Tag: Advocates

I don’t have doors on my kitchen cabinets.

Let me back up. This post is about a really important word, but it will make more sense if we start with cabinets.

We bought my grandmother’s home 8 years ago and have slowly been making it our own. One of the first things that I wanted to do was transform the kitchen. But there was no extra money, so DIY it was!

We took down the half wall dividing the kitchen and dining room, put in a countertop, and laid that click-together laminate floor that was the manager’s special at the local hardware store. I took down 40 years’ worth of wallpaper layers and patched and painted the walls. The facelift was quick, inexpensive, and notable. But my grandmother’s original 1970’s cabinets stared more boldly at me, surrounded by fresh coats of paint and shiny new floors. Cabinets were definitely not in the budget, so I turned to the next best thing: cabinet paint.

Cabinet painting is quite the process. It involves taking off and labeling all the doors and storing them with their hardware. There’s so much cleaning. There’s sanding, filling holes and cracks, cleaning again (did I mention how much cleaning there was?), and priming. I finally was able to watch the transformation as my paintbrush covered the old wood with strokes of farmhouse gray. Ah…everything was going well in my world. All I had left to do was paint the doors and reinstall them.

But I put my project aside because I started to get sick. What I thought was just a stomachache that lasted for weeks turned out to be our sweet Lael Joy taking up residence in my belly. I suppose I could have finished painting, but I wanted to be careful. I wanted to give her the very best chance of being the very healthiest. So, I put aside my project. I rested. I ate so carefully. I exercised and stayed calm.

And that May we welcomed her into the world with a surprise extra chromosome, a hole in her heart, and a blood disorder that we quickly learned was a form of leukemia.

It was then that I learned of the word precarity. At it’s core, precarity means the state of being uncertain or a state of persistent insecurity. This word was most popular 100 years ago, but as is the case, was replaced by words like hazardous, perilous, or risky. But those substitutes don’t quite do the word justice. There’s just no other word like precarity. Precarity doesn’t truly mean any of these things at all.

When Lael entered my world, I became a student of life’s precarity. I never would have considered myself someone with rose colored glasses, but any rosy tint to my lens was washed away that day with no hope of returning. We always say there are things in life we cannot control, but we never truly consider that those “things” could happen to us. Not really. I found myself constantly living in a state of being uncertain. And before you think that’s a bad thing, I would counter that it’s actually a very healthy thing. It’s “the” thing that keeps us from getting too comfortable, from settling, from growing stagnant.

You cannot truly experience life without precarity. There is an unexpected delicacy to every aspect of this existence. One minute we are planning the perfect kitchen, the next we are welcoming an unexpected baby, and the next we have signed up for a lifetime of caregiving to a child born with vastly different abilities than our others. Ok, that’s my story, but you have your own. You don’t have to be a special needs parent to be able to point to a moment when you had to abandon your own cabinet doors because life handed you something unexpected. And some of us have never gone back to those doors because of how delicate that something turned out to be.

But life is beautiful because it is delicate. Only in the balance of experiencing the good and braving the brokenness, do we find true beauty and purpose.

If I could go back to the woman who was painting the kitchen cabinets, I would take her face in my hands and tell her to celebrate all the good, ordinary, mundane moments…like, really celebrate them. Make a cake for no reason. Stay up late and play a game with the kids. Sleep in and start the day later than expected. Go for a walk. Go to the park. Call people. Love radically. Because there are times and seasons when you cannot do these things. And that’s o.k. too. I would also tell her to not rush those seasons. Settle into those. Not for the purpose of staying there, but for the purpose of cultivating courage, embracing challenges, and learning something new about this fragile life that we’re gifted.

We walk this tightrope every day, teetering between joy and pain, happiness and sorrow, hope and despair. We are all vulnerable to the unpredictable twists and turns of life, and the beauty and brokenness that comes with it.

We cannot fully appreciate the beauty without experiencing the brokenness of life.

Precarity gifts us with this contrast to embrace. The contrast of the immeasurable joy of holding a brand-new baby while grieving the life you had hoped and dreamed for her. The contrast of watching your child succeed at something they love to do while hustling every day to make that something happen. The contrast of being surrounded by your loved ones while having seasons of letting them go. We all know precarity. But few of us embrace it.

My sweet girl that taught me about precarity will turn five in just a short while. And my kitchen cabinets have remained in the corner, primed but not painted. My cabinets hold my dishes without doors to cover up them up. And it drives me crazy. I want order and perfection, but they serve as a reminder that it’s o.k. to not always be able to follow through with our best intentions. It’s o.k. that priorities change. It’s o.k. that our lives can look completely different from one another. It’s o.k. that we do all the right things, and we don’t get the intended result. It’s frustrating. It’s irritating. It’s mind-numbing at times. But it’s o.k. It will be o.k. And then it won’t be. And then it will be. Because life is full of precarity.

Friends, I hope you’re in a season of beauty. I hope you can take out the good dishes tonight, even if you’re just serving pizza on them. I hope you can sleep in freshly washed sheets and take a hot shower. I hope you drink your coffee while it’s still hot and you find yourself getting out your mixing bowl and favorite dessert recipe just because. But if you’re not, I hope you know you’re in an equally important season where the tears are food for your soul and the prayers through clenched fists and sometimes screamed in the car are heard and working something beautiful in your story. I hope you know that you can sit in your pain as long as you need to in order to find the strength and resolve to elevate and ascend again. I hope you know you’re not in the valley because of lack of faith or some wrongdoing. We all spend time there.

But the flowers that grow in the valley are breathtaking. The streams are cool. And there’s shade to rest in.

So whether you have fancy dishes or cool streams, know you’re right where you’re supposed to be. And it’s perfectly fine if you never have doors on your cabinets again because you might have more important things to tend to first.

When I was in high school, I had this amazing, silly friend who made life so much fun. We would constantly be doing off the wall things to make each other laugh, often in public. One day we were cruising home from school in her little red car and someone shouted an obscenity out their window. We gasped and quickly decided that we were not about to let the negative people of the world win. So we started countering his negativity with positivity…we decided to spread love and friendship in a world who could so desperately use it. We rolled down our windows and when we saw an passer by, we shouted, “Friendship!”

My friend and I spent the spring of our senior year shouting positivity out the window, catching most everyone by surprise and bringing smiles to a lot of faces. I told my kids about this practice and the window shouting has continued on to the next generation. Everyday, I hear them shouting “friendship!” out the car windows on the way to their sports practices and I still can’t help but smile.

The point of this website is to shout friendship out the window.

This world is a juxtaposition of negativity and fake perfection. We exist in a world of stark contradictions, where we are simultaneously fascinated by the darker aspects of humanity and striving for an unattainable perfection, capturing and sharing the moments we want to remember, while ignoring the beauty found in unexpected struggles.

But the truth is, life’s most beautiful moments are often those that catch us off guard and test our strength and resilience, much like the thrill of speeding in a little red car with the windows down, the wind in our hair and the joyful sounds of Lauryn Hill’s Doo Wop mixing with our own voices shouting positivity into a world filled with chaos and negativity.

Pain is a shared experience that we all must endure at some point, but it need not define us. My hope is that my writing connects with each reader on a personal level, offering a sense of empathy and support. Conversely, joy is something that we can choose to cultivate in our lives. I hope to succeed at conveying a sense of authentic happiness that transcends the polished, filtered facade that we so often see and crave from social media. As I write from the messy middle of my own journey, I pledge to offer candid and vulnerable reflections, and to seek out the beauty and goodness that can be found even in the darkest moments.

When I woke up one morning with the words ‘Big, Loud, Upside Down’ ringing in my head, I knew it was a sign that my love of writing was meant to play a central role in my life once again. Writing has always been a powerful tool for me, helping me to process and heal from the challenges and traumas of life. With these words, I felt a sense of excitement and purpose, knowing that I was meant to approach life with boldness and a willingness to break convention. I knew it was time to roll down my windows again and speak into the void of cynicism, spreading raw hope and unfiltered joy.

Big. Our family of 9 is what some might call “big” these days. With 7 kids, we have a treasure trove of hilarious stories, life hacks, and reflections that have come out of raising our lively tribe. Just imagine a giant, white, 14-passenger van rolling down the street with several little voices yelling, “Friendship!” Plus we have an adorable golden doodle and 6 chickens, so there’s never a shortage of activity in our house!

Loud. In our home, the decibels can get pretty high! But more than sound, our lives are filled with a vibrant energy that comes from a full schedule of activities and interests we pursue. While it would be easier to simplify our commitments, we believe in allowing our kids continue to grow and develop into who God has made them to be. As we juggle it all – sometimes even successfully – our loud life depends on the love and support of our community. So these musings will include insights into how we embrace life and live it to the fullest.

Upside Down. In May of 2018, we welcomed our sixth child into the world – a beautiful little girl who surprised us with an extra 21st chromosome. Overnight, we became Down syndrome advocates and warrior parents. Our sweet girl has turned our world upside down, and we wouldn’t have it any other way. These reflections will explore the many ways in which her arrival has reshaped our lives for the better.

Here’s what this blog is not:

It’s not exclusively for parents of children with special needs. Though I certainly hope that fellow warrior parents will find us, connect, and become part of our circle, I also want to share our life lessons, reflections, and both the good and not-so-pretty aspects of our journey with those who are not raising a child with differences. There’s much we can all learn from one another, yet this connection is often lost or misunderstood, with special needs parents feeling isolated and typical parents unsure of how to break in.

It’s not an unrealistic, endless parade of encouragement. You won’t find cliches, canned responses, or overused expressions. I don’t ever want to slap a band-aid quote on someone’s pain or undermine their joy with an equally sugary sweet response.

It’s also not a dark, sad lament. While there are moments of hard, moments of sad, and stories of overcoming that I want to share, my goal is to share them from a place of learning, reflection, and vulnerability.

I am so excited. I have so much to share, so many things planned, and so much hope that together we can continue to spread positivity to those around us.

Thanks for stopping by. I hope to see you here again. I’d love for you to hop in the little, red car and speed along with me as I shout to the world from my big, loud, and upside Down perspective.