I'm a bad mom.

Aaron came home to me crying.. Yet again. He asked me about 40 times what was wrong (Classic Kaiti). And on the 41st time all I could say was "I'm a bad mom." And then I burst back into tears. It was a really hard day. It started off with Layla thinking 4am is when we wake up for the day. I tried and tried to get her back down to sleep but she wouldn't. The only nap she took all day was when we went for an hour and a half walk and she slept most of it in her stroller. So we both started the day with less than 5 hours sleep. Other than that walk I spent the rest of the day rocking her and feeding her. She would not let me put her down for more than one second. Even to go to the bathroom she would just cry and then that cry turns into strong wheezing and possibly choking if I don't pick her up in time. I hate that choking is now happening multiple times a day. Her whole body convulses and it's hard for her to get the cough out. I just put her over my shoulder, start hitting her back and pray. Then usually a chunk of spit comes out. It scares me so much. Especially being alone with no vehicle. I guess if she couldn't get it out I'd just have to call 911 which is a scary thought. She can only last so long if she physically can't breathe. Because her suction is so weak I have to hold her head to me as she feeds. So unfortunately even though feeding her is giving my feet a rest because I get to sit, it's still physically demanding to get her fed. Needless to say I had an extra hard day which made my mind go to places I don't want it to. I actually had the thought that if my time is limited with my child why is that time so hard? She should just go now. What's the difference between 1 and 2 years old? What is her quality of life difference? It'll only get more painful for her. We just have to slowly watch her die? It makes me feel sick to see myself write that but I went there, I go there sometimes. And that makes me feel like I'm a horrible mom. Aaron gave me time to have a hot, relaxing bath to unwind and process my thoughts. Laying in the tub I tried to tell myself that it is okay to have these thoughts. That this is actually a stage of grief. Just because someone is dying doesn't mean they will be an angelic, perfect person that you can't get frustrated with. Especially not a baby. Layla is still a baby. And in fact an extra special baby. With special needs. I do believe that I have an extra dose of patience and strength with her because of the fatality but it is getting harder all the time. 

The countdown is on for next Wednesday. June 3rd. Both sides of our family have this day etched in their minds. I don't think I will ever forget this date. There's a lot riding on this appointment. We meet with the neurologist from the children's hospital. He's our foot in the door to the rest of the specialists we will likely have to deal with to help Layla. I have my list of questions ready. Hopefully he has his ready as well. I'm praying he is really helpful and informative. We are going to push for the feeding tube. If it's inevitable than I'd rather get it done asap. It's just too hard for me to be solely responsible for her life.. Trying to get her to feed when I know it's hard for her and messy and she cries half the time. Plus both Aaron and I think she still hasn't put on any weight. She seems skinnier. She's 9 months old and survives solely off breastmilk. I know that's not unheard of but I feel like this is our next step. With her poor swallowing half of it just ends up on me and a receiving blanket. I think that maybe a tube would help her feel more full so I wouldn't have to feed her as often, would help her put on weight and give me opportunities to spend a couple hours apart to go to the movies or out for dinner or a drink. Something.. Anything. That would give me the rest to have more strength for her! 

This girl should win an award for the best pout face. 

Results

When you work hard, you expect results or a reward. If you lift weights for 6 months you hope to see muscle definition. If you study for hours and hours you hope for a good test mark. Layla is a lot of work. She wants someone to hold her all the time, she cries a lot. And we're okay with that. We've made it work in our lives. It often makes us laugh... On good days. But I wish we would get the reward. I wish we would see her grow and flourish into a strong, courageous woman. I've had people tell me that since Layla's always been pretty stubborn and needy that she is going to have so much personality as she grows, she's going to be such a go getter as an adult. I get so mad when I hear these things, that we're not going to see this. It's not fair. It's not fair for Layla! I just love her so much and it breaks my heart to come to this realization. 

Now that we've let the diagnosis sink in more I've had more time to think about others and how they are feeling. I don't like that people walk on eggshells around us. I think they are afraid to show us their emotions. But when they don't then I feel like they don't really care (which I know they do but..) and I'm nervous that people don't have the most accurate information if they haven't heard it through us. I know it's not the happiest of topics but I find it therapeutic to talk about it outloud with other people. I actually like when people ask questions. Is that strange? Maybe I need an actual therapist. That's something that's been so nice about having my family in town the last week.. Lots of talking time! And since it's their niece they are genuinely interested in her and our wellbeing. 

