Becoming Human

I just finished this book called "Becoming Human" by Jean Vanier. Jean is the founder of L'arche, an international network of communities for people with intellectual disabilities. I highly recommend it for anyone interested in a new perspective on people with disabilities.

"So many people with disabilities are seen by their parents and families only as tragedy. They are surrounded by sad faces, sometime full of pity, sometimes tears. But every child, every person, needs to be celebrated. Only when all of our weaknesses are accepted as part of our humanity can our negative, broken self-images be transformed."

Whoa.. it's so sad but speaking from personal experience, so true.

Sometimes I will feel sorry for myself and all the extra responsibilities it requires to care for Layla. When overwhelmed with appointments and simple tasks made difficult such as having to carry her up and down the stairs, and consistently entertaining her, I get frustrated. It's quite selfish, really. Focusing on how bad this is for me. But lately, it doesn't take long before I have these "a-ha" moments, where I take a step back and look at how far she's come. I'm so thankful for her and her personality. I'm trying really hard to celebrate her on a regular basis. She deserves to be celebrated.

Unlike a typical two year old Layla needs you to present opportunities to her. She is not able to grab your hand and pull you over to the toy she wants to play with. If not given the opportunity she would be fairly content just laying on the couch over your lap, if you acknowledge her every so often and hold her hand. BUT given the opportunity to do more, we are seeing that she is actually quite a bit more capable than you would think. For example; we have sung head and shoulders to her since she was a small baby. I think she enjoys having other people move her limbs for her because it is so difficult to do on her own. In the last month or so, if you go through the first verse -"head and shoulders, knees and toes, knees and toes, knees and toes.." and then stop and wait, we have noticed that sometimes she will start to move her hands up only the slightest, to try and get them up towards her head and let us know she wants to continue. This probably seems so small, but I think it's truly a miracle. At first I really doubted that that was what she was doing (and sometimes I still doubt) but I've begun to decide that it is important for us to encourage and believe in her. What harm is it if I'm incorrect? Maybe it is an involuntary movement. But how encouraging is it when we do believe? Who knows what is going on in her brain development?

I saddened for others who don't get the opportunity to see her in her elements. When she's at home and laughing her head off at my fake cough, or smirking at the wind blowing on her face as she pull the fan from her toy. When she looks you in the eyes and smiles... there is nothing like it. Life has not been easy for her but it's only getting better. With us taking that extra step to think of what we can do to help her communicate and be involved in whatever everyone else is doing I want to see her flourish. May she teach me to love more, have more patience and just be a better human being. 

Watch a movie with her cousin :) 

New Year, new generosity.

Happy New Year. First post of 2017. I'm actually excited for this year. I feel like a lot of good things are going to happen. With 2016 ending fairly positively in our lives, it has given me hope for a season of rest and allowing some hard work to be paid off. Layla has been doing so well lately. Sleep has been fairly consistent with a 6-7 hour chunk at night.. whoot whooot! That alone makes a world of a difference.
Layla has stayed so healthy through this winter, knock on wood it will continue that way. She barely has had colds and NO hospital stays. Last winter, I swear she was sick the whole time.
Next week we're getting trained on a suction machine to have around the house when Layla is choking on her secretions or vomit. This will help take away the stress for her and us when she is struggling to get these liquids out of her mouth and throat. These episodes have been a bit more scary the last couple months.
We have the van in our hands which has been a total life changer. We are so thankful for everyone that has given toward this van. Never will I forget the generosity of others because I will look at the van and know we couldn't have done that on our own. The plan is to pay the van completely off in the next couple months. The Salt Spring Island Driftwood newspaper just printed a story about the need for our van. Plus, the second burger and brew at the end of this month should bring us pretty close.
In other news we were chosen by a family, through Canuck Place, who recently lost their 9 year old son to be given a pretty fancy hospital bed (we're talking $10,000 fancy). Obviously it's horrific what they have been going through in the last couple months... and it hits a little too close to home.. but they are so generous in deciding they would give away his equipment to other families. They said they understand the need and cost involved in raising a special needs child and couldn't imagine trying to make money off of those things. The bed is coming from Kamloops and at first we were quoted $800 to have it delivered by a moving company. Which was really disheartening.. but then she posted on a community site and a company that was coming down for a conference in Vancouver said they would attach their trailer, pick up the bed and deliver it FREE of charge. Wow. Again, communities are amazing. They are dropping off the bed today! Fingers crossed they can get it up all the stairs (we really didn't think that through when we moved in almost a year ago, I mean Layla was so small and light still then). The bed is 250lbs. Another heavy thing to add to our home. But this should only help with sleep. Having the electric incline for the head and foot will help Layla be the best supported through the night and help keep reflux at bay. The mother told me it made the world of a difference for her sons sleep.
Layla is getting a new manual wheelchair in the next couple of weeks.. which will make transportation even easier. Then in a couple of months we will be having the trip to UCLA... I feel like the list keeps going.
I'm feeling some peace and joy in my heart that I haven't had for a while. And oh man, I hope it sticks around. What else will 2017 bring?