Privacy and self-protection lead to isolation.
Transparency and honesty lead to connection, community, and love.
Yet, it is not so black and white when you find out your child is different, or disabled, or diagnosed with SOMETHING. Do you tell others or do you not?
When Ryan was first diagnosed with PWS at 5 weeks old, our knee-jerk reaction was to keep it to ourselves. Maybe tell family and closest inner circle of friends, but that is all. We didn’t want to risk “labeling” Ryan. It wasn’t for anyone to know what felt like an awful prognosis. We had NEVER heard of PWS. NO ONE had. We were so scared and so shocked.
It lasted 24 hours.
We quickly did an about-face on our philosophy. One of our closest friends that we did tell, exhorted us to NOT be silent, not be closed off. She said something like this:
“First of all, this is life-changing. This will be all-consuming. This diagnosis has shifted your world dramatically. To not share this with anyone, will leave you isolated and alienated from the ones who WANT to help you, who WANT to love you and WANT support you on this new journey.”
We had a choice:
Privacy that would lead to loneliness.
OR—openness that would lead to a lifetime of love, grace, support, and the prayers of others.
We can’t do life alone.
We can’t do tragedies alone.
We can’t do crises alone.
We can’t do parenting alone.
Sometimes we think that privacy (of a personal or family or marital struggle) is an act of self-preservation, but actually it is an act of self-destruction.
We can’t receive love alone.
We can’t receive help or counsel alone.
We can’t receive strength and courage alone.
We can’t receive healing alone.
Obviously, I have chosen to live my life very out loud, as I am a blogger. You don’t have to have a blog. You don’t have to talk about it on social media. I’m not saying that. Unless you feel CALLED to do it, as I truly do.
But share with SOMEONE or a few SOMEONES. Start a support group of moms or special needs moms in your town or school district or church or temple.
A testimony to this practice of openness was the outpouring of generous and loving comments I received on my last blog post which you can read here. I received 38 comments on my website and almost 100 on Facebook. I cried reading everyone’s kind, encouraging and life-affirming words to me. It was overwhelming truly.
This is only ONE example of a million shows of heart-felt kindness I have received in the last 13 (almost 14) years of Ryan’s life.
Openness means you are accessible, that there is a passageway IN. And if I had journeyed all these years quietly to myself about Ryan’s PWS, NEVER NEVER would I be surrounded by such transforming love. There would have been no way for it to get IN.
If we had never reached out to the Prader-Willi California Foundation when Ryan was diagnosed, we would probably be a hot mess in so many ways. Honestly. The STRESS is so incredibly high on a family, it’s dangerous. But we have been taught many strategies over and over and have been given tools to survive the madness that is PWS in our lives. We have fellow families to share with, to learn from, to vent to, and receive perspective. It’s priceless. It has been like a cashmere shawl wrapped around us in protection and warmth. It is imperative to our health and well-being to know we are not alone.
This is the same for whatever crisis or challenge or grief you are going through in your family. You were not meant to do this alone. EVER.
Share. Open up. Vent. Be vulnerable. Knock down the walls you have erected. And you shall receive.