Souls and Stories
There is a two year old boy undergoing hip surgery today. Let that sink in – block out the distractions – and go back and read this sentence. And this is only one out of many children undergoing procedures today.
I don’t know this little boy or his family personally, but the algorithm of instagram has introduced me to them. His name is Jackson. He loves Waffle House and he gets very excited about ice cream. He has blown the minds of his doctors with his growth and progress, and continues to grow and be such a light for my heart, and I am sure for many around the world. His diagnosis is Nemaline Myopathy, Arthrogryposis, and hip dysplasia. I will link their YouTube at the bottom of this post- and from there you can find their instagram and facebook page.
There are a few reasons I share this today:
- Social Media.
- The Experience and Exposure of a Children’s Hospital and Clinic.
- Your story. Their story. My story.
First, the subject of social media. I’m not crazy about it, but it can have some amazing ripple effects if done with good intentions and motives. For example, Jackson’s family would like to educate the world about his conditions, his progress, and what daily life looks like for him. Instagram has clearly picked up that I love children, and even have caught on to my love for my heart for special needs/childhood diagnosis stories. I love following these families. I know some personally. And some I do not. All are prayed for every time they pop up on my feed, because if you have been in this community- a simple, “Jesus, _________” can do mighty things!
Second, my own experience and exposure to a children’s hospital and clinic. So back in the 1980s and 1990s, Duke Children’s Clinic, all specialties were seen basically in the same clinic. They saw different specialties on different days, but that meant exposure to many diagnosis outside of what I was being seen for. It was tiny now that I think back on the size of the clinic compared to the space now, but I worked. Any visit could open my eyes to something new. Cystic Fibrosis, brain injuries, birth trauma of all sorts, Cerebral Palsy, Cancer, Heart Diagnosis, Transplants… From a young age I really knew the brevity of life and the importance of this moment. I don’t remember consciously knowing this, but I don’t remember not simply feeling this peace in the moment. I can’t really describe, so I hope somehow this sort of does.
Another fact that was very apparent to me was that some kids have something that has a cure, some have something that is managed with a “maintenance plan” (medicine, life modifications, appointments), and some have something that the research is still in the labs and waiting for approval. Some of us would stay stable-ish on maintenance plans for life, some wouldn’t have answers for many years, some just needed to be monitored- simply because they had done all that they could. The reality was right in front of you- some get better, some stay stable, and some only have a chance at living for the moment-“getting better” is not in their vocabulary because they are living their best life no matter what anyone else says. But as long as we were all in the clinic, we all had something in common, and that was we were kids with something in our bodies not working quite right. As I grew and had several hospital stays myself, I learned that some kids are in the hospital for months, with little to no breaks. Some of my doctors in the very early years attempted to play with the thought of me growing out of everything I had going on. That didn’t last through too many doctors. I have always been a blunt little girl/woman, so they must have caught onto that and started really seeing that I and my parents were not buying their “she’ll grow out of this” poo-poo.
A common comment I hear in relation to childhood diagnosis, trauma, etc is “they are resilient.” And to that I say, yes and no. Yes, a child with no underlying health conditions who gets a cold is resilient, their body has all the components in their immune system to bounce back to doing what they were doing before the cold. A child with underlying health conditions, their immune system takes a hit- whether it be respiratory, muscular, gastrointestinal, cardiac, neurological, etc – it will take longer to bounce back, and most likely will not fully be able to recover to the “before” state. So in this way, children don’t have the choice of being resilient, it’s just how our bodies work- it’s what I call inside wear and tear. No-one ever really sees what’s happening, but you, the patient, and those close to you know the difference. And this continues through adulthood. The sentiment “get better soon,” it’s great and all, but sometimes the word “resilient” seems like a heavy word to place on children. The expectation for them to bounce back, to rally, to not have anything to process, but just move on to the next thing- this worries me in an already very busy world.
My story is only my story. Your story is your story. We all have our own individual stories that make up who we are in this moment. Which means we all have our own individual realities that make up our daily lives. My current reality is that I am eagerly waiting for a text from the pharmacy saying they have refilled one of my prescriptions that I need soon. Also, I am waiting for one of my doctors to approve me for the Covid vaccine for this year. I was in the high risk pool for the first vaccines in 2020, don’t know why that would change now… well, I do, but…. I am currently extremely grateful for technology that allows my parents and I to stream my niece and nephew’s games at home and on our TV this year. It has been a hard surrender to not be able to physically be at their games due to health and at our doctors guidance. So I will be gearing up to watch my niece here in a little bit play field hockey, let’s go Cavs! My life reality has been accepting, sometimes really hard to swallow, that not everybody is going to understand my daily reality, the ups and downs of what I know as living with multiple chronic diagnosis- this is all I know, so I try to see from other perspectives but it’s hard to envision something you haven’t even experienced a tiny bit of. And the unconventional path of becoming a mommy starting at age 25 and then, finally at age 30, I become a Mommy! I had six wonderful months with her in my arms, and then the ache and pain of letting her run ahead of me into the arms of Jesus. Well, I’ll be honest this has done a job on my mind, body, soul, heart more than any chronic illness. In hard and good ways. Jesus is more real and alive to me now more than ever! I feel a peaceful loneliness pretty consistently, and that’s a very good thing. I live a slower life than 7 years ago for sure. Once you have had to pack a car seat and diaper bag and be ready at any moment for 5 years, and then place your child in that car seat and get bottles and all ready for the diaper bag, and then, it’s all over, the checklist going out the door never feels complete again, someone is always missing, there’s an emptiness.
So, my story and reality doesn’t match anyone else’s. It may have similarities, but it’s never okay to compare realities, or try to one up another’s story. Our stories are to be shared to bring awareness, perspective, teach, comfort, heal ourselves and possibly others… My Mom and I have been talking recently about few years that all four of my grandparents were in need of help and care. I was working in child care in multiple places- churches- Bible Studies, MOPS, homes, small groups. And then towards the end of caring for my mom’s parents, I was keeping a little boy at our house and I had started Indeed! Why we started talking about this time is because we realized we both were doing what needed to be done, running on survival juice, and we missed the little things that the other one was experiencing. The big things, like family disagreements and such, everybody was in on, but the little hurts or the little funny moments- it’s like we haven’t been able to process until now. It’s been soul cleansing and healing. We didn’t even know we needed it.
I will touch on the news of this past week: The whole event and tragedy with Charlie Kirk was happening while I was writing my post last week, unbeknownst to me, because I set my phone aside and that’s where my news feeds come. To me it’s doesn’t matter if I agree or disagree with Kirk’s political talk- children have lost their dad, BOTTOM LINE, period.
What I will say is this, the angry words and actions coming from all sides are absolutely horrendous and very much uncalled for. I encourage everyone to not turn off the news or ignore it, but to listen closely, with your heart, with your brain, if something seems off- fact check it. We live in a technology age, but our grandparents did a way better job of fact checking at the public library than we are doing today! Don’t just agree with a party because you are registered that way or flippantly repeat their words, think for yourself, let your feathers get ruffled, and get the right information! I believe in you! Tell your story while you are at it!
Life Book of the Week: Our 50 States: A Family Adventure Across America, by Lynne Cheney
Jackson’s Journey:
https://www.youtube.com/@jacksonsnmjourney
Check the facts:
