Tag Archive for: Cerebral Palsy Foundation

World Cerebral Palsy Day, 2024

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I find myself in a strange, yet lovely and new spot as I age. I am far more accepting of myself, the roles that I am called to, the ways these change like the tide and the ways they are beautifully and achingly the same. My role as “mom,” is ever-changing as my kids also age. With my oldest in college this year, my 17 year old son on the very brink of adulthood and my 13 year old daughter changing before my eyes, I would be remiss if I didn’t take an honest look at how I am changing as well…

They don’t need me the same ways they always have; they need me in different ways now. (By the way, THIS change is also wrought with both/and, the grief of changing family dynamics and the exhilarating moments of growth.)

Yes, I MUST acknowledge both/and as our family shifts a bit…otherwise, I forfeit the beauty and right-ness of God’s plans for all of our lives, rather than becoming bitter, fearful and sad at all the independence and therefore, change, that plays out in every moment of every day in our family.

There are other changes too…

I have been working for two full years with EMDR International (EMDRIA) to become a certified EMDR clinician, which will reach completion this week. Just as quickly, I will begin the process of becoming an approved consultant with this ground-breaking organization. As I look at the next chapter of this career I love dearly, I am focused on bringing continued perspective and growth to brave clients as well as assisting other therapists who also care deeply about complex trauma and the healing work of EMDR.

I am a part The Fred Rogers Educator’s Neighborhood for the next year as well. I am very honored to have been accepted by Fred Rogers Institute for this year long study. Along with a group of others who have been impacted by Mr. Rogers, we are together learning  how to utilize Mr. Rogers’ wealth of knowledge, study and perspective in many areas of child, family and  professional development. Though we have met only twice, I am so thankful to rub shoulders with others in the world who genuinely believe, like Mr. Rogers, that kindness really does change us all. And heavens, don’t we all need more kindness in the world?

As there always is in life, there are difficult adjustments too: this week, two significant deaths in our world. Though I specialize in grief and loss, it is still very personal when it happens to you or in your very personal corner of the world. Losses bring us to the opportunity (I say this so gently,) to look back, to grieve again or in new ways and to use losses to inform how we want to LIVE going forward.

There are new and enduring friendships, growth in so many areas as we have recently come home, again to the church that played such an important part of my life from age 14 – 24. God has stretched, challenged and blessed our family in profound ways in the process of leaving our former church, grief like I have never known in that process and the faithfulness of finding a new church community. It is both the biggest blessing to be cared for, to be vulnerable and to love and care for others in this new and not new church home.

Finally, there is the both/and as World Cerebral Palsy Day was observed on October 6, 2024.

It is a heart-wrenching thing, this part of my identity that I so wish wasn’t AND after many years of grappling with what it means for and about me, to find pride, hope and love for myself and fellow CP warriors. It is so holy to see, validate and celebrate the bad-ass-ness (I made that up, can you tell?) that comes with living with and caring for those with this disability. This week, a friend finally got to bring her son (who has CP) home from at least a month’s stay in the hospital for complications with seizures and other physical issues. I am stunned by her son’s (and her own) positive attitude after so much. For as much shame as I have carried and overcome in my lifetime around my own diagnosis with CP, it is gift to be able to smile and be proud on World CP Day.

Here’s the thing…God is not, will not and has never been surprised at the ways he created us, the things we do need to go manage here, apart from heaven and how we are limited in our humanity in the midst of these things. He IS with us, even if it feels like he absolutely IS NOT. Deuteronomy 31:8 says, ” The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”

Ohhhh, that’s such a hard one, isn’t it? We are so human in that feeling that says, “why does God put me through this? He COULD change _________________…..”

I hear it multiple times a day and my own reaction is understanding the question AND compassion. What I hear in that phrase, I immediately  think, “oh, he is NOT, putting you through it; he is holding you, as he himself hurts that this is happening too.”

I do not understand all the mystery that surrounds the what’s, how’s and whys that surround God and his sovereignty. I have been there too, crying in rage, frustration and desperation. I have also come to a place where there is more peace in releasing the whys to God’s care and fully trusting him anyway…

I suppose that is how, after many years, many feelings, many experiences and many prayers, I can joyfully put on my green World CP day t-shirt, raise a “cheers,” to my fellow bad-asses, and hold space for that rather than the negative.

