Thank you to all for your words – words of comfort, words of friendship, words of wisdom, and words of advice. I appreciate them all. This will be a short update as I feel compelled to answer but at the same time, work calls tomorrow, and I stayed up later than planned building lego towers with Peter. Amazing how some one-on-one time with out distractions can remind you just how in love you are with someone!
My worry, as does that of many of the moms who reached out to me, comes from a place of caring – a fine line separates them! Because we care, we worry we are not doing enough. Six years ago someone told me I was a bad mother for working. Not a day goes by that I don’t think of those words and they haunt me. I know some of you have talked me through this too many times – but the hurt is still there. So when I love my family with the intensity that I do, and I worry that I am not giving them enough of me, words such as those sting extra hard. At the end of the day I am like everyone else – I want to reach the end of my life and feel like I was a good person who did the right things. What is a good person? Easier said than truly defined as that is where I often hiccup myself. I trust that God will fill me with the grace that I need if I open myself up to him and as he has during many of the difficult parts of our journey with Peter, but I struggle with the no worrying. Worry comes from caring, and caring is what I am called to do. I am thankful every time Peter pulls through a health crisis, but yes, I worry every time he gets sick again. We have spent months in the hospital since he was born – it is the caring and the worry that motivate me into advocating and celebrating. Today I worry about things never imagined, and yesterdays I worried about things that are nothing to me today. I hope to continue to grow, learn, and be more purposeful in every way.
In the event it has not been clear since I started blogging – I love my son beyond belief!! I love him with an intensity I did not know possible. I love all my children, but Peter is there is a difference – a vulnerability and openness that the world can’t rob him of as he grows, but which also makes him an easy target. Browsing the internet alone shares disturbing images of disrespect towards individuals with Down syndrome in the name of humor. So yes, I know my son is disabled and looks different, and that alone brings attention to him. I also know that for every person who judges negatively there are others who embrace him with a smile. I am not embarrassed by Peter, nor do I try to hide and pretend he is not disabled. I am proud of Peter and wish everyone was as blessed as I feel with him in my life. I would have talked to the girl had the time presented itself – I was looking for the right words. Peter had different plans and for anyone with a “runner” in the family, you know when he says he is leaving you catch up or you find him in the road. Which Peter has already done this week! He said he wanted a walk, I said I needed to go potty first, a few minutes later he had already disabled the 3 locks on the back door and had made it to the street behind us. So when Peter says we are done, I follow!
I have talked to many kids in the right setting about Peter, answered questions about his eyes, his floppy ear, why he walks funny, and so on. I have had to explain why he doesn’t learn as fast when kids playing with him get frustrated. I actually prefer to be asked than to be avoided. I have presented on Down syndrome and people first language at two of my kids’ schools. I have answered questions from adults and grinned through some hurtful comments to find a learning opportunity. Comments like “I guess you were too old to have kids and got stuck with a retard”. Yes, they happen. And yes, I have done my best to educate – even when the conversation starts from a place of judgement. This time, time did not allow for that. And I hope if nothing else she knows that in a parents’ eyes their children are beautiful and will remember that at a meaningful time for her.
There was concern I had judged the girl. I’d like to apologize because at some level I did. For the record though, I don’t believe any pretty girl is a Queen Bee – I like to think I have two beautiful girls and know many others that are gorgeous inside and out who aren’t Queen Bees or wanna-be’s. I don’t know this girl but I have been around girls long enough to discern some behaviors, tones and attitudes – and have comforted my beautiful daughter from words of judgement and not curiosity. I believe our children can learn, but adults have the responsibility to model the right behavior. And this is a do as I say, and not as I do moment! When my daughter exclaims that speeding is a rush, or my son yells out from the back of the car “HELLO! GREEN MEANS GO!!” I know I have some work to do on the behavior I model. We all do! None of us are perfect.
Off to give Peter another breathing treatment and hope for some sleep tonight – he gave me one good night of solid sleep and has since been up every night uncomfortable. I think he rolls over onto his accessed port and it pokes him. He is naturally a tummy sleeper with the rear up in the air – so trying to get him to sleep on his side is not easy!
Good night friends!