Good.

"Only months ago Layla didn't really do anything, look at her now." Words Layla's paediatrician said at yesterday's appointment. Kind of a funny statement but completely true. She was so thrilled to see and hear about Layla's personality shining through as she ages. It is truly amazing to watch this girl change. As I type this on my bed, I have Mumford and Sons playing in the background while Layla is singing (either that or just yelling) and kicking off my legs. Something I could only imagine before. 
I interviewed a lovely woman this week who is interested in giving us some respite regularly. She and I had met at water therapy a few months ago. At the time she was working with two twin girls 32 hours a week who were quite similar to Layla. Her hours have dwindled down with them because the parents are both at home for a while. After we met at the pool she said she was kicking herself that she didn't get our contact info. She then spent the next couple months keeping her eye on craigslist for an ad that sounded like us. The feeling that someone would actually search out to look after my daughter? Incredible. I had no idea we could make that sort of impact. Even this woman said to me, this doesn't seem like the same girl I saw a couple months ago.. She is so active.
On top of that some of my wonderful family and friends have generously come together to give funds to help with respite while we are waiting on the grants and government funding. Truly incredible. It is so heart warming to be on the receiving end. Of course, it is hard to except the help. But I do know (though I have to be reminded) how important it is.
So lots of positivity going on around here. Feeling the love.
I'm going to stop writing at that note. Focus on the GOOD.

Respite: Day 1

Today marks a new beginning. Today I had my first two sessions of respite. One hour this morning and now one this afternoon. A truly sweet nurse showed up at my door excited to have some time with a baby in comparison to the usual elderly care that she does. Once I gave her the rundown of medications, the feeding pump and the ways of keeping Layla pleased I felt comfortable giving them some space and moved into the front room. Listening in I could hear songs being sung and little noises of enjoyment from Layla. And I thought I can get used to this.
With a deep breath in and out I felt a wave of peace. A small weight off my shoulders. She is in good hands. I intended on going out of the house to a coffee shop around the corner for a true break, out on my own. But after an incident with the feeding pump going off and the nurse not knowing how to fix it, I decided that she, nor I, am quite ready for that. Hopefully by next week we can get there. Baby steps, right?
This is only the beginning.

Help is on the way!

I absolutely love all my nieces and nephews to pieces. They are the cutest, funnest, funniest little humans. I had the privilege to spent the last 4 days with all of them from my side of the family in one place.

I have a child who is unable to do anything for herself. Which leads to a lot of sitting on the couch, or rocking, standing by the couch. If you know me, you know that I am a high energy person, so it can be very difficult to for me to sit still. Two qualities, I always thought would make a good parent. With the 2 years of very lacked sleep, I'm getting better at this. When given the opportunity to be with other typical children who give so much back it's fills my heart, while breaking it. I spent the weekend chasing them around the trampoline, reading Dr. Seuss, climbing into the tree house/pirate ship to take off to the next destination, flipping rocks on the beach to watch all the crabs scurry away to another safe spot. Hearing their giggles and screams with the biggest grin on their face is all the payment I need. Though I can't help but yearn to do these things with my own daughter. I love her so incredibly much and I hate that her body and mind are failing her. I hate that she sits on the sideline while they kids all play together. 

Why do we not know what she has? What if there's something we can do to give her more abilities? Why us? Why anyone? This isn't fair. 

I don't know if I will ever be fully happy and excepting of her condition. It sucks to be that parent, and for her to be that kid. That doesn't mean at all that I don't love her. She is incredible and I will always find the best in her. But it is absolutely nothing like I imagined parenthood would be. Nothing like any person imagines it would be. We know special babies are born all the time, into some great, and some horrible families, but I have yet to meet a person who thinks it going to be them unless they already have a special child. I was that person. And now, believe me, I've had the thought many times "I didn't sign up for this." 

Things have gotten a lot easier in some senses, especially with Layla's irritability. And as we continue with doctors and therapies I believe it will only get easier. Once we are set up with respite, preschool and Layla is given a bit of her own life, away from me, I think we will set in to a fantastic routine with a healthy amount of separation. You see, there was a long time when we didn't think Layla would make it until two, so I felt my place was to be with her 24/7 to soak up every moment we had. Now, I'm not sure how long we will have her but in order to make it sustainable, she needs a life outside of me.  

