Saturday, February 6, 2016

Who decides

I have been struggling with something for a while now, sometimes I think of it more than others. Most times though, it is a complete fabrication in my own head and there really is nothing to struggle with. 

You see, there is this community that we belong to, for quite some time now, but officially let it sink in when Willow was diagnosed with hydrocephalus. That community is the special needs community. We have a few kids that have different needs in our home; but all of our kiddos at this time (because with Willow you never know when or if it could change), are high functioning within their own needs. I have one kid with Asperger's and Sensory issues, one diagnosed with a medical condition that comes with all kinds of different needs at different times, that being Willow and hydrocephalus. I also have another one with Sensory Processing Disorder, differently affected from the one mentioned above. The reason I struggle though is not really the typical day to day struggles with all these kiddo's; though that is there too. The bigger struggle I have is accepting my place, or role within that community. Most days, I don't think about our family as being a special needs family; mostly because our children are higher functioning and you wouldn't know it. I feel that I don't want to take a spot in the support group, or lecture for fear that someone may need that spot more than me because their kids have more needs then any of mine do. Or there is the thought that I can't possibly relate because of the fact that my kids are doing well, and of course the deeper fear of being judged.

Then there are the days where the light shines through. Days where I feel like I need to be joining those communities, because without sharing the stories of greatness, no one would have hope. When it comes to hydrocephalus, my goal is to raise awareness, it seems to be that there is more knowledge about the negatives that go along with this diagnosis than the positives. So much so, that even the medical community will tell women to abort the babies at the initial 19/20 week ultrasound, when diagnosis is most likely found. Now, when kids with hydrocephalus can have a chance to live active lives like Willow, why wouldn't I want to join the communities that we can easily get into with her diagnosis and share that information. Someone may need to hear it.  As for the other kids, despite the high functioning, we too have challenges and they can wear on one person if there is no community to share it with. So, I am finding it a hard pill to swallow, but I going to look for the shining light, hold my head high and talk about all of my kids and their needs; because sometimes smaller needs can turn into big stressors. 

Tuesday, February 2, 2016

Random thoughts and babbling stories.....

Recently my days have been long. I mean, really, LONG.  Which can mean a few things; it could be it was a slow day, a day racