For several years I fought our daughter’s lifelong diagnosis in denial. I would not let her immobility stop us; I would not let it stop me from fulfilling my dreams, her potential, our capacity. I think it’s good to live life with a fight in you. To not just succumb and to dig the heels in a little bit and see what you can overcome. As nearly 10 years have passed, however, fighting looks different and at some point you have to acknowledge, “For whatever reason, this is our reality, and this is the life we’ve been handed.”
The question now is not, “How do we make this go away?”, but “How do we make this life awesome, right where we’re at?” Finding the answer can be a challenge when the issues your child deals with are complex, unpredictable and/or physically demanding.
I sat to write this entry, recovering from a wretched virus, broken sleep the night before because a GIANT BEETLE was crawling on me in my bed (You can’t make this up), and while attempting to organize my thoughts, Jane started throwing up.
Our daughter Jane’s anti-seizure meds and neurological abnormalities cause her to have a build up of secretions. Aka – a LOT of drool and runny noses. This season has been especially difficult as we’ve seen an increase in gagging and vomiting.
I recently took her and my other two daughter’s on a road-trip to Southern California to visit family and it was taxing to say the least. Jane’s tube site became infected, and her vomitting was next level. Changing her diaper in her wheelchair at a rest stop in the middle of California in 90 degree weather is something that I will never, ever forget.
Ironic that the post I sat to write was about maintaining our wonder as special needs parents, whilst dealing with a medically complex child. How do you even begin to “dream” and “feel” when you are just surviving and questioning, and maintaining? It’s not always easy, but it’s not as complicated as you think.
One of the most difficult parts of my daughter’s diagnosis was the feeling that my adventures and freedom would come to an end. There is an Anne Shirley that lives in the recesses of my soul with all her optimism and fantastical views of the world. A part that is untouched by the logistical complexities of disabilities.
“I don’t know what lies around the bend, but I’m going to believe that the best does. It has a fascination of its own, that bend.“
And to that part of my soul, and to yours, I say, in the words of Marilla Cuthbert,
“Don’t give up all your romance Anne, a little of it is a good thing – not too much of course-but keep a little of it.”
Life can be daunting, exhausting, hopeless. But I firmly believe we can still dream, capture the magic, and live with wonder. Here are some very simple ways that you can foster the wanderlust, magic and wonder for yourself and your family:
- Music
Music is the soundtrack of your life. We have playlists for most things in life: For the girls when they go to school, for date night, for dinner time prep, for rainy nights at home, for summer drives, for girl time, for dance parties, for working out. Music adds magic and it speaks deeply to the subconscious part of us. It’s hard to be sad when Nat King Cole is singing at dinner. And sometimes, music can provoke the tears you need to shed.
2. Lighting
Overhead lighting and fluorescents will surely empty your will to live and burn your brain. Reminisce on all your favorite movies that take place in homes and I will tell you what those homes have in common. The dreamy children’s tent scene in The Holiday? Lighting. The warm home of Mr. & Mrs. McCallister in Home Alone? Lighting. Meg Ryan’s apartment in every movie she’s ever been in? Lighting. We love an opportunity for warm lamps, disco balls, twinkle lights, pink night lights. We even got Jane a wheelchair that partly glows in the dark! Lighting and shadows adds that sparkle, not just to photos, but to life!. As the light shifts with the day, so does the mood. Such an easy way to make yourself feel fabulous.
3. Bring nature inside
Nature brings me immense joy, but accessing nature with a wheelchair-bound child is not always easy; bringing nature inside is! A plant in every room is a great rule of thumb, so no matter where you’re sitting in your home you can divert your eyes and easily see green. Maybe you don’t have a green thumb, which is fine. Faux plants, although not my favorite, can create the same vibrancy. I encourage you to try your hand at something low maintenance. Our discount stores always have cheap house plants for affordable prices. Water it when it looks sad, and don’t worry about it if it doesn’t. If that sounds like too much work, make buying cheap flowers part of your budget, or take some scissors on your neighborhood walk and ask permission (or don’t), and fill vases. It all works!
4. Micro Adventures
I often set my expectations really high, I’m sure I’m the only one. There’s a scene in New Girl where Zooey Deschanel gets a sweater from her best friend CeCe. The sweater says “Made in China”, and Zooey’s character Jess says, “No way! You’re taking me to China!?” That’s me. If you caught me on a bad day I could cry thinking about how monthly roadtrips are not doable for our family. We live in an incredible part of California and day trips to hike in Yosemite, dip our toes in a water fall, stop by our friend’s mountain coffee shop, touch the snow, swim in the ocean, all sound like my absolute perfect day. These days occur once every year or so for our family and they require a lot of work. So we have adopted micro adventures. Which, if we’re being honest are hard enough on their own! Here are a few:
- Pack up bikes and hit up a local bike bath that is also wheelchair accessible. Make a local coffee shop your end point so you can feel like you (and the kids) got something extra special that day.
- Take a nightly family walk after dinner. Family walks are our thing. We do this at least 3x a week when the weather allows. It gives us everything we need: Exercise, time together, access to nature, and helps the kids get their energy out before the bedtime routine.
- Solo walks. Not everything has to be with the family so if you have time to get a solo walk in in the morning or evening I support this 100%. If you’ve followed along our journey at all you know that I always be walkin’! Don’t underestimate the soul filling power of a 20min walk in the cool of the morning or the glow of the evening.
- Explore parks that are out of town. We love visiting an accessible park in a town 20 min from us. Even though we have one where we live it is such a nice way to get out of our routine and explore with the kids.
5. Read (Or, just to make this super easy for you, watch a movie 😉
There are so many unhealthy ways to escape reality, and then God gave us books <3.
I add “movies” to this because I believe they are a different category than mindless television watching or Instagram scrolling (although there are some pretty fantastic TV shows on these days).
I actually went for a long time without watching movies in the last few years. Call it short attention span, exhaustion, or what have you, I could just not sit through a whole movie. Recently I told Rich, “I need to watch movies again.” Movies, like books, take you on a little journey. They have soundtracks that touch you, and they bring you to an emotional place of inspiration. Maybe you think I’m joking or being dramatic, I’m not! It is so hard to get out of survival mode as a special needs parent, so if watching Keira Knightley subtly and eloquently spurn the advances of Mr. Darcy makes you feel something, FEEL IT!!!
Books need no explanation, but here I go. I didn’t grow up an avid reader, but I married one. And for the past 12 years I have been brought to tears by Bilbo Baggins’ reluctant willingness to take a daring and often lonely adventure that he did not ask for. I have giggled my way through the works of Jane Austen with her elegant sarcasm, I have been stirred by the motivation and overcoming spirit of professional athletes, and, as mentioned, have fallen in love with the stubborn optimism of Anne Shirley. Reading gets us out of what feels like an all-encompassing reality and into the shared human experience of loss, drama, pain and joy. And now there’s audiobooks at the ready so we really have no excuses do we? Have I sold you yet? 😉
This list is by no means exhaustive (if there were only five ways to discover magic in our lives that would be sad indeed). I didn’t mention iced matcha, stirring banana bread with your children, food with friends, clean sheets, the view from the top of a hike, finding a dress that fits perfectly at a thrift store, the combo of peanut butter and chocolate, and watching your child swim under water for the first time. It’s all there, we just have to be present to it. That’s why the Bible tells us, in so many contexts, to “lift up our eyes”.
He knew life would throw us some unexpected things, so He encourages us to take a higher view of our reality. I pray you can do just that.
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