The fantastic news is that we have been given a small amount of nursing support for the next 9 weeks to get us through until the government respite kicks in, in the fall. This week we will have a little home assessment so they can decide who would be a good fit to come in. I'm still deciding which is the best way to use my 4 hours a week. Working out, sleeping, laundry, showering.. All super important things to bring back some sanity in my life. Help is on the way. Finally. 

Take Charge

As a kid, I was always a dreamer. My mom shares often of when she asked me what I wanted to do when I grew up and I said "Leave the country." I always wanted to travel, try new things, see what life was like in different parts of the world. I lived up to that for a while. After I completed grade 10 I decided that I wanted to finish school as fast as possible to make that dream a reality. So I signed up for online schooling, completing grade 11 and 12 within just over a year, while working a big chunk of that full time as a receptionist. Just after my 17th birthday I took off to the UK to become a nanny. Unfortunately, I didn't get to experience what I was hoping in that position. I won't go into too many details but in hindsight it seems like a movie scenario; the family didn't value me, nor allow me to communicate with my own family. Multiple shady situations lead me to sneak away when they weren't home and take multiple trains across the country. Thankfully my brother happened to be dating a wonderful english girl at the time who's family took me in for a while without even knowing me. At their home I remember having a skype conversation with my mom where she brought up my dreams of traveling the globe. She was worried that one bad experience would take that away from me. So when given the opportunity to travel some more in Europe, rather than coming home straight away, I took it! A month later when I did end up coming home to Canada, it was on a much more positive note, than it could've been. Here I am, many trips later and so thankful that I have been able to make traveling a priority. I've worked 6 years in the travel industry including 3 different airlines and a travel agency.
Recently, I've been hit with the thought that this isn't going to be something I can pass down to my daughter. Her traveling is going to have to be a lot more local. After two years of age children are required to sit in their own seat on airplanes. With Layla's poor neck control she will not be able to sit unassisted. The thought of traveling with all her equipment and feeding supplies, not to mention if we had any medical complications abroad is enough to keep her home.
For me, it means that my traveling will be limited to week long trips without Layla. Which could be ideal, for my current needs. I can get a lot more exploring done without a child. And a lot more rest to feel ready to deal with home life. For others, it might not be that high on their list but for myself I've made it a priority, a priority that keeps me sane.

"Go confidently in the direction of your dreams. Live the life you've always imagined."

"You can't keep doing the same thing and expect different results."

"You are the only person in charge of your future."

These are the type of quotes we have all heard many times. And I believed them for a long time. When someone would tell me of their unhappiness in their life, job, spouse etc.. I would always think to myself, then change it. If you're that unhappy, why are you still putting yourself in that situation? You have the power to move away, change jobs, do something that really makes you happy. That was until Layla came along. Very quickly, I realized that I've been placed in a situation where there are a lot of things I cannot change. I know that it would be impossible to raise Layla on my own without Aaron, so I need him. On the days when I feel like I can't do this whole parenting-a-special-needs-child thing I'm reminded that the only way out is to give her up, and I just can't do that. In order to stick it out there will be other areas in my life that will suffer because of it. That is just the truth. If we had a lot of disposable income, I would 100% hire someone to help me with Layla, through some days and nights. Thankfully some amazing people have been more recently brought into our lives to help us get respite in place to ensure that we can sustain and enjoy the life we lead.
Aaron and I have been talking a lot lately about our dreams for our future. Short and long term. There are many things that we are unable to change. But there certainly are some that we can. We need to bring these up more often and note any little things that we can do to work towards making them happen. Growing up, my dream was to live somewhere foreign on a beach. That will not happen, as far as I can see. Buuuttt could it be possible to live on the ocean, or a lake in Canada? Why not? Not anytime soon but it can happen. I believe dreams are placed inside of us for a reason. If you don't have dreams and aspirations what are you living for? As I go through a season of being tied to my home, I remind myself that this isn't forever. There will come a day when I can make myself more of a priority. My goals of having a successful career and living life abroad are not realistic at this point... key words being at this point. I always said "If you don't make something a priority, you won't ever do it." So I am making it a priority to not give up fully on my dreams and to look at ways of adapting them into a more realistic goal. This series of unfortunate events, can't go on forever.

