Sometimes life is complicated. Sometimes it’s anything but simple. Sometimes the answers are a long time coming, and it’s really hard work to get to them.
It’s harder still when you don’t even know the answers you’re searching for.
Sometimes it’s confusing, and frustrating, and seriously trying.
The farthest thing from simple.
I’ve been on a very complicated, confusing, frustrating, and trying journey for about 5 years now.
And for now, the journey has taken a new turn, a stop at simple, at least for a time.
Wow – I’m relieved – to put it mildly!
I feel like I could fall down and sleep for a year.
In fact, in quite uncharacteristic dramatic fashion, I lay down on the kitchen floor last night as my oldest son was trying to tell me something about his day.
He looked at me in exasperation because I wasn’t listening in the least.
All I could say was “Don’t you see? It’s all OK! At least for now – there’s nothing else to do about it! And it might be OK forever! It might just keep getting better and better!”
He mustered a “Ya, that actually is pretty cool” and just kept on walking past his crazy mother.
A similar conversation happened in the car after a doctor’s appointment with my youngest son yesterday afternoon.
He just couldn’t grasp the great news we’d just received – that no more appointments were necessary – no more physio, no more special orthotics, no more hospital tests, no more doctor’s offices.
I tried to make him understand – but I got the same look of exasperation and amusement all mixed together in one facial expression.
Both my boys think I’m nuts.
But really I’m just totally and completely relieved – shoulders drop and I put my head back on the chair – I look up and close my eyes and… Thank You Lord.
You’re probably wondering what in the heck I’m talking about…
Let me share a story with you…
Five long years ago my youngest son woke up screaming in the night. He was 6 at the time, and he had intense pain in his legs. After three hours we were able to settle him into sleep again.
A visit to the doctor suggested growing pains. I was less than impressed. I did the online research and found out growing pains can be very, very horrible for some kids (our oldest son just had a mild bout at around the same age as his younger brother), and learned some of the coping techniques like warm baths, massage, stretches, pain relief pills, etc.
Over the next few nights I tried them all. Plus a visit to the chiropractor.
The pain didn’t ease up for Elijah, and it became a nightly occurrence, and it lasted a very long time.
On one of my less-than-stellar-mother days I threatened to take away all the things he loved in life – TV, toys, video games – ya, great mommy moment. I was absolutely done, hubby was away for work, and my parents were staying the night to help me drive the boys back to their house for a few days while Josh was away. We were having car trouble as far as I can remember, because usually I’m just fine to drive the few hours to my parent’s house on my own!
So… at this point I was giving Elijah children’s pain relief every night, giving him a soothing warm bath, and doing stretches and massages on his legs. It was quite a process every night, but I knew there were families dealing with alot worse (the year before we had spent a week at the Children’s Hospital in Ottawa because Josiah had a very rare, very bad infection in his eye – ugh – let’s not get into that just now!) so I kept going.
After a couple of months the nightly pain seemed to taper off, and I was so glad to say the least. I chalked it up to a bad case of the growing pains.
Fast forward about 6 months and suddenly the pain returns, but only in one leg, and he feels it in his toes as well.
He’s a little older and can explain things a little better to me, and he tells me it feels like butterflies behind his knee.
No, not this again, and what’s with the adaptations?
So we try the old routine until we can get in to see the doctor.
We discover that a heating pad wrapped around his knee does the trick (and one around his toes too).
This seems to hold the discomfort at bay when he tries to lay down to sleep (thank God!).
The doctor recommends a round of blood tests, x-ray, and ultrasound.
We do them all, me wondering about all sorts of diseases and illnesses, trying to keep Elijah calm about it whenever it came up in conversation.
He’s my new hero because of all he goes through – usually smiling at the doctors and nurses, bringing out the best in them.
Then there’s me with white hairs growing in by the second and worry lines forming on my forehead 🙂
And after all the tests… nothing.
Maybe he’s playing it up for attention, Anna. Maybe it will pass shortly Anna. Maybe there’s really nothing there Anna. Time will tell Anna.
This is what I hear from the experts. I try not to be bitter. But I sort of am.
