I have spent some time reflecting back on the kids' diagnosis. I read old blog posts from that season to try help bring it all back. (You can find them by clicking on the three horizontal lines at the top of the page and then click on Archive. March and April of 2008 was when we learned all about Sanfilippo Syndrome.)
I was recently contacted by a mom whose daughter was diagnosed. My conversations with her prompted my reflection. She commented that I seem so strong. I am much stronger than I was when I had to race home from the hospital to Google MPS III. It has been over a decade of heavy lifting - physically, emotionally, mentally and spiritually.
She will also begin to use muscles she didn't realize she had. And with each new day of aches and pains, she will grow strong too.
These are a few things I passed on and I thought it would be helpful to get them written down for others.
Be kind to yourself and your partner. You will process this devastating news in different ways and at varying paces. Continue communicating openly with one another. And seek to find friends who will allow you to speak openly and honestly, without feeling the need to fix.
You are grieving. It isn't a death, but it is a loss. A loss of expectations, hopes, dreams. Reading about grief may actually prove to be a helpful way to navigate your emotions. It normalizes the chaos. I love the book "It's OK That You're Not OK".
Friendships will inevitably shift. People will show up who you never expected. Friends will also fade away, simply because it is too much for them to handle at that particular time. People will also appear because they want to be part of the drama - avoid!
Create healthy boundaries. Learn to say "No, thank you" - no explanation needed. Also work on trying to verbalize what you actually need and accept help from those desperate to enter into your pain.
Don't feel shamed by your pain. People say really stupid things when they don't know what to say. Try to show grace, but also protect yourself.
And if you are reading this because someone you love just received the diagnosis for their child: Show up. Drop off flowers or coffee. Send a note or text. Commit to being there for the long haul; this is a marathon for the parents. Follow their lead. Listen for ways you can help support them. Don't try to fix it.