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.