I am curious, how are you experiencing change in this season? Maybe we can hold each up, give more care to ourselves and others and float on these crazy waves of change rather than fight them…

God, who is in it all, through it all and who holds it all together: Thank you for understanding our limits, frustration and even anger when things aren’t changing for the good. Thank you being near, always. May we seek your understanding, your heart and greater trust in your love and goodness. May we see ourselves and each other with your vision, compassion and desire for whole-ness. May we know love and joy as only you can give.

xoxo

Both/And

Deuteronomy 31:8

Startle reflex, PSA’s and awareness.

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“Jeez, Stacy, you are uptight!”

“Nervous much?”

Laughter ensued from my friends. I was thankful that the movie theater we sat in was dark and they could not see my quickly heated, tomato red cheeks. Even though I knew in THEIR minds, this was “just teasing,” I HATED how my body was “tense and jumpy” when there was a loud bang, scream, crash or any other surprise reason that my body would startle. I HATED IT…the lack of control I felt, how my body seemed so much more reactive than ANYONE else I knew and how in high school, this became such a point of teasing, so much more than I had experienced in middle and elementary school.

I began to feel immense shame and embarrassment about a part of myself that I did not know at all was a normal part of having cerebral palsy. I was hard on myself for not managing the “jumping,” reactivity, hard on myself when friends began to startle me on purpose because I couldn’t just “have fun with it.” It hurt. Beyond that, however, I just didn’t understand my own body mechanics that were so out of my control.

I don’t think I knew how to even talk about that, the embarrassment at people’s comments, how I would hope that movies did not have jump scares, or the tension I felt when music indicated something was coming. I don’t think I asked my parents how to help because I just wanted it to all go away and assumed it was just a “me thing.”

I have said many times over the course of my life, that I just did not SEE others like me. Cerebral palsy affects more than 17,000,000 people world wide, is the most common lifelong disability and no two people with cerebral palsy are alike. (From the Cerebral Palsy Foundation). For these and many other reasons, it is exceedingly difficult to process and understand the unique challenges that each of us with CP face, individually and collectively. Another contributing factor to that complexity is the reality that as kids with cerebral palsy age, services and support are less and it is even harder find connection to others who are similar. My physiatrist (Dr. Rush, Grand River Rehab) told me this week that he normally refers adults with CP out of state for orthopedic work, such as knee or hip replacement because of the innovations being done in places other than here. I don’t say that to throw shade at Michigan, but rather, it is a statement on the lack of resources and connections here, in my home state as an adult.

I have been allowed an incredible journey of awareness, understanding and self acceptance. Therapy, a support system like none other and first and foremost, a path that I can see was nothing less than God’s presence and provision have all provided some chosen, some mandated processing and accepting both my own worth and limitations. As I have aged and social media has emerged and evolved, I have experienced many people who bravely share themselves, challenges and their victories through various accounts and stories. Especially in the last few years, I sense understanding and comradery as my feeds include more and more brave CP warriors.

There is Colbie, whose friends and family regularly celebrates her strength and achievements, defying expectations. There is sweet Peter, who consistently defies the odds, smiles and communicates though he is non-verbal. There is Stephanie, an authentic woman, fitness professional, and advocate. She regularly discusses her needs, her frustrations and even depression related to CP, as well as her tremendous, spirit. Rachel is both fearless in sharing the realities of being an adult with cerebral palsy, unabashedly displaying the challenges and the normalcy she experiences, hourly. Joseph regularly shares his own fitness and life journey and again, the nuances of what it means to engage the world as a healthy person with CP. It was in watching a TiKToK of his, that I again had another a-ha moment: He described, “walking across the room carrying his cup of coffee with CP for the first time without spilling it. I have battled my own “sloppiness,” for years, thinking again, that it was only me, that could not carry my tea without spilling it on my shirt, the floor or both. It was bittersweet to watch Joseph because of the struggle AND the validation.