This is Layla and her newest cousin! 

Time is slipping away.

A great couple days with my brother and his family so far. Their almost 4 year old has an insane amount of energy but he's also happy to watch a TV show and relax while we all chat. It's amazing to see the growth physically and personality development that has happened since I last saw him in December. Especially in his vocabulary. We are not used to having a sponge in the house so we keep getting in trouble for saying bad words.. Whoops! This boy has a special place in my heart. He makes me smile. He's the perfect size now to play with Charles, our English bulldog. He plays fetch with him and follows him around the yard. It's pretty cute. Just once did he end up crying when he was trying to kiss Charles goodnight but Charles jumped into him. The newest addition is so sweet. Only four weeks old and you can tell he has such a different look to his brother but yet there are certain looks he makes that are the same. He has the "little old man" look. Not sure about personality differences yet. He makes little goat noises for a whine but doesn't really cry.

In comparison to Layla you can feel the strength in his grip, the kicking of his feet and the strength in his suck that she never had. Watching him hold his head up off his mom's chest at this age feels way too young for me but only because I never knew what "normal" was. 

It's funny watching my brother and sis-in-law rock Layla. They've got it pretty down where she'll calm down in their arms most of the time, which has been a great help for me. But after my brother's first half hour he was complaining about his arms being sore. So my sister tried and same thing. Obviously my arms have developed certain muscles that I can rock her for extended periods of time. I'm not saying I'm the hulk or anything. I definitely have my limits and have hurt neck, arms and back all the time. Though for her age she could weigh quite a bit more than she does.. Thank goodness she doesn't. It makes me think about what the coming months will bring. If the only way to calm her is to rock and she gets bigger and longer.. We're going to need to find some contraption to help. We saw online someone built their child (with SMA) a swing that had a flat bed for them to lay on. I think we are going to need to copy this idea soon. 

This morning I tried taking Layla in the bath with me instead of her infant tub that she is too long for. Didn't go too well. She gets really upset and afraid when she doesn't feel fully supported by you. I'm not sure what that is. I was hoping she'd like the feeling of being weightless and I could let her sort of float around the tub. Good practice for if we start hydrotherapy. Didn't work as I planned, this time anyways.

Well, it's beautiful weather and we're off to a retro car festival today. Should be a good time with the gang. I miss having these guys around all the time. 

Ohana means family.

I hope I don't seem like too much of a pessimist. Usually i'm quite a glass-half-full kind of gal. But I guess using this blog as an outlet for the negative energy is kind of the purpose. I get to say the thoughts i'm thinking but can't say to others.. or they just don't understand or want to engage with it. A lot of it is just the facts. They are negative, but they are the facts. I know other people could've responded way worse than Aaron and I have so far. That doesn't mean we don't feel sick to our stomaches throughout the day, that doesn't mean we don't cry quite often, it doesn't mean we don't wish and pray with all our heart that this wasn't happening to our baby girl but it means that we have to be realistic. Layla's future is not that bright.. which means, our future is not that bright. But if the worst of the worst happens, life will still move on. It has to. People go through the worst of the worst every day and even more terrible things happen. 
Anyways.. Today I'm excited! We have family flying in from BC for just shy of a week. My brother, his lovely wife and two kids. We are very close and haven't seen each other for a few months. In those few months they have had a new baby boy! He is one month old today and I can't wait to squish his little newborn cheeks. It will be interesting to try and compare what Layla was like at that age, if I can remember. Time flies. I remember it being pretty easy in comparison to now. Mostly sleep, eat and poop. The hardest part was the frequent night wakings for feeding. It will be a nice distraction having them for six days. Lots of walks, talks, food and drinks are on the agenda.
I can't even explain how much I miss close family and friends these days. We have some of Aaron's family near us in Ontario right now, who are awesome, but we've only been spending more time with them since September. Before that our lives were fully in BC. The people that we are closer with are there.. And it sucks that most of them don't really know our daughter very well, if at all.  We have been back twice since the move, plus the Mexico trip with my family but that doesn't feel like enough. They don't know her personality and quirks the way we do. Skype is not enough. We want to talk to our doctors about moving back in August. We both want to but most of all we want what is best for Layla. There will have to be a completely seamless transition with doctors and specialists. I don't want to be put on any multiple month waiting lists. If they say anything about her breathing and going on planes or traveling long distances not being a good idea then we will stay. 

