Will it always be the same?

I’ve been feeling so exhausted lately. Not only physically exhausted but mentally as well. For me (and I think most of us) I would take being physically tired over the exhaustion of my mind and emotions any day.

As I wake up night after night to end Hope’s feed and administer some medications, I think about how much I love her, but more so how much I am reeeeally missing our night time nurse (Corona, you can be done anytime now, thanks).

As I often wake up an hour or two after that to soothe Hope because she is having a seizure, I think to myself, is this ever going to change?

It’s one thing to wake up to a crying baby, and I know that is exhausting. But when you are waking up night after night to the sounds of a loud yelp, leading to a seizure, it takes a toll on you. Last night was particularly hard. As Hope gets physically bigger, it’s harder to tuck her into my arms and hold her close. As we wean her off of a very sedating medication, she is now way more alert, which means her seizures come with louder cries, getting really worked up, and moving her body all around. I’ve already been hit in the face and scratched (which reminds me, I need to cut her nails).

And with all of this, as I am trying to hold her in place, evaluate her breathing, and pray over her, I’m finding myself more and more frustrated these days. Not at her, but at the situation.

How am I still sleeping in 2-3 hour intervals as if I have a newborn?

How come my body is aching – she is getting so big and I feel emotional that it’s getting harder to hold and carry her.

How is this still happening? Will it always be like this? Will it always be this hard?

Why is the middle of the night the time when I feel most alone. God, where are you? Where is the strength that You promise your children?

I came downstairs this morning, looking like I’ve been run over by a truck (like always) and cried into Lawrens arms. I talked talked talked, and he listened listened listened. Like always, he was caring and compassionate, but straight to the point:

Yes Melissa, this is our life. Realistically it’s probably not going to change very much. We have to take care of her the best we can. Look at how cute she is! (Of course she is sleeping next to us on the couch)

And then came my devotional. Paul David Tripp’s devotional New Morning Mercies has been my go to each day, and his words always direct my thoughts to God. I was reminded today of God leading the Israelites around the city of Jericho. An interesting story about God instructing His people to walk around the walls of the city of Jericho, and eventually the walls fell down (you can find the whole story in Joshua 6). Tripp writes:

…God put a trial in front of them that would powerfully demonstrate his glory and grace, which he was willing to exercise for their salvation. There was no way that this ragtag group of pilgrims would ever be able to defeat the fortified city of Jericho, but that was precisely the point.

The gist of his devotional focuses on our need for God in order for us to do anything. That if we are His children, He will carry us with His strength and wisdom.

This was exactly what I needed to hear today. To be reminded again that no matter what our situation is, we can face it (with joy) because we don’t have to carry the load on our own. It was a gentle reminder that I was carrying more than I needed to be. God made us Hope’s parents and as we seek Him and ask Him for strength and wisdom and understanding, He always does deliver – I just forget a lot, and think that every single unknown about her rests only on me.

And the beauty of this reminder today is that it is for all of us. No matter the scope of the situation in front of you, remember Whose you are. There is Someone, way stronger than you, going before you always.

So we can confidently say, The Lord is my helper; I will not fear; what can man do to me? Hebrews 13:6

Wait wait wait

It has been a long minute since I’ve been on here – boy, time is flying. Since my last post, our Hopey girl has turned ONE! We had a sweet little party with our family; stuffed our faces with donuts and cupcakes, and enjoyed every minute of celebrating our beautiful little girl – the best gift we’ve been given.

Over and over again we were told that the first year would be the hardest. There were so many appointments, long hospital stays, tweaking seizure medications, and dealing with daily ups and downs when it came to seizure control in particular. There were many moments where we saw God work in powerful ways, and many moments where we lay in bed – confused and scared – because things weren’t looking good.

Finally – that first year was over and things were going to get easier. But in true Hope fashion, turning One didn’t make anything easier. In fact, things felt harder.

How were we STILL dealing with uncontrolled seizures?

How did she STILL not have head control?

Why was I STILL worrying about things that I thought were dealt with?

I couldn’t understand why it seemed as if her seizure control was going backwards. At one point, she was having even more seizures then we’d previously brought her to the hospital for. We were at a loss – feeling defeated, and feeling angry that this was our life…STILL.

Psalm 130 talks about waiting for the Lord. I have been clinging to this Psalm – especially these two parts in particular:

1 Out of the depths I cry to you, O LORD!
2 O Lord, hear my voice! Let your ears be attentive to the voice of my pleas for mercy!

5 I wait for the LORD, my soul waits, and in his word I hope;
6 my soul waits for the Lord more than watchmen for the morning, more than watchmen for the morning.

