Down syndrome awareness day two...
I touched on this over on Facebook, but wanted to elaborate a bit more over here. One of the first things I heard when Emily was born was "I'm so sorry". I knew they meant well, but what exactly were people sorry about? I had this absolutely beautiful little girl lying in my arms. Yes, she was very sick and we were very scared of what the next several days would bring, but she was BEAUTIFUL.
Was she the child I was expecting? No. She was so much more. She had these gorgeous almond shape eyes with this little hint of sparkle in them. She was the tiniest little peanut (at least as far as my babies went) and she had the most incredible head of hair that reminded us all of Woodstock. My mom even found a stuffed one so we could take pictures of our little mohawked girl with her look alike.
Not once were we sorry for her arrival. I can recall my husband; upon learning the news; taking her gently from my arms, kissing her forehead, and telling me she was ours, she was beautiful, and she was perfect. He was right.
So, in the interest of helping others know what to say when dealing with a friend or family member that has received the diagnosis of Down syndrome, here are some suggestions on what not to say:
I'm so sorry, but you can always try again. (This one really burns me. I got absolute perfection with Emily. Do you not see what I do?)
Was it something you did during pregnancy? (Really??? No. Trisomy 21 is just a genetic difference and no one is really sure what causes the 21st chromosome to replicate three times. I just like to think of it as winning the genetic lottery.)
Oh, kids with Down syndrome are always happy. (Yeah, could someone please tell that to sassypants Emily? Admittedly, Em is generally a happy go lucky child, but she has emotions. She feels hurt. She gets angry. She is not some robot that simply smiles and goes about her life.)
Did you get testing during pregnancy? (Another one that really burns me. Some of us did, some of us didn't. The common thread with all of us is this; knowing prenatally or knowing at birth didn't change a thing. Our children are wanted and loved and no test in the world can tell me any differently.)
I realize people have questions and trust me, another common thread about parents of children with Down syndrome is that the majority of us LOVE discussing our kids. We are happy to answer questions that arise in an effort to help educate and raise awareness. I just want people to understand that we feel many things when facing this diagnosis, but "sorry" is not one of them.
If you don't know what to say to a new parent that is just starting this journey, just think about what you would say to any new parent:
Congratulations, he/she is beautiful.
How much did he/she weigh?
Was labor quick or did you labor for hours?
Are you going to breastfeed?
Cloth or disposable diapers?
Does he/she sleep through the night well?
Is there anything I can do to help you out around the house while you recover from childbirth?
Having a child with a disability does not equate sadness. In our world it meant absolute joy. During the first days of our journey, there were moments I wanted to discuss the diagnosis and my fears and there were other moments I wanted to focus only on my new baby girl who just happened to have Ds. Take your cues from the parent and realize that first and foremost, they have a new bundle of joy and want nothing more than to be treated like any other new mom.
For the record, Em weighed 7lbs. 1oz. Labor was very quick. I attempted to nurse, but sadly Em was too weak to latch, but I was able to pump for a month. Disposable all the way. She was a great sleeper and yes, I loved when family came by to take the older kids out for a treat while we adjusted to a life we could only imagine.
Emily is a gift sent from the heavens and we are so very thankful for this gift. No sadness here.