Being a mom is WAY more than a full time job.

Yesterday morning we took Layla to see the lovely ladies at the Children's Treatment Centre.. There we saw our physio therapist as well as our occupational therapist. Now that we have more confirmation on type 1 Spinal Muscular Atrophy (still not 100% but about 90%), they have decided to change directions. Instead of working on exercises to develop muscles we need to work on exercises to maintain movement and range of motion. Apparently with SMA (or with anyone really) if the muscles are not used they will start to get stiff and stuck in the one position and then when you try to move them it can be painful. So when she's laying on the couch or wherever i'm just pushing her legs in and out, moving them around, and same with her arms. We have been trying really hard to get Layla ok with looking right because she only wants to look left and already has tightness when we try and get her to turn her head in the other direction. We had her playing with some awesome toys designed for special needs children which I fell in love with and think may be something Layla could be interested in. To purchase online they are absolutely ridiculously priced but they are going to lend us some next time we come hopefully. Next they want to look into starting some hydrotherapy which I think would be really neat. Being in the water will make her feel weightless. At the centre they have a pool that's bath tub warm so I think she would like it.
Our occupational therapist decided it's best not to worry about trying to get Layla to eat solid food or take the bottle because at this point the feeding tube is pretty inevitable from what we've been told. Describing my daily routine with Layla got her quite concerned that I may need some help. She is going to try and set us up with a social worker to educate us on available resources there might be for us. Praying there are some good ones. 

I honestly feel like such a bad mom sometimes. Like I am not the right person for this job. I just can't do it. Spending hours upon hours every day standing and rocking Layla. She won't even allow me to sit and rock her. My back and arms and feet all hurt. Even feeding her is hard work because her latch has gotten weaker and I think she can only swallow so much at a time so there's a lot of overflowing milk. I have to hold her head steady with one hand and use the other hand or if positioned correctly a leg to help her breastfeed. If I don't hold her close she will just come off. Also, I just feel like she cries so much these days. If my time is limited with her I want to really enjoy them.. But often i'm not.. How awful am I...? I do love her with all my heart but it's hard.. Like really hard. My husband would kill me for saying this but maybe I'm not cut out to be a mom? These are just a couple of the thoughts I have throughout my day. *sigh

As for now it seems like everyone is waiting on our neurologist appointment to see how we will move forward. And I am right there with them. This guy better live up to our expectations. We want answers and more certainty! Thank goodness it's only two weeks away now. I'm literally counting down.

Every breath is a gift.

In the last couple weeks I've really begun to notice Layla's breathing going downhill. A lot more choking, a lot more deep, wheezy, painful sounding breaths. It scares me. I'm not sure if this is me just being a paranoid mom or actually for real... I'm pretty sure it's real because others have noticed as well. Every time I feel crazy I slyly check with others to see if it's in my head. Or with my husband I straight up ask him if I'm crazy. His response changes depending on the mood. 

I'm becoming quite nimble and quick at hopping to the back seat when I hear her choke as we drive.. Praying no cop sees me do this. We turned up her video monitor to full blast to be able to hear even the sounds of her snore. I hate that I've become so paranoid but I have to be. She needs me to be. Her life could depend on it. 

*Moments where Layla cuddles (sort of) like this are so rare! She normally is not into these types of positions so I had to capture it. 

Comparison is the thief of joy.

