As you will see by the date of my last post, the good intention I had of starting and maintaining a blog about life with Maclain fell by the way side. I have wanted to do a blog since he was born, but the CP, doctors appointments, Chase, life, work, therapies etc etc got in my way.
BUT, I am committed this time to make this a go! I need it for my sanity, and I hope that everyone one who reads it gets a laugh, or some new information, or sheds a tear, or is able to relate something I have said to their own life.
I figure if I can start running and have kept it up for over 4 months now, I should be able to find 20 minutes a day to record the goings on in our life. I have also decided that going back and trying to capture 2 years worth of our experiences might be a little tedious, so I when I have a post that may allow for some past history, I will be sure to include it.
So, without further ado, he is the first of the new posts!
It seems that most of the blogs I follow have a "thing" that they do, that makes them a little unique, so my "thing" is going to be that I will start each new post off with a rant of some sort. It might be related to a therapist, or a doctor, or my husband, or Chase, or the dog, or the guy who cut me off on the highway, or the rude barista at Starbucks. But I figure if I can get a rant out of the way early, it will make the rest of the post more pleasant!.
I can't even begin to articulate how I feel about this topic. How hard it is to know that we, along with many other families are sitting on a wait list for SSAH, some up to 2 years, while a 16 year old mother of 3 by 2 different baby daddies uses her welfare and other gov't funding to buy smokes and scratch tickets. There has been no "new" funding for SSAH for a few years now. Any money they receive each year goes to the people who are currently receiving the funding, which leaves nothing for the "newbies". It's not like we need this money for hot tubs or european vacations, we need it for respite care, therapy, equipment etc etc. But, so long as that 16 year old gets her smokes, I guess I shouldn't complain about the inequalities in our funding systems.
Did I mention how I feel about the government grants being given out to researchers to monitor the fertility cycles of the naked mole rat, or something like that? How about more research grants to cure cancer, or use stem cells, or something life changing? But what do I know?
In case you are curious, here is a link to the SSAH program.
On a nice note, I am so excited to see Maclain using more switch toys. We have been working to find ways for him to communicate and express his wants and needs while we work on his receptive and expressive language skills. He has been using computers a modified mouse, and something called a Big Mack switch ( how fitting) that we can record messages on. As an example, we can record" more bubbles, bu-bu-bu" and when he pushes the switch button, the message plays and I blow more bubbles for him. His face just lights up!
We use his left foot ( yes, that is a movie, how ironic) because his control and tone in his lower half is so much better than his upper half. So for the purpose of consistency right now, this is how we use them. We are working to evaluate what the best system will be for him going forward, but for now this is pretty exciting and fun too. How nice it is for him to be able to activate his own toys without us doing it for him. He really is learning the cause and effect of things now.
As for me? I ran over 7kms yesterday with my good friend Laura and it felt great. My life has been so out of control for the past two years, and continues to be out of my control, that running gives me some sense of control. Plus I get 40 minutes or so to myself with my thoughts. Some days they are good thoughts, most days they are hard thoughts, but either way I am able to explore them without someone bugging me.
Ok, off to get Maclain up from his nap, and then figure out something creative for dinner.