Tired

I counted up the months, today. It’s been 8 full months that we have been in strict quarantine as a whole family. 1 year for Lydia, and her 3rd winter. It’s starting to show 😆 I mean, it was always showing, but I find myself again evaluating what we are doing and the pros/cons. Local numbers are the highest they have been and our hospitals are at capacity. Dan works at a hospital, and employees have been burned out for months. In fact, nurses are now flying in from New York to back us up. 🙏🏻 Our state finally—FINALLY—instituted a state-wide mask order (because elections are over now of course 🙄), but we are all wondering if it’s too little, too late. The local medical community has been screaming for action in the local papers, and I feel so much for them. It’s all a mess—as you all know. Our situation is not unique.
I am starting to see new needs surface for all my children (and myself) and we are trying to shift weight around to address them. This is all to say...
We are fine. But so tired. I drag myself out of bed in the mornings knowing it’s one more day of juggling all. the. things. By myself. It has become woefully obvious that I am not enough 😆😐 This is not a plea for help or pity. It’s not meant to be ungrateful for all the incredible people who have done various services for us. It’s just meant as a statement of fact—to say it & get it out of my system. This is hard, and I wonder sometimes how long it will take to recover. From the missed therapy and dr appointments, the structure & social elements of in-person school, the missed extended family memories, the extreme lack of stillness and constant tax on my personal reserves. Last night Dan and I took an imaginary vacation in our minds, and I couldn’t help thinking—sounds amazing, but is reality ever, ever, ever going to offer us such respite, again?
I ran into a friend in the Target parking lot the other day (!!!) and it was like a Christmas gift from the universe. One that fills your heart and at the same time leaves you with longing—“Remember when this was normal and readily available?”
Remember?

It’s weird to be alone, but never alone. To live with so many restrictions and still yearn for peace and a break/chance to catch my breath. To be engaged in a marathon that has been going for years, now, and to wonder if maybe this is just the way it is and I should figure it out how to live this way.
Honestly—honestly—I am just getting it out. Taking a deep sigh to acknowledge the hard before leaning into God, refocusing, and trying again, another day. 💛 #am_covidchronicles

Limitless Future

I’m a woman, but I’m a privileged one. She is not. She will spend her whole life fighting for respect, opportunity, and even kindness. Today the world seems a little friendlier to the disadvantaged. There are some traditionally “conservative” issues I will ALWAYS fight for, but I will do it with respect, decency, and a strong reminder in my life that differences are ok. Differences contribute. Differences can make us better.
Crying big-time mom tears, today. Baby girl, this one is for you and your limitless future. ❤️

Good Idea

It’s a wonky day. 🤪 What are you doing to take care of yourself & those you love? I’m going to read some poetry, make myself a smoothie, try to homeschool, and tickle/play with Lydia until her laugh is the only thing filling my brain 😂

Important Day

Make it count. 🇺🇸
Remember to love. ❤️

Yoda

I was cracking up over the old Jedi leaning on his stick 😆 Happy Halloween! 🎃

Peter Pan

We have been Peter Pan & Lost Boys obsessed this year (fitting for Covid times, no?) and when this one asked to be Peter for Halloween I was delighted because I have loved this phase.
Hold up, J M Barrie, Neverland was invented by moms who didn’t want their boys to grow up 😭✨

We need each other

As October & Down Syndrome awareness month wraps up, I just want to say thank you. Thank you for seeing & loving my daughter. Thank you for trying to make the world a better place for her. When she was born, I was terrified that she wouldn’t matter to anyone but me. Not only has she mightily proven me wrong about her capabilities, but so have you. Lydia lives with a beautifully pure heart, and she both attracts & evokes that pure love in others, as well. In a world that can often seem really dark, I find myself frequently grateful for good & loving people. We need her, and she needs you. 💛💙
#downsyndromeawareness #theluckyfew #misslydiefaith

Arches National Park Vacation!

Unreal and yet all real. ICYMI, we were able to take our first vacation as a family of 5! 🙏🏻 It was muuuuuuch needed and we loved every cellphone-service-free second! We went to Arches National Park which is gorgeous & the perfect size 🤗 (And in spite of all my [somewhat justified] fears, no one fell off any rocks/cliffs!) I’ll never get over the exotic beauty that is the American Southwest.

#am_nationalparks #mangosdoarches

Rewrite Their Futures

See the value.
Recognize the problems with stereotypes and fear-based medical practices.
Give them a world where they can succeed rather than be shoved aside into our box of preconceived limitations.
Embrace diversity and their unique, wonderful contributions.
Love & support their parents & teachers.
Raising every child has challenges. It is always worth it.

See the value. Rewrite their futures.

#downsyndromeawareness #theluckyfew

Article: https://righttolife.org.uk/news/ “MPs fear prenatal testing will result in discriminatory abortions against babies with Down’s syndrome” 10/23/2020

"Special Place in My Heart"

Last quote is from my sweet neighbor. I have loved hearing and sharing these experiences 💛.

“I worked with children with DS for 4 years before moving. They hold the most special place in my heart! One boy in particular is my very best friend. I visit him every time I visit Logan. We’ve participated in races together, and talk regularly! I have to restrain myself from going to hug on your sweet girl everytime I see her!”
-Madison

Set Free

This picture is not from our trip, but it gets the point across: getting out in nature is so freeing. We had no cell service. We had no laptops. We had nothing to focus on but each other and God’s creations. For the first time in a looooooooong time, we got out, I caught my breath, and I felt not only peace but joy. I know it’s not always possible to run away. I really know. Which is maybe what made this experience so exquisite. Just feeling grateful & 1000x more human. And maybe considering becoming a nomad for life.
Colorado, we know you are hurting with the fires. Our hearts break for you. Let’s take care of this beautiful earth.

Radiant

I’ve got sunshine on a cloudy day ☀️
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“There is no greater disability in society than the inability to see a person as more."
-Robert M. Hensel
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October is Down syndrome awareness month! A group of photographers have gotten together to spread love to the Down syndrome community. We encourage everyone to open your hearts and see the person, not the disability. Let us take this month to begin celebrating our differences and appreciate how they enrich our world!
#photogsforDS

#am_nationalparks #mangosdoarches

Lesson

I’m over here worried about politics and education and the world burning down when suddenly you remind me to breathe & write more poems on leaves. How is it that I have never thought of this, myself? 🍁