It’s 11:14 am and I’m sitting in the hallway of a very fancy theatre while my daughter watches a play with her class. I drove her here but she didn’t want me to sit with her, because “mom, that’s embarrassing.” Typically I’d have a lot to say about her attitude, but I’m exhausted and therefore making the executive decision to just let her snarkiness slide.
Plus the play looked stupid.
So here I sit, ushers walking by as they appear to wonder why I’m perched on the edge of a sofa that is probably more for looking at than sitting on, but alas, I’ve never been the most socially appropriate person, so why start now?
My alarm went off yesterday at 4:00 am and in the dark I bundled my children into the car and drove us across town to Frisbee Boy’s Mom’s house, where she then drove the three of us into the city so that The Boy Child could be seen by a team of specialists at a major university hospital.
It was a long day and I’m feeling it today, yet it feels like it was a million years ago that I sat in the small room where the doctor’s paraded in and out, asking a million questions, and pouring over his medical file — but it wasn’t. In fact it was really only a few hours ago that I left that room and now suddenly I’m here. Back to the daily grind, trying to manage everything in my always chaotic life, and feeling thankful that today’s chaos is nothing more than the normalcy of raising children.
When I found out several years ago that I had a rare genetic condition and that I had passed it down to my daughter, I was… I don’t know what I was. I was a lot of things. I was sad, scared, and overwhelmed. I felt guilty, I felt alone, and yet above all of that I felt determined. Sitting there and listening to the doctors tell me about all the damage that had already been done to my heart, lungs, bones, and joints, it was terrifying— especially since my daughter was going through the exact same things.
The prognosis that they gave me was grim and did not at all encompass any of the future that I had dreamt we would have. In fact, according to the doctors, the future might not even include me… or her.
I had a million questions but the doctors had zero answers because the disorder is so rare that no one is really researching it. There’s no funding for disorders that only affect a handful of people, because a few people are much less important than a large population of people, and while I can understand the economics of that, it doesn’t make it any easier to hear. It doesn’t feel good to know that saving my life is less important than saving the life of someone else just because there is only one of me and five of them.
You know I thrive on being unique, but that’s really pushing my limits a bit.
I was simply not OK with that. Absolutely none of that fit into the plans that I had, and yet there I was being told that my plans were gone and no one could give me any direction on what my new plans might look like.
So I did what any sane person would do and I lost my freaking mind.
I turned into Dr. Google, “professional doctor with a degree from Internet land.” I spent hours upon hours researching exactly what the specific gene that is mutated in me is supposed to do when it’s working correctly. From the moment I put my daughter to bed until the minute I was surprised to see the sun starting to peek over the horizon, I would find myself scouring the pages of online molecular biology text books. I was creating online accounts left and right to get into any medical journal website that I could manage to access, and I was becoming near cross eyed from the hours upon weeks that I were spent dissecting the details of even remotely related research studies and case files.
I would then walk into doctors office's with so much research that upon entering the exam room and spying the stacks of paperwork that I had with me (before I could even open my mouth), many doctors would instantly decide that they didn’t like me. Apparently there’s nothing more offensive to a doctor than a girl with an Internet degree trying to tell them— with their 8 years of medical school education— that she thinks she knows what she is talking about.
But I didn’t care and it didn’t stop me. Many doors were slammed in my face and even more hit me in the ass on my way out of the office, but eventually I found a doctor who was willing to not only listen to me, but to also do some research on his own, and propose a treatment plan.
In a two part theory, radical diet changes, supplements up to the ceiling, a very specific exercise program, and a laundry list of lifestyle changes were enacted in an effort to do the job that my broken gene was supposed to do (and not doing), and also to support my body's systems in a way that would alleviate the stress they were encountering from not having an entire set of working parts.
I got better and so did my daughter. My once very sick heart healed itself to the point where my cardiologist no longer see’s the irregular rhythms, multiple skipped beats, and chronic tachycardia that once concerned him so much. My lung function, which was down so significantly that doctors were telling me that my lungs were beginning to fail, improved. Repeat bone density scans showed that the osteopenia that was once pitting my bones had slowed in its progression, and the constant muscle and ligament tears seemed to ease up.
In fact, I just did my yearly genetics "check-up" last week and passed with flying colors! How cool is it that I can just take all the equipment home, wear it for 24 hours, and the data is streamed right to my doctor?
Hospital? Ain't nobody got time fo' dat.
Hospital? Ain't nobody got time fo' dat.
In essence, we were able to hault many of the very scary manifestations of our disorder, and aside from joint instability that makes both of us so flexible that my daughter needs to wear ankle braces and I dislocate more joints than an orthopedic surgeon, we seem to be doing fine. So fine in fact, that when I found out I was pregnant with my son and went running and crying to my geneticist (afraid that I was going to be bringing another “broken” child into the world), the geneticist told me that I had no reason to be worried; that as long as I stuck with the plan, the baby would be just as healthy as any child with a normal genetic make-up. Still sensing that I was worried, he calmed my fears by telling me that as a genetic counselor, he has to tell a lot of couples that they shouldn’t have children, and that I was not one of them. “Stick with the plan” he said, “and you’ll be just fine.”
Except that The Boy Child did not stick with the plan.
Oh no, that kid has definitely got a mind of his own and in his mind, my plan sucks. And the genetic counselor was right in a sense because “stick with the plan and you’ll be fine” also meant “if you don’t stick with the plan, you won’t be fine.”
