I feel like the colors this fall are extra special. Maybe it’s the pandemic etc. teaching me to slow down, recognize beauty, and appreciate things more. Either way, we can’t get enough. 😍
Please let me make something beautiful /
A thing that reminds us there's good in the world / A thing that reminds us there's still something out there worth fighting for
'Cause it feels like the world has gone crazy
Spinning faster and cheaper than ever before / And it feels like there's nobody giving a damn that it's getting worse
Let it be something wonderful
Let it be something beautiful
Please let me make something beautiful
A thing that reminds us there's good in the world
—Ben Rector
Reading in my own tree house was the stuff my childhood dreams were made of. Our yard is simple, but I love seeing this dream come true for them. They’ve gone from never playing in the backyard to living there, and it makes my heart 💗
*** It’s been awhile since I’ve felt like light-hunting with my camera… but I’m trying. Kids don’t keep.
With the right supports in place she will surprise you. With her wit, her tenacity, just how much she can understand, do, & contribute. This is my girl, & she is ABLE!
Lydia is going to preschool. This decision was not made lightly! I consulted w/ 3 drs of different specialties. I met w/ teachers, therapists, & principals to discuss our options. The choice came down to either 11 hours of in-class instruction per wk (regular preschool), or 1 hr & 15 min total of 1-on-1 instruction by appt per week. Educationally, there was a clear answer.
L spent a year doing “online” therapies. You can guess how effective remote learning is for a toddler. 🤦🏼♀️ When she turned 3, she was invited to a preschool where I attended w/ her. The virus was under control at that point & our local schools required masks, so we felt safe going. L absolutely THRIVED in that environment! Her therapists worked w/ her hands-on, & she had valuable social experiences. I was looking forward to more preschool for her this fall! Then the delta variant hit & our state banned K-12 mask mandates. How horrible to feel you are being forced to pick between your child’s development or their health!! I don’t dare risk her edu any longer, but I am more worried & heartbroken than I can say. I want this to be positive for her. Each day I pray that God will keep my baby safe, change hearts in the community, & provide us w/ protection & deliverance from this thing.
The question isn’t if SHE is able, but if WE are able to make the world safe and positive for everyone.
Yeah… 🙃
We need to listen to the silence. It’s talking, and we’re missing it. It’s easy to hear the noise, the loudest, the most passionate. The messages and anger that have been shouted for so long now, garnered all the headlines, snatched up all the attention. We assume that the number of decibels is equivalent to the amount of pain, the depth of determination, the validity of the cause, and yes, even the number of ever-to-be-considered votes. But assumptions are not always correct, and the silence has things to say, too.
Sometimes the most valid causes, the most passionate proponents, the most long-suffering champions… run out of things to say. Sometimes their silence says it all.
In the Bible there’s a story of a woman who suffered “an issue of blood” for twelve years. We don’t know much about her condition, her lengthy struggle, or the suffering she must have endured. We do know that over the course of 12 years, she saw many doctors, spent all her money, and had only grown worse. I imagine she was exhausted in every sense. I imagine it was all she could do to endure.
One day, when Christ is walking through a crowded street, she seeks healing, comes behind Him, and touches His robes. She does nothing else to grab His attention—perhaps she couldn’t do anything else to get His attention. It was crowded, and she was unhealthy, penniless, a woman, and according to culture, unclean. Maybe after 12 years of suffering and living in a culture where individuals were trained to neither see nor regard her, she had nothing left to say. Maybe literally all she could do was reach out her hand in faith.
But to Christ it didn’t matter. Christ’s ability to listen and feel transcends crowded streets, positions of power, and even voiceless pleas. He stopped everything, and looked around for the one in need. He heard her. And He healed her.
I am a special needs mom. For various reasons, I have lived the last three and a half years in various stages of quarantine in order to protect the health of my daughter. First it was to preserve her for two heart surgeries and to help her through healing afterwards. Then, it was two winters of expensive medications and RSV precautions. And then, of course, Covid-19. At this point in my years-long crusade of keeping my daughter healthy, happy, and alive, I have run, not out of needs, but out of things to say. Like the marathon runner who carefully calculates her speed, the swing of her arms, the clothes that she wears and whether after 21 miles they will chafe…I know that every movement counts. Every interaction, every post, every email regarding policy, every hour spent providing therapy, every homeschool lesson, every time getting up in the middle of the night to check oxygen saturation levels, every trip to the doctor… IT ALL COUNTS. And I, like so many other special needs and high-risk families, only have so much energy to give; I have to be extremely conscientious of where that energy goes. It’s not because I don’t believe in something strongly. It’s because I am literally exhausted from keeping someone alive.
