Labour

During my pregnancy I was always a little worried about the delivery. I don't have very much lower body strength - would I be able to do it? I was told that women who are paralyzed can deliver naturally, and it is the uterus does most of the work. My obstetrician highly recommended that I have an epidural during labour, because she didn't want me to become overly exhausted during the labour and then have no energy left at the end when it was time to push. The epidural would allow me to relax (somewhat). So, I had an anesthesia consultation where we talked about my condition and how that would affect the epidural. I was told I would probably have the epidural put in earlier than most women, because they wanted it to take effect before I was too far into labour. That was all fine with me. I was happy to do whatever the doctors recommended; they are the experts, not me, and all I wanted was to get my baby out safely. I was considered 'high-risk,' after all.
As with many first babies, I was late. The doctors didn't want me to go too far overdue, and so I was induced at 41 weeks. The induction began at about 10:15 am. Things progressed quite slowly, and so the oxytocin kept increasing. Throughout the day we had been asking about the epidural - when would it come? They kept saying someone from anesthesia would come to talk to me. We just kept waiting. By about 8 pm I was only 4 cm dilated. I felt like I had been there forever, but the nurse kept saying I still had a long ways to go. Around this time the pain really set in. I just kept trying to push it off though, knowing that the epidural was coming. When anesthesia finally decided that they were ready to give me the epidural, at around 9:30 pm, they wanted to talk it over because they were concerned about my condition. I appreciate that they want to be sure I am safe and they were doing the right thing, but we had already had a consultation with them, they knew I was coming in for an induction that day, and I had been there since 8 am. We were starting to get pretty antsy, but to be honest, all I could really focus on was the contractions. They had started to move so close together that I wasn't getting a break in between. The hospital also had a rule where they only check your progress every 4 hours once the water has broken (mine was broken earlier in the day by a doctor to try to start labour), because of risk of infection. And because things during the day had moved so slowly, the nurses kept telling me to just relax, I had a long way to go and should just  'breath it off'. I started to feel very scared because I was in so much pain and, apparently, I was no where near the end. I just kept doing my best to keep it all in and not complain too much, I needed to save that for a few hours later. But really, I couldn't imagine pain any worse.
It was at about 10 pm, 2 hours into 'real labour' that I couldn't take the pain and told the nurse that my baby must be coming. She didn't really believe me but agreed to get a doctor to check my progress. Sure enough, it was time. They said there was no time for an epidural. By 10:30 pm I was pushing, and my little man arrived safely at 10:40 pm.
And so, even without an epidural (without any kind of pain management at all, actually, since we were relying on the epidural), I did it. My weak, can-barely-walk-100-metres body managed an amazing feat. My disability really seemed to have very little effect on the delivery. I wasn't able to move around around too much during the labour, but overall really it all was pretty smooth. Each woman will have a different experience, and disabilities bring additional challenges, but I am amazed at the perfect design of pregnancy and childbirth. I am so thankful that God has given me the opportunity to experience it and blessed me with an amazing little boy.

Pregnancy and HSP

HSP is a pretty rare disorder, and it is seems especially rare for symptoms to appear in your early 20's. And so, I don't expect this post to reach a very large audience, but if anyone out there is wondering about pregnancy and HSP, I would be happy for them to read about my experience.

And here's my disclaimer: I'm not saying go ahead and get pregnant. HSP can appear and act differently in different people, and what I experienced may not be the same for someone else. So talk to you doctor about whether or not it might be right for you.

Before I became pregnant, I was told that I would likely have to be in a wheelchair by the end of the pregnancy. I was happy to do whatever was needed, but I didn't particularly want to have to move to a wheelchair. So obviously, my main concern was how would my already weak legs and poor balance hold up to a major change in my weight. I was extremely fortunate, and really it wasn't too bad. I gained about 40 pounds by then end, which is a bit high, but I was considered 'underweight' before I became pregnant so it's actually not that much. I really didn't find I had much trouble with the extra weight until later in my third trimester. I found I had a lot harder time getting up out of chairs, and especially up off of the ground. But as far as balance went for walking, if I had my cane I was pretty much the same as before. I did try to be extra careful though, because I really didn't want to have a bad fall.

The really amazing thing though, was that I found my legs actually seemed to work better. I often have 'bad' and 'good' leg days, where my legs sometimes feel like they will barely move, and others where everything isn't so bad. But during my pregnancy, I very rarely had 'bad' leg days. I really can't explain what happened, but for some reason walking was just a little bit easier. I remember my husband making comments several times about how I was walking so well, and he even noticed that I wasn't having many 'bad' days. That is pretty good considering I expected things to be worse. My guess is that perhaps the relaxin hormone, which is much higher during pregnancy, actually relaxed my leg muscles, reducing the stiffness. But I really don't know. It was a bit of a miracle though, that when I really really needed it, my legs were just a tad better for me.

Another thing I had to consider during pregnancy was what medicines and supplements to take. I decided to stop taking all of my HSP related things, because so little research has been done with them that I just figured it wasn't worth it, even though the suspected risk is extremely low. So, that meant stopping Baclofen. I had been on a pretty low dose, so I didn't find too much of an effect coming off of it. I also took extra supplements - normally my doctor recommends pregnant women take 1 mg of folic acid, but she suggested I take 4 mg because of my HSP.

Overall, I was really blessed throughout the pregnancy. I can't believe how well it went. I was seen at a high risk pregnancy clinic in a city about an hour away, but because everything went just fine, they have recommended that next time I can go to a normal clinic in my town. So, while HSP does add some extra difficulties to pregnancy, it is certainly manageable. And now it's all over and I have the perfect little boy - absolutely worth it!

Back again

What a whirlwind. I took a little hiatus here while Ben and I got used to both working full-time jobs. It isn't the easiest because of some of the other commitments we have going on, but we make it work. Working at the same place really helped. We also did our best to take advantage of the last little bit of 'normal' life we will have for a long, long time. Normal now means something different to us, and includes waking up several times in the middle of the night, making all sorts of funny faces, and having very little 'us' time. But we are so in love. Our little man arrived at the beginning of January and what a joy he is. We are thrilled to be parents and are having the most amazing time. We even wonder why we didn't do this sooner! There are certainly tough times, but really, it hasn't been as hard as we expected! Everyone had us prepared for the worst I suppose. Probably a big part of what makes things easier is the huge support we have from friends and family. We are blessed.

I've been wondering what to do with this blog. I am not great at keeping it up, but I think I'll keep updating when I have the chance. I hope that I can share some of the ways I deal with having a disability, and that someone will find encouragement knowing that they aren't the only one facing difficulties. I'd especially love to encourage other moms - we face special challenges, but through those challenges I think we are blessed with the chance to be amazing role models for our kiddos.

Indescribable joy

Life has been moving quickly for me this summer. Ben and I have been enjoying working full-time (together!) and not having to worry about homework! We have both been through long academic journeys and now it is time for a new chapter. Work has been fulfilling - knowing I am contributing to something and making an impact, even if I am only a small part of a bigger team and bigger company. I like being able to say "I designed that!" I just can't believe how blessed I have been to be in this position at a great company. And to have my bestest friend a few desks away blows my mind. We would have never guessed we would be at the same company. But here we are!
And that is not even the most wonderful part about life right now! Even better, a little life is forming inside of me, our little treasure. So many of my thoughts and emotions are centred around this precious life and we haven't even truly met! Unfortunately, the physical reminders of pregnancy are not always pleasant. I almost constantly have an upset stomach and dizziness and fainting has been a problem. I've also found my legs feel "heavier". But this is minor compared to what some women face. Here's hoping this will be the worst of it. I have no doubt all of this will be worth it though.
I'm in love.

Oh sigh.

Last week I had a fall. I was in the parking lot at work going to my car and I tripped. I don't even remember really how it all happened, just that I ended up on the ground. I had my cane in one hand, so I couldn't actually get that hand down to stop myself. So I hit my chin pretty bad. I was driving home for lunch anyway, so I picked myself (which took a while - I used my cane in one hand and my car door handle in the other) and got in the car. I had a toque in the front seat, so I grabbed it and used it to stop blood from dripping on me, and drove home! Ben was at home, and so he helped me clean up. I thought I was fine, but he was sure I should go to the clinic. It didn't actually hurt that bad, it was just I had a big hole in my chin. So, I felt bad for not going back to work right away, but we thought it was best to see a doctor. We went to the clinic and got checked out and they were going to put stitches in it but I asked for glue instead. I've never had stitches - and for some reason I really am scared of them. So I got glued up, got a tetanus shot, and went back to work!
This is my first big fall. I've tripped before but just got a scrape on my knee. I'm scared about where things are going. I really can't be falling like this...but I really don't think I'm at the point where I should be using a walker. I do have an appointment on Monday with a doctor who will assess my ability and try to determine what the best assisstive devices are. I'm really looking forward to her advice.
So, life goes on! My chin still isn't really healed, but it is much better. And this week Ben started work at the same place I do and it has been amazing. I never get tired of spending time with him. He is such a support. And we get to plays games at lunch!
God has been good to me.

