Perspective is an interesting thing. You don't have it while you are in the midst of a crisis - which is when you need it the most.
I think my perspective on what Down syndrome means or is has really developed recently. And I mean specifically MY experience with Down syndrome and how it has impacted Phoenix, Husband and Me.
Husband was such a good role model for me from the beginning. He always believed that even with DS, Phoenix was OK. That everything was going to be OK. And for him, it has been OK.
I didn't get it. I mean, I really didn't get it.
How could he be OK with DS? How could anyone?
But I've had some time to let DS settle within me. And to see how DS has impacted Phoenix. She is healthy. There are no heart problems. She doesn't get sick a whole heck of a lot. She sleeps well. She has grown out of her sleep apnea. She hears and sees just fine. Her development, while delayed, keeps trucking forward. She's funny and bright and capable of learning. And I am happy with how she is doing.
I am happy with how she is doing.
These are surprising words for me to write. Because if you asked me 2 years ago if I ever thought I would be happy with how Phoenix was doing, the answer would have been "NO". Not just NO, but a NO hurled at you with tears and heartbreak and hopelessness.
But I am happy with how she is doing. In fact, I couldn't be more pleased with her progress.
I have come to see that things in themselves don't actually change. They are what they are. No matter how we rail against them or reject them or view them, they are what they are.
So what happened?
I changed my perspective. I stopped judging her delays. I stopped looking critically at her development and the things she wasn't doing and started to look at what Phoenix could do. I stopped comparing her to other children. Oh, I notice what other children are doing and celebrate their development. Young children are able to accomplish some really incredible feats. They learn almost by osmosis. I can see that many children are doing things that Phoenix cannot yet do. But it truly doesn't bother me. I don't feel hurt to see that other children are ahead in terms of development. Because I have stopped judging.
Phoenix is where she is and other children are where they are. It doesn't imply anything. Objectively, things exist in isolation, free from emotion. It is us who gives facts meaning. We create and attach emotions to reality. So we can choose which emotions to attach.
I wrote this recently about Phoenix and her development:
I write a lot about how well Phoenix is doing. This isn't an objective fact. No one who is an expert in child development has sat me down to confirm this for me or anything. It is just how I perceive her and how positively I perceive her development to be. She is doing well because that is how I see things. I could look at her and say "oh she isn't doing x,y,z" and think about how delayed she is. I don't. Every day I look at the incredible things she can do and think "My kid is awesome."
We choose how to attach meaning to the events of our life. And so when it comes to Phoenix, I choose joy and happiness.