins share of the emotional toll. Despite the outcomes, however, you never left the wheel. You continued to steer the ship steady through the storms.
Fortunately, our journey got better. The seas began to calm and the storms abated. We had finally earned the respect we both deserved because we refused to give up or give in.
When you left this earth on October 4, 2017, it was my turn to take over the wheel and continue the steady course for the coast. You left the vessel in perfect shape. The storms are weaker and the seas are smoother. The worst is behind us.
I will never forget what you did for our son. Tears fill my eyes at every IEP meeting when I remember everything you did and believed in. You were such an extraordinary Mother, Advocate, Warrior, and Wife. I am so grateful for you. Our Jeremy is such an amazing young man.
So today, we arrive at the port. As we throw the lines to the shore, there are hundreds of people cheering. We did it babe. We completed the journey. There is tremendous jubilation but the celebration is bittersweet because you are not with us. I remember us discussing taking a cruise to celebrate. We had so many plans. I know this would have been one of the most important moments of your life. I know you wanted to live long enough to see this day. Unfortunately, the cancer had other plans. We can all clearly hear your shouts of joy from the heavens.
This day belongs to you too my beautiful captain. Every moment of it.
I love you and miss you,