Someone finally asked...

Today I went into Rite Aid and when I was checking out the cashier asked to see the baby. (I always put her in a sling when we're out) I showed her and she said, "She is so sweet, does she have 'Downs' ?" I said yes, that she did, and it felt so odd to be asked. Generally either people already know, or they won't say a word, it seems to be like telling someone their fly is open, if you see it you don't want to say so because that person will then think you're staring at their crotch. (Which we all know isn't the case, but somehow you feel like they will think that!) I've wondered all the time if it's obvious or not that she has it, because no one ever says a peep. I guess it really isn't that important anyway, what they see first is a sweet little baby! I did cry on the way back from the store, not sure why, I am grateful she acknowledged it.

I think probably what made me upset is the fact that I'm a worry-wart, and I want people to see Gemma for who she is and not define her by her disability. OK, nap is over...the residual car ride relaxation has worn off and I've got to go get her her oatmeal!

Don't feel bad for us please

I think it's awkward for people when I tell them Gemma has Down syndrome. She's just a baby and I'm not sure it's obvious all the time just by looking at her.... I get a look like...ohhhhhhhh......usually followed by a well intentioned comment of, "I'm sorry, or Are you okay with that?" Well, first, no one has to be sorry, yes she will face some hurdles in her life, but don't we all. She is physically quite healthy, so we are grateful beyond words for that! Yes, we are okay with it. I will admit, I cried for days when I found out, then I started really thinking about what it all means. It is what it is, and in some ways we are very fortunate because there is so much support out there, and so many resources available. No one knows what their child's future holds, I think when your child has any sort of condition that slaps you in the face with that reality early on it makes it just a little harder to swallow. I have learned more about myself in the last 5 months than I every thought possible, and I believe Gemma has been sent here as a true miracle, a gift of love...but now she has lost patience with me not playing with her, so I have to run....

Stigma vs. Reality

So I was thinking about people's reactions when you tell them your baby has Down syndrome, (and probably most any other "problem" your child might have). It's usually followed by an "ooooohhh, sorry, that's too bad..." The thing is, even though they mean well, and probably don't know what else to say, I really don't want anyone to feel bad for Gemma, or anyone else in our family. In truth, I don't even know why I feel it necessary to tell people I know, except I feel if I don't that means I'm in denial or not proud of her as she is. She is a perfect, beautiful little girl, and we all love her and her extra chromosome. Part of my fear and sadness when learning that she did indeed have Down syndrome was that people would always look at her and assume they knew all about her based on the facial characteristics which make it obvious. It is like a scarlet "D". I worried about the future, and how it might be hard for her, how her choices might be limited. What I realize now is that I was an idiot...maybe that's too harsh, but I was certainly ignorant to some things. First thing is, she is very much like a typical baby, she has not been a challenge at all. (at least not more of a challenge than any other baby) Second thing I realized, thanks to some very basic pointed questions from my 5 year old, is that there is nothing she can't accomplish if she wants to. She can still play, have fun and have friends. She is very much thriving on the love she gets here at home. She's smiling, cooing, giggling a little, she loves music and dancing, and she hates being messy. I still worry about her future a little, but I am learning to focus on today and really embrace every moment. No one is promised tomorrow, even those of us with a mere 46 chromosomes. We all want to be happy, and we should all be allowed to define what happy is to us, no matter what "problems" we may have, no matter whether those problems are visible or not. So, I guess my lesson learned is that once the layers of stigma got peeled back, what was left was not nearly as scary as I thought it would be. The reality was more beautiful that I could have ever imagined.

Today...

Our life right now is wonderful. We have 3 children between Aaron and I, Harlie, 17, Brendan, 5 and Gemma who is 3 months...almost 4 months now actually!! Gemma has Down syndrome, but so far is just like any typical baby. So..what's different then? Why blog? Well, I realized that what I thought of as "hopes for a good life" for my children, were actually my expectations of them to fulfill what I considered a good life. What constitutes a good life anyway I asked myself? Is it what society dictates? Do we aim to please others? Is that fulfilling or does it leave us feeling empty and as though we've somehow violated our own soul? A good life, in my opinion, is one that you enjoy living, that is filled with love, and that allows you to feel like you can be true to yourself. My children are not here to validate me or accomplish things I wished I had done. Their life won't necessarily be perfect based solely on the number of chromosomes they have. I love them all so very much, and I accept them as they are. My job is to guide them on the beginning of their life's journey, not to choose their path for them.

I've learned a lot

I've learned a lot from my children... a lot about myself to be more precise. I never would've thought they could help me grow so much just by being them. 
Brendan is 5 years old, he'll be 6 on April 25th, Gemma is 3 months old now, she was born on December 19th 2010. There seems to be a lot of background leading up to her birth, not just the lessons that came after...I'll take this step by step, but I'll have to save it for another time when I have more than 5 minutes!