“… abandoning hope is an affirmation, the beginning of the beginning.” – Pema Chodron, When Things Fall Apart
The first time I heard the parent of a special needs child talk about “giving up hope”, I was horrified. Luckily, I kept listening, so stick with me. The more I listened, the more I realized I was in the process of giving up hope as well. I have given up hope slowly since we received Lyra’s genetic diagnosis, and more rapidly since we received her neurological diagnosis. Giving up hope had been incredibly liberating.
When you’re pregnant you are full of hope. You hope your child will be healthy, do well in school, enjoy books/sports/traveling etc. You hope your child will be successful and independent as an adult. You hope that they find friends, and at least get to experience what an average child experiences. The list of hopes and dreams goes on and on and is different for each person.
The weight of that hope is crushing and can be debilitating for some of us with special needs children. “Hope” can be a dirty word.
The longer I held onto the hope that Lyra would be an average kid, that she would “catch up”, the harder it was for me to enjoy who she was. The more I hoped she would do things physically appropriate for her age (like use her arms, roll over, sit up, or stand), the harder it was for me to see the accomplishments she did make. The more I hope she says “mama”, the harder it is for me to notice the ways she does try to communicate.
I have had a harder time letting go of the “mama” thing.
I have given up hope that Lyra will cognitively ever by on par with her peers. I have given up hope that Lyra will reach physical milestones along side others her age. Giving up that hope has been incredible and liberating. Every time I give up hope that Lyra will be an average child, my eyes are opened to what she is. She is this bubbly little spit fire with her own opinion. She is fast to giggle and loves “peek-a-boo” in all of its various forms. She loves her Sandra Boynton books, like Are You a Cow, but only when she is in the mood to read. And she loves all things music, especially The Wiggles.
Giving up hope doesn’t mean that I give up on my child. I will always fight for Lyra and do my best to get her what she needs. I will always try to give her the tools she needs to achieve whatever she will achieve in life. However, giving up hope has allowed me to enjoy where we are today. Have I fully given up on hope? Nope. I still yearn for her to look at me and say “mama”, and mean me. Maybe one day it will happen, and maybe one day that hope will also slip away. Both are okay.
Giving up hope allows you to stop playing the “what if” game, and start playing “what is”. It doesn’t mean that you don’t strive for more, but you start from where you are instead of where you might have been. It allows you to move on from the past and leave an alternative reality that only you live in.
I am giving up hope. Instead I have what is. And that is more than enough.