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.