Sunday, July 13, 2014

The Choice

I am shocked to see that I haven't updated since January...and for those who have been asking for an update, I sincerely apologize at the delay.

After months of backwards-and-forwards, ups-and-downs, Bryn's bone is solid! She is off of all crutches/wheelchairs, etc and is able to walk and run as much as she can tolerate. That was wonderful news and came rather unexpectedly. Healing had been lagging for so long that I think we just sort of --forgot-- that it was supposed to happen. But it did!

She has been left with some serious soft-tissue issues and is still working at physiotherapy three times a week, but everyone is hopeful that she will be able to begin some dance classes in the fall, which is all she thinks about.

The sad news is that it appears that her growth plate was much more damaged than they had thought which means that her leg is not growing...which wouldn't be a problem except that her good leg is. This  is one reason I haven't written...I haven't wanted to process this news. She doesn't want to process it. It is so discouraging to have gone through all that she has, just to potentially end up back where we started. I find myself asking Him, "What on earth was this all about? Why put her through such a horrendous process, only to have it fail? I just don't understand!"

And I really don't.

However, today was a teaching day for me. I didn't teach...I was taught.

To be honest, when I woke up this morning I was a bit frustrated. You see, I ruptured a tendon 5 weeks ago in my left hand (and being left-handed, that was a drag), then I've got something going on in my right foot, making it difficult to walk for any significant distance. Yesterday, I woke up and both my eyes, and basically my whole face, was swollen...I guess I have had an allergic reaction to something, but Benedryl hasn't made a difference yet. So this morning, I was a little...frustrated. A lumpy, gimpy, puffy, frustrated mom. But I got up anyways because Lauren (who has just graduated) had a dance audition in down-town Vancouver. So, we all got in the car and drove for almost 2 hours in the blazing heat to get downtown. It was a beautiful day, hot and sunny, and right next to the dance building was a lovely little park where the four of us hunkered down for 3 and a half hours to wait for Lauren to be done.

Except for the 40 minutes we took to walk down to the ocean. Again, a lovely walk. We dipped our toes in the water, sat on the steps of the stone wall, and then made our way back up to the park and waited some more.

At which time I realized my phone was missing.

Shoot. I had taken it out at the ocean wall and apparently forgot to pick it up again. My foot was not going to bear another walk down and back, so I decided to wait until Lauren was finished and drive down so one of the kids could run to where we had been to see if it was there.

They couldn't find the phone...because the tide had come in and everything was now under water.

Okay, so it was an older phone, but it had every number, medical contact, etc, in it, which was, again, frustrating. Bryn said, "We should call it in case someone picked it up." Lauren reminded her that the ringer wasn't working and no-one would hear it. She tried it anyways and someone answered it. A lady had seen it as the tide was coming in, rescued it and was waiting nearby to meet us and give it back.

Wonderful!

We drove the almost two hours back home, just in time to rush two children out to camp. One of them is still dealing with major anxiety and separation issues and I was trying to wean their way into camp by promising to stay close by (like, glued to them) the first evening as well as vowing to bring them home every night and returning them to the camp in the mornings. We had just arrived home to grab their stuff when Taeryn burst into tears and said, "Mom! I left my glasses at the park!"

Her brand new $468 glasses. At the park. In the middle of downtown Vancouver. Where tomorrow thousands of people would be stomping and walking and passing through.

I'd have to drive the almost two hours back.

But I had to get the kids out to camp in the exact opposite direction. And the forms for camp had mysteriously disappeared which meant that I would now have to fill out 6 pages of new forms with my ruptured tendon hand. And, I had promised to stay the evening with my nervous child to help them adapt to this new and very scary experience and if I broke that promise, the steps they had made would go right out the window.

I was understandably frustrated that Taeryn had forgotten her glasses, especially as that afternoon I had pointed to them and said, "Don't forget your glasses!" But what could I say, I had done the exact same thing with my phone. So, I took them out to camp, tried to calm the anxious child, made peace with the knowledge I couldn't just leave them there and that I'd have to make the trip back into Vancouver at 11:00 o'clock that night to stumble around in the dark and hopefully find them. I would get home somewhere around 2:30 a.m.

