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!