There are many others…this tribe of warriors, including their families. I would also include my own. Having lived with cerebral palsy for my half century of years, I am so proud. I am proud of us, those who did not ask for this set of circumstances and who show grit, “normalcy” and inclusion. I am amazed by rockstar support systems, and continually improving adaption options. I am thankful that though the world, globally, has a long way to go in regards to valuing ALL life and experience, we’ve also all come SO FAR.

Did you know that an athlete who was born with CP WON (yes, you read that right…) WON American Ninja Warrior this season? (Sorry for anyone that watches…I am just so excited that I added this spoiler in!) https://youtu.be/zb6rgRFI3Jg?si=MSWSsRmjnlE7AdrP

Justin Gallegos became the first ever professional athlete with cerebral palsy to sign with Nike in 2018. https://youtu.be/x4KC0nUmY4Y?si=bkLSvUEAhyfPju2K We have come so very far.

Yesterday, I was scrolling a bit while drinking my tea. The Cerebral Palsy Foundation regularly posts fantastic content that is informative for both those with and those without CP. But as I scrolled, my eyes fell on a graphic they’d posted just a few hours earlier that was another big moment for me. (See below).

It stunned me for a minute because though I have learned over time about my own startle reflex, that same one I took a lot of grief for in middle, high school and even currently sometimes, this was new to me. I know how to deflect it or give a quick comeback to whomever is teasing. But still, STILL…after all this time that I’ve lived with CP, I hadn’t thought about others’ startle reflex. Granted, I still don’t see “ALOT of OTHERS” with CP around me, but still…it hadn’t occurred to me. We ALL startle easily and have not control over it.

I felt newly informed as I scrolled, but more importantly, I felt so cared for, along with the other warriors around me. I felt advocated for as this graphic was informing US on a global scale, “be aware of people around you with CP AND, know that the STARTLE is a normal thing.” Absolutely, the most wonderful blessing!

There are many times that my “normal with CP” requires much thought and planning to do seemingly “normal” things that the average person without CP may not have to think twice about. One of the pools in our conference does not have railings to get up to the bleachers. It is impossible for me to make that climb solo without the rail. Other times, the parking lot, even handicapped spots are miles away from an entrance and even further from our actual destination at events. It is tiring sometimes to explain my particular challenges or needs and sometimes easier just to suck it up and manage a situation at a significant cost to my comfort or needs because honestly, I could be explaining things all. day. long. This got me thinking about how others might experience this as well….

My friend Aria told me recently how “people don’t always know how someone with kidney disease has to monitor their water intake.” In her words, “I couldn’t even freely drink water when I was I was thirsty during dialysis. Too much could really hurt or even potentially kill me. I couldn’t take showers without much physical and emotional exhaustion because I had to be so careful with my catheter. If I got it wet and water got in my bloodstream, it could have also been dangerous for me.” It is in her brave sharing that I value my ability to drink water, not take mundane things for granted, like showering. (Yes, I did share this story with a few teens I know who don’t always value of, ahem…TAKING a shower.)

I wonder…is there anything you would share about a particular battle that most people wouldn’t be aware of? I am so grateful for awareness and though there are difficulties with how we treat each other in the world sometimes, there is also so much that is good, possible and beautiful.

The graphic felt so holy to me and here is why: everyone you or I encounter is fighting some kind of battle. That is not a cliché,’ but instead, an absolute truth. The more we can become aware of each of each other, the more we value how God has created us each individually, the gifts and the challenges this side of heaven. I think we all want to be seen, represented and seek connection with people who get us. Look at this video. If this doesn’t prove how meaningful it is to see and experience someone we can relate to in our own joys and challenges, I am not sure what does. https://fb.watch/nxg7wgDlNn/?mibextid=v7YzmG

Yesterday was World CP day, October 6. I celebrate each and every warrior who lives with CP. If I had the ability, I would make a DAY to honor each and every struggle around the world. I am in awe of each, and every one of us, challenging, battling and victorious related to whatever our struggles are. And on this and every other day, may awareness, celebration and love lead the way to acceptance, value and seeing one another as God himself does: made in HIS magnificent image.

Both/And

Psalm 139

xoxo