What I’m saying is, there’s a lot of silence that we’re not listening to. We’re distracted by the ones with the loudest voices, and we’re missing all the ones that frankly have nothing left to give. We expect everyone to show up and fight for what they believe in, impress us with their rhetoric, persuade us with their petitions or speeches or anger or whatever…but we’re not acknowledging the equal efforts being put forth on the other side. Battles that, in some cases, have been waged for a long, long time.
What parent among us, what human for that matter, is not exhausted at this point in the pandemic? We have all been pushed to our limits in every possible way. The exhaustion in me acknowledges the exhaustion in you in some kind of sad, sardonic, pandemic “namaste.”
Humanity, like water, follows the path of least resistance. We cave to the loud ones because we fear their energy and public criticism. We celebrate when someone else writes a post that we agree with, because then we don’t have to write it, ourselves. We let things happen because we don’t have the energy it would take to win the whole world over to our point of view, ourselves. And we’re all exhausted. I get it. I GET IT.
But I just want to say, silence speaks, and we desperately need to be listening to it, NOW. Silence has numbers and passion and validity and lives that count. The silent ones are working and hurting and trying the best they can, doing all they can, surviving as long as they can. If you have any energy left at all, I plead with you to use it to lift those who do not. To stand up for things that will make their lives easier. To look past the raging, angry, crowded street, to the desperate souls in need right in front of you. They need more hands, more voices, more reinforcements, more love, NOW.
And to those who have reached out to our family… The phone calls, the messages, the check-ins, the simple “thinking of you” gifts… more than anything the EMPATHY… It has all kept me going, kept me fighting, kept me believing more than I can ever say. You are my angels. I thank you and I love you.
I’m so tired. And when I’m tired, I never feel like it’s fair to post pictures of Lydia, who is the embodiment of all things optimistic, loving, and full of light. The moods just don’t jive, you know? She truly is a source of centering & spiritual renew for me with her angel-like energy. A constant reminder to seek purity, be present, love without boundaries and/or qualifications, and to live hopefully and persistently even when facing great challenges. Today, though, my tired self honors Lydia by sharing her. Because maybe you need some of this sunshine, too. 🌻 #misslydiefaith
I’m not always good at saying “yes” and dropping all my plans for a spontaneous adventure, but yesterday I did. We got out of the house and went to an outdoor park with family where the kids played in a small stream for hours. Distancing myself from news and worries was so healthy for me. I know we can’t always put the big issues on hold—we all have a civic responsibility to show up for big conversations and do our part—but when I have done my part the best I can, sometimes it’s everything I need to step back and live in the realm of things I can control. I really loved this day. I really need more of these days.
#am_100daysofsummer
I wish I had gotten a little more of Dan in this shot, but I still love this image & their connection. She does this a lot—places her hands on our vocal chords and carefully studies our mouths when we speak, then imitates us. She understands so much and has so much to say—she babbles to me all day long. True conversations with inflection and emotion and expression. I love, love, love it. She knows songs and is learning patterns such as counting and the abc’s. She talks to her dolls, to herself in the mirror, to her family. She really talks to herself in the camera 😆Holding her back is the low muscle tone that makes those complex oral movements so difficult to master. Yet every day she works on it, and every day she improves. Someday all of her words will be intelligible and she’ll talk my ears off 😂 And I will love every second of it. #misslydiefaith
I love these people and would do anything for them. 💛
Recently I ran into an acquaintance while out w/ my family. She had never met Lydia before, & immediately commented on how cute she is, her sweetness & purity. I agreed & answered, “Yes, having her is a constant gift.” The woman then paused before stating matter-of-factly, as if to check my expectations, “It will be harder when she’s older, though.”
Stunned, I simply acknowledged “yes,” then listened to her detail the struggles of an adult w/ DS that she had observed in a singular setting.
These are moments that probably don’t seem significant to anyone else, but that unexpectedly knock me off my feet. Kindness that whiplashes into judgement. Such moments esp. cause me to confront the trauma of L’s birth diagnosis & all the deep fears I initially harbored regarding her future & ours. The work I had to do initially to cast off stereotypes, prejudice, & statistics, & to lean into love.
The woman walked away but left me w/ my mind racing. I faced, as I have a 1000x before, all the “what if’s.” “What if L can never feel comfortable or behave ‘normally’ in public?” “What if her health declines?” “What if she never achieves typical milestones & lives a limited, sad, insignificant life?” “What if it all becomes too much for both of us?” What if, what if, what if.
Your mother-heart breaks at such thoughts. But God knows a mother’s heart. I believe that motherhood opens a special channel between an imperfect woman & the divine—I have felt it with each of my children & even more w/ L. Revelation that whispers & warns & comforts & strengthens in ways that always, always prove a perspective more expansive & accurate than my own. In this moment of heart-sinking fear, God sent me a scripture:
“Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord the God is with thee withersoever thou goest” (Joshua 1:9 KJV).
