Trust your Gut

If Layla has taught me anything over her short life thus far, it's that I need to trust my gut more. Not just with her health and needs but also my own. 

When I think back to month 3-6 of Layla's life, I'm reminded of when I knew there was something going on and many people told me "She's fine, children just develop at their own pace". Instead of fighting for more answers I started telling myself I was just another paranoid mother. Apparently I thought that others knew my child better than I did. Even on the day we went to the children's hospital (and ended up staying a month) I kept thinking they were going to send us right back home saying it was all in my head. But my original gut feeling was right! Why didn't I listen to it? Where would we be if I had? I know you can't changed the past and it is what it is but I can't help but wonder. 

I would describe myself as a people pleaser. Wanting to keep everyone happy, never disagree or want to give people a reason to be upset with me, if I can at all avoid it. I've lead myself to believe that my opinion doesn't really matter, my wants and needs are not as important as others. In some ways Layla has continued that thought process because with her high needs, mine can get pushed to the side. But in other ways she has helped me make some small strides. Because she is the most important person in the world to me I want to keep her healthy. And in order to keep her healthy I need to keep myself healthy. This is why (not the sole reason, but one of the subconscious ones) I married Aaron. He helps validate my opinions. Shows me my worth. He has no trouble saying what's on his mind and telling people what for. So often, I have to hold him back from his raw honesty. With Layla there will be times we have to say, we can't hang out with friends because one of them has the flu or we can't go for a walk in the cold winter weather. We have to say that because to our precious daughter the flu can be fatal. There will be times when we just have to say no to events because it's just too late and we've had a long hard week full of appointments.  This is so hard for me because I am a social person and want to hang out with everyone but I have to put Layla and my family's needs first. Some people may not understand and again that is OK. I need to trust my gut. 

Speaking with Layla's physio therapist she advised me that any progress we may see with our daughter will be very slow. Don't expect her to start holding her neck up in a day. Give her lots of time, lots of repetitions and there will certainly be many things that she will never do. We need to accept that. It doesn't mean we don't try though. I'm trying to take this advice for myself. I always try and do too much too fast. You know those people who have to get the groceries in the house in one go, even if it means cutting off all circulation in their fingers and dropping apples down the hallway as they come toward the kitchen? Yeah, that's me. Then I wonder why I have headaches and neck aches all the time. Why do I continue to add to the stress of the things I cannot control? My goal is to start doing things slower.. Take deep breaths in between putting groceries away, grab a glass of water and sip on it (not chug), take a moment in the shower to actually feel the warm water beating on my back.. Stop to smell the roses! If I plan to complete tasks in the day but because of a cranky child who wants to be held I do not complete them.. That's OK. Wait till Aaron gets home, wait until tomorrow. Are these things truly a priority right now? 

There was a study done on a group of seniors in nursing homes on regrets they had for their life and the most common answer was "I wish I had worked less, spent more time with my family." I don't think many would say that they wished they had worked more (and harder and faster). It all comes back to those moments. Enjoy every one one of them because no one knows what tomorrow brings. 

Refreshing yourself

This morning I write this on day 4 of being in Kauai, with 2 of my closest girlfriends.. No husband, no Layla. And I got to say it feels good. So good. I thought it would've been a lot harder to be away. I was expecting more stress, worry, anxiety..but it hasn't hit me. Perhaps a large part is that I know she's in wonderful care with the Canuck Place (including nursing around the clock)? I think I was so overdue for some days without responsibility that my mind and body is soaking up every second. Am I counting down till I see my beautiful girl's face tomorrow morning? Yes. Will I become overly emotional when I hold her? Probably. 

This week has just shown me the importance of me time. You know when they do the safety demonstration on an airplane and they tell you to put on your own mask before helping others? I'm starting to understand the reason why. I have been running on fumes the last little while. With 24/7 care there has been limited times for me to just be me. I had forgotten what it's like to laugh so much, have that extra drink, not be paranoid about being in the sun with a pale baby, not wonder where the fridge is, where I'm going to get sterile water, where a comfy flat surface is to give my arms a rest. All the little things that are so important in my everyday life have not been on this trip. No planning involved. Just going with the flow. And does it ever feel good! Hiking, swimming, kayaking, exploring, working out, tanning, eating, drinking, SLEEPING... These are a few of my favourite things about being away childless. Before we had Layla I took those types of things for granted. I had absolutely no idea how much harder it would become. 

