What life looks like for us

In a more recent post explaining what Hope was diagnosed with, I had mentioned that when we first were told of Hope’s medical needs, I was desperate to find people who shared a similar story. I would search people’s blogs trying to find a glimmer of hope. How did people live their lives? Now that we are 9 months into this journey with Hope, I hope that others can find comfort in seeing what we focus on during a typical day – and that there can still be joy in the mess of a life you never expected.

What’s the biggest thing you deal with?

Hope has brain abnormalities, scoliosis, low muscle tone and eye abnormalities – but dang, is she ever cute. Despite all the challenges those things bring, seizures are our biggest issue. When Hope was 3 days old, she had her first seizure. She was treated with medication, and we didn’t see any other seizure activity for a couple of weeks. She was later diagnosed with a specific type of seizure called infantile spasms. Infantile spasms put your development on hold because your brain is constantly active. Her EEG always looks the same. It shows a pattern called “hypsarrhythmia” – the Latin word for chaos.

There are 2 mainline treatments for infantile spasms, and Hope failed both of them. The Keto diet is what we’ve just started to try as a result of these failed attempts.

Infantile spasms are repetitive movements that happen in clusters. Often, they can be missed. They can be as simple as an eye roll or twitch – something that seems so small, but can be so detrimental. For Hope, she will often do 2 different movements, and do them in clusters about 10 – 15 times a day. She will either yelp very loudly while twisting to the side, or her eye will roll, lips will smack and her body with slightly twitch, while crying. These two movements happen at any time of day, and any type of stress to the body can increase them – like a fever, sickness – even constipation!

We record each seizure type and duration in a chart, so that we can compare our days with the team of neurologists at Sick Kids.

While Hope is having a seizure, we comfort her. We usually speak softly to her, sing or pray while holding her.

Syringes, pill crushers and medicine – oh my!

I have become that person who has a favourite syringe. A big portion of our day is consumed with getting Hope’s many medicines and vitamins ready. That involves crushing pills, adding water, and administering each one through her G-tube. Hope is on 4 anti seizure meds, a reflux medication and CBD oil – she gets these twice a day. She is also on 5 supplements because of the lack of vitamins from the Keto diet. So, as you can imagine, that’s a lot of syringes to wash, dry and assemble each day. When we first came home from the hospital she was on 1 medication, once a day – that is crazy to me. Crazy because a couple of times I was close to a complete breakdown because I was afraid I’d forget to give it to her, or that she’d spit it out. We’d go out and bring her medicine with her, and I’d double check her bag 20 times before we left to make sure we had it. I’m happy to say that although we are still insanely organized, our stress level has gone way down. We can get those meds and vitamins ready in no time now, and have them all packed and ready to go when we go out.

Putting each syringe back together and away once they dry makes my heart happy – see, you can find joy in anything!

Tubie Life

I knew that many girls with Aicardi Syndrome needed G-tubes. Knowing that Hope may need one eventually would keep me up at night. We fought against it like nothing else, but it came down to her silently aspirating a little bit. In order to start the Keto diet to help with her seizures, we had to agree to a G-tube. Long story short, and many tears later…guys, the G-tube is…

not. that. bad.

Actually, it’s super simple and has made our life so much easier – I just didn’t realize at the time how stressful feeding time was. Hope has always had the ability to swallow, but depending on the medication and dosage she was on, many times she struggled to stay awake while she ate. Add that to long days and long drives to appointments and I was always trying to feed her. Now, no matter what, wherever she is, she can get her feeds, and with Keto, her feeds are her medicine basically. The G-tube allows her to get every last drop. Yes it’s weird and unnatural, but hey – she needs it and it’s available, so we are thankful for this new normal.