And I buy into it for a while – that there’s really nothing wrong. That he’s just trying to get attention. That all this effort and worry is for nothing.
I go back and forth for quite a while.
Because the nightly discomfort goes on for quite a while.
And it starts to creep into his days whenever he’s sitting for too long or resting for too long.
Activity makes it better, sometimes he even has to get up and walk around at night so he can fall asleep.
I hear him turn the heating pad back on if he wakes up in the night, and when he gets up in the morning and reads in bed.
This constant reminder that something is not right.
And no one knows what it is.
Not even the experts.
And some days I waver more than others in believing there really IS something wrong.
Then one day – he’s now about 8 years old – yes, this has been going on for a LONG time – Elijah tells me about how he wishes he could just fall asleep like a normal person.
Without a heating pad, without discomfort, without worry.
I look at him and think to myself – Why can’t he have that? Why can’t we figure out what’s wrong and solve this problem for him? It’s obviously not going away on its own. Time to go back to the doctors. This time we push it until there’s answers. Something IS wrong. Elijah doesn’t go around lying for no reason, or seeking attention without reason, and especially not for THIS long.
So we chat about it, about going back to the doctors, about more tests, about more questions, about maybe them not believing there’s anything wrong and how we would handle that – and he agrees to try again.
When the doctor finds out Elijah is STILL in nightly discomfort she agrees to more tests. She agrees it’s not just growing pains. She agrees he’s not making it up. A good start for sure.
We don’t have to redo all the tests, we just have to wait for an appointment with a pediatrician. This takes a few months, but we get in to our favourite pediatrician. He’s the one who sent Josiah to the Children’s Hospital for his eye (we believed he saved his life that day), and he’s the one who ordered a chest tube for Elijah just after he was born to get rid of the air pocket that was forming outside his lungs (he definitely saved his life that day). He’s basically our hero. And here he was again, helping our boys live to the fullest.
By the time we get in for the appointment, Elijah is 9 years old. It’s been three years of discomfort now – but at least the screaming discomfort was only the first few weeks of this whole ordeal. At least it’s manageable at this point. It’s not slowing Elijah down at all. Just not helping him sleep at night. Just worrisome, frustrating, tiresome, annoying, confusing.
The pediatrician calls for an MRI. Oh man, we’ve never had to deal with one of those before. And we’ll have to wait.
In the meantime, he notices one of Elijah’s legs is slightly shorter than the other (possibly due to a nasty fall on the growth plate when he was 2), and orders a lift insertion for his shoes and physiotherapy.
The lift we get very soon from our footcare specialist. The MRI we get within a couple of months. And the physiotherapy we get… on a waiting list. A LONG waiting list.
The MRI shows nothing wrong with the hip. And Elijah was so brave – such a little guy in that big, loud machine.
But the MRI shows something else might be wrong with his upper leg – there’s a mass that needs to be re-examined.
So he goes back into the MRI machine a few weeks later and… it’s all good – just a cyst – pediatrician says nothing to worry about.
Elijah is now 10 years old. The heating pad still works wonders at night, but he’s developed a strange web-like appearance on his leg.
A trip to the doctor’s tells us it’s from the daily use of the heating pad – bringing the blood more to the surface of the skin. When he’s able to stop using the heating pad, the skin discolouration will disappear. Nothing to worry about.
Elijah continues to be a very active, healthy, growing-like-crazy boy. This brings me so much joy, but the nagging unknown gets to me every night as I hear the heating pad turn on yet again.
Then I need physiotherapy for consistent hip and back pain, and I discover our sons are covered under Josh’s benefits for a few physiotherapy visits each year.
So I book Elijah in with my physiotherapist while we wait for free physio offered by Ontario health care. But it’s been over a year now, so I’m not holding my breath.
My physiotherapist does her assessment, Elijah is very patient, and she gives him some exercises to try at home. He’s pretty excited at first, and he’s pretty diligent – he knows this should help with the knee. After the covered benefits run out, I consider just paying the quite-expensive fees out of our pocket, but summer comes and we’ll be travelling, and he says it’s not really helping anyway.