Whether you have a stressful work life, stressful mom life or whatever we ALL need breaks, times of refreshment to function at our full capacity. 

Okay, I think I'm ready to go back now. 

My happy place. 

Thoughts

The other day I sat beside Layla's hospital bed while reading through the pamphlet on the Respiratory Syncytial Virus (RSV) injections that she was about to have. One section titled How do I protect my child against RSV? caught my attention. Of course there was cleaning your hands, keeping your child away from people who are sick etc.. but the one that surprised me (I'm not really sure why) was Try to avoid crowded places, such as church, daycare centers, supermarkets and shopping malls during the RSV season from November to April.  My first thought was So are we supposed to just stay in the apartment for 6 months!? Which is not practical at all for us. But it did make me realize I do need to be more cautious. We have advised our family members of the importance for Layla to not be around people who don't have the flu shot, I went out and bought hand sanitizer that I will ask people to use before they hold Layla, I will avoid taking her for walks in the super cold weather and I will do everything in my power not to get sick myself this winter. I don't want to be so paranoid but I have to be. Being cooped up all winter sounds awful though. I like to be on the go, change up the scenery. But then I look down at Layla and study her, studying me and think Gosh I love this girl. I would do anything for her. She is such a fighter. She has made it through so much in her short life so far that we have to keep going. I need to be a fighter for her. However long her life will be, I want to enjoy every moment because once she is gone those moments will be the memories I have. So instead of dwelling on the things she can't do, I'm trying to dwell on the things the can do. Celebrate every kick, punch, giggle, yell and finger squeeze. On the days I try to think positively my heart feels more in love with her (Does that even make sense?). Is it a terrible thing to say I've grown more in love with her over the last month than the rest of her life? It is terrible but it's the truth. When we were told our daughter wouldn't live much longer part of me started to let her go. I didn't want to create more of a bond because that would make it harder when she was gone. Now that the diagnosis is uncertain and she gotten so much healthier I've changed that train of thought.
It's not possible to always feel positive at what life has thrown us. As long as Layla is here I will not live without fear.

Yesterday I sat cradling her thinking: What if Layla did end up just being delayed? What if she was just behind other kids and she eventually catches up? I used to never entertain those thoughts but sometimes I do now. I envision her sitting up, crawling and walking, talking and wrapping her arms around me... *pause* (it's so foreign, I need to take a few minutes to imagine it even as I type).
As I sat there that morning, crying over my daughter, stroking her soft blonde hair I said to her "Let's prove them wrong."

Burden

I notice when people look at Layla. I notice when people try and avoid looking at Layla or look at Layla then avoid looking at me. I hate it so much. I notice the looks when she is feeding in public. I try and cover the site (MicKey) so people don't have to see where the food is actually going inside her. I hate that I feel like I have to do that.. To make people more comfortable. I wish people would see her like I do. I wish they would see her beautiful smile when she hears her dad's voice as he walks through the door. I wish they would see her contagious giggle when Aaron does his obnoxious laugh. I wish they instead of feeling pity would feel like they want to get to know her and us, help us not feel isolated from regular parenthood.  

I went to a moms group last week with my sister in law and her kids. She is one of those wonderful people who actually wants to spend time with my daughter. She's a great aunt. Right away she was holding her and playing with her laying on my coat in the floor. She told me after the group that that day was the first time she really noticed other people's reactions. She said women she knew who normally would come right on over to chat with her, saw Layla and then avoided her. Instead of seeing Layla as the 15 month old that she is, they saw her as different than a regular 15 month old and perhaps didn't know how to have a conversation without addressing the elephant in the room. She said she felt like it opened her eyes a bit to the realization of what we go through in that area. Because to the people that spend a lot of time with us, Layla is just Layla.  

To me, those women don't matter too much. They're not in my circle of influence. I could see them every week for a couple hours if I wanted to commit to the group but In the grand scheme of things their opinion doesn't effect me too much. Unless I'm having one of those emotional days when I experience a situation similar and then I have to have a good cry on the car ride home. Which may or may not have happened that day..   