It came is such a way that I knew it was from heaven, not from me, & immediately I breathed easier. I let the what if’s go. Because when God is w/ me, “whom [or what] should I fear?” And He was telling me it would be ok. He was speaking peace.
Later that day I snuggled my sweet daughter before she took a nap. She leaned into me in a way that is uniquely hers, w/ a special kind of peace & purity & love. Our connection is unique & eternal. Resting there I realized all that woman could never know—the sheer sacred beauty of THIS—the incredible joy that comes from having a special needs child.
Play set Instagram verses reality: “Big reveal coming soon!” or “Hallelujah we’ve almost got our lives & yard back!” 😂 What. A. Project. Once we get the slide/monkey bars/trimmings attached I will officially retire from DIY—which isn’t fair because Dan did most of the heavy lifting on this one (which is why I had to document him 💪🏻🙏🏻). Oh my word though it makes me so happy to see the kids enjoying this beautiful thing in the backyard. Childhood dream fulfilled ✔️ #am_100daysofsummer
Regrettably, teeter totter is not an Olympic sport.
I’m really inspired by all the mental health talk sparked by Simone Biles. It feels fitting for the world to take that head on after we all have faced Covid for the last 18 months. 💛
I wasn’t quite expecting the response that I received on my last post… it seems to have resonated with a lot of people. One of the largest responses ever for this little account. Growing up I was not one to openly share a lot of my emotions. I had some painful, hard experiences, and never felt like there was a safe or open space for me to share them. So I tucked those down deep, dealt with it, and (poorly) masked myself most of the time. Somewhere along the line, in college, I decided I didn’t want to/couldn’t deny myself to accommodate others, anymore. I never wanted to be disrespectful or a jerk about it; just rectify the fact that some of my most painful memories exist around moments when I didn’t step up for myself and say, “Hey, that hurts me.”
Part of the pain of covid is being physically alone and feeling alone in other ways, as well. Many of you stepped up yesterday to offer love and compassion and to say “I see you,” or even “me, too.” That meant a lot to me and made me feel more hope, more courage to keep going, and a whole lot less alone. I hope you felt that way, too. And for those who showed humility & compassion by just respectfully listening, that was also a gift and I noticed. It was a good reminder that even in highly emotional experiences, when the pain and fear and other emotions are very real & valid, listening to each other and doing our best to do the right thing & to do our part to meet in the middle is the most successful path to peace. That’s the real work.
I don’t know how to do it, anymore. I don’t. I woke up this morning and stared at the light coming through my window. And then I called the boys in and told them that this is the last day they can play with friends and to enjoy it—the numbers are too high, they’re too young to be vaccinated, and the risk is too great. We are going to have to quarantine. Again.
It was one thing when the whole world was in the same boat—baffled by the onslaught of a new and unknown disease. We were all alert and hurting, then. There was community and although we were isolated, we spread hope and we were in it together. The world is different, now. The effects of COVID-19, the deaths, the hospitalizations, the economic turmoil—it’s all preventable. And people are choosing not to participate.
I don’t know how to do it, anymore. I don’t know how to fight the onslaught of misinformation. I don’t know how to provide any more of the hundreds of credible sources spanning countries & political parties & fields of study & religion that all say: get vaccinated. I don’t know how to look at the neighbors, family members, church congregation brothers and sisters who preach protecting the weak and helping those in need out of one side of their mouth, and out of the other scream my freedoms, my rights, my vacations. Who cannot be bothered to, if not get vaccinated, at least wear a mask for someone else. I respect the right to make personal decisions, I do, but your “personal freedoms” have become my oppressions. It has gone too far. It is irresponsible. It’s not fate or chance keeping me here anymore—it’s people. I have lived in quarantine for three years, now. A solid year of that for covid, and looking to add more. I’m angry and overwhelmed and hurting, and once again, largely disregarded and unseen. And I’m telling you, I just don’t know what to do, anymore. This is my plea: do your part.
Casual passing on logs. 👋🏻 #am_100daysofsummer
Summer is half over. What?!! Trying to figure out how to prioritize this last month. I feel a little bit robbed of summer this year because the weather has been 👎🏻 and my kids haven’t lived outside like they normally do. 😢 Even so, we’ve made some good memories. Swimming in mountain lakes, popsicles on the regular to beat the heat, reading Harry Potter together, lots of fighting 🤣 #real.
Things I still want to do: more hikes, more mountains, hit up a snow shack, break out their new rollerblades, watch a fam movie, go on a picnic, run away with Dan. But the REAL question is, will we finish this dang playset before school starts?!! 🤪💪🏻 #paintshortage #ohcomeon #playsetorbust
Home scenes. 💛
