When Maddie was first born, Grant and I needed to take a little time to sit with Maddie's Down syndrome diagnosis. We only told a select number of people, because we weren't ready for all of our family and friends to know at first. But, after a few days, we knew it was something we needed to tell people. Not that we were necessarily ready, but it wasn't something we could, or even wanted, to hide. It was like ripping a bandaid off, you don't really want to, but the bleeding had stopped, momentarily, and it was time to give the wound a little fresh air. We were incredibly proud of our new, beautiful, and wonderful daughter, but we weren't sure how people were going to react. So, in order not to relive it over and over, we sent an email to most people letting them know what was going on, and others heard it second hand from friends or family.
After the news was out, it was much easier to see and face people. I didn't have to worry about their reactions, or judgements, or anything else that may have gone along with it, because they had already done that before they saw us. As a result, I have not had much practice telling people about Maddie. In the beginning, I had this urge to tell everyone I met, the man checking us out at the grocery store, or the woman who stopped to stare at her in Ikea, I never did, but the urge was there. Then I realized, that I didn't HAVE to tell anyone, unless it was something that I wanted to tell them, and that complete strangers didn't fall into this category.
Since Aiden has started school, I've gotten to know some of the other parents a little better. At first, these parents fell into the 'complete strangers' category, and they didn't need to know, but they aren't complete strangers anymore. There are times that Maddie and I are in the viewing room watching Aiden and other parents will come up. Inevitably, they start to ask normal questions about Maddie, is she crawling yet, talking yet, etc. There is always backpedaling on their part to reassure me that kids develop at their own rate when they find out that she's not doing these things yet. And, with a couple of parents, I have felt like they have been searching for some answers because they know that something is a little different with Maddie.
At first, I was hesitant to say anything. Because of my lack of experience in telling people I wasn't exactly sure how and when to say it. I was also afraid of having to see, hear, and feel peoples reactions when they found out. And lastly, I didn't want people to define Maddie by her Down syndrome and assume things about her based on any stereotypes or assumptions that they have about people with Down syndrome.
An opportunity arose the other day when two women, with children similar ages to Maddie, were asking questions. The backpedaling and inquisitive questions began, and I decided to just say it. My heart was racing, and I could feel that pit in my stomach start to grow. I was ripping the bandaid off... again. I'm not sure what I expected, but my worst case scenario didn't happen, however, neither did my best case scenario. Both women were respectful, and asked questions, but had assumptions like Down syndrome runs in our families, and that it only happens to older women. It made me wonder what else they assumed, but weren't saying.
As we were talking, I realized that one of my new roles as Maddie's mom is to educate people about Down syndrome, for the sake of my daughter. Before Maddie was born, I didn't know much, so I hope that I can do it correctly, but I'm sure I will make mistakes along that road. It's part of the learning process. What I wanted these women to know most of all, is that Madelyn is not that much different than their children, that it will take her a little bit longer to get where their children are, that she may need a little more help doing it, and that it's ok. Different doesn't equal worse or bad. It adds diversity to our lives and our world, and we're all a little different in some ways. Just look at this little ham, who requested a bow tie, like the Cat in the Hat, but blue! :)
It has gotten easier, the bandaid doesn't stick as much, and since this incident, the opportunity to tell another parent came up again, however, this time, I got the response that I wanted and needed. It went a little something like this,
Her: How old is Maddie again?
Me: Almost 10 months
Her: I bet she's crawling all over and just getting into everything!
Me: No, not yet.
Her: Well (slight pause), all kids are different... It'll be no time before she is.
Me: Maddie actually has Down syndrome, so (interrupted by Her)
Her: Oh, so it's just going to take her a little longer than other kids.
Me: (smiling and trying to hold back from crying and hugging her at the same time) Yes, just a little longer.
The conversation went to something else after this, I don't remember what, but I will never forget this part of it. This woman has no idea the amount of acceptance and understanding she gave me in that one little sentence, even before I had a chance to say anything. It was amazing. Before this happened, I wasn't sure what kind of response I wanted, but as soon as she said it, I knew that was it. I will forever be grateful to this woman for not only accepting my baby immediately, but for also showing me what I was missing by not telling people. Because, not only are there going to be negative reactions (not that the previous conversation had been negative, it just wasn't filled with the understanding that went along with this one), but there are also going to be positive reactions, and I won't know which one I'm going to get unless I put it out there.
A few days after both of these conversations, the director at the school met me at the door to let me in. She said that Aiden's teacher told her that Madelyn had Down syndrome and then shared with me that she had had a son with Down syndrome who passed away when he was 13 from heart problems. She told me that he was the best thing that she has ever had in her life and that he brought so much joy to her in those short 13 years. She also said that it was so hard for her at first, but that it only got easier because he was so easy to love. I agreed with her, loving Maddie has never been the hard part, but learning to love the Down syndrome has been a struggle at times.
The instant connection I have with other mothers of children with Down syndrome, the shared bond between us, this common knowledge of what we have gone through, and our endless love for our children, the wish for acceptance and love for our children is an amazing thing. I wondered how badly it stung for her as she ripped the bandaid off to tell me about her son, but she did tell me that seeing Maddie brought a lot of memories back for her. I hope that they were good memories and I am so appreciative that she was willing to share and open up with me.