You want to know what makes me really sad? When my friends do it. When my family does it. When people who's opinion I actually value will avoid holding or talking about her, my heart breaks. Because this too is motherhood like anyone else's journey. I used to imagine what life would be like as my children would age. Would they be athletic, smart, beautiful/handsome, bookworms, artsy, popular etc. What would I do if my son came home crying because he was made fun of on the playground? What would I do if my daughter was broken-hearted because she wasn't good enough to make the school soccer team? With Layla I'm probably never going to be dealing with those exact issues but i'm still dealing with the same feeling of rejection. I just never thought that I would be dealing with it from such a young age. Everyone loves babies, right? 

There was a friend's baby boy who was born 2 1/2 months after our beautiful girl. We spent a lot of time with them over Layla's first year of life. It would absolutely break my heart to watch others seek after holding and playing with him while my child would be the outcast. She was hard to calm down and had a very specific way of rocking, that not many learned. But it could be learned if people took the time.. and I was more than happy to teach (My back and arms could have realllly used the break too!). I craved the feeling that others loved my child. I still do.
At this point in time Layla has calmed down so much (thanks to food and medication) and boy am I ever thankful. I am so thankful to be back in BC where most of our family has been making efforts to learn Layla. To learn her specific rocks, back pats and routine. Some are even taking the time to hang out with her to give us a break! In doing this I hope they too are falling a bit in love (or at least like) with her. I would never want my child to be a burden. 

 My attempt at taking a shower when home alone. Snoopy jazz is where it's at. 

Sweet Dreams

It's actually amazing what a good nights sleep will do. It's amazing how my view of a goodnight sleep has changed. When I was a preteen/teenager I was one of the girls who would actually stay up all night. I remember hearing from someone that if you stayed up for 3 nights straight you were "clinically insane" so of course, I wanted to try it. I only made it one full night and probably half of the second one before I passed out but still.. the fact that I wanted to attempt this shows the strange kid I was. Always up for adventure and a new challenge. Oh how the times have changed. When you have no kids and don't sleep for a night or two there is always a chance to catch up. With an infant or toddler there is no chance for catch up. It is your every day life. Unless you're one of those lucky ones who has kids that sleep 12 hours on a regular bases. I don't like those people.

 Here's how last night's amazing sleep went. Layla started to get overly happy at about 8pm. Tons of smiles and giggles. She usually gets extra happy at night for a bit before it turns into super cranky and then into get this girl to sleep. Last night was no different. I'm always scared to put her to bed too early because I know that means she will be up very early because she doesn't sleep very much. At 9pm we lined up and administered Layla's chloral hydrate, gabapentin, melatonin, and flush syringes. By 9:20pm she was out enough to lay her in her bed. Aaron and I got ready for bed and crawl in by 9:45pm. Layla stirs because she hears us. We were silent and off to dreamland. My alarm went of at 12:00am.. I stumbled out of bed to get Layla's food bag from the fridge, warmed it up, turned on the pump and tried to attach and start it as stealthily as possibly. She woke up briefly but a few shhh's and back pats put her back to sleep fairly quickly. I lay back in bed to get some more shut eye. Aaron's alarm went off at 4:40am, then 4:50am. He leans over and says "I'm going to say goodbye now because I think Layla's still asleep and I don't want to risk waking her up by coming back in right before I leave.".  The front door shut and Aaron was off to work at 5:10am. I close my eyes once again to go back to sleep when I hear Layla making noises. I wasn't sure how much time had actually passed so I looked at the time.. 5:18am.. Ugh. I left Layla in her bed until just before 6:00am. She was switching from whining, to cooing and talking to herself.. I was hoping she'd fall back asleep but that didn't happen. So I moved her to my bed and set ourselves up so I could pat her back in attempt to get some more shut eye. Unfortunately neither of us got back to sleep so we headed out to the living room to start our day. Really, she got almost 8 hours sleep. And I got 6-7 which is good! I'm always thankful for the nights when she's not cranky enough to need to be picked up and rocked in the middle of the night. I know I need more sleep but I just think it's not in the cards right now. The few nights I've slept separate from Layla I'm still not able to sleep through the night. So instead I will treasure the nights like last night and pray for more of them.   