One of the biggest struggles I've had with Layla is comparison. Many people, including our doctor suggested that we try going to a local mom group. Um... nope. The idea of sitting around, chatting with other moms and having them ask me why my daughter isn't doing certain things, or not asking at all, and me just sitting there watching their kids hold their neck up, sit, stand, crawl, walk, jump, climb, fall, talk, grab, hug, eat... does not sound at all appealing to me. It's hard enough being around friends and family with kids, seeing their photos and videos on Facebook and not comparing those to our beautiful daughter. Just yesterday I was online and saw a picture of a friend's baby in the jolly jumper at 4 months old with a big old grin on his face. Normally I would just think about how adorable he was but at this particular moment I just burst into tears with the thought that my daughter will never do that. Watching babies in a Jolly Jumper has got to be one of my favourite things to watch. Their eyes get really big with each jump, the excited noises they make every time they jump off the floor.. At this point at least we know that there is actually a reason that Layla is not doing these things.
In March my brother got married in Mexico! I was really looking forward to this two week trip, not only for the wedding but also to just see a bunch of my family because I've only had limited visits this year as we moved across the country (one week after Layla was born.. crazy right!?) for Aaron's schooling. At this point Layla was just 6 months old and no tests or diagnosis' had been given. I planned for months ahead of time that my goal was to have her able to sit up before we went, and really wanted her to be taking a bottle or eating solids so that I would have some opportunities to leave her with others while I lay poolside.. or whatever (i'm so selfish, I know). I worked on these things daily with no improvement. It was really disappointing. But off to Mexico the two of us went. In casual conversation I brought up that I was worried about Layla but most people shrugged it off... What did I expect though? Someone to say "Yeah, I think somethings wrong with your daughter, you should get her checked out." haha And at 6 months I don't think it's unheard of for children to not sit up. There were two other babies at the wedding a bit younger than Layla. Honestly, they seemed like a lot less work than my darling.. they sat up, were entertained by toys, were pretty good with others holding them. While my daughter, most people don't have the patience for.. she takes a special type of rocking. She likes to feel like she's basically sprawled out with limbs completely relaxed and not really being held.. but still rocked back and forth. And don't even think about sitting down! Even in this position she might let out a couple cranky, sassy cries but if you have the position and rock right she'll give you a big smile pretty quick. That's where the patience comes in. Love her.
Our physio therapist has given us a list of exercises for us to work on. The hard thing for me is that she hates them. When my husband is gone at school for the day I have a rotation of things to do for Layla. In the morning I try and start off the day with a couple of her exercises because I know she'll get upset but when she's had enough, I can just breastfeed her and all will be well. After that feeding, I try and get an exercise video done for myself. This rarely get completed. I'll have her laying on the ground for the first 5-10 minutes which is GREAT and then she'll start crying, so I move her to the swing for a couple minutes, then she'll start crying, so I move her to the couch for a couple minutes then she'll start screaming, so i'll pick her up and rock her and then she'll calm down within a minute. I'll try this cycle a couple times and then just give up.. rocking her it is. Throughout the day I do similar things if I need to quickly make a cup of tea, or scarf down a piece of fruit. She loves her change table.. I think just because she gets really happy when you take her clothes off.. we're praying she grows out of this habit. Basically i'm holding her 75% of the day and the rest is either feeding, trying her exercises, trying to get her to take the bottle or solids (both end with crying) or going for a walk. Needless to say, I get nothing done for the house or myself. The point of that ramble was that even without the exercises she spends a lot of the day upset.. so I keep thinking that if my time with her is limited then I'd rather spend it keeping her happy.. does makes sense? But I keep trying them, maybe not as much as I should be...
It's quite interesting doing my research on children with SMA. I am really intrigued by their stories, how they found out, the process, the appointments etc. I know that our story is and will be unique but it kind of lets me know what to expect. Though Layla has most  of the symptoms one thing that doesn't quite line up for me is that I feel like I keep reading that babies with SMA tend to be more lethargic and quiet as babies and they are really content just laying and watching the world. I don't think that's Layla. She does like to be left alone laying out often, but she will want to know you're right beside her. But she most definitely knows how to use her voice.. she yells like a dinosaur and she cries really intensely to the point where you think she's hyperventilating. She can go from 0 to 100 in a matter of seconds which sometimes makes me think she's just laughing away inside thinking "I got you fooled, I got my way. You picked me up". Love her.

Blogging is cheaper than a shrink.

A thousands thoughts go through my mind in any given moment but over the last 3 weeks I have been having a million thoughts at a time. I spend most of my days alone at my house with my 8 1/2 month old daughter Layla and my english bulldog Charles. Neither of whom can communicate back with me when I try to share my deepest of thoughts. So I thought this morning as I was feeding Layla, maybe I should try creating a blog. I figure it's basically like having a journal except if there happens to be someone out there who would enjoy reading my thoughts they would have access to it. Plus i'm a way faster typer than writer. 

