This post was originally written in 2012, but has been updated and re-posted here:
A dear friend told me after Hudsyn was born that we needed to focus on Love and Love only. That holding space for her was extremely important…accept her for who she is, no matter how her physical body or mind decided to show up in this life. That’s a hard thing to do when it’s your child. And especially when your child is not “typical” or “normal.” That you now have to live with new labels like “special needs,” “disabilities” or “developmentally delayed.”
My daily gratitudes aren’t just about enjoying the simple things in life. They have literally changed my life.
March 2011 (five months after Hudsyn arrived), I was in a dark place. The last of our fellow Bradley class students had published their birth story. It was beautiful. I cried, because I remembered that we still hadn’t written ours. I had also written in my journal later that month…
“Today is March 22 and we just finished another pediatrician visit for Hudsyn. She’s a little over five months old, and this is the first time he used words like “delayed,” “handicapped,” “abnormal,” and “a low amount of brain mass to work with.” I felt deflated all over again. I love her so much and just want her to be okay.”
Those weeks were really tough. But one day, I found an old journal where I’d started some daily gratitudes. Some of the things I wrote down (nearly 13 years ago) seemed so trivial such as, “I like having clean socks fresh out of the dryer,” or “mint flavored chewing gum.” However, in reading them again, I instantly felt a little better. So I decided that I’d begin the habit again…and this time, I’d share it on Facebook to stay accountable to the new commitment. It was also something that our family therapist had suggested I start doing.
Writing at least three daily gratitudes drove a lot of my depression and negativity about Hudsyn’s situation away. Belive me, some days were more difficult than others. Some days, all I could muster were: 1) I got out of bed. 2) Work ended & 3) Dinner was good. Other days, they were more elaborate. It didn’t happen overnight, but slowly the joy started flowing into our lives again. The lists got longer and longer. Soon, I found it hard to only list three and even Dan started joining in.
Hudsyn enjoyed it, too. We believe she mirrors our energy and daily attitudes through her body’s responses. Many days, I’d come home and while she was getting her feed, I’d read the gratitudes I’d written and then also what others had commented in response. She would smile as she heard prayers and well wishes from her fans (whom we now call Hopesters). Because of all that positivity, she started to also show signs of improvement. Her physical therapy sessions became more productive. She began smiling more and more. One time, while in Boulder for a JSJ session that first year, she giggled loudly for the first time! We can’t describe how incredibly happy we were to hear that sound.
I’m also a very down-to-earth person and I don’t believe any one therapy, drug or treatment will cure Hudsyn’s brain injury. Science and medicine have only taken us so far now that she’s eight. Hudsyn cannot see. She’s never crawled, sat up, or even attempted to walk despite the thousands of dollars in therapy and alternative medicines we’ve tried. We have a child that is likely going to need full time care for the rest of her life no matter what we do. But we accept her for who she is.
No matter how many supporters and people that we know love us, this is a very lonely road. It’s the road that many parents never have to worry about. But we press on. We wake up smiling most days, because it’s a new day. We gush over our friends’ children when sometimes (really deep down) we experience tremendous grief, knowing our little girl will never be like theirs. Hudsyn may not get the chance to have a typical sleepover with her friends, but it doesn’t mean our life has ended. Dan has always wanted a daughter to walk down the aisle, but instead, we have a child who will forever be the purest example of Love that we have ever known. She smiles and giggles. She endures physical pain that most of us would buckle under. She introduces us to people we would’ve never met had it not been for her brain injury (like you)! This blog, Dan’s YouTube channel, our overall Purpose, wouldn’t exist without us having Hudsyn.
This road is certainly not the one we had planned on traveling. We used to feel sorry for parents of special needs’ kids…probably like you feel when you read some of our posts. But I’m here today to write that most of us don’t want that sympathy. What we really want (and need) is your unconditional acceptance, love and neverending kindness. Instead of staring at Hudsyn in the grocery store, come over and say hello…and comment on how beautiful she is…I promise she’ll respond by giving you the biggest grin you’ve ever seen. And, if you compliment the bow in her hair, or her sparkly outfit…she might even vocalize her appreciation (this kid is a GIRLY girl). Don’t ask, “What’s wrong with her?” Ask, “How old is she?” or “What is her name?” as you smile and comment on her beautiful eyes.
My mom sent me this via e-mail once:
“I asked God to make my handicapped child whole. God said, No. Her spirit is whole, her body is only temporary.“
God is All and God is One. And God has a plan for us and for Miss H. I’m reminded as I pray each night, that no matter how she develops, she’s showing up in this life exactly how God intended her to show up. I have to think back to that day in the NICU when we weren’t sure if she was going to wake up and I whispered in her ear, “You have to make the choice, sweet pea…if you want to stay in this body, please wake up. And if you don’t, well mommy and daddy will be sad, but that will be ok, too. Because you’ll be in good hands in heaven. We’ll be ok if you have to go. But, please choose because we can’t make this decision for you.”
Two days later, she woke up.
She’d made her decision. Therefore, this is HER life and that life is God’s life. I constantly have to remember when I get frustrated with her physical inabilities to stop and breathe. I mentally have to back up and let her hold her own space so she can create this existence with God. I was given that same privilege by my parents and now it’s her turn.
This means that we have to let go of any preconceived notions of what our daughter is going to look like, be like or act like as she grows up…just like you would have to do for a typical child (we have one of those, too). She is perfect. And we won’t love her any less than the day I found out we were pregnant with her.
If daily gratitudes can get us to this place…think of what they can do for you and your life. Just try it…write down three things you’re grateful for each morning before you start your day. Make it part of your routine.
I promise, it’ll be worth your time.