As most of you have seen in many of my recent blog posts, The Boy Child has not been fine. No, his little rendezvous with his friend’s daycare lunches, where he was (unbeknownst to any adults) sneaking copious amounts of food that were not on his medically necessitated diet, caused him to be very, very, NOT FINE.
Kidney issues, abnormal electrical brain activity, hospitalizations, surgeries, and intensive therapy, suddenly became a very real thing in our house and none of that was part of my plan.
None. Of. It.
But you know what? Sometimes life doesn’t go according to plan. As someone once told me, “We plan and God laughs,” and while you might not all believe in God, that doesn’t change the underlying truth. We can’t plan everything, we just can’t.
Sometimes on our path in life, we hit a bump in the road that is so big that it temporarily derails us from where we thought we were heading. It’s like you’re driving home from work on a Friday night, or home from the grocery store with a minivan full of kids, and you are just zipping along, excited to get home and start the weekend, and then BOOM! You hit a pothole hard enough to blow out your tire.
Obviously you can’t drive without a tire, so you are forced to pull over and deal with the situation. Maybe you have a spare tire in your trunk and you are able to change the flat on your own, but you’ll still be at least an hour or two late in getting home. Or maybe you don’t have a spare and you’ll have to wait two hours for a tow truck that will cost you $200 to get towed to a mechanics shop, and then you’ll spend another hour and $175 getting a new tire put on the car.
None of that was part of your plan, none of it was fun, and all of it was 100% frustrating and annoying.
But even though it really threw off your plans for the evening, at no point would you have just been like “screw it. I’m so annoyed that I have a flat tire that I’m just going to live in my car on the side of the road forever because I don’t want to deal with it. Or maybe I will at least get towed to the shop, but then I’ll just buy the house across the street from the shop because I’m so frustrated that I have a flat tire and it’s keeping me from getting home at the speed and ease I was planning on, that I’m just never going home again.”
That sounds absolutely insane doesn’t it? Why on earth would you let a temporary frustration forever stop you from going where you wanted to go or doing what you want to do? Why would you abandon your life just because you didn’t want to deal with a pothole that temporarily sat you on your ass?
Yet we do it all the time.
We are a world made up of people who view temporary frustrations as life altering roadblocks. When you have a hard time passing a college class and decide to completely change your major to one that doesn’t need that class, or worse yet, drop out of school completely after a rough semester. When you never start that diet because it’s too much effort to stick with the plan. When you don’t want to go through the struggle of withdrawal, so you never quit your addiction. When you don’t want to work those extra hours in order to get the promotion you’ve been dreaming of. When you never get around to seeing that therapist, because you don’t want to deal with the trauma of your past.
Every day, in many different ways, we alter the path of our lives in an effort to avoid the hard work that comes from temporary struggles. We allow the course of our lives to be dictated by the ease of our present, but in turn we trade in our dreams for the ease of today.
The past 9 months of my life have heavily revolved around getting The Boy Child “back on the plan” medically. If you remember from the post “My Child Does Not Have Autism,” I was given two options to treat him, the better option for healing also being significantly more involved than the easier option.
I chose the harder option with the best chance of a full recovery.
There were many hospital stays, countless doctor appointments, and literally several hundred hours spent in therapy. None of it was part of the original plan, but the plans had to change if the dream for his future was going to remain the same.
He deserves a future, so we adapted to a very hectic schedule, a lot of intense work, and we didn’t let a flat tire stop us. And truth be told, there was zero part of me that wanted to deal with the challenges that we were going through in order to get him well, but when the only other option was to accept the flat tire, move into our car on the side of the road, and possibly lose the future that my son deserves, I chose to strap him to my back and start walking.
9 months later his kidneys are completely healed and after ten weeks of the intensive “brain therapy” program, his EEG no longer shows any abnormal brain waves (YAY!!!!) He has been released from all the specialists that were treating the array of issues that were going on, and I can honestly say that my son is back.
He has one final surgery Friday and assuming all goes well, I’ll be bringing home a completely healthy 4 year old for the first time in nearly a year.
I’m bringing him back to the life that we were fighting for and back to the dreams that I always hoped he would get to dream — and accomplish.
I’m bringing him back to everything that he left before it was all nearly stolen from him and home to the family who is thrilled that he is doing so well.
I promised him that wherever he was, that I was going to find him. That until he could fight for himself, that I would carry him and fight for him, and somewhere along the way he got stronger and I was able to set him down. And you guys, I’m so proud of him!! He worked SO hard and he has gone through so much, and he never gave up. He took my hand and the two of us finished this journey together.
We’re almost home.
Whatever you are going through right now, whatever is blocking the easy road and forcing you to take the unpaved detour, take it. Because you can either choose to forever sit in your unwillingness to work a little harder, or you can accept the challenge and keep moving.
It’s not always the easy way that gets you home.
Trust me, I know.
“Dreams are worth fighting for” isn’t just some stupid little slogan that people throw around when they want to feel inspirational. It’s a saying that was born from the millions of people who understand that dreams aren’t just worth fighting for, but that sometimes they are futures that required a little fighting to get there.
Every single day you make choices that impact your future and oftentimes we don’t realize that we are selling our health, careers, relationships, futures, and dreams for the ease of the moment. With every choice that you make, a decision is made for your future.
On Friday The Boy Child will be having one final surgery and then he will be coming home to the future that is waiting for him.
I made the choice, I accepted the challenge, I changed the plans, I took the unpaved path, and I led my son to a future.
This minute, it counts. Every decision, it counts.
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