Prior to awful diagnosis' and hospital stays and a feeding tube and special seating Layla had the opportunity to spend time at my favourite place.. the Caribbean beach. 

FINALLY

NIH application and all medical records have been sent in. In 4-6 weeks we will find out if we get to go on a little journey to Washington D.C. It's oh so exciting to think there could be a chance of finding more ways to understand Layla, help make her the happiest we can and have some understanding to what her future may bring. This brings a lot of nervousness as well, as to what we may find out. Plus a fear that even if we do go, they might not find an answer. I will have a lot less hope that we will ever find a diagnosis, if these specialists don't. That's a bit of a hard pill to swallow. To continue in so much unknown. I don't want to think of that though. I am not near ready to give up.
The application for the first one time grant to go towards respite is complete. The infant development consultant called me yesterday to read what she wrote for her letter and she is so confident we will get some funds. We have our own letter plus three more from professionals recommending this as a necessity. They can't deny us, right? Moments after we finished our conversation the social worker called. She said she had been working hard to look at different options for respite until the government funding would kick in, when she found out a family in the area who receives it is moving out of the country in September and she is giving us their funds. PTL! There is light at the end of the tunnel. Plus on top of that, she has referred us to this program that will send over nursing support for a small four hours-ish a week to get us through the summer. She said she kept thinking of how I mentioned as a used-to-be-very-active person and it's hard to spend a lot of my days sitting like a lump of lard on a couch.. (well maybe not in those exact words..) and thought this could be a perfect opportunity for me to go for a run or take a workout class a couple days a week. Such a good way to break up my day, get that needed break from Layla to recharge and be ready to give her my all. I felt the tears fill my eyes. Something so small means so much. The idea of doing something for my personal and spiritual self needs to be more of a top priority. The stress and anxiety has been building up for far too long and it's now showing more physically, through more migraines, back and neck pain, and skin issue (this is a new one for me). Thankfully I'm still at a place where I can pull myself out of most funks but I recognize there needs to be a change. 

Vulnerable

After posting my blog link for the first time publicly on Facebook. All the sudden I feel nervous to write. I feel like so many people are seeing my real life and real thoughts for the first time. Before, my readers consisted of my mom and sister in law. People who I was already more honest and open with. The blog was really just about me venting, not about wanting the masses to see it.
It's a scary thing to be vulnerable. To share some of those deep dark thoughts with the world. In some sense it's easier to type those feelings rather than say them aloud. There was something that kept me from sharing for the past year. Perhaps because I had so much uncertainty in my own thoughts, I wasn't ready for others to put in their opinions before I had my own. There were the voices telling me, people wouldn't want to know, or that they would simply think I was lying. A lot of it could sound unbelievable or like I'm trying to make it sound worse than it is. Though, I honestly try to keep a good balance of positives and negatives in my writing. I don't want, and never wanted it to be all dark because there truly are some wonderful things that happen. There always is, if you look for them. But I needed a place to let out the negative stuff too. Just using my husband wasn't enough.
Motherhood normally brings such a sense of community. When moms get together it's basically story time. They share of the tantrums, the laughter, the hugs, the new words, the first steps, oh so many firsts. All the things I longed for when I wanted to become a mom. Sadly, in my world I don't have that. Thus haven't found that type of community. Sure, I can relate on just being a mom. But not on too much else. And other moms can't connect with me because of our unique situation. Some people are scared to. I see it. Kids are always the ones who ask questions about Layla. The parents are the ones to sush them, say nothing and awkwardly change the subject or walk away. Oh how much worse that is than saying the wrong thing. The more involved we get with Canuck Place and the development centre I know we will find more of that connection. And who knows, perhaps through this blog I will make connections that otherwise wouldn't be possible.
After making my blog public, I was so surprised at the responses. Multiple private messages and texts thanking me for sharing and encouraging me in my writing. It's amazing how freeing I felt. No need to hide the truth. Different is beautiful and interesting. If I didn't have Layla I fell like I would be curious about a mom going through what I am. Maybe now people will be less awkward about asking questions because with so much information available they will alerady get an idea of what my girl is like and see that I am ready to be open. 
The last couple weeks have been very positive. Things are starting to go our way. Doors are opening. Other people are starting to fight for Layla. Not just me. I have felt for so long the pressures of being a mother, an advocate, a caretaker, a nurse.. all alone. Yes, Aaron is super involved and helpful. But there is a whole different level for me being 24/7 with Layla.. and I just happen to be better at research for programs, doctors, fundings etc. 
I got a call from physio that she think there is a child's power wheelchair at red cross in Vancouver. She is emailing, calling and trying her hardest to get that chair. Fingers crossed we can get our hands on it as a loaner. Then we would just get the engineer to come out and customize. It would be pretty easy to get that funding because of it being from red cross (I hope). But then of course if we get the chair will be need a ramp for our house and eventually a wheelchair van. Aaron can put together a makeshift ramp for the first bit I'm sure. And the van we will likely apply to different programs and variety clubs. Besides at the beginning it's not going to be too important to transport the chair around. She will start by wrecking all the walls in our house and the basketball court down the street.  
We are currently putting together an application for a one time grant that would go specifically towards respite. Yesterday, the infant development coordinator from the development centre came with us to Layla's every three week check up with her pediatrician. It was so amazing to watch her pick the doctors brain on where we might be able to access funding for respite, and talk so positively about us and Layla. She is truly an amazing advocate for us and I'm so thankful that we will stay connected with her as we continue to live in BC. That doctor is coming up with a letter to put in with our applications and I do believe we will get some funds. Hopefully enough to get us through until the government respite kicks in. 
By tomorrow our application should be complete for the undiagnosed disease program. Then we will have to wait 6-8 weeks to find out if Layla is accepted.. And I pray we do. If there is any hope for a diagnosis or possibly any sort of treatment, it's there. We've been watching youtube videos about the program the last few days. I will post a link of a ted talk from the doctor who heads up this program for anyone that may be interested. 

