Reflection

Well, it's that time of year again. Time to reflect on what 2017 brought us and what will come of 2018. Until designating time and energy into to look back I didn't realize how full this year was of life changing moments.

-Seizures were brought onto our radar. In April Layla had a cluster of many seizures including a grand mal seizure lasting over an hour. We were fearful that she wouldn't come out of it but I thank God that we were already at the hospital for this event and with multiple meds they were able to get her out of it. It was a very scary, eye opening day for us. We realized that seizures had been happening for a long time but we were unable to recognize them, and didn't know what to look for. This is an ongoing issue and regular meds have since prevented any major- long lasting seizures. There is a high chance that we will see increased seizure activity at some point but we are thankful that they are having minimal impact for her day to day activities. 

-Aaron went through a career change. It was a tough decision for him to move out of what he went to school for but it was the right change and he is in a much better work environment than he had been. 

-We went on the long awaited UCLA trip with the Undiagnosed Disease Network. There the Doctors confirmed Layla's diagnosis of Pontocerebellar Hypoplasia type2d. I wish that this diagnosis came with a treatment, that there was a way we could extend our time with her and how limited she is while with us, but unfortunately the prognosis isn't good. Our priority is to keep her as happy as possible (which she's been doing very good at lately), enjoy what time we have and now we can better make decisions with this information in mind. It has been a strange transition to be done with diagnostic testing but that has brought less poking and prodding and a little more peace.  

-With the help of many generous people within approximately 8 months we were able to fully pay off the wheelchair van. That blew me away. When we started the initial applications, I never saw that possible and it wouldn't have been without our generous community of people. This van has been a lifesaver. 

- We sold our first home and moved onto a second one that is better suited for Layla's needs. It's been a slow transition for me to bond to the new house but it's getting better. 

- And in bittersweet news we made the final decision to not attempt to expand our family naturally. The risk of recurrence was too high and we are not gamblers. We both knew that we weren't done with having kids. Our hearts have been broken and pieced back together many times over the past few years in this area. Attempting to prevent bitterness and anger is hard at times. Life is not fair. We all have these sensitive areas in our lives. Instead of focusing on what I cannot change I try to focus on what we do have control over. I knew that if the two of us gave up on having another child it will only add a wedge of sadness. So last January we met with an adoption agency. At this point we have fully completed our home study and are on the waitlist to bring another child into our lives in a different, yet still very beautiful way. We are trying to be patient through the very long and slow process. It will likely be another year or two before we bring home another child. For now, we will focus on Layla. We want to work on making the house exactly what she needs by adding ceiling tracking and a roll in shower when we can. And try and save as much money as possible to go towards this costly decision of international adoption.
A lot of things are out of my hands at this point and I'm working on trusting that I have done the best with what I have and the rest will work itself out. Looking into 2018 I already have a growing list of things to sort out. But I am more confident these days in the great team of support around that it will not be fully put upon my shoulders and for that I am thankful. Cheers to another year.

Moving day

Big change happening around here. We will be moving in a matter of two days to a new house. It's been a very long road considering. Back in April we made the decision to put our house up for sale. We had only been in our house for a year and a half at that point but we were already starting to realize how big Layla was getting and nursing staff were starting to mention how they will hit a point where they are not allowed to carry her up and down the stairs. Unfortunately, there is no way to build a bedroom on the main floor and not enough space (nor money) to cover getting a lift or elevator up to the where the bedrooms are. So we listed. We had offers fall through on our house which made offers fall through for us to make other new houses- there were so many road blocks. It was very discouraging. We continued to update our pros and cons list but knew this was a necessity. Finally, just over a month ago we had an offer on our place stick. The house sold but there was no where for us to go. Plans were made for us to move our things into storage and stay with family while searching for the right place. It wasn't ideal but it would work. Then a week and a half ago we found a vacant house that we deemed worthy of an offer - had a few back and forth offers until they accepted. The best part is that the transition will be smooth. Thank goodness. The new house is not perfect but it hit 80% of our wants/needs so we're happy with that. We will still have to build a ramp off the back side of the house to get Layla inside but once she is inside the bedroom and bathroom are on the same level which will make life a lot easier. The back yard is big and beautiful. The neighbourhood is great- fairly flat for walking. There's a nice elementary school within walking distance. It's minutes away from where Aaron plays soccer regularly. It's closer to his work, our friends and family. There's a lot of great things though right now all I can think about is the piles of boxes surrounding me and the imminent move. Just gotta get through this weekend.
A quick note on Layla's progression. She's been doing a block of speech therapy and it's been really cool to see unique ways that we can get her to communicate. For the past four weeks we have been using Layla's vision as a way to communicate "more". We will hold up a toy that she likes, that plays a jingle, once played we will move it just out of her line of vision and ask if she would like "more?" if she moves her eyes to find it we will take it as that she wants it to be played again. So simple but she's doing it! It's the basic steps that will take her towards choice making. We have been using specific items for object cues to help her know what is coming up next. One cue is a red cloth. I will say "It's time for a bath." and then give her the cloth. Let her touch it and hold it for a while as we make our way to the tub. Soon we will decide on an object to represent going for a walk. Eventually we hope these items could be held up and she could be given the option to choose which she would like to do and then use her eye sight to choose. It only seems right to let her have a voice and an opinion in what she does.