“You’re fat, but you’re the GOOD fat” – Avocado affirmation

Because Hope hasn’t reached seizure freedom with her medication, we are now trying the Keto diet. A diet that has proven to be effective for many people with epilepsy – so we are hoping it works for Hope. She’s not on bacon and avocados just yet πŸ˜‰ but every evening we make a batch of her keto formula that (right now) consists of Keto-Cal (a high oil/fat formula), microlipids (fat), protein powder and water. We use a scale to measure everything, blend it up, and pour it into 5 bottles for her 5 feeds for the day. Each feed takes 2 hours to run through her G-tube, and she feeds every 4 hours with a break at night. Along with her feeds, we are consistently checking her urine to see what level of Ketosis she is in, and checking her blood sugar to make sure everything stays stable.

Exercise? I thought you said “extra fries”

Exercise, and different therapies, are a big part of Hopey’s day. I think the poor thing pretends to sleep some days because she knows the second she gets up, we’re getting started. It is as simple as stretches all over her body, tummy time, sitting upright in a chair and constantly moving positions. Hope is hypotonic, which is a fancy word for having low muscle tone – she’s pretty floppy. She needs to work extra hard to do simple things that other kids could do for her age – like bring her hands together when she’s laying down. So we are always stretching, finding new positions and working on the same repetitive movements over and over again to build her tone and help her brain make new connections. This by far is my favourite part of the day – even though it’s all throughout the day. I will admit though, it can be discouraging because you work so hard and often see the tiniest amount of progress – like so tiny – like we squeal when she stretches and lifts her legs at the same time.

But it’s ok – it reminds me over and over again that we can’t take anything for granted, and that there is so much joy found in the littlest of things.

I know I’ve mentioned a lot of things – and there is still so much more. There are endless cuddles, bath time, stories, poo-nami’s and other therapies. There is laughter and tears. But, if you are reading this and you just received that dreaded diagnosis, please please please know this one thing:

Your baby is a gift.

Every single life is precious – no matter what it may look like. Yes, it’s going to be so hard – but you can do it. On those difficult days, we remind ourselves that God created Hope, fearfully and wonderfully. That He chose US to be her parents. That He is leading us and guiding us every step of the way, and we just need to do the best we can to take care of her. That even though there is sadness, there is honestly and without a doubt, so much joy. It is a privilege to be her parents.

So embrace those moments of sadness – of questioning why this is happening to you. These moments are necessary and your feelings are valid. Cry, vent, do what you need to do. But please, don’t spend too much time there. I still struggle with this, and will probably continue to do so for a while. But once you accept the fact that this is your life, and throw away the expectations you did have, it does become easier day by day.

And remember, it’s all going to be ok.

The chair

This morning, and many mornings lately, I have started my day with a Psalm. I haven’t really been following a particular order, but actually just flip through, re-reading passages I have underlined and highlighted. The Psalms are usually where I find myself when my heart is heavy – and those have been our days lately. Yes, Hope’s seizures have been fluctuating more so lately, and when you have started to see some progress, bad seizure days can really get you down. Good days, bad days, but yet to be seizure free days.

Lately, our days look like wrestling with feelings of doubt and discouragement, questioning God and begging Him to give us answers and peace. And the worst part of those days I find are when I have to do everything I can to remind and tell myself that God IS near, even when He feels so very far away. God is so good, God is so faithful are words that are hard to say on these particular days. All the work I’ve done to “come to terms with things” feels like it’s been erased and I’m starting new.

But then things get better. The situation often stays the same, but reminding ourselves of WHO God is usually results in a new found peace in our hearts. So, we keep going.

But today, a chair is what brought me back to that place of despair.

As Hope grows, it becomes more and more apparent to us that she is different. She is developing different and is not acting like a typical 8 month old. It hits us when she becomes hard to carry because she can’t hold herself up. It hits us when we see other kids her age doing things she can’t do. It hits us when the toys we have down in the basement stay there because she wouldn’t be able to use them just yet.

Hope has been trying out different seating options lately to give her the best support possible. I love this stuff – concrete, tangible things that we can try out to help her. No more talking, let’s do this – you know what I mean? I had been so excited for this day. Today we were given The Special Tomato seat to try for the next couple of weeks. Out of all the seats she tried, this one supported her best. I loved seeing her in it, and was excited to know that she had something new to help her. So I took our little bouncy chair that she’s been in since she was born to the basement, and set up this new chair in its place.