Another lull in progress.
The fall comes and we get a call from the pediatric physiotherapist that works for our city, and I ask Elijah to keep trying, to go see just one more health care worker. He agrees, and he goes through another assessment. This young man has now officially gone through more poking and prodding and tests and assessments than I can even count. I marvel at his patience.
This physiotherapist is trained to work with children, and she’s amazing, and she’s thorough, and she becomes the major key in our quest for answers. We didn’t know this when we scheduled our first visit with her.
She gives Elijah exercises to help with his now-aching back, his sore shoulders, and his extremely tight hamstrings. And she notices he needs an adjustment to his orthotics. And wants to send him for one more MRI to check on the area behind the knee instead of the hip. Elijah is less-than-thrilled about all of it, but he keeps trucking along in an effort to get to the bottom of his dilemma. I marvel at him some more.
I watch him leave the house with his daddy at 6am on a dark, cold winter morning – for another MRI appointment. Josh says he’s a super-star, and the noise didn’t bother him this time, and he’s a charmer with all the nurses. That’s my boy.
The MRI results are the final piece needed to solve the not-in-the-least-bit-simple puzzle of Elijah’s 5-year leg discomfort.
He’s got an old injury. They say it looks like a sports injury. The ligaments behind his knee don’t join up properly.
How many times have I asked that on this long journey, I don’t even know.
My now 11-year-old son has an old sports injury that’s been causing him trouble since he was 6 years old. But that does explain the “butterflies” he used to describe to me.
I wonder to myself… What did you DO Elijah?
I run through all the nasty falls, bumps, scrapes, bruises, etc. of the last few years – BEATS ME.
Could be anything really – take your pick – there’s LOTS to choose from!
But I’m so happy for the results, and I gush over the physiotherapist, and I thank her repeatedly, and I hug Elijah when we leave, and I smile big smiles.
But the hard work of getting better continues.
Every day there are exercises for Elijah to do to strengthen around his knee, and exercises to ease his sore shoulders and back and tight hamstrings from carrying his body a little funny these last few years.
He keeps at it, and I keep nagging when necessary, and I do the exercises with him to try and get a smile from this weary fella of mine.
It’s been a long journey – it’s gone on for about half his life – he probably can’t even remember a time when he DIDN’T have leg problems.
(And let’s not even mention the barracuda slicing his other leg and needing 10 stitches on a recent family vacation to Cuba – it’s just been INSANE with leg problems for Elijah. That’s one scar he’ll never get rid of, and may need cosmetic surgery if it doesn’t heal right – we won’t know for A YEAR – ugh!)
But there is such good news at the end of this story – or at least this time of calm in the storm (he may need minor surgery if it gets worse as he gets older) – we went to the doctor yesterday and Elijah is…
CLEAR for no more physiotherapy (his shoulder and back aches are gone, his hamstrings are much more loose, and his knee discomfort is much better!)
CLEAR for no more heel lift (his hips are the same height now!)
CLEAR for no more appointments, or tests, or anything for 8 months!
YES! NICE! CAN I GET A HIGH FIVE!
So as Elijah sat across from me in the car in the parking lot at the doctor’s office yesterday, looking at me like I was crazy, me asking him how he wanted to celebrate, congratulating him on the excellent effort he’d put in to get better these last few years, marveling at him for going through all those tests, reminding him of all the days I’d had to pull him from school from appointments (not sure he minded that one too much 🙂 ), explaining to him it was ALL OVER for at least a while – he just smiled at me in his relaxed way, told me I was getting really excited for nothing, and we didn’t need to celebrate, and la la la la la…. it struck me how this has all become so normal for him.
What was not-simple-in-the-least for me, was simple for him – get the answers. Do what you have to do. Focus.
Maybe he was just reminding me what I’d told him a million and one times through the last five years? What I’d lost sight of in the complicated and confusing and frustrating?
Just… Keep… Going.
Eventually you get there.
Thank you Elijah for all you taught me the last few years on this journey of the Mysterious Pain That Wasn’t Really Pain But More Discomfort.
I’ll have to come up with a shorter title 🙂