Advocacy and Therapy and Faith

Our life might not look like yours in all the ways, but it’s a good life, and she matters.
*** Had an IEP this week. If you want a hard experience, navigate an IEP with assessments and evaluations of your child’s struggles. Then make it extra and set it in a pandemic where your child cannot receive the therapies she needs in a safe environment. Watch her fall behind. Guilt yourself in all the ways. Throw your hands up in the air over the carelessness of society and the futility of fighting disease at a global level. It broke me. *** The saving grace of it all… is her. Her light that runs through our home, hangs on my legs, and babbles cheerful dialogue all day long and into the night. It’s the educated & dedicated therapists and teachers willing to bend over backwards and think outside the box so she still gets help, in spite of our broken education/political systems. It’s the friends who message me and say they see our fight & it has changed them & they commit to showing up for the disadvantaged & disabled & hurting. It’s in the quiet moments with God after an ugly-cry prayer when He assures “I’m still here for you. Let me move the mountains.” *** It’s hard right now. It’s so hard. But there is no doubt in my mind that this is a worthy fight & I will keep showing up. 💛

DAILY HAPPINESS

I started another 365 in case you were wondering. What is life if you’re not looking for the light, daily? 🧘🏼‍♀️

Quest

Take me where the light falls softly
Where the sky spreads wide enough to hold my pinched and aching heart, and let it breathe.

Home

Whether we’re moving from state to state or hospital room to hospital room, he is my safe place. 🏠

Jump

I’m always waffling between “Let them be kids,” and “Is this why we end up in the ER so much?” 🤔 #am_twoboys

Exploring

New day, new boundaries.

Letting it Go

Today was heartbreakingly hard. I cried a lot of frustrated tears over how unfair this pandemic has been, especially for high-risk families. I cried out of exhaustion and outrage and deep hurt. Then my husband wrapped me up in an “I see you” hug, and we went light hunting. And I tried to listen as God whispered, once again, that He is there in the ugliest, most unfair depths of our loneliness. And He brings the light. Not people. Him. So my boys threw rocks (and ice and logs) at the lake, and I practiced casting all my burdens on the most and only truly reliable Source of Light I know.

Flare

They’re a whole vibe ✌🏻😄

Snowflakes

Last year I bought window decals for every possible holiday/season between January & spring, because CHEER 😄 I think I need the Christmas tree to come down but equally need something happy to replace it. More twinkle lights & snowflake decorations?? Anybody else feel this need? COVID life has brought out the “WE WILL KEEP THE DARKNESS AT BAY!” in me 😆

Hope Shining Out

One of our neighbors is in the hospital with Covid-19. She’s been there for several weeks. The other day another neighbor asked Dan if we would be willing to leave our Christmas lights up with everyone until she comes home. The cul-de-sac was cheery before, but now there’s an extra shine to it. Keeping the light on for you. 👼🏼✨

A Sledding Disaster

A day that will live in infamy… In case you missed my stories this week, on Tuesday we had a sledding outing that turned into an ER trip. A snowboarder ran into my middle son on the hill & my son sustained a 4.5 inch gash to his head. It was horrific and traumatizing and has scarred us all. But he’s ok. Miraculously his skull and brain are ok. 🙏🏻 It could have been so much worse. Even editing the happy pictures from this experience was hard—I think it’s safe to say none of us want to go sledding again anytime soon. Also we will never go sledding without helmets, again. Oh, life. He’s got 14 staples that will stay in there for 2 weeks while we take it easy. Thanks for all the prayers and messages, they have truly meant a lot. 💗 I threw that last picture of Lydie in there because, while she’s crying because she’s cold, it sums up the day pretty well.

Christmas Card

Merry Christmas, Happy New Year, Happy Anniversary, Happy End Q4, etc. 😄 💛💛💛

Patient Participation

Merry Christmas, Friends! I’m interrupting my IG break to share something that’s important to me. Holidays/traditions have proved to be some of the most difficult times for me as a special needs parent. These occasions of parties & celebrations & get togethers are so important but can often be exhausting for both children & adults. Disrupted routines, new food, new rules/expectations, & lots of noise… It’s wonderful, but a lot! The experience is even more amplified for individuals with special needs. Lydia is especially sensitive to sound & changes to routine (new people & places). With each holiday or special event, I get practice setting the RIGHT expectations, making each event not about what we do, but how to make it the most meaningful & positive for those present. I have learned to go into each experience knowing that we might (probably) have to adjust, & that if things look different than I was expecting, it’s ok. Some experiences go well, & others have left me broken-hearted & in tears. It is an ever-evolving journey.
Tonight we actually went to a holiday dinner with family! 🙏🏻 Because of 🦠, Lydia has very little experience in these settings. I came as prepared as I could, & we adjusted as we went. She spent time wearing noise-canceling headphones. We made sure she had a “safe place” she could go to be away from the crowd, & didn’t pressure her to interact with anyone if she wasn’t ready. As the day wore on, I watched her tolerance for the situation evolve from overwhelmed & avoidant, to curious, to venturing farther into the activities with fewer supports in place. I felt like cheering every time I watched her grow more comfortable doing something new—and I felt like cheering each time one of my family members met & respected her where she was.

By the end of the night, she was walking among everyone, & while I had expected to make it 2 hrs, we stayed 5. It doesn’t always go like this & it won’t always go like this. Today was a win; other days have ended in meltdowns. While some day I hope to see my little lady running amok with the pack of crazy cousins, today I savored simple moments, even the break we both took (& needed) lying on the floor. She reminds me always that love is the point. Whatever your holiday looks like, be there smiles or tears, I hope you know I love you. You are doing a good job. If today went wrong, we can try again tomorrow. That’s the reason that Baby was born on Christmas, anyway. 🙏🏻💛
*** #misslydiefaith #downsyndrome #theluckyfew

Stillness

We’ve had more snow here this December than has been typical the last few years and (aside from driving in it) I love it. I’m going to take a break from posting over the holidays and try to embrace stillness—which is not my strong point 😅 but so needed. Merry Christmas to you all! 💛

Arches Sunset

Currently dealing with moisture of another sort ❄️ but I haven’t taken pictures of that beautiful white stuff, yet. Which is ok, because as far as I’m concerned, red rocks are always in style 🏜

#am_nationalparks #mangosdoarches

A couple more of our family pictures this year that I love. 🥰 By the amazing @melaniericephotography