And then the ladies left, and I started to wash syringes. I looked over at the chair, and it hit me.

That chair – that is a special needs chair.

And that’s all I needed to go from feeling confident and happy, to down and depressed. All of a sudden that positive spin was gone and it wasn’t this thing that would help her, it was this big slap in the face that would remind me daily that my daughter can’t sit on her own, and needs so much help with something that most of us take for granted.

And in those feelings of anxiety and despair, God reminded me of the things I read this morning – mainly that He hears my prayers. I kept telling myself over and over, He knows. He knows.

I’m sure someone here needs to be reminded today, too, that He is sovereign. That He can do infinitely more than we can ever ask or imagine. That He knows every single detail of your situation, knows how this moment fits into His big picture and plan, and is truly in control. I often feel out of control, but He’s not – and thankfully, in that moment of despair as I stared at that chair, it started to change into a feeling of peace.

He knows – and right now, that’s all I need to know.

β€œWhat does she have?”

You know how everyone tells you not to Google? Well, I’m the worst for that. The second we knew something wasn’t right during my pregnancy, I started to Google. What I searched for changed all throughout our journey – even up until today. Yes, I will admit that googling what we thought she had at the time caused me to go into full on panic mode on many occasions. The more I would read, the more terrified I would get, but I just couldn’t stop.

Then those searches turned into trying to find other people going through something similar. I wanted – I needed – stories of hope. I needed to know that no matter how bad a diagnosis could be, suffering and joy could co-exist, and that we weren’t alone. I know that everyone’s story is different, but coming across similar stories was and has been a tool in helping my heart grow and heal.

I’ve had enough people ask me what Hope’s diagnosis is. I’m always hesitant to tell people, because – well, Google. But it’s time. I hope that someone in similar shoes will stumble across my blog or instagram, and feel encouraged, helped and know that there is hope in the darkest of times.

Hope has been diagnosed with Aicardi Syndrome. Although Aicardi Syndrome is a rare genetic disease, all of our genetic testing came back negative. That is because Aicardi isn’t something passed down, but a new mutation that happens in the individual. Hope has been diagnosed based on clinical findings: agenesis of the corpus callosum (the bridge between her left and right lobes in her brain is missing), infantile spasms (seizures), scoliosis and an eye deformity. We had been given other names of things while I was pregnant, and when Hope was born, the first neurologist we met in the NICU told us about Aicardi. When I Googled it, I couldn’t believe that basically all of the things that were listed, Hope had. Aicardi Syndrome only effects girls. We were told that it is a mutation that occurs on the X chromosome, and because girls have two, they survive, while boys don’t make it sadly. Now, with all of that said – you have to take your googling with a grain of salt.

We know that girls with Aicardi Syndrome vary greatly when it comes to the degree of their struggles. We have both had to remind ourselves over and over again that God created Hope, fearfully and wonderfully. He is the only one that determines her days – not a diagnosis – just like the rest of us. So just like we all should be living, we take each day as it comes, and try our best not to worry about tomorrow. Although there are tough days, we have witnessed miracles. One huge one being that Hope is with us. She turned 7 months this week, and we were told she wouldn’t come home with us from the Hospital. He is always always at work.

Now that all of that is behind us, soon I will share with you what a typical day looks like. This was something that I was desperate to read about and see on my frantic Google searches. Could life still be normal? Were these families happy? I hope that an honest glimpse into our life will be just the thing someone needs to read and see.

Coming soon πŸ™‚

Where our Hope is found

This morning, I was walking from our room at the Ronald McDonald house to Hope’s hospital room. I love how quiet the city is early in the morning.

Like always, my mind was racing – wondering what the day ahead of me would bring. Would she have more seizures today? Would she still be really drowsy? Would we have to increase another medication? Would today be a good day? All of the unknowns that usually flood my mind each morning, and really, all throughout the day.

