I write this from the cusp. Suspended in time at a point that will not exist much longer. In a few days, life will be marked as before and after. Emotions simmer on the surface, a mix of fear and worry paired with excitement and relief. Next week, there will be a meeting. Licensed professionals. Forms, data, resources, approval letters, and reports will all be slid across the table to me which I will force myself to absorb as I fight the urge to fall into an emotional blackout. I need to remain present, ask questions and hopefully, avoid breaking down in tears.
Many of you have experienced your cusp, and for all of us, it looked unique and different. Some of you will one day find yourself on the cusp. I write this to mark a moment in my own motherhood, one that I feel is not wholly my own – but one that our community has journeyed, and will continue to walk again and again.
Motherhood is universally hard. But for some of us, with medically fragile, differently-abled and special needs children – our hard looks a little different. Mamas, check on us. We are not OK sometimes. It’s a lonely place to exist, and we desperately wish our worlds looked just like yours some days.
The first time I read Welcome to Holland I sobbed. The kind of tears that make your throat burn, chest heave and shoulders shake. It’s hard to describe those emotions, the grief you process when you step outside of “typical.”
They’re all bragging about what a great time they had there, and for the rest of your life, you’ll say, “YES, THAT’S WHAT I HAD PLANNED.”
The pain of that will never go away. You have to accept that pain, because the loss of that dream, the loss of that plan, is a very, very significant loss. But if you spend your life mourning the fact that you didn’t get to go to Italy, you will never be free to enjoy the very special, the very lovely things about Holland. – Emily Perl Kingsley, Welcome to Holland
My child is not just a label. My child is not just a diagnosis, insurance deductible, referral form, data file, IEP, superbill code or 504 plan. My child has a favorite stuffed animal, he loves listening to music, he is kind, helpful and smart. I want you to see my child the way I see my child, and I also want to ask you to walk beside me. I need support. I want you to share in our victories, they may seem minor to you – but monumental to us. Listen when I tell you about the things that brought me to my knees this week, and please, please give us grace. Be mindful of what you say about the “hard kids” you know, and kind to the mom struggling in the grocery store with the 8-year-old having a tantrum.
Let’s be slow to judge and quick to love.
We each walk a unique journey, and this is mine. I promise to share my experience in an effort to break down that walls and whispers that exist around diagnosis. If you’ve been down this path before, or see it looming in your future – know you are not alone. There are so many mother’s that have blazed the trail for us, and many to come after.
I wrote this in April of 2018, and I still stand by every word. And just in case you need a reminder,
My child is absolutely perfect. And so is yours. Each child is unique and all children need different things. Maybe my son needs to receive and process information differently. Perhaps I have to tweak my own expectations and requests. But, by no means is my child broken, and neither is yours.