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.