Day and Night

In meeting yet another health care professional that I had to explain Layla's story to I've been put into a time of reflection. Reliving the intense moments of this last year and then comparing them to where she is now I can honestly say it's night and day. As hard as it still is in some aspects there are others that are so easy. I never thought I'd be able to say that about my daughter. Seeing the joy on Layla's face so much more often, seeing her kick and punch, seeing her physical growth, it all makes me so happy. I can actually feel the love in my heart. Does that make sense? To physically feel the infatuation... yes I chose that word because it's like those in love butterflies you get on a first date (or for me, first date in a while with my husband). She seems to melt people hearts, which melts mine. Everyone loves her. I hope that doesn't change. I hope people will always feel love for her and not pity on us.
When I was explaining to a new specialist last week regarding Layla's improvements over the last 4 months and how we believe the G-tube was the best thing we could've done for her she decided to tell me how it's really not that much of an improvement. Isn't that kind of her? First off, she didn't know her at all prior to that appointment last week to have a comparison. Of COURSE I understand that in relation to other 14 month olds she is not even close to where they're at. But for HER she has significantly improved and I am going to hold onto that. Those kind of comments really do my head in. We've said it many times and I'll say it again, there are some doctors that missed out on sensitivity training. They are good with their work but not good with people.

Frustration

After two busy days at BC Children's this week I was feeling so frustrated. First off Layla had an EEG and it did not go well. She cried through the whole process of getting all the electrodes attached to her scalp, and then fought sleep for an hour and forty five minutes.. only to find out that we could've given her a sedative when they first asked me to put her to sleep... even though I mentioned to them that the only way we get her to go to sleep at night is with a sedative! Urg! Then within 10 minutes of getting her to sleep they asked me to wake her! Those drugs are liquid gold. What a waste. On top of that the results showed nothing. They were suspecting that she was possibly having seizures but it came back clear. Which is a good thing. 

I just feel like we haven't learned anything new about Layla since we left Ontario in August. I'm listening to the Neurologist and the Biochemical Diseases specialist tell me that they want to redo the exact same tests we performed 6 months ago at London Children's. I don't know if they don't trust the doctors out there or what? The one thing that did make sense is that they mentioned that they wouldn't really get any new information doing another MRI before Layla turns two. I guess the brain just changes so much in the first two years of life that it really wouldn't be much help and would not point towards any specific diseases because it didn't before (other than underdevelopment). So alas, we wait. That was one thing I really wanted to happen soon. If I could just know, if it's getting worse, staying the same or getting better I might be able to have some sense of certainty. Something that would tell me what direction Layla is going. Then I am reminded of what one of Layla's specialists in Ontario told me multiple time. "What is more important than a diagnosis is her quality of life." I know that is true. But i'm just so determined. Perhaps too determined. This transition from different provinces has been harder than I had hoped. I so badly wanted it to be seamless and boy did I work my butt off with phone calls, mail and emails to try and make it that way but it's been far from it.
I just received an email that Biochemical Diseases wants to bring Layla in to the day unit again in December. They are going to run blood tests before and after feeds.. again. But this time she is doing a very specific metabolic test. I quote "The Dr. is trying to find a diagnosis for her.." Well I'm glad I'm not the only one!

Someone who understands

This morning I had the pleasure of hosting a wonderful Canuck place counsellor. We spent an hour and a half talking. I love that it didn't feel formal at all. It was very casual. We just chatted. I didn't have to explain the whole medical history of Layla. She obviously did her homework on our story. It was so nice not to have to spend 3/4 of our time explaining that. She wasn't here to talk medical either. Instead we talked more about the present. How we're coping, struggles, joys, sorrow... Some things I would be scared to share with others. She not only understood but made me feel like they were normal thoughts, not the sort only horrible mothers think. If I found a random counsellor online they might help me deal with some of my current struggles but this woman literally only speaks with parents of "medically fragile kids". She actually put words into my mouth I couldn't on my own. It was like she was in my head.