I tried to think of someone we knew in Vancouver, but couldn't. I knew someone in North Vancouver, though. So, I called and asked if they would be willing to drive downtown to this park, which they did, (bless them, Lord!) and guess what...they found them.

My child didn't do so well at camp, so we left a bit early, and as I drove home exhausted, I thought about my day. And it hit me that I had two choices...I could look on it as having been a very difficult day...or a very good day.

Bryn's leg isn't what we had hoped for. She will be left with a leg length difference unless she opts to do the procedure again. But she can walk. She is no longer in excruciating pain. She is starting to dance. She is beginning to feel "normal" again. I had recently brought up plastic surgery to deal with the very bad scars left from the frame, and she said that she liked her scars. That they reminded her of what she had battled through, that they were her victory medals. Taeryn had said the exact same thing about the scars on her face. "I like them," she says simply.

When I look at their scars, I feel sadness and pain and horror.

When they look at them, they see victory and healing and courage.

It depends on the perspective.

Do I look at the journey of Bryn's leg as a good thing? Or a bad thing? The two remain side by side, one doesn't negate the other. But where will I choose to put my focus? On the disappointment...or the thanksgiving?

On the exhausting day...or the return of two very expensive and necessary items?

One thing we had been hoping for was to enlist the help of a local dance teacher to work with Bryn's physiotherapists. She needs to be able to learn how to move her body in dance without compromising or hurting herself. I haven't been able to find anyone. That's okay...God found someone for me.

One day, our head physiotherapist (who didn't even know I was looking for someone) casually mentioned that he had booked Bryn in for several sessions with a visiting physiotherapist...FROM NEW YORK'S JOFFREY BALLET. This gentleman was a former dancer and now works as a physiotherapist with this amazing, world-renown ballet company. He was here following our physiotherapist around for some extra training and wanted to work with Bryn...which he did. After the first session, Bryn said, "This was the best day of my life!" He has now set up a program for her, given her his New York number and email for updates, and will be back in December to see her again.

I am constantly reminded that God has His own plans...and so often, they will blow mine right out of the water.

He will perform miracles in the midst of our worst hours, days, years...purely because He longs for us to know Him as He truly is...the Giver of Life.

And, I can focus on what has been taken away...or I can focus on what has been given. A life-long exercise, I know, but one that will make all the difference.

At the end of this day, I am still a lumpy, gimpy, puffy mom...but the frustration has subsided. And like the tide, thanksgiving has again crept its way in. For which I am grateful.




Sunday, January 5, 2014

A New Year

I have been reluctant to post much about Bryn's progress, as it keeps flipping from jubilation to extreme disappointment, and we finally decided to ride it out a bit longer before trying to give an update.

The last break, which they had hoped would heal within 3-5 weeks, ended up taking two and a half months to heal. Part was spent casted, the rest just on crutches/in a wheelchair. It was a happy day for Bryn when they finally allowed her to walk again, (again!), on both her legs, however, it was short- lived as within the next 5 days, her leg had swollen up tremendously, her knee the size of a football.

Her physiotherapists were very cautious and nervous that the leg had broken again, but over time it appears that it is the tendons and muscles running down to her knee that have created the problem. She had basically lost all the muscle in her left butt-cheek and hip, which are necessary to help lift the RIGHT leg while walking. Because she couldn't, her bad leg was taking a brutal amount of twisting and force to get her right leg up, and couldn't take it.

So, back onto the despised crutches she went. After time, they put her down to one crutch on her good side. (The physiotherapist told me he had at first presented her with a cane to use instead of one crutch, but the power of her withering glare and her adamant admonishment that she was 13, not 90, quickly shot that idea back into the closet). So, around she has been hobbling with one crutch.

