The Struggle is REAL

It has be a hard couple of days for me. Last Friday night I flew into the airport after a weeks vacation in Mexico. You'd think I would be so rested.. and I was, for a short period. On vacation I was reminded what it's like to be your own person. To go places without thinking ahead of time of formula and medications and sterile water. My arms felt so light without Layla in them. I got to be so active, which is very important to me but I has become so limited in my every day life. Then on Saturday we drove to Canuck Place to pick up Layla. The first two days back with her were so great. She gave extra smiles and because of my rest, I had more patience for her neediness, through the night time wakings and during the long days when Aaron's at work. By Wednesday I started to feel down. Back to reality. My reality with my daughter. Where I spend so much time stuck on the couch alone in my thoughts. By Friday I couldn't hide it from Aaron. I was noticably angry, distant but not wanting to talk about it yet. Him saying he had to work Saturday didn't help. 6 days straight. ugh! I long for the weekends because it's so much easier when he's around. Just his presence helps because I can talk with him more than anyone else about the deep, dark stuff. What would I do without him?

My enemy is the mind. I honestly have no idea how to turn it off, or even slow it down. It gets pulled and tugged in so many directions. It's a vicious, overwhelming cycle. I constantly envision another life, changes that would make it better for our family. I've spent months scouring the internet looking at schooling for myself. Something to help me feel fulfillment and purpose. I keep thinking that when one day I am able to work again how I would love to have better options than I do now with my little education. Full time wouldn't work because we don't have respite for Layla. My only option would be online but I'm pretty certain that would be quite difficult to complete with the miss'. With that option I feel like your options are limited and I am really not sure what in the world I want to take. Also we'd have to come up with the funds, which isn't ideal right now after just buying a house, especially if i'm not very certain of what I want for my career. The mental pros and cons list goes on... When it really comes down to it if I was more motivated I would do something about it. I would go to the school and talk with a career counsellor or something. But instead I exhaust myself with google searches and kick myself for not having an education before having a child. Or for not being one of those artistic moms who somehow finds the time and energy to sew and sell baby clothes online.

My other readings includes a blog about different family's stories of medically fragile children and their grief as they passed. I know it's a horrible thing to be reading in my spare time but it draws me in. It makes me feel like i'm somehow preparing myself for the day, like it will help. Because it's inevitable. How can I be so morbid? You can't go through live living for the day your child will die. Though sadly, I think about it often. On a positive note, it is also a reminder that I am not alone. There are so many families going through similar and much worse situations. Surprisingly that tidbit of information helps me stay afloat.

When Aaron and I hang out with or watch typical kids it can make us feel very isolated. No one truly understands us. We can share a story or feeling but they can't possibly know the depth and reality unless they've been through it, which they haven't. Relating is hard. Aaron shared with me how he went to his brother's church when I was away. There was an abundance of young children there. He would watch them so actively move around, crawling and pulling themselves up on the chairs. They would talk and snuggle into their parent's shoulders, then squirm to be let back down. We have never experienced these very simple and every day occasions. And what we would give to. It re-brought up his bitterness and anger with God. How every dream of parenthood has been shattered. And unfortunately I wasn't there to talk him down. He tried to contact our pastor from Ontario, but no reply. He tried to talk to our counsellor through Canuck Place but she was unavailable. Ugh. Our luck. Then he went to visit Layla and met a couple families where they had decided to try for another child after they got the hang of their medically fragile one, only to have multiple special needs children. That didn't exactly bring any hope.

When people ask me questions about Layla. I have multiple routes that conversation can go, depending on the person and my mood that day. All the lines are down pat. If I feel like they really want to know I will give just enough realistic information that they can slightly understand but still having a positive spin because that's what people want. I withhold a lot. Fake it till you make it, right? Or avoid these conversations as much as possible. We are a year and a half into this journey. I have no idea what the future holds for us and our darling daughter. I'm not sure if i'll ever be able to be completely happy with the path that has been brought before us. And I certainly won't understand why in this life. These days i'm feeling like that could be okay. Maybe even expected. You can have both joy and sadness in your daily life. Perhaps this grieving doesn't go away. Perhaps it's okay to come and go in waves. Key word is waves.. do not let it consume you. I fear that I will.    

You don't realize that some of the best things in your life are going to come from the hardest.

Quoted from this video. Such a good watch.  It's a family of 6 that has two sons with fragile X syndrome. Quite different from our journey but their perspective was interesting from more of a hindsight.

https://vimeo.com/105766185