I spent some time talking about the ifs and buts of going back to work. One of my comments was that I don't know if I want to work in customer service anymore. I don't think I have patience for people like I used to. I used to be so good at that. She guessed that it's because going through everything we have in the last year you change and start to realize what's truly important in life.. Head on the nail. Suddenly you really don't care how important it was for someone who absolutely needed to get to Calgary for a meeting who is now  missing it because it's my fault the plane can't fly in heavy fog.. I laugh but it's so true. I'm finding it so much harder to relate to others' problems. It's terrible I know. But that's where I'm at. When you are told to discuss quality of life for your daughter, how much you want medical professionals to intervene.. your whole world changes. There are so many things we've had to talk about that I never ever wanted to talk about for my kids. Aaron and I both feel it's made us quite cynical.. at least in our thoughts. I hope we don't portray that too much.   

I am not alone.

As I type this I am sitting in a chair, watching my daughter get rocked by a loving volunteer at the Canuck Place. We're here for our initial 3 day stay. This stay is for the nurses and doctors to get to know Layla's "normal". Her likes and dislikes, her funny quirks, how she sleeps, eats, rocks etc. So that in the future we will be able to drop Layla off for multiple days of respite. Such a crazy concept for me. After being her 24 hour caregiver it's hard for me to allow others to do all the things I normally do. When she gets worked up I just want to take her and make it better. But I have to allow them to do it because in the future I won't be around to help. Part of me wants to not do this. Receiving help is hard! Asking for help is even harder. It seems like they know that around here and so they just take the initiative. 

Today I met a two and a half year old boy that has type 1 SMA. Boy it was so hard to see him. His health is not well but man does he ever seem sweet. His eyes were barely open but I know he was looking to say hi, by waving his tiny little thumb. I felt my heart break for them. I had to escape to the washroom to have a good cry. It's so heartbreaking to know he doesn't have much time left. His parents were so so sweet. They approached me about Layla, assuming she too had SMA. They said she looked so similar to what their boy did at her age. I explained how they thought she did but have now ruled it out and we're back in the unknown. But it hit me hard when they said that.. What if she is heading down the same path as him?? What if she turns for the worst. I hate all these stupid unknowns we have!! Give me some answers. In meeting other parents and children here I very quickly realized that I am not alone. I am not the only person caring for a medically dependant child. In fact there are lots of people who have it a lot worse. It's not good to compare, I know that, but sometimes it helps a bit. It's nice to compare to kids similar to Layla rather than a "typical" 14 month old. 

I know we were supposed to sleep well having two nights without Layla but have not. I woke up multiple times throughout the nights. Worried about my baby. Wondering why I can't hear her breathing. But we're on the road to getting some rest in the coming months. It will get easier. In some aspects. 

Auntie making her laugh. She's so lucky to have loving family around. 

In sickness and in health

My husband is amazing. No, he's truly amazing. After all we've been through in the last few years I can't believe how strong he's stayed through it. Especially how I've been the last while. I'm not saying every day is a walk in the park for him (far from it) but he has every right to be angry, bitter, distant etc. yet he chooses not to. I need him not to right now. It allows me to deal with my stuff. It seems as though one of us is always stronger than the other, to help pick them up. I dread to think about where we'd be if we were both letting life get the best of us at the same time.
Yesterday he got off work early to surprise take me on a date. We celebrated five years together. Started with a beautiful drive to the town we got married in, shared a milkshake at the diner, had a nice long fall walk full of conversation and finished with a meal. The weather was perfect, the setting was perfect. We shared of struggles and fears, goal and aspirations. I am so thankful of how open and honest our relationship is. There is no fear of judgement between us. That sort of raw honesty brings a lot of tears but also laughter. Amidst the depressing conversations we both try and bring in some humour. When discussing how hard it is to get out child to sleep, or calm her when she's past her limit, or how badly our backs hurt from rocking, my husband says "What other option do we have!?" We both know how difficult it is to care for Layla with two parents in the picture that it would just be downright cruel for either of us to leave the other. So I guess we're stuck together. I could think of far worse people to be stuck with. He is probably the most involved dad I've seen. He works full time, gets home only to help with our daughter, spend time with me and give me some time to complete the house/personal tasks that there is no time for in the day with a needy child. There is no down time. I wish so badly that Layla would go to sleep at 7pm so we could at least have a couple hours to ourselves nightly. Unfortunately with her sleep schedule so short we don't have that option.   Something we have made a priority this year is to give each of ourselves one thing that is our own. Aaron is coaching volleyball and I am playing on a soccer team. Especially for myself, spending all day and night with her it is so great to not have to attend to a child for a few hours a week. We talk about getting that opportunity through going back to work but with having multiple appointments weekly and having to work around my husband's scheduled I just don't know if it's a possibility. Easier said than done. It is so hard to think about fully giving up my job. I hate feeling like I wouldn't be contributing financially. I want to have a purpose, to feel I'm moving up in the world. I fear what others will think. They'll just imagine that I'm lazy, at home drinking Starbucks and going to the spa regularly.. I wish.     