The good news is that they are amazed at how quickly she is progressing in physiotherapy. She accomplished more in one week of appointments than they were anticipating she'd accomplish in months. So once again, I am reminded that her strong and determined personality is a gift (in this situation, anyways), and continues to propel her towards recovery. Today, she is limping part-time with no help, using the crutch when she is tired and unable to walk well. So, that feels like progress.

We just passed our three year anniversary. It seems impossible. Time still feels frozen.  It feels like a bungie cord has been attached to our hearts and though the calendar keeps turning,  the physical pain and issues, keep pulling at us emotionally. So, as much as we try to move forward, it feels as though we fight against the force of being tied to the moment those vehicles collided. Unbelievably, we have in the last three months, had more chunks of glass work themselves out of the children's bodies, including two new large pieces in the back of Lauren's head. How do you untie yourself from that?

I realized this anniversary, which was difficult, that December 28th is not just the day we mourn the loss of our Myron. The loss of a husband, friend, father, brother. It is the day Bryn lost the ability to dance. It is the day Taeryn's brain and personality was changed for life. It is the day that I lost the ability to do the simple tasks around the house, or with my children, because of injury. It is the day we lost our income, our way of life, our schedule, our hobbies, the children's peace...the list goes on and on. There is a lot to mourn from that one moment in time.

Just before Christmas, Bryn spent a night in an incredible amount of pain. She called me from downstairs at 3:00 a.m. because she couldn't stand it anymore. It has been a few months since it has been this bad. We spent so many nights trying to make it through to the next morning, nights when nothing stopped how badly it hurt. This was one of those nights. I finally crawled into bed and just held her; there was again, nothing more I could do. I began to pray that God would relieve her pain, but we have prayed that so many times in the past and still had to endure. Finally, in silence, I desperately began asking, over and over, to give me her pain. Let me take it Lord, I cried. I cannot bear to watch her endure another moment, let me do it. Let me do it for her. I'm begging you.

After a few minutes of this internal plea, Bryn whispered, "I think it's getting better." And finally slept.

I was so grateful. As I finally got back into my own bed and lay there, God's love for us flooded me; it truly overwhelmed my heart and my mind as I felt the truth of a God, who after enduring the suffering of His children reaping the rewards of sin on this earth, finally had to cry out, "Let Me take it! Let Me endure it! I cannot stand another moment of their pain. I need to take their pain!" And He did.

Our pain is temporary. Thank God, it is temporary, even when it appears unrelenting. Even when we feel tied to our circumstances. Even when He asks us to endure and we don't know why.

I pray that whatever we encounter this year, whatever we are momentarily tied to, be it difficult or full of joy, we somehow are able to glimpse the heart of Jesus in the midst of it. That we might learn one more thing about Him; about His love for us. I know so little of a God so big. But His love...His love I know.




Wednesday, November 13, 2013

A Step Sideways

Our appointment with the surgeon last Wednesday felt rather like...a step sideways. If Bryn could step. Which she can't. At least not to the left. The leg is still broken but other areas that hadn't filled in yet have shown some improvement. They decided to remove the cast in order to help her knee which has such limited mobility in it, that every day it remains frozen makes our physiotherapists groan with frustration. She is to remain off of the leg for another four weeks, in hopes that the break will heal.

We are doing a lot of waiting. It was good news that it hadn't worsened (unlike the time before), but somehow it still didn't feel like good news. When you are holding your breath for five weeks (after holding it for 8 months), being told to hold it for four more weeks feels...discouraging.

The reality of how fragile her leg is hit her hard shortly after. One day we were all walking into a store. One of the kids was jumping and misjudged the distance in front of them, stumbled and accidentally banged into Bryn who was on her crutches, having just had the cast off. The impact sent Bryn's crutches flying out of her reach and knocked her off balance. No one could react quickly enough to grab her, but thanks to her amazing flexibility and balance, she managed to do some kind of strange hopping-manoeuvre that I still can't understand was possible and kept herself upright, with her bad leg in the air. The sibling was, of course, absolutely mortified at their mistake. Bryn burst into tears and we all had to stop to gather our composure and reassure ourselves that she was okay. It feels as though the slightest mistake, one misstep, and everything shatters.