UDN

The undiagnosed diseases network has just published a little blip about Layla based off of our recent visit to UCLA in July. The hope is to find other children in the world similar to her and have research done that will help families going forward. We are so fortunate for this opportunity and are thankful to have some incredible doctors take on this task.

https://undiagnosed.hms.harvard.edu/participants/participant-038/

A season of REST

Just yesterday I was sharing with Aaron how thankful I am that Layla's sleep has improved. The past near 6 months she has consistently (85% of the time) been sleeping for 6-8 hours straight at night. And to top it off she has been falling asleep often on her own! This has been life changing for our household. We all like each other a bit more when decent sleeps are happening. Then of course as soon as we have this conversation she goes ahead and has a rough night last night. What are the chances? This is why I'm nervous to speak too soon. Fingers crossed it's a one off. Every time she has a night with little sleep my heart rate rises and my eyes stare to watch seizure activity. Sleepless nights are a trigger and I pray that we will not see another grand mal seizure. So far so good today. A few strange symptoms but I believe they are just to do with the lack of sleep and trying to get her caught up. The great news is that it's Monday which means we have a overnight nurse who will keep watch of her and I won't have to get up if she does.
It's my second week home from my vacation and we have an abundance of changes happening in our lives (selling our house, looking for a house to buy, where to live and store out things in the mean time, job changes, in search of a preschool, in search of a new respite worker.. sheesh.) I was able to sneak away for a wonderful ten day vacation in Australia where my one sister lives with her husband and doggies. It was the longest I've been away from Layla but she was in very capable hands with her dad and then at Canuck Place for majority of the time. She did so great. They took her on an outting to a pumpkin patch and then later she carved a pumpkin with the Canuck Players who come every year. Who knew that I really needed that time away to prepare for the stresses I was coming home too. I might need another vacation in a few months to destress again. Maybe not quite as far away.
While I was gone Aaron met with the orthopaedic surgeon for Layla's hips. The doctor is still happy with the range of motion and very glad to see that she's not seeming to be in any pain. Even with them going out of place she believes we can continue to push the surgery. We will go for another appointment in 3 months to keep an eye on the progress. The goal is to have her as old as possible.
Appointment wise, it's been pretty quiet lately. We did a stint of physiotherapy and now are in the process of a speech therapy block of appointments. Like I posted before, since having the diagnosis it seems like we're just kind of waiting around for something bad to happen and then see the appropriate specialist for that issue.
I'm trying to relish in this rest and be thankful. It is a good thing. She is so content and strong (for her). My bond has grown immensely. I love her so much more than I thought I would ever be able to. Just talking about her makes me smile. We take time every day- multiple times a day- to just cuddle on the couch and soak in each other. Now I'm noticing new people having legitimate bonds with our sweet gal. It's a beautiful thing to watch. When given the opportunity she is able to find a special place in others' hearts and it breaks down some of the walls I've put up around my heart. As any mother's heart you never want to see your child be treated as any sort of an outcast. My own fear can prevent others from seeing the value in children such as beautiful Layla so for that I am sorry. Because I know she is definitely worth knowing.

Staycation

Tuesday afternoon we checked in to Canuck Place for some days of respite. This time Aaron and I are staying in a family suite on the top floor while Layla stays one floor down with 24 hour nursing. There are volunteers through the day who will spend time with her, doing crafts, playing music, going for walks, reading and cuddling.
I'm feeling slightly restless not being responsible for Layla at all for days on end while being so near to her. Distracting myself to recognize that this is short-lived so I must enjoy it. I have been coming and going during the days. Enjoying multiple cups of tea and cookies, reading a book, going for walks and jogs in the neighbourhood.. and sitting in the most amazing massage chair- that even massages your feet. It's incredible. We were spoiled with tickets to the movies the other night and of course not having to worry about cooking meals is a big treat itself.
Tomorrow we will have our yearly meeting with a doctors, nurse and therapist. There comes some nervousness with that meeting but it's actually very beneficial to feel that we are all on the same page.
So thankful for this place.
We went in to the children's hospital for an appointment with Neurology as well as Biochemical diseases. This was the first set of appointments with them since finding out Layla's diagnosis. It's a strange feeling to not be in search of what is causing her to be the way she is. This has been their goal for two and a half years and just like that, the search is over. So now I need to change my mindset for these meetings. It's more about what differences we are noticing since the last time we met. At this point they want to mainly observe and keep an eye on her seizures and respiratory system. We will do a 24 hour EEG test to check for seizure activity. This will help the doctors decide if we should increase her medication because we don't want to see any seizures if possible. Right now she has been still having daily absent seizures lasting very short periods. Then we plan on doing a sleep study to ensure that Layla's oxygen levels are staying in the okay range through the night. I'm fairly confident that they are so I'm not that worried about the insane waitlist for that test.
We have also had to push the appointment with the orthopaedic surgeon from February 2018 to October 2017 because the every 6 month follow up x-ray has unfortunately shown that Layla's hips are getting worse at a decent rate. I'm assuming that surgery is going to get pushed a lot sooner than we originally thought. Boo.. this will not be fun for anyone. The strange thing is that we don't notice that Layla is in a lot of pain with her hips, and if she is, she's not making it obvious. Though, she's always been a funny one to figure out so who knows.

