“First you should know that they have planets inside just as you do; rivers; acacia trees; windfall apples. They have remnants of the sea, permanence, pride.”

- Stephen Kusisto, “The Souls of Disabled Folks”

Happy happy 6th birthday, my love. This was my year of getting to know you again. Or, maybe, just getting to know you.

For the past 5+ years we have focused our efforts almost single mindedly on physical therapy (PT), occupational therapy (OT), speech therapy (SLP), vision therapy, orientation and mobility (O&M) and all manner of alphabet soup services. I wanted you to be happy, but that felt so much less measurable than being strong, or able to stand/step/walk/grasp/turn/look. I still read you books and sat with you to look out the window or swing on the porch, but all the while I told myself it is not enough, I could do more. I could work on standing, or identifying colors, or choosing between two options. Such is my life as a special needs parent – always feeling I could, nay, should do more to help you grow.

Then, this time last year, we ended up in three consecutive hospitalizations for some serious issues. Coming out of that, you paradoxically felt better than you ever had. Seizures went down, strength went up, and you seemed more aware than ever. It was great for a few months, before we were again robbed of you. And I MISSED YOU.

I reflected on that quite a lot. I realized that for 5 years, the lack of response (eye contact, reciprocal communication) made it very hard to connect meaningfully. I did everything I did because I love you, because I want you to be happy, and I want to be the one ensuring that happiness. But I was never sure of how you felt, or even whether you truly knew who I was. And then I received the gift of what appeared to be intentional smiles (see how I felt the need to caveat even that?). I began to see more causality and intention in your actions. More awareness and enjoyment of your environment. And the more I saw, the more I wanted to see – I was thirsty for the sound of your giggles, hungry for signs of your soul.

I knew you were in there, I have been aware of your essence for a while now, but getting to experience it more fully was intoxicating. And then, as is often the case with CDKL5, I was robbed. Again.

We embarked anew on the journey of testing medication dosages – taking some down, increasing others… and after many months, a week or two ago, you reemerged. You showed up at school with your sassy personality (cue the awesome side eye to your friend), enjoyed your therapy dog visits, trampoline, birthday party, and gave us so many smiles and hugs at home! I try so hard to enjoy every single one, because I don’t know how long they will stay this time. I don’t want to lose them, and would do anything to ensure their permanence.

This year, Stephen Kusisto’s words rang truer for me than ever. You are as full a person as anyone I’ll ever know. I only hope I can get to know all of you!

Happy birthday sweetheart! You are so loved!

Mami

During the whole month of June, I hope you will all join me as I fundraise to help the International Foundation for CDKL5 Research (IFCR) Move CDKL5 Forward. How does it work?

Make a donation right here on my page. Whatever amount you donate, large or small, please know that I appreciate your generosity! Our usual goal is $514 to honor Lina's birthday, but since she is turning 6 this year we multiplied the goal, and we hope you will help us celebrate her properly!

Get out and MOVE in June! Want to 5K? Great! Go for a bike ride? Awesome! Get out for a leisurely walk? It's all good! Post your activities on social media with the hashtag #CDKL5Forward to help spread awareness! If you are local to Front Royal, come join me on my walks, I would LOVE the company!! If you would like to actively track your miles, join my team on JustGiving and gather miles directly for our final count. Let me know if you need more information on how to do that.

An EXCITING development back this year is that there is again a MILE match!!! So for the second ime in the history of our Move CDKL5 Forward event, simply joining our team and logging your miles will translate into actual dollars for research!! How can you say no to that?

If you feel you'd like to do this, please create your page as part of Lina's Light team - for consistency it would be lovely to name it "*YourName for Lina's Light" but anything will work if you like something else. Then find the button on your page to connect your preferred mile tracker, and get to walking/running/biking/sportsing with us (please contact me if you need help!). Lina cannot do it herself yet, so she is counting on us to do it for her!!

Thank you for supporting my Team and helping to Move CDKL5 Forward! And more importantly, as always, thank you for being part of our tribe, and for loving Lina so well!