I know that I am technically supposed to be giving all of my thoughts over to the Lord – but some days I don’t really know how to balance between doing that, and being present in what our reality is.

Lawren and I have been taking turns each night. One of us will sleep in her hospital room, and the other at the RM house. Last night it was my turn at the house and Lawren walked me there. As we were taking the elevators down we caught a glimpse of a little baby through the window in the NICU – all swaddled and being held upright in an isolete as the mom was feeding him with a tiny bottle. Oh boy did that bring back a flood of memories that got us talking.

As we were walking to the house we started talking about how life is so different than we imagined. We often talk about that, without “staying there” for too long, if you know what I mean. Verbalizing how our life still shocks us some days, but we try our best to keep looking ahead.

We talked about how at our wedding, we stood at the alter reciting vows, and singing in Christ alone, my hope is found, He is my light, my strength, my song. We talked about how God brought us both together and He knew exactly what our life was going to look likeand we could have never even imagined it.

This morning as I walked back to the hospital I tried to remind myself in the midst of my racing mind that God has always been faithful. I thought back to ways that He provided for me, took care of me and protected me, and I realized that I was never disappointed in Him. But now, this didn’t measure even remotely close to what I’ve ever been through. All of those other things, while big at the time, seemed to pale in comparison to what we were going through now.

But really, that doesn’t matter. Those things were memorial stones that could be used for me to look back on to help me get through this current time – and to get through it with joy.

He was faithful then, He is faithful now. He is the same, the situation is just different.

It’s so easy to put my hope in a good day. To resolve in my mind that if Hope is alert, and has less seizures in a day, I am happy. But when the opposite happens, and when it is a bad day, I feel hopeless.

My hope, your hope, our hope can only ever be found in something that will never fail us. It is impossible to think that anything in this life can bring us enough joy that we can put ALL of our hope in it. I can tell you that first hand. Hope will have a good day and all of a sudden I am filled with joy. I am feeling myself, I feel happy, and I feel like I can conquer anything. And then things take a nasty turn and I am knocked down. Why? Because my hope was dependant on the events of that day. I am slowly learning what it means to put my hope in God alone. The author of my day. The One who goes before and knows exactly what will happen. That means, whether it is a good or bad day, He is the One I find my joy and confidence in. Especially on those bad days, knowing that He is my hope and He is the one establishing my steps for His purpose, helps me not to be in despair or feel shattered.

He really is a Rock and Fortress – a safe place. And I’m not saying that I can’t feel sad or cry – those are the moments that push me to Him even more – where I try to work out what is going on, ask Him for strength in the process, and find rest in that safe place.

I hope you can find peace, rest and HOPE in Him today, no matter what you are going through. I will often sing these words to Hope while snuggling her. I hope they can remind you of Who your hope is in today:

In Christ alone my hope is found,
He is my light, my strength, my song
This Cornerstone, this solid Ground
Firm through the fiercest drought and storm.
What heights of love, what depths of peace
When fears are stilled, when strivings cease
My Comforter, my All in All
Here in the love of Christ I stand.

Made up stories

When I was in teachers college, I used to take the bus to my placement downtown. I had a short stint where I did a placement at an ESL Center. Everyday I would get on the bus, and there was this little old man I would watch (it isn’t as creepy as it sounds – I promise). He would always get off at the stop by the hospital. And day after day I started to make up a story about him.

In my mind, this man was visiting his sick wife at the hospital each day. He was all alone at home, and would sadly take the bus to go and visit his love. One day, I actually started tearing up. It was kind of ridiculous – because it was a made up story. This wasn’t the first time I did that, or the last. Often I will look at people, imagine what their life is like, and usually feel pretty sad by the end of it.

Especially now. We’re in the thick of our difficult situation and instead of it making me feel like it isn’t fair because “why do we have to go through this” it’s actually making me see and understand a little bit more that everyone is dealing with something.