Hospice Life

As I walked out of the children's hospice I looked over at the fireplace mantel, as I normally do. Reading through the names and sending up good thoughts to their families. Not even able to fully fathom what they must be going through. There is always a fear that I will see a name that I know. Canuck Place houses will put the names of children on their program who have passed recently onto the fireplace mantel so that staff will know. They also have a whole protocol for when children are in the process of passing and have passed within moments and hours while in house. I wish I could say I've seen the mantel empty, but I never have. There are children passing daily- long before their time. That is just the way it is. 

This day was the first time I recognized one of the names- I knew it had to be this specific child because I was positive no one else in the program had the same name. My heart sank. I wrote an email to the mother to be sure. And received a detailed email back confirming that it was in fact true and she shared the details surrounding the events. She did not see it coming. She felt like everything had been going fairly well, they were in the process of planning kindergarten for this year and thus completely caught off guard. It only takes a moment. Seems that not all children really let you know. I'm not sure if that is easier or harder than living through more intense pain and sickness prior. I felt compelled to share my positive stories of their child- how they made me laugh and how they were one of the first families we met through Canuck Place. I am so thankful for the few conversations and emails that we did take part in. Another mother (the actual first one we had a full conversation with) introduced the two of us because she thought there were many similarities between our children. 

This passing has hit me a little harder than I would've imagined. The reminder that Layla's days are numbered and there's not a way we can predict when that time will come. There is so much stress that comes with that realization. It is a reminder that there will only be more children who we have grown to know and love that will be passing around us. What a world this is. It can be so unfair.

We are scheduled to meet with the hospice staff for our yearly meeting next Friday. We have to discuss plans for when Layla does pass. Seems morbid but it actually is really helpful for me, mentally. They try and have these discussions when children are (relatively) healthy so you are not making decisions in the middle of a crisis. It just makes for a heavy couple days around it.

This intense information is a good reminder for me to get back into counselling after a few month hiatus. There's been a built up of things that have happened and have been on my mind. It's honestly so incredible how even one meeting can take a chunk of weight off and bring perspective if only for a short time. 

Knowing Vs. Feeling

I don't know if there's any other moms out there that who can relate but I've been struggling with feeling fulfilled being at home #sarcasm. I'm positive that I am not alone in those thoughts. 

The problem is that once my mind has an idea it's so hard to slow it down. I have spent far too many hours and hours online looking at jobs, looking at going back to school, and actually going to multiple interviews.. only to discover that if I'm going to get back out there it's going to have to be a very special job that is flexible to my life. It's been very disheartening. My hours of nursing support are not always consistent and I have to allow for the driving and transition times. Plus there's a chance they might cancel or Layla might have a medical appointment or emergency. Basically I need somewhere that will allow me to work when I can and be okay with switching the shift timings if needby. That shouldn't be hard, right? Wrong. Very hard to come by. And I get it. Why would you want to employ someone with so many priorities elsewhere? If there were many jobs like this, the competition would be hot. 

In my head I realize that my life is busy. Layla has a lot of needs. Every day requires me to be an administrator, a nurse, an advocate etc. But mentally, I struggle with giving myself the grace that I do "work".. the requirements for my family, require a lot more than the norm. 95-100% of the mothers I have met through Canuck Place are unable to hold down a job. Yet my mind continues to shame myself, to say that I'm lazy, and that I need to do more productive things with every single hour of nursing. Knowing vs feeling are so incredibly different. Why are we so hard on ourselves? 

The fact remains that I need to turn my brain off from Layla sometimes. To fill it with some totally unrelated information. And if I can get paid to do that, even better. I do want to be around for all her appointments. But I believe I can be a better mother if I have something small for myself.  The idea of getting out of the house, a change of scenery, to be social and to contribute seem so appealing. We go out and about often but it's only seeming to get harder. Many special needs parents can become bound to their home and I get it. Once the equipment and meds start to pile up, not to mention the weight of moving your child and taking them to most likely an unaccessible place, it often seems easier to just stay home. Thankfully I'm not quite at the point of it stopping us yet, and we continue to make getting out a priority for my sanity.

It comes down to me feeling content and thankful for where I am at. Nursing is never a guarantee and the hours may go down. We're also hoping to get Layla into preschool next year which will be a whole new world. The changes are constant yet sometimes very minute and easily missed. So for now I will keep searching for something that will work within my crazy guidelines and attempt to make peace with the fact that I am home for now but that doesn't mean forever.