The past couple of months, I have identified with the first part – I have felt like I am crying out from the depths of me – begging for God to hear my voice. And for the past couple of months I’ve also had to choose to wait for the Lord. But I don’t really know what I am waiting for.

Maybe it’s a renewed peace. Maybe it’s a deeper trust in Him. Maybe it’s a better understanding of finding joy in the midst of pain.

Because with every seizure and odd situation that comes our way, I am reminded that my only HOPE is in Jesus. Our days are as different as night and day. Hope can be having an amazing day, followed by a scary night, so putting my hope in her health only leads me to feel discouraged.

But like the watchman who waits for the Lord like one who is waiting for the morning sun to show its face, this Psalm encourages me to do the same. Wait.

For the only one who can give us true peace.

For the only one who knows what tomorrow brings.

For the only one that is sovereign over every single detail.

For those of you who are walking with us and praying for us regularly… THANK YOU! Please don’t stop. Here are a few requests we’d ask you to pray for with us:

1. Seizures: they continue to fluctuate and we are continually tweaking medications and her diet. We had a good run of a couple of weeks where she was having a low number of seizures a day, but they’ve gone back up again and we’re not sure what has caused this increase (no sickness – teething maybe?). We know that fluctuations in seizure control can be considered “normal” for her, but we’re praying that we find an effective concoction of medication that works for her.

2. Her muscle tone: she is working hard to gain stronger muscle tone, but this is no easy task. This isn’t just so that she can hold her head up, but is actually helpful for her breathing. The less pressure she has on her body/chest the easier it is for her to breathe. Her scoliosis makes it difficult for her to sit so we’re working at helping her the best ways we can with daily exercises and being aware of how she is positioned.

3. Lawren and I: we need strength. We’re really tired – more so mentally drained than physically BUT as Hope gets bigger I’m finding it harder to carry and lift her.

Thank you guys, from the bottom of our hearts. We’re grateful for each and every one of you!

4:08

4:08pm is when it started. Another seizure. We were upstairs reading stories in her room. We were clapping and singing (well, I was!) and then her face went red and she got very still, and it started.

This is nothing new. You’d think almost a year in I’d be a pro at handling each and every seizure – but I still have my days. Here’s the thing. She’s been doing well the last week or so. About 4-5 spasms in a 24 hour period, being awake a ton, looking a bit more alert – and even with having her first cold, her seizures have been pretty stable. But it’s like I’m worse when she is doing better. It’s difficult for me to enjoy these seizure decreased days. I try really hard – but it’s like I’m just waiting for it to get bad again.

I took her and put her in my lap like I always do. I started to pat her bum softly, rub my fingers through her hair and started speaking out Psalm 46. This is a psalm that I have always loved, and memorized a couple of years ago. My Grade 1/2 class I taught even memorized it for Bible class. Often when I’m in a difficult situation I will just recite it over and over again.

I had read through it about 2 times and her seizure was still going. I was starting to get a bit frustrated.

“God, don’t you hear me speaking words from Your Word?!”

I guess my understanding of God still needs work. It’s like I think He is going to do what I want because I am acting “holier” or something by reciting scripture. But I know it doesn’t work that way. Speaking those words wouldn’t be the magical remedy to stop her seizure, but they would be the words I needed to heal and strengthen my heart and mind.

So I kept repeating the psalm, and with each word my mind was taken off of what I saw right in front of me – a seizing baby – and turned to Who was in control and in the midst of that moment, and all moments – even though it was a moment I really didn’t like.

God is our refuge and strength, a very present help in times of trouble. Therefore, we will not fear though the earth gives way; though the mountains be moved into the heart of the sea; though it’s waters roar and foam, through the mountains tremble at its swelling.

Those words made me picture Hope and I in that moment, totally protected by a God who is in control over every raging sea. I pictured us in the midst of a crazy storm, being safe under a refuge – that being God.

There is a river whose streams make glad the city of God. The holy habitation of the most high. God is in the midst of her, she shall not be moved. God will help her when morning dawns. The nations rage, the kingdoms totter, He utters His voice, the earth melts. The Lord of hosts is with us, the God of Jacob is our fortress.

This same God that I cry out to each day, is so powerful that at the sound of His voice, things happen.

Come, behold the works of the Lord. How he has brought desolations on the earth. He makes wars cease to the ends of the earth. He breaks the bow and shatters the spear, he burns the chariots with fire.

I started to think about what He’s done for me, for us, for our family in the past. How he’s provided for us and taken care of us in the midst of uncertainty. My dad’s cancer, my various travels, Hope’s diagnosis. He may not have done things the way I have wanted, but He’s always been faithful – always provided, never left us to fend for ourselves.

