My emotions feel so tumultuous. Just yesterday I was reviewing Cora's progress with her therapists, proud of what she's accomplishing and feeling patient about my expectation that she'll probably start to walk closer to her third birthday than her second. And then I hear of some of her little chromosomally enhanced friends taking their first steps and my heart lurches for a second. As proud of as I am of those little ones that are working so very hard, I feel that familiar pang nonetheless.
Today while out at a music show I watched the kids, the ones her age climbing and talking, looking grown up, while the littlest of babies were crawling circles around Cora. Before I knew it, surprised and a little embarrassed, I was wiping away a tear.
Some of the other mothers smiled at my pretty girl, asking me her age and commenting on her eyes or her pigtails, while others looked at her and avoided meeting my eyes. Are they just mommy cliques or is there something else there? Pity? Fear?
Or is it all me projecting my own insecurities and my own worries, amplified by my sadness, onto the people around me?
So much of the time I am so proud of her, so happy with her, wanting nothing to be different. And at other times, the differences seem to isolate me.
But lucky for me, I have an excellent antidote to my sadness and my fears. I just have to look into Cora's eyes and witness her glee, and she somehow washes it all away. For a while, anyway. It's those moments in between, when I look away and start to see her from the outside that the waves occasionally roll back in.
I would love to give you a hug because I felt like that last night. We had such a great therapy session earlier that day and had our eval on Monday. I was very proud of my little girl. Then we were at soccer practice and a friend had her daughter there. She was running around and drinking out of a water bottle by herself. My husband said bye to her and she said bye right back crystal clear. That is when I fought tears....she is 3 or 4 months younger than Hailey. My pride was gone and I was sad. When we came home later, my husband commented on how high maintenance the little girl was and how out of control she was compared to how well behaved Hailey was.
ReplyDeleteHi Leah,
ReplyDeleteI stumbled upon your blog from another person's blog (isn't that often how it goes?!). My son is 3 and has Ds (he also had an AV canal repair). This post really spoke to me. I've been there myself (and cried a bit at a story time for babies at the library a couple of years ago too!) and I would be lying if I said it's gets easier. Sometimes it just hurts to see other kids doing things that you wish your little could do. Just know that you are not alone--there are lots of us out here! Cora is one beautiful little girl!
Leah, I could have written this myself, I totally get it. This post describes perfectly how I feel at times. Hope you don't mind if I share it on FB :)
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ReplyDeleteOh my goodness this post brought back how I used to feel, but it does get better! i remember those moments, comparing with other NTs (neurotypicals), the pain because your child is not doing those things and then the guilt because you compare, its a vicious circle...I dont know when it happened to me, but I hit a place of aceptance at some stage, and stopped comparing (my girl is now 9). Doing some therapy helped alot (with a psychologist) so I really recommend that.
ReplyDeleteWe are now doing it again, with our adopted son (2 yo and he has DS) and you now what, I am totally enjoying him and I never compare, he is not walking, probably wont be until 3yo, and I dont care! Its such a release this time around, I am not going through the pain I went through with my daughter. I smile and laugh alot more this time, and actually have guilt around how I was so emotional with my daughter! Can't win, can we. LOL.
Hang in there, its obvious you are a great mother, just be kind to yourself, its not easy...
Oh Leah! I'm guessing that Ben's first steps played a part in your mood. I'm sorry. Remember that each of us has our own strengths and weaknesses. Ben has no words and no signs. But he does have an older brother that he desperately wants to keep up with. And that older brother was early to walk (10 months) and late to talk (2.5 years). It seems like Ben might be on the same path.
ReplyDeleteLeah, I have a 9 month old son with Ds, and your blog is what helped me through his AV canal repair. Thank you.
ReplyDeleteAs for the mothers who look away, they probably don't know what to say and are confronting their own discomfort with different. They haven't grown up enough (I mean that in the kindest way) to be comfortable with others not. exactly. like. them. The mothers who commented, well they've grown up and I'm glad they noticed Cora and her cuteness.
Before I had my son, my family and I wouldn't have given much thought to someone who had Ds in the same room with us, other than "oh there is another person here." But now that we have our son, we actually watch a little more just because we are more curious now. Kind of like when you buy a blue van you see blue vans everywhere. Not really but you notice more now. What I'm trying to say is that most likely people are noticing Cora as a toddler and not tallying up in their heads where Cora is developmentally. I know I didn't when I saw other little children who I could see had Ds or some other difference. But then there were lots of other children whose challenges were not seen, but were in behavior or other things that could not be seen.
Honestly I think it does get better. Last summer I wasn't sure Lucas would ever talk. His therapist asked me, "What are your fears, that he will be non-verbal?" And at that moment I knew if she said it, it was possible and it was my fear. But a year later, Lucas is saying words, understanding more, acting his age. It's been amazing. Our kids start off a little slower but they do catch up and Cora will walk and talk and do amazing things. As for the other moms, trust me they would be staring and judging even if Cora didn't have Ds. It's human nature I'm afraid. I've been there though and it's so hard to deal with and I never think fast enough to say the right thing. I'm sure there are people who pity us but they don't know how wonderful our life is and how it's been better because of our little ones with a little extra.
ReplyDeleteWow this is good...so well said and explained and point on with my fleeting like emotions of this feeling...I do think it does get easier in a way and less in a way and shorter in a way...but it still stings and aches as though it is fresh...I hate when I compare Maddie I feel almost guilty...but I just want for her in a strange panic way almost...that because it takes her such a long time to master a milestone i must protect her and me from hurt feelings...Cora rocks the pigs! Smiles
ReplyDeleteHugs hugs hugs, mama! These feelings are normal. We say not to compare and then we do. Sometimes, I think it is harder when we compare children with Ds to other children with Ds. I can sit there and look at Ellie playing around a typical child and say "well of course she isn't doing that yet. She is delayed because of Ds". Then I see her with another, YOUNGER child with Ds doing something that Ellie isn't even close to doing. It stings. All of our children have strengths and challenges. Cora's is gross motor. Ellie's is social and language. Hang in there, mama!
ReplyDeleteHugs! I have a lot of the same feelings, but when it comes to different things. Kennedy is doing so well when it comes to motor skills, but we are really struggling with some of the speech stuff. Okay, a lot of the speech stuff. It just goes to show how completely different kids are and that one day they will both be running around talking up a storm and neither of us will be focusing on these early days.
ReplyDeleteI have been feeling this way lately. I wonder if as our kids get older (mine is 2) and the developmental gap widens it gets harder.
ReplyDeleteThank you for putting your thoughts and feelings into words. It is nice to relate to someone else and still feel normal. :)