I’m a pretty impatient person. It used to drive me crazy when people weren’t paying attention. Things like waiting in a drive through line, the person in front of me not going as soon as the light was green, having to really slow down because people were walking too close to the road and not realizing a car was behind them – those things would really bug me.

Until I become that person.

I’m that person standing and staring off while the Starbucks lady says “hello, can I help you?”. I’m that person that gets honked at because I’m not going the second the light turns green. And I’m that person that looks like she’s not really paying attention most of the time. I’m that person because my mind is now consumed with something. I can’t think clearly. I’m often replaying in my mind when we have given Hope her medicine, or when my next appointment is, or if this new movement she is doing is abnormal and I need to call the doctor. And maybe it’s a good day – but I’m still daydreaming about what I wish life looked like in this moment. My mind is constantly racing and because of that I’ve become quite oblivious some days to what’s going on around me. And when I feel like people are being short with me, it takes everything in me not to start crying and scream “I’m just really sad right now ok!”

Because we were in the hospital over the weekend we weren’t able to go for ice cream – something we do once (ok sometimes twice) over the weekend. We drive by the lake, get an ice cream, and then drive home by the lake. We got home from the hospital Monday afternoon and decided to do our ice cream run so that we wouldn’t ruin our streak.

We were driving and a young boy on his bike almost swerved into us. Instead of getting angry I instantly thought that something must be distracting him for him not to have heard us coming. As we continued driving and we passed random people, even the people serving us our ice cream – I started making those stories up in my head again. I know that these stories I make up in my mind are not what’s really going on. I know that not everyone is going through trauma in their life moment by moment – but I think it is fair to say that we are all a little (or a lot) distracted by something going on.

For me, God has used our situation to help open my eyes to a hurting world. I’m still not great at it – I still have my moments where I’d rather honk at the person in front of me instead of letting it go – but God has graciously shown me little by little that not everything is as it seems.

There is heartache and hurt all around us. I pray that God will open my eyes more and more so that I can be compassionate towards others. Honestly, I really believe this is something only God can do. I think even the nicest person struggles with being impatient.

May God use our current troubles to open our eyes. To help us reach out, love better, and be compassionate to those around us.

Mind vs. Heart

“Her brain is abnormal and that in itself brings global delays. But, her seizures on top of all of that make it even worse.”

This is what one doctor said to us the other day. I had asked him if it was common for it to be so hard at the beginning, and if it starts to get better over time. This was in the same appointment where we were told that Hope would definitely need a G-tube.

“Oh, the keto team won’t do anything unless she has a G-tube.”

Thanks a lot.

Sometimes I feel like we are continually being knocked down. I try to find the words to describe just exactly how I’m feeling, and saying I have a broken heart doesn’t even do it. It feels shattered most days. There are days where I really feel like we’re in a pit. I picture a ditch sort of – and there are days that I am crawling up the sides to get to the top, and the dirt on the sides are crumbling, making it hard for me to get up there – but I keep going. And then sometimes I make it to the top, but it’s like something is up there and once I reach the top, it pushes me back into the ditch and I’m right back where I’ve started.

Are you depressed yet?

Situations like this really make you search, evaluate and work out your faith like never before. Did I even know God before? Did I even ever really feel like I needed Him? Oh boy did I ever need him – and do I ever need Him now.

Driving home from the hospital the other day, after talking about her brain and especially focusing on a G-tube, I wanted to cry – well, I felt like that’s what I needed to do. I needed to react, because that’s what I do every time we hear something new about Hope – or things we already know over and over again. I did cry a bit – but that car ride was different. There was this strange peace in my heart. Yes, my mind was racing – it felt like the right thing to do was to be freaked out and worried – but my heart was at peace. I had already had my many days previously of crying, worrying, reacting – but it was different that day. It was like my heart wouldn’t let me fully react because there was this peace washing over me knowing that God knew this moment would come. It wasn’t a surprise to Him, and because of that He would continue to give us the grace to handle each new thing that would come our way.