In this blog I want to (mostly) share about my first and only child miss Layla. Layla did not come into this world easy. After getting married on May 19, 2012 my husband, Aaron and I decided that we wanted to try to have kids right away. I always thought that when I would decide to have kids, it would just happen. I never thought we'd have any issues.. but we did. Aaron and I cried many tears together thinking that we would never have children. But that did not stop us from trying every avenue to have our own children before we pursued adoption (even though this is something we said we would want even if we could have our own). On December 23rd, 2013, 18 months and one surgery later, we found out that we were pregnant!! We were over the moon excited. This was the perfect Christmas present. I didn't want to take the test too close to Christmas because I thought I would need at least a day to mourn if we got yet another negative pregnancy test. Less than a week after finding out I started experiencing the lovely morning sickness.. which lasted through the ENTIRE pregnancy! It was truly terrible. I know i'm not alone in that experience but it's the worst. Trying really hard to remind myself daily how hard it was to get pregnant and how badly we wanted this.. I pushed through as much as I could, used many sick days, left work early, and spent most of my free time in bed watching Netflix and napping. So many people told me that if I had this awful pregnancy I was going to have an easy baby. Labour was also awful. That's a huge story in itself but lets just say labour lasted over 24 hours and 12 of those hours involved repeating contraction then puke, contraction then puke..no rest, until the wonderful glory that is called an epidural came. Even though I originally said I didn't want one, I got to the point where it was that or a c-section. So I went with it. 

Layla was born on Aug 27, 2014 at 10:35pm. When Layla was placed skin to skin I was frozen. Totally in shock and awe that I had just done what I did. How does a baby just grow inside us and then we push it out.. I still don't fully understand it. It really is a miracle. The first couple hours of her life felt like a dream, but a dream that i'll never forget (I hope). Layla never cried when she was born.. which I found strange but they said it was ok.. then when they took her to be cleaned up and weighed etc.. my midwife made a comment that she seemed a bit floppy. She asked the pediatrician to come take a look at her. Again they said she was fine. So I never had a second thought about it. 

At around 4 months old I noticed that Layla couldn't hold her neck up like some of her much younger friends. Most people I mentioned it to said I shouldn't be worried, kids develop at their own pace. I started looking online at exercises to do at home that would help her with this. She hated them all, but I continued to try as much as I could. Then one day, I was filling out her baby book and looking at her birth record. I noticed that a box was ticked off that had the word "hypotonia". So of course I did what any concerned mother would do "Googled" it. Found out that it basically means your child is floppy and their muscles haven't developed. I had that flashback to the delivery room and remembered that they mentioned that. My research showed that hypotonia is a symptom of many different things and it was quite overwhelming. 

At Layla's 6 month appointment I brought this worry to my doctor. He said she definitely seemed hypotonic and wanted to send us to a pediatrician. We got in right away and he confirmed hypotonia. The peds doctor sent us to get an abundance of blood work to try and get a diagnosis.. side note: This was the worst experience for a mother. I watched them poke at my daughter in 5 different places for over an hour and I wasn't allowed to hold her, just stroke and kiss her face while she just screamed bloody murder. 45 minutes in I passed out so they had to take me out of the room on a stretcher to check me out.. My poor husband had now two ladies to take care of. The worst part about that was they only got half the blood they wanted! The pediatrician also got us set up with a physical therapist and a occupational therapist right away to help her strengthen her muscles and try to help her learn to eat solids and take a bottle. 

On April 23rd, 2015 we met up with our pediatrician in the hopes for news on the diagnosis. He said that all the bloodwork came back clear, which we thought was good.. but in fact it was not good. He ruled out certain disorders that it may have been and said that based on the symptoms he is feeling pretty confident in a diagnosis of Spinal Muscular Atrophy type 1. He would not give us a 100% diagnosis but gave us a referral to a Neurologist at the Children's hospital who would.  Neither of us had heard of this disorder so I made sure to write it down. (By write it down, I mean put it in a note on my phone) If you've never heard of this before here's a link explaining: 

http://www.medicinenet.com/script/main/art.asp?articlekey=23884

So basically he told us that our daughter's muscles are not developed and they're not going to. That they're just going to get weaker until eventually she will die... most likely before the age of 2. I'm sorry WHAT!!!???? How the heck did we go from our child being a bit weaker and slower than other kids to, she won't survive. This is not at all like he actually told us but you get the gist. 

We both bawled the whole 45 minute drive home. We had both come to terms with the thought that Layla may need to get an assistive device like a walker or wheelchair but the thought of her not being able to experience life was and still is unfathomable. 

The crazy thing is every time I am reminded of this diagnosis and start crying, I look at Layla and see her beautiful smile and realize she has no idea what's going on, she's just living life.