More deep breaths and positive thoughts are coming out of me than I've had in a long time and it feels good. Fighting through the fog to get to that sunshine. 

https://www.youtube.com/watch?v=aMMBmc_pQVA

This is the happy face of a girl who slept for 6 hours straight! Nevermind that it was 4am when she woke up. 

One year ago today

Where to begin. We had been surviving on next to no sleep. Layla's whole life thus far (9 months) she had only slept for an hour or so at a time through the night. Then in the day she would only ever cat nap in someones arms. She would cry so much of the day and night that it really got into my head. I would do anything just to keep her content. The only ways were to stand and rock her, breastfeed her and sometimes go on walks.. at a brisk pace and on a bumpy road. All were physical activities for me. There was no rest. For any of us. Aaron was doing a fast track program which left him with many hours of homework, while trying to help with Layla. I honestly don't know how he did so well in school with such lack of time and sleep. Though in my eye, at least he got a break from the craziness that was our home life. It's insane for me to look back and think so many things were normal parenthood for too long. You know when they say mothers should trust their instincts this what one of those scenarios. And I wish I trusted my instincts sooner.
Exactly one year ago today was our whits end. Layla had gotten progressively worse. Which we were told would happen for kids with SMA. We'd been able to (somewhat) deal with the crying, lack of sleep etc. but the one thing that scared the living daylights out of me was her breathing. As she became weaker, it became harder for her to breath. Her whole chest would concave, you could see her neck straining and a high pitch wheezing sound would come out as she tried to breath. Her doctor said because of her hypotonia (low muscle tone) she didn't have the muscle strength to open her airway wide, which made those dreadful scary sounds.
Aaron came home from doing five-twelve hour shifts in a row at his work placement for his schooling and I was standing there in the kitchen, crying and rocking Layla who was also crying. This was nothing out of the norm. I said "I can't do this anymore." (Which I'm sure I said multiple times but this time was different.) Aaron said without question "We're going to the hospital." We took a few minutes to pack up some clothes for us all, because I had a feeling that we would at least stay a few days. While on the road we called two people in our lives who work/worked in the medical field to ask their opinions on going to the local hospital where Layla's pediatrician would meet us or to keep on driving to get to the children's hospital. In the end we decided to drive to London Children's because we figured we would get likely sent there from the local one anyways. They are just more set up to deal with kids. As we drove, she fell asleep. Then I started doubting why we were going. I asked Aaron "What if they send us home, and think i'm just an over paranoid mom?" or worse "What if they can't help her?" I had this deep, dark pit in my stomach that was making me think we wouldn't get to come home with her again.

