One Year Since Diagnosis Day

May 13, 2015

Dear Nicholas,

I haven’t cried about your brother’s diagnosis for a long time now.  I haven’t felt the need to cry in a long time.  This being the one year anniversary of finding out about his Down Syndrome, I think back to that day we got his prenatal diagnosis, and the two weeks that followed, when there were many tears.  I wish I knew then what I know now.  I bet a lot of people say that a year after their child’s DS diagnosis.  I have a confession to make, Nicholas.  My initial thoughts were about you, and how you wouldn’t have a typical brother.  I actually uttered the words, “The point of having this baby was to give Nicholas a sibling.”  How mad I am at myself that I could have even thought that, never mind say those words out loud.  If only I knew then what I know now.  

I remember feeling sorry for you, Nick.  I felt sorry that you may feel burdened some day.  I worried about you feeling embarrassed, being bullied or teased because of your brother’s Down Syndrome.  I worried about your future, knowing full well that a lot will fall on your shoulders. I was scared you would resent me and your Dad, angry and upset that we sealed your future as care taker for your younger brother.  We worried that you would feel neglected, unseen, since we pictured Sam needing a lot of extra attention due to his special needs.  Your dad and I promised you that you would never be overshadowed by Sam’s needs, and that you would be made to feel just as important.  We worried about you feeling jealous of your baby brother.  If only I knew then what I know now. 

I should have known that you, my little empath, would love your brother from head to toe, regardless of how many chromosomes his body contains.  No, you don’t know what Down Syndrome means because you’re two and a half, but you know Sam is special because he is your baby brother.  You’re drawn to him like a magnet, and he to you, and I wish you knew what it meant to me to see Sam’s whole body light up when he sees you.  When Sam cries, I can say, “Nick, go make your brother smile,” and you do! Yes, you may have more on your shoulders as you grow up, more than the average older brother.  You may have to deal with kids and, let’s be honest, ignorant adults, who treat you and your brother poorly, but these are the things that will make you stronger.  So, no, I won’t apologize to you, Nick, for your brother having Down Syndrome.  You are so kind, so empathic, so sweet, SO very special.  YOU are these things, all by yourself, but I know your brother will help you to grow and be the best person you can be.  I didn’t know all this when Sam was first diagnosed.  I know this now.  

Nicholas, I see you each morning, running straight for your brother, asking for hugs.  I see you, asking why Sammy is crying and making him laugh. I see you with your big personality, huge smile and goofy sense of humor. I promise, Nick, I will always see you.  I love you. I know I am blessed, Nicholas.  I thank God every day for the life I have.  I thank Him for the boys I have.  Nicholas, you are such a bright light in my life.  You lead the way to the path that we are on as a family.  You were chosen for Sam.  YOU are so very special. I love you.

Love,

 

Mama