Knowing that God knows and goes before us makes all of the doctors appointments, discussions, and tough days a little bit easier. It may seem harder because we have to be continually reminding ourselves that He knows and He is guiding us, but I guess that is better then coasting through life thinking that every thing that comes up, and every outcome, rests on us.

I know I need to change my perspective – instead of imagining that I am climbing out of that ditch, I need to KNOW that it’s actually Jesus reaching out His hand and pulling me out. Reminding myself that the God that we serve is the God who rescues His children and promises to always be present and near.

I hope that you can be encouraged in knowing today that whatever it is you are going through – He is so intricately involved in every single detail of it. For me, it is this daily – sometimes moment by moment – resetting of my heart and mind to trust Him again and again. Try to remember, if He takes care of the sparrows and the grass of the fields, why wouldn’t He take care of us? I hope you can rest in that truth today.

June 2nd

There are a handful of dates that stick out in my mind, and June 2nd is one of them.

Yesterday at the hospital the nurse wrote June 1 on a piece of paper. I was shocked and said to her “is it June 1st already?!” June 1st was the day I left Zambia after living there for 2 years, and June 2nd was the day I returned home.

I had spent the majority of my 20’s being in school, and travelling a ton. I LOVED seeing different parts of the world. Exploring was and still is my favourite thing. It doesn’t need to be anything fancy – as long as it was somewhere different and new, I was game for trying new foods, seeing new places and meeting new friends. Nearing the end of my time in Zambia, I really felt the Lord preparing me for this chapter in my life to close. Not in a dramatic way – I didn’t make a big deal of it – but I was going home, and I was finally at peace with just staying home and investing in my time there. I have always been one to look at and dream about what’s next – and that usually involved where I would want to travel to next. But God really prepared my heart and even though it’s hard to explain, I was so at peace with the current chapter in my life coming to a close, even though I knew it wouldn’t involve travel (for a little while anyways).

On June 2nd 2017, Lawren picked me up from the airport and we hit the ground running. I was so thankful for my time away in a place I loved, surrounded by people I loved; and I was so thankful to be returning home to a place I loved, and surrounded by people I loved. I knew Lawren and I were headed in the direction of marriage (we ended up getting engaged 28 days later) but who knew the rest. I imagined we’d get married and have babies – life would be simple and sweet.

Last year, on June 2nd, I posted this on Facebook:

It popped up in my memories today (by the way – those Facebook memories get me all the time – anyone else? 😭). What stuck out to me was the last part

“God is faithful. He provided for me then, has provided for me now, and will continue to be faithful. My job: to trust Him”

Those words were so hard for me to read this morning. I automatically thought to myself – Ha! Life was so easy then. It wasn’t even really that hard for me to trust. But now it is.

Where am I on June 2nd, a year after I wrote that? At home, on the couch, with a sleeping babe lying on me who is recovering from surgery. A simple eye surgery turned into her needing a tube stuck down her throat so they could assess her airways. Thankfully they found nothing, but this poor little babe is so raspy and having trouble breathing as her throat heals – so she is laying upright so I can help her when she starts having a coughing fit.

Our journey with Hope has been the craziest adventure I have been on. It’s not easy to trust God when things are completely different than you had imagined your life would look like – but if it was easy, would I feel the need to trust Him? Probably not.

This little lady has already taught and shown me that I need to rely on God more than I have ever imagined possible. Trusting in Him has taken on a whole new meaning, on a whole new level.

My mind often drifts back to my days in Zambia. I want to be in the hot sun, with my cute little friends in Chongwe hearing them say “hallo auntie!” But you know what? While I was there my mind would drift to being home in Canada. One of the biggest lessons I learned while I was there was taking the words of Jim Elliot to heart:

Wherever you are, be all there.

So I choose to trust God and put those hard words into practice. Whether I’m driving down a dirt road, and buying avocados the size of my head at the market, or cuddling a sick little baby in a hospital room, with His help I will remember to be content and to be all there.