We were so fortunate to have a great friend attending med school at the time. He met us at the hospital and even parked our car in the staff lot to save us some money. He came in and stayed with us until the wee hours of the morning. He kept us calm and distracted us. He brought us food. He gave us ideas of what was going on in the background while we waited. I am so thankful for him in that time and especially the days to come.
I wrote once before about the nurse who admitted Layla and asked me to sit her on the scale. We had a funny little spat in triage.
"Please sit her on the scale."
"She can't."
"Why?"
"She doesn't know how to sit."
"But why?"
"I don't know.. that's why we're here!... The doctor thinks she has SMA."
"Okay, then lay her on the scale."
It was actually awful. It was one of those moments that I had a realization that there was something different about my child. (I have had a lot of these moments along the way). The number on the scale was wrong. It had to be. It was so much lower than what she weighed in at only a couple weeks before at her doctors office. I thought the nurse did it wrong.. but it was right. Layla had lost a lot of weight and fast. It made no sense to me because I was feeding her so often. We were admitted fast but just sent through to a private room where we waited longer. I put Layla out on the bed and she started to smile at the crinkle paper under her. "Sweet, now you smile. I haven't seen that smile in weeks and you choose now to smile!?"
Waiting for the doctor I decided to attempt to feed Layla. What I didn't know was that would be the last time I would breastfeed her. We say getting the gtube put in is the best thing (in hindsight) we could've done for her, and it was, but I never got that moment to kind of prepare myself for it to be done. Not that it was a great experience anyways. She fed every hour or so, never latched well, and it was always very wet and messy because she wasn't strong enough to swallow all the milk down. I pumped in the hospital for 3 weeks, giving it to Layla by an NG tube (through her nose) and then decided it was the end of the road for me, or rather for my boobs, right around the time we decided on going forward with the gtube surgery. That's a whole other story. Stopping pumping actually lifted a small weight off my shoulders. One less thing to worry about in all of this. In the stress of everything I wasn't producing enough milk for her daily intake anyways.
They decided right away that Layla was very dehydrated and needed fluids. Easier said than done. It's hard to get veins from low tone children. It's next to impossible to get a vein from a child who is very low tone and super dehydrated. They tried each arm and leg before asking if they could attempt in her head. They could see one through her pale head that they were sure they could get. We agreed. She needed fluids. They shaved a spot and gave us a little baggy from her first haircut.. is that even in the realm of thought when one thinks of their child's first haircut?
Quite quickly we were admitted to the pediatric critical care unit (PCCU). By quite quickly I mean by 5am after arriving at the ER at 10pm. They sent us to go lay down for a bit while they got the IV, NG, oxygen and sats tubes and monitors all set up. We lasted about an hour before coming back. One of the nurses overheard me and Aaron making fun of how I was uncertain the day before that we should've come to emerge. He said "If you end up in here, you really were supposed to come to the hospital." On the regular pediatric floor the nurses to patient ratio is 1:4 sometimes 1:6. In the PCCU the nurses to patient ratio is 1:1 sometimes 1:2. And they are set up right beside the patients 24 hours a day.
Prior to this hospital stay we had been waiting for June 4th to come around when we would meet a neurologist. He was going to confirm Layla's stage with SMA, be our foot in the door to the children's hospital and advise us on where to go from there. We obviously didn't make it to that day. But on our first full day in the hospital we met him at Layla's bedside. He first told us "Do not tell any other people that this is how you get to see me sooner than their appointments." Thank God for some humour. When we told him Layla's story he asked if blood work had actually confirmed SMA. We told him no. But our pediatrician said he was 90% sure that she had type 1 SMA. He understood why that diagnosis was thought of but was appalled that someone would give a life limiting diagnosis like that without having proof. And right there, right off the bat said "Looking at Layla, hearing her story, I do not think she has SMA. I can't guarantee any much better outcome but we're going to try to find out what she does have."
There you have it. Day 1 of 30 in London. Our first encounter with 1 of 13 amazing specialists. It seems like yesterday. Even though we didn't come out with a diagnosis. We came out so much more knowledgable about our daughter. She came out healthier. And here we are one year later.. she's still undiagnosed. Still working with amazing, but different specialists, in a new (but old) province. And most importantly, Layla is still here.