Training Wheels

Recently I've had the urge to ride my bike. It must be spring. I think it would be a great activity for me to get out and enjoy the sunshine. Problem is, I haven't ridden a bike in a long time. So, turns out, it's not really so hard. There are a couple problems though. First, I can't start - I can't pull my legs up on to the pedals (without using my arms). So what I do is I pull one leg up onto a pedal, and then I'm stuck. Normally I would just push off with that one foot and then away you go, just put the other leg on the other pedal. But it's not so easy! So, I need something to stabilize the bike while I use my arms to position my legs on the pedals, and then I can get going. My husband is pretty good at stabilizing the bike for me...but that's not very practical! So, I bought 'adult training wheels'. Yep, I have training wheels on my bike. I have to admit, it is pretty embarrassing. But, worth it I hope. I lean my bike onto one of the training wheels and then I can get my legs ready and push off. So, training wheels, good. BUT, they are super annoying when I am trying to ride and I lean a little bit to either direction. The training wheels hit the ground and then it's all bumpy (riding on gravel) and it makes it harder to steer. So, I am hoping that we can bring the wheels up even higher. That way they will be less likely to hit the ground when riding. It does mean that the bike will be on a big angle when I'm trying to get on. Also, I definitely need a new seat. I guess I can't 'lift' myself off the seat properly while riding and all of my weight goes right on the seat. Not comfortable! So I think a 'comfort' seat might help make it a bit more enjoyable. Regardless, I am so excited to get out there and go for bike rides with my family! And hopefully not too many 7-year-old kids will ride by and make fun of my training wheels.

Enjoy today!

Nothing that is broken cannot be made new

He sees you down by the water line
Knows what you're thinking all the time
He sees the rising of the waves
When the tide starts rolling in
He lets you know it's gonna be okay

He sees you dancing in the moonlight
His arms around you hold ya tight
And if those clouds should start to break
He'll be standing out in the rain with you
And though it's hard to believe
He believes in you

God is watching over you
As always
You are loved
Whatever you go through
He's right beside you
God is watching over you
As always
And if you think He'll ever leave you
You better think again

Painted in the sky a rainbow to remind you
Nothing that is broken
Cannot be made new 
He knows when ya feel so far away
He's gonna keep the night light on
He's waiting there to receive you

You are loved
Wherever you go

Through fire, through wind and through rain
Yesterday, today and tomorrow the same
Nothing here can take this love
Nothing you could do will break this love
Climb a tree, gonna reach so high
Swing low sweet chariot
It's time to fly
He sees you down by the water line

Phil Joel - God is Watching Over You

Work...

is awesome. I get outside every day (something I didn't do when I worked from home), spend time with great team members, and get to really use my brain. I am doing stuff that I find fascinating - and I get to do it in a very accessible building. I can't believe it's already been two weeks since I started, the days are flying by!

One big thing that I have overcome is accepting a cane. I brought my cane to my first day of work. I had never used it before, but I bought a while ago so that when the time came that I needed it, I would have it available. I got the official tour and decided I should take my cane. It was a little weird at first, but I was so glad I had it with me. It is a big building to walk around, and my legs were extra shaky with first-day-of-work-nerves. And now people just know that I have a mobility problem and use a cane. I don't have to explain myself, or try to walk as normal as possible, or be afraid of walking somewhere because it is a bad day and I don't want to trip. Now I am trying to figure out a balance, when to use my cane, and when not to. I want to do my best to walk without it when I can, because I don't want to start relying on the cane. But I also don't want to fall at work. I have found, though, that since starting work my legs have been so much better. I think a big part of it is that I am using them more. When I was working from home it was so easy to just sit on my butt all day and just walk the few meters from the living room to the kitchen. I feel like I have renewed energy and strength. I also most certainly have a renewed sense of confidence. I am so blessed to be able to work!

AND - as if things couldn't get any better, Ben had an interview where I work! We haven't got an offer letter yet, but we have been told it is coming. We won't be on the same team, but our desks will be really close to each other. We can have lunch together and take Wii breaks (the company has a games room). How perfect is this?

We've been asking a lot of questions since we found out there was something wrong with me. Mostly WHY? But recently God has really been holding things together for us. I feel like I haven't been this happy in a long time (not that I've been particularly sad, but living with a disability can really be a constant downer). So I still would love to have working legs, but I know that God is blessing us in so many other ways.