Good.

"Only months ago Layla didn't really do anything, look at her now." Words Layla's paediatrician said at yesterday's appointment. Kind of a funny statement but completely true. She was so thrilled to see and hear about Layla's personality shining through as she ages. It is truly amazing to watch this girl change. As I type this on my bed, I have Mumford and Sons playing in the background while Layla is singing (either that or just yelling) and kicking off my legs. Something I could only imagine before. 
I interviewed a lovely woman this week who is interested in giving us some respite regularly. She and I had met at water therapy a few months ago. At the time she was working with two twin girls 32 hours a week who were quite similar to Layla. Her hours have dwindled down with them because the parents are both at home for a while. After we met at the pool she said she was kicking herself that she didn't get our contact info. She then spent the next couple months keeping her eye on craigslist for an ad that sounded like us. The feeling that someone would actually search out to look after my daughter? Incredible. I had no idea we could make that sort of impact. Even this woman said to me, this doesn't seem like the same girl I saw a couple months ago.. She is so active.
On top of that some of my wonderful family and friends have generously come together to give funds to help with respite while we are waiting on the grants and government funding. Truly incredible. It is so heart warming to be on the receiving end. Of course, it is hard to except the help. But I do know (though I have to be reminded) how important it is.
So lots of positivity going on around here. Feeling the love.
I'm going to stop writing at that note. Focus on the GOOD.

Respite: Day 1

Today marks a new beginning. Today I had my first two sessions of respite. One hour this morning and now one this afternoon. A truly sweet nurse showed up at my door excited to have some time with a baby in comparison to the usual elderly care that she does. Once I gave her the rundown of medications, the feeding pump and the ways of keeping Layla pleased I felt comfortable giving them some space and moved into the front room. Listening in I could hear songs being sung and little noises of enjoyment from Layla. And I thought I can get used to this.
With a deep breath in and out I felt a wave of peace. A small weight off my shoulders. She is in good hands. I intended on going out of the house to a coffee shop around the corner for a true break, out on my own. But after an incident with the feeding pump going off and the nurse not knowing how to fix it, I decided that she, nor I, am quite ready for that. Hopefully by next week we can get there. Baby steps, right?
This is only the beginning.

Help is on the way!

I absolutely love all my nieces and nephews to pieces. They are the cutest, funnest, funniest little humans. I had the privilege to spent the last 4 days with all of them from my side of the family in one place.

I have a child who is unable to do anything for herself. Which leads to a lot of sitting on the couch, or rocking, standing by the couch. If you know me, you know that I am a high energy person, so it can be very difficult to for me to sit still. Two qualities, I always thought would make a good parent. With the 2 years of very lacked sleep, I'm getting better at this. When given the opportunity to be with other typical children who give so much back it's fills my heart, while breaking it. I spent the weekend chasing them around the trampoline, reading Dr. Seuss, climbing into the tree house/pirate ship to take off to the next destination, flipping rocks on the beach to watch all the crabs scurry away to another safe spot. Hearing their giggles and screams with the biggest grin on their face is all the payment I need. Though I can't help but yearn to do these things with my own daughter. I love her so incredibly much and I hate that her body and mind are failing her. I hate that she sits on the sideline while they kids all play together. 

Why do we not know what she has? What if there's something we can do to give her more abilities? Why us? Why anyone? This isn't fair. 

I don't know if I will ever be fully happy and excepting of her condition. It sucks to be that parent, and for her to be that kid. That doesn't mean at all that I don't love her. She is incredible and I will always find the best in her. But it is absolutely nothing like I imagined parenthood would be. Nothing like any person imagines it would be. We know special babies are born all the time, into some great, and some horrible families, but I have yet to meet a person who thinks it going to be them unless they already have a special child. I was that person. And now, believe me, I've had the thought many times "I didn't sign up for this." 

Things have gotten a lot easier in some senses, especially with Layla's irritability. And as we continue with doctors and therapies I believe it will only get easier. Once we are set up with respite, preschool and Layla is given a bit of her own life, away from me, I think we will set in to a fantastic routine with a healthy amount of separation. You see, there was a long time when we didn't think Layla would make it until two, so I felt my place was to be with her 24/7 to soak up every moment we had. Now, I'm not sure how long we will have her but in order to make it sustainable, she needs a life outside of me.  

The fantastic news is that we have been given a small amount of nursing support for the next 9 weeks to get us through until the government respite kicks in, in the fall. This week we will have a little home assessment so they can decide who would be a good fit to come in. I'm still deciding which is the best way to use my 4 hours a week. Working out, sleeping, laundry, showering.. All super important things to bring back some sanity in my life. Help is on the way. Finally.