I honestly don’t remember the last time I spent 12 hours alone. Surely it was before the pandemic began. But that was what I had on my first night here. Dan was at his “Hawaii Hale” packing and savoring his last night with his friends. So, I had over 12 hours with no one to talk to, nothing to put away or clean up, no dogs wanting food or attention or both, not even a house to clean or organize.
Honestly, it was quite heavenly. I did my best to be responsible and head to a Safeway in Manoa where I thought the food might be cheaper than in Waikiki to pick up a few groceries. I unpacked everything and then made sure to get down to the beach for the sunset, thoroughly enjoying the people watching as a side show to the sun disappearing into beautiful clouds on the horizon.
Back in Dallas, I am always… doing. Since I am always doing… something, my thoughts and feelings are almost always about…. what I am doing. (For those that follow the Enneagram, I am classic 9 so that puts me in the “Gut” Center of Intelligence, which equates to generally responding to life based on what our gut, or instinct, tells us to do, rather than responding with our head, i.e. thoughts or our heart, i.e. feelings.) I come here, settle in for a few hours and take a breath. Then I sink my feet into the sand, breathe in the salty air and watch a gorgeous sunset. That’s when my thoughts and feelings re-engage and I start feeling whole again. Of course, since I was alone, I immediately started missing my family! But I was also thinking about the future, how to be a better wife and mom, what I want to do with my life besides being a wife and mom. You know… easy stuff! But it felt good to feel fully engaged again.
After a surprisingly good night’s sleep (other than a couple reeeaaallllyyyy early facetime calls from my sweet little Casey who doesn’t fully grasp time changes across the globe) I enjoyed spending the morning thinking about that sweet little Bird that woke me up only to tell me that she was going to let me sleep. 🙂 March 21 is World Down Syndrome Day, so I tried to remember what it was like as Mike and I were being thrust into this whole new world that would change the trajectory of our life forever. I only wish that I had a ‘me’ back then on November 22, 2003 to tell me what I know now. I could have really used her. So, I wrote it out and posted it to Facebook. I am hoping that it will help some of my friends newer to the journey.
To celebrate World Down Syndrome Day… 21 Things About Having a Daughter With Down Syndrome That I Wish I Knew 18 Years Ago…
1) She will make you laugh when you least expect it. Especially when she lands a movie quote in the middle of a conversation with impeccable timing.
2) She knows exactly what she wants. She just has a hard time expressing it sometimes and you just need to be patient.
3) She has a sixth sense about things, especially people and their emotions. It must be her superpower.
4) Her other superpower is picking the perfect playlist for the occasion.
5) She is the most honest person you will ever know.
6) Having her as a sister will help her brother become one of the most amazing human beings.
7) She will automatically connect you with some of the most incredible friends who will always and forever be there to laugh and cry with you. You won’t know how you got along without them. (Looking at you Paige, Luke, Karen, Chris, Laura, Cindy, Neene, and so so many others!)
8. Extra candy will magically appear in her pumpkin Halloween bucket, much to her brother’s chagrin. Just let her have it.
9) You will get so used to her being noticed by others that you will forget to even care why. At least, until she notices others noticing her, then it will either piss you off or encourage you to make a new friend.
10) A really great and amazing “Down Syndrome day” always follows a bad “Down Syndrome day.” Just be patient.
11) She will wrap her dad around her little finger on Day 1 and never let go. You won’t mind one bit.
12) You will be so proud of her for many things that your heart won’t stand it sometimes and you will cry and then be embarrassed that you’re crying.
13) You will find your voice to advocate for the needs of marginalized communities like hers. And her brother’s.
14) You will get to talk to dozens of families just starting their journey and help them see the beauty ahead. And it will bring you so much joy.
15) You will become friends with her doctors, her nurses, her therapists, her teachers, and her coaches. They are amazing people.
16) Birthdays will always be celebrated and special. She will remember the dates even when you don’t.
17) She will remind you to say yes when given the chance to take that trip, make that move, and follow your own path.
18) She will test your patience with her 326 questions per day.
19) She will keep you on time and on schedule and if you aren’t, she will get onto you about it. So be ready.
20) She will have you thinking and wondering and planning (and worrying) about your future every single day.
21) And finally… She will melt and change and open your heart in the most beautiful way. Just let her.
Happy World Down Syndrome Day to my sweet and beautiful Little Bird. And to all those who get to be a part of the Down Syndrome journey.