Worn.

Worn. And wearing thin. That's how I feel today. I can't stop thinking about the future for Layla, the future for our family. Right now she just looks like a big baby. She looks like she's sleeping as she lays flat across my arms. She's not. She's actually a terrible sleeper. But what's going to happen in the next couple months as she get bigger and bigger, still laying flat across my arms? What will the comments switch to? What will the looks switch to?

I've been meaning to write down this conversation I had with a woman in the mall a few months ago. It's one of many just like it and I'm sure there are many more to come. We had just been released from the children's hospital and I was so eager to have opportunities to take Layla out in public after she'd been stuck in the four walls of a hospital room for so long. We walked into this home store in Ontario where I loved looking at all their chalk painted furniture. This woman walked over to see Layla laying across my arms. The woman noticed "A sleeping baby!" To which I replied "Oh no, she's actually awake. She just likes to look down a lot." "She must be pretty new hey? How old is she?" She asked. "She is 10 months old." I responded. She gave me this puzzled look and asked "Really? She must've been premature then?" With my simple response. "No." Her puzzled look changed "Hm.. Oh. Well, she looks like she's in a coma."
I stood there in shock for a moment with absolutely no idea what to say. I felt like my feet were glued to the floor and my eyes were stuck wide open. My brain was trying to process how someone could think that was an okay thing to say... Even as I reminisce I still don't know what I would say. I have to just chalk her comment up to verbal diarrhea. Or maybe it's just ignorance.

 Some days I'm strong. Some days I forget that other people's 14 month old babies are not at all like mine. As my only child, she is all that I know. Other days I am far from strong. I think about what Layla would be like if she was a typical 14 month old. To imagine her walking, talking, eating.. all those things that just seem so foreign to me. I love her with all my heart but there are days.. too often.. where I think that I'm not cut out for the job of parenting her. It's so hard. I hate that our normal is doctors, specialist, emergency rooms, physio therapists, occupational therapists, social workers.. I'm trying so hard not to get bitter against God and other people that get to have "normal" children. When we first got married we wanted to have 3 or 4 kids.. now, we don't think we'll have any more. It's sad. To imagine a child running into your arms screaming "mommy!" or playing sports with Aaron in the backyard, makes me too emotional. Why can't we have that? Or maybe the question is Why can't it be easier for us to have that? I know that we can go the route of adoption and I do believe we likely will one day. But that road is also very emotional and expensive.
I hate being a negative Nancy but my normal positivity is harder to find these days.

Beside my bed.

What lays beside my bed? Syringes, earplugs, computer charger, phone charger, baby socks, ear buds, a ziplock bag and a lighter. Seems like such a strange group of things but they all have an important place there. There's all different sizes of syringes. 3 ml for medication, 5 ml for flushes, 10 ml for laxative and 60 ml for gas. Earplugs because I'm a paranoid mother of a sick child who snores and chokes in the night and it keeps me awake (I only sleep with one though so I can hear if she really needs me). The computer and phone charger are a pretty normal thing to have by your bed.. we need our entertainment, and phone services always working right? Plus with late night and early morning feeds and middle of the night blood sugar checks I am obsessed with setting alarms on my phone. The baby sock.. I'm not sure about that.. especially the fact that there is just one. The earbuds because my daughter is such a light sleeper. A ziplock bag is what we have Layla's formula in when we're on the go and the lighter was for some eucalyptus (yes, I had to look up how to spell that) oil burning thing my sis-in-law leant us while Layla had a pretty bad cold this month. Oh how so much has change over the last few months. I notice my last post on this blog was May 28th. That was the day before everything changed.

