Two weeks post diagosis, things are pretty much back to normal. The period of sadness that followed the news has morphed back into regular life - still a bit of sadness, but a lot of happiness and hope too.
I have been thinking a lot about why the diagnosis was so difficult to take, given that we knew it was coming. Again I will repeat that we weren't surprised, yet I was surprised in myself to feel such intense pain upon hearing the words.
I have come to realize that while I may not have been in denial, it was easy to go along with everyone else's very hopeful picture of our family:
There was endless talk of the boys playing hockey and being the next superstar Sedin twins.
There were jokes about the two of them chasing each other around the house, running us ragged.
There were conversations about backpacking adventures around the world.
When these conversations were happening, I would smile and go along with them even though I knew in my heart of hearts some of that was unlikely to happen. Because it was easier to "pretend" that our life was actually going to turn out like I had hoped it would, instead of admitting what I knew to be true.
And then the diagnosis came along. There was no "pretending" anything anymore.
Yes, Nolan may play hockey....and Asher may be a musical genius instead of receiving perfect cross ice passes from his brother.
Yes, they will find some way to chase each other around the house and run us ragged....just maybe not exactly how we'd pictured it.
Yes, we may still do family backpacking trips around the world....Asher might just need some extra time and assistance.
By no means are we going to let CP stop Asher, and us as a family from accomplishing our goals and dreams, but sometimes, it might take some more work and creativity. Our future will be a bright one....but it is still not the future we had imagined for ourselves. We have endless supportive CP families out there assuring me that we'll be ok and our lives will...one day...be "normal". Just a new normal.
I know that we are blessed and we are loved and that things could be so much worse. But things could also be easier, and for that, I accept the sadness.
Grieving the future you believed was rightfully yours is hard.
I don't think there is a "normal" we all adjust to how things flow for us and consider that normal. I think this will make your life so much more creative and fun. You will never be the family to take things for granted and your babies will teach you so much more about love and patience than you ever thought. You guys have dealt with what I think I'd consider so much worse when they were born than this. You all will tackle this no problem!
ReplyDeleteI went through the same phase once when Dr P in Vic said the words which I avoided the diagnosis also but ya.
ReplyDeleteAs for chasing how about tourmenting! At this moment I hear what sounds like Kendryk Sitting atop Julie.
Which makes me wonder what travelling with both of them to Vic next week is gonna be like. I will be the bald Mommy by the end of the week!
Awww Tracey...so getting this...your post is so similar to one I wrote a few months back about dreaming new dreams for your family...which is exactly what you are doing. But that process is heart-wrenching...giving up those old dreams you had. Hugs to you girl (I'm working on that blog post for you...I've got some ideas swirling around in my head)
ReplyDelete"A new normal" I have delivered that line of assurance and been given that line in assurance more times than I can count. You might always grieve the old normal even while embracing the new one. Its a confusing roller coaster how we actually do feel and how we want to feel.
ReplyDeleteI read an article a long time ago about familes dealing with the reality of having a child with special needs. It was about going on a trip and expecting to land in Brazil but instead you land in Paris. At first the family is disappointed as Paris was the not the dream vacation they had always planned on but once there they were told that the plane could not be re-routed, not now and not ever. They learn to accept their fate and realize how truly amazing Paris is and eventually cannot recall what their original adventure was suppose to entail. I am not doing the story justice but I always found it comforting and hopeful.
ReplyDeleteLeanne
i have CP and i try my best not to let it stop me i am a collage student come visit my blog sometime
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