Life is feeling that way. I imagine that everyone, at times, feels that way. One wrong move, and everything could be gone. One misstep, and it will all fall apart. I make the mistake of feeling like it is all on my shoulders. I make the mistake of believing that it is all based upon the decisions or opinions of other people. I am trying to find the strength to remember that it is not their, but rather His, opinion that will dictate our direction; that this is His story and we are merely characters in it. But characters who are loved. And that maybe a step sideways for us, could be a giant step somewhere else for Him and His plot line. I don't know if I'll like the book, but I know the writer...and He can (I feel somewhere inside of me) be trusted to make the story beautiful in the end.


Wednesday, October 30, 2013

A Widening Gap

Bryn's last visit back to the surgeon showed that her leg was worse. The break is not healing but widening, and the new growth is extremely fragile. Her leg is barely holding together and the surgeon is worried. Very worried.

They've now casted her from hip to toe in a heavy plaster cast (why they decided against the body cast they wouldn't say...I'm at the point where I want them to wrap her entirely in plaster and glue her to a bed). That was two weeks ago. Next week, November 6th, we go back to see what the options will be. Hopefully, prayerfully, the leg will get its act together and begin healing. I don't want to think what the other options are.

Bryn is doing incredibly well emotionally. She is so positive and matter-of-fact. And we give great thanks that she is not in pain, that makes a world of difference.

So, if there are those that would fervently pray with us this week for good news, we ask for this leg to be made whole again; for healing; for the chance to dance again. And for the strength and faith to continue believing that as He has shown us in the past, He will continue to go before us and lay the groundwork so there is a foundation for us to stand on, no matter what it is we need to face; and that He will do it with His enduring love and mercy.

On a completely different note:

Karson came to me yesterday with this news:

K: "Mom, there's a cat in the pool!"
G: "What do you mean?"
K: "There's a cat in the pool. And it's floating...like this!" (imitates a floating cat)
G: "NO! You're kidding, right?"
K  "Mom! I'm not, kidding! It's floating in the pool (repeats the imitation) and I think its dead. It must have drowned. Come and see!"
G:  "No, I can't look. I can't. That's horrible. Somebody's poor cat died in our pool! How are we going to get it out?"
K: "Well, Bryn's sitting out there. She's got a stick."
G: "Oh good! She's getting it out then?"
K: "No. She poking it so it'll turn around the other way. She wants a better picture of it."

Sigh.

I couldn't even bring myself to go look at it, never mind try fishing it out (what kind of cat falls into an above ground pool?). So, I called my friend who was working an hour away and asked if he could stop on his way home after his very long day of work and fish a dead animal out of our ice cold swimming pool, which to the credit of his very kind nature, he did.  Then I had to go tell the neighbours that poor Brutus has drowned. He had been missing for four days.

Karson made the astute observation that having been in a freezing cold pool for four days, a fluffy cat was no longer fluffy.

I am the worst neighbour ever.




Wednesday, October 2, 2013

NO!

 Bryn's leg broke.

She has been out of the frame for one month, almost to the day, and we don't know for sure what happened, but x-rays show a piece of bone has broken off and a crack has opened horizontally just above the knee. Because of the location, she cannot be casted without a spica cast (both legs, partial body cast), and a leg cast would put too much pressure on the fracture and break it more, so she will have to go without a cast making the risk for a complete shatter high if she slips or knocks it. So, she will be back in the wheelchair for the next four weeks, all physiotherapy has stopped, and we are feeling...kind of sick to our stomachs, truth be told.

One minute, Bryn is terrified of shattering it completely, then brazenly refusing to let it stop her the next. It is like trying to keep up with a split personality. I can relate though. One hour I am resolute and thinking, "Well, we just keep trying!", the next hour I find myself crying. Oh, I was so hoping it would just go smoothly!


Wednesday, September 4, 2013

OFF

The procedure to remove the Ilizarov frame went smoothly. I took a look at her latest x-ray...her femur looks a bit "swiss cheese-like", what with the missing "shark bite" and now six large holes where the rods had been. How she will function without it snapping is inconceivable to me, but that is not in my hands.