Be still and know that I am God. I will be exalted among the nations, I will be exalted in all the earth. The Lord of hosts is with us, the God of Jacob is our fortress.

Be still. My heart never feels still. My mind never feels still. But here is a loving command to stop my fearful unrest and choose to trust that He is God over everything – which means He knows the intricate details of my current situation in and out.

Her seizure ended, she fell asleep in my arms, and I sat there crying because a shift had been made in my heart. It wasn’t about asking Him to stop this particular seizure and getting frustrated when He didn’t at that exact moment, but instead it was about me resetting my heart and mind and reminding myself of who He is. Plain and simple.

When we discipline ourselves to focus on Him, instead of the situation before us (which is so hard, I am NOT very good at it at all!) our hearts and minds do make a shift. It’s like we hand over this situation that we have no control over, and say ‘ok God. I know you are powerful and there is purpose to everything – even in my pain – so I will trust you in the midst of it’.

And it’s like you are very slowly opening up your hands that you have clenched so tightly – because you are holding onto everything that is happening to you – and you say ‘here God, take it. I’m not strong enough to carry it – but You are’. The more we do it, the easier it will become to trust. Corrie Ten Boom said it perfectly:

“Never be afraid to trust an unknown future to a known God”.

I hope we can all find rest in who He is today, even in the midst of our pain.

What pushes you?

A couple of years ago I lived in Zambia alone. I wouldn’t consider myself a daredevil, but I did a lot of things without ever letting fear rule me. I survived living in a house alone with power outages making everything pitch black, I would sit in busy airports in the middle of the night because of delayed flights, I would drive all over the country. One time I had a lady whip mangoes at my car because I pulled into the wrong driveway. One time my friends and I were surrounded by a mob during an election. One time my friend and I had to book it out of a muddy parking spot that my truck was stuck in because we were being told we owed money (when we didn’t) – I couldn’t get the truck up the little hill, and the wheels were spinning, all the while men where banging on the windows. I somehow got out without running anyone over, and we laughed the whole way home. There were so many other memories, and yes, at times I was afraid for sure – but for the most part, it was an adventure, and I loved it.

But then, I have a baby, and it became the scariest thing I’ve ever done in my life.

My mind has been all over the place lately. So many thoughts, but all jumbled in my head. I feel like I have turned a corner in the past little while. Although life is difficult, I really do feel like I have come to a point of acceptance, and with that new found acceptance I feel a new found peace.

Hope is very close to being a year old, and I have spent the majority of the year living in fear. People tell me all the time that my fear is valid, that our life is hard and no wonder I feel that way – but, I don’t want fear to rule my life. Although I am feeling more accepting of things, fear does creep in. I don’t know if it will ever go away, but I am enjoying the fact that I am not overtaken by it most days.

The Bible talks about a peace that transcends all understanding, and that has been on my mind a lot – because it’s only God who can bring us peace in the midst of a scary situation and broken life. That is peace nothing in this world can bring us – which is why it transcends all understanding. It doesn’t make sense that I should be at peace when our life looks the way it does.

But hold on a second. Before you think I’m some super spiritual person who has figured everything out, let me tell you that I have already spent parts of the night and this morning Googling different “things” that I am afraid Hope has. And being wracked with fear. And feeling like a weight is on my chest, and all I want to do is hide under my covers. “But wait, I thought you turned a corner?” you say.

Maybe picture me crawling around that corner. At turtle speed. But I’m getting there. My biggest thing I have learned is to let my fear push me to God like never before. Yes it sucks to feel afraid and anxious, but I am slowly learning what it means to surrender our situation over and over again. Charles Spurgeon has a quote that I love, and I remembered thinking about it a lot when I was in Zambia when things would bug me or get me down.

I’ve learned to kiss the wave that throws me against the Rock of Ages.

Now when I think of that quote, it reminds me that the difficult situations that have been put in my life are what push me to God. And without those scary waves, I don’t know if my eyes would be as fixated on Him.

So my question to you is, what is pushing you? Not to have a better life or marriage or job or whatever – all those are good things, but having a relationship with God is better. For me, it is fear. I have to make a conscious effort to stop being afraid – stop googling – stop worrying – and use that time to pray and spend time with God, asking for help and learning more and more about His nature.

Jeremiah 17:7-8

“Blessed is the man who trusts in the Lord, whose trust is the Lord. He is like a tree planted by streams of water, that sends out its roots by the stream, and does not fear when heat comes, for its leaves remain green, and is not anxious in the year of drought, for it does not cease to bear fruit”

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 😉 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.

“What 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 🙂