On Friday May 29th and I had another really rough day with Layla.. cranky as ever, not eating, not peeing or pooing, not sleeping, not letting me put her down. I cried the whole day through. When Aaron got home after school I said "I can't take it anymore, Layla can't take it any more, I'm SO scared." and then he said "Lets go. We're going to the hospital." I knew that if we went to the hospital we would be staying for a while.. I just knew it. So I quickly threw a bunch of all of our clothes in a suitcase and away we went in the car. At first we thought we would go to the hospital an hour away which was where Layla's paediatrician is as well as Aaron's parents who could take Charles (Our English Bulldog). But as we were driving we made a phone call. We called our friend Jordan who happens to be in med school. He knew pretty much everything going on with her and completely understood why we wanted to bring her in. He suggested and gave us the pros and cons of driving another hour further to the children's hospital. I kept having flashbacks of going to the hospital where they had no idea how to take blood from a baby.. Layla cried and cried for hours and then they sent us home. The next time we came in she cried for another hour and I ended up passing out and ended up on a hospital bed in the hallway. That was not a fun experience for us all. I looked back at Layla in her carseat and she had fallen asleep. So the decision was made that we would drive on. We had to pit stop on the side of the highway to give our dog to Aaron's dad but then we kept on. The whole drive I was second guessing myself. "What if they just think we're over paranoid parents? What if they send us home? What if there's nothing they can do for her?" and then onto the most awful thoughts "What if this is the end?"

Thankfully it wasn't the end. We spent the first 4 days in the PCCU (Paediatric Critical Care Unit) and then the next month as an inpatient in the Children's hospital. One of the nurses in the PCCU said to me "If your child ends up here then it's a good thing you brought her in!" haha I can't believe I second guessed myself. But you have to understand that because we thought our daughter had SMA we thought that what was happening to Layla was expected. That was the most emotional month of my life.. In some ways we got a lot of rest that we hadn't had in 9 months. Layla slept in the hospital most nights with my mom in the room and we slept at the Ronald McDonald house across the street. But it wasn't true rest spending your whole day in a hospital room running millions of tests and talking with doctors. She was constantly on an IV, had blood work done on the regular, multiple scopes, skin biopsies, muscle biopsy, urine samples.. the list goes on. 

We left the hospital with some good and bad news. The good news was that they ruled out SMA! You would think that would make me jump for joy. Sadly it doesn't. Fully. Even though we were told our daughter doesn't have that terrible, awful disease now we feel even more confused. Because they told us that she likely has something with a similar outcome. But there's also a chance she could have a different disease that might give us more time with her. There's nothing concrete unfortunately. Her paperwork says she is diagnosed as "Progressive genetic neuromuscular disease NYD (Not yet determined)".   

The best thing we left the hospital with is a G-tube. Between Layla's dozen specialists and ourselves we sat down at the round table for a meeting and discussed how no one could see Layla being able to gain the weight she needed and continue to grow without the help of a feeding tube. She received that surgery on June 19th. For the hours/days/weeks post surgery I hated myself. Seeing her intubated and crying in actual pain. I thought "How could anyone put a baby through that? How could I do this to her?". But after about a month post surgery my feelings have completely changed. No she has not turned into an easy baby. BUT she has turned into an easier baby! She sleeps for longer chunks of time, she's happier for longer chunks of time and she even lets me put her down for longer chunks of time!
Specialists are still working away at finding us a diagnosis. I just want to know what we can expect for the future. Right now we have no idea. She is now 13 months old. We have just gotten to the point where people are really noticing the difference between Layla and other kids her age. Before people just assumed she was younger than she is. Now, she is too big to be considered an infant. People always think that she's sleeping because she has no neck support so she's always laying across our arms, or laying on the couch. She doesn't fit in infant things anymore either so we're starting the process of getting "Special" things.. This week she got a new bath chair and we're on the waitlist for a new carseat. And I'm sure there are much more things to come!

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.