They got her pain under control fairly quickly and this morning she is limping around with no crutches. And regular pants on too! No more velcro seams!

I am having a difficult time reconciling in my head that this stage is done. No nostalgia, nor any sense of sadness. Just some disbelief, I suppose. Wow, it's off! It kind of reminds me of Thanksgiving dinner. You spend a week planning the menu, cook all day long, take the pains of setting the table just so, getting everything right...then people sit down and within 30 minutes, everyone's full and pushing away their plates. Every year, I am struck with how much work went into providing 30 or so minutes of feasting (added time to sit groaning rubbing your belly of course!).  The turkey is annihilated, serving bowls are empty, gravy sits congealing, what were glistening plates now sit out of place, stained with the hard work of readying a banquet.

The frame came off within 40 minutes. All those months of waiting and working to make her body ready, then enduring the seven months of wearing it and all that entailed...and off it came, quickly, pieces lying in a heap somewhere within the walls of the hospital. It feels a little like Thanksgiving dinner...surreal that in less than an hour, it disappeared, just vanished. I'm a little out of sorts today, I think, trying to wrap my head around that. I think I am afraid that we will discover that something is still to surprise us, overlooked, like a side-dish that was left in the oven and forgotten to be placed on the table with the rest of the food. But I want to believe that she is done the worst of it. So I will ask for the faith to believe that and to enjoy the satisfaction of what has been accomplished.

I'm next. I see the surgeon in two weeks to find out what can be done to repair the damage in my shoulder and neck. It intimidates me, being out of commission. I don't know how that is supposed to work, not being able to function at full capacity, but somehow it will. Tendons need to be stitched back onto bones, ligaments repaired...I am not looking forward to it nor the long months of recovering the use of my arm afterwards, but I keep thinking of Bryn, of all the kids, of what they've gone through and how they've been so brave and fought so hard. They will inspire me to keep trying, just like they've been doing for the past two years.

And so, its off! Yea, its off! They will continue to track her until she is fully grown and we pray that the leg will keep up with her growth and that this will never have to be repeated.

It's off!

Wednesday, August 28, 2013

Hooray!

This morning we made our regular trip into BC Children's Hospital to meet with Bryn's "team". Only this time, we came home with great news: The Ilizarov frame will finally be surgically removed on Tuesday, September 3! That is the first day of school, and to my amazement, Bryn asked if they could move it instead to the 10th so she wouldn't miss orientation! The surgeon told her that he was leaving the country after the 3rd...so did she want the 3rd or sometime in October?

Well, when you put it that way...the 3rd, please.

Tomorrow, it will be 7 months since the surgery to put it on. She has had 11 infections, three hospitalizations, countless hours of physiotherapy and more pain then I can relate, but she did it! She made it through, and we are so happy to leave this stage behind.

There remains another year of physiotherapy to work on her frozen knee and shrivelled muscles and ligaments. Because they are removing the frame well before the bone is completely filled in, it is fragile. Jumping, running or a fall could snap it, so she will have to be extra cautious. I think not being able to dance yet might be even harder, now that she feels free of the steel, but the reality is that dancing and true freedom are still a ways away.



For those who are interested: Over time, we slowly had separated the two pieces of bone until there was a 4 cm gap. Then the bone needed to fill in. The first x-ray is from June 12, 4.5 months into the frame. It shows that the back of the bone had filled in, but what they call a "shark bite", or a missing section of bone, was left around the front side.  The second x-ray is from today. It shows that the missing section is beginning to fill in, but as you can see, a significant section of bone is still missing and needs to grow. Until it fills in, she will be at risk for another break.

So, just like I'd say, countless times, to her when she was a toddler: Please handle it carefully and  DON'T BREAK IT!

I think I am going to be a bit of a basket-case until I see an x-ray that shows a solid bone.

So, six more days of lugging this thing around, and then off it goes. Hooray!