Last night Ari laid down in the bath on his back so I could rinse his hair. He didn’t fight me and try to sit up. He didn’t scream. He even laid back down all on his own and seemed to enjoy it!
This may not seem like a big deal to you, but it was more than a little milestone for me. You see, about a week before his first birthday, I had a mini breakdown as a result of his not wanting to lay back in the water. It was silly and very much out of the blue, but I find that my emotions surrounding my boy are often like that. He was crying and trying to flip over, seemingly scared of having his ears down in the water. Tim walked in and I said something like, “well, I guess swim lessons are out,” since I pictured him being miserable. Tim told me I needed to stop saying things like that and that he would be just fine. He walked out the door and my floodgates opened. I had always pictured Ari liking swimming and being in the water and he was generally very happy in the bath, but I began picturing him not being comfortable in a pool, and with that, picturing all kinds of other things he was never going to do or be.
I often find myself getting upset about one thing and having it spiral out from there, one negative thought giving rise to the next until I can’t even remember what started my mess of emotion. Well that is what happened. I posted a picture that night on Instagram, where I have an amazing support group of moms, and I explained how I am usually fine about my son’s diagnosis (as it doesn’t really affect much right now), but that sometimes I get so upset out of the blue. It seems like my love for him is so huge that I can’t imagine him not getting to do certain things without my heart breaking a little. I figure this particular wave of anxiety and sadness was likely brought on by the fact that he was about to turn one and we were about to celebrate a day one year ago when we were not celebrating, but mourning. Well, my wonderful mama friends helped me realize that not only am I not alone in this, but that Ari is going to do so many amazing things in his life. I already know this, of course, but to be reminded of it every now and then is necessary.
Back to last night... he did a small thing. He laid back in the water and was happy about it. But, to me, it symbolized so much more. It reminded me that he will get where he needs to be, but it will be on his own timeline. Just like when he went through the crowd anxiety phase. I wondered if he would ever get over it. Now he smiles and flirts with everyone around and doesn’t seem bothered by loud noise. Maybe someday he will be a back stroke champion in the Special Olympics, or maybe he will prefer to doggy paddle like his mom who never learned how to properly swim.
I put so much on him that is my own definition of what a person “should” do and like. Down syndrome or not, he is who he is, and I need to accept that and cherish what abilities and preferences he shows as he grows. This same principle applies to all of our children. Each child is an individual and worthy in his own right. We all have hopes and dreams for our children, which we should, but just as we can’t chose their sex, we must allow them to be who they are, not who we expect or plan for them to be. Sometimes I think that what he is going through or struggling with is related to the fact that he has Down syndrome, when in reality, all kids go through rough phases.
I can’t imagine Ari being any different than he is: a smiley, funny, stubborn boy who can brighten anyone’s day.
A boy who is crawling and pulling up to stand, who likes to babble on and on and yell even!
A boy who loves to play all of his various instruments and is motivated by crackers!
A boy who makes me laugh all the time with his funny faces, squinty smile, and wild hair.
He is a lovely baby who makes our lives richer. What more could we ask for? The rest of it, well, we are taking it one day at a time.
Lovely post, Lacey. Thanks for sharing where you are at.ReplyDelete
Sometimes we believe the ridiculous lies society tells us that raising our child is a competition.
If we are wise enough, we'll come to realize we are running in a completely different race to every single one of our friends. It is one of endurance and careful observation of a unique child we were entrusted with (with his unique set of gifts and circumstances).
I like to think that the marker of successful parenting is not at all about reaching milestones but rather to have a child who is secure in who he is, knows he is loved and develops character like confidence and humility. I do think it will take us their childhood not to feel the pressure of meeting arbitrary milestones though.
You are doing such an amazing job with Ari, Lacey! Please hear this from my heart!
Thanks for your very thoughtful response. I agree with everything you said. Thanks for being a wonderful friend and a great mama to look up to!Delete
Beautifully written. I, too, struggle when thinking ahead to the things Sam may not be able to do. I very often have to remind myself to let go and take it as it comes. We're so very blessed to have our boys, and I'm so glad that you and Ari are a part of our journey. :)ReplyDelete
Thanks Angela! Yes, we are very blessed indeed! I love seeing little chubby Sam and getting to share our journey together!Delete
Oh, Ari is such a gorgeous boy! I think I got to process a lot of those negative thoughts when we got our prenatal diagnosis, so thankfully I don't have as many of those 'moments' these days, but I totally get where you're coming from. A friend of mine has a little girl who is 4yo and has DS and she said whenever she gets gets too overwhelmed about the 'future stuff', she tries to remember that in 15 years time, she'll be 15 years more experienced as Miss E's mum and that 'stuff' will probably feel far less scary. That has become my mantra. I think, regardless of number of chromosomes, our children will continue to amaze us with what they CAN do, beyond the limitations of what our imaginations thought they 'should' be doing. And, if it's any consolation, I have never even tried to lie Nicholas down in the bath since he was tiny... I daresay he would just try to rollover if I even tried these days! ;) xReplyDelete
Thank you! I imagine our story would be so different if we had known prenatally. Wonderful mantra...thank you for sharing. It is so so true! I am already amazed with what Ari IS doing! Love to you and yours!Delete
Wow Lacey, thankyou so much for sharing your stories with the world. I found your birth story at Birth Without Fear and cried with you as i read it. But it was tears of sadness for how you were feeling then, not for Ari. I had to know how your journey was progressing and followed the blog link and i am so happy for you and your family. Ari is absolutely gorgeous! You can tell he is a cheeky little boy just looking at his pictures. You and your husband are doing an amazing job! Keep it up!ReplyDelete
I don't have a special needs child, but all of my 4 children are amazingly different and they are all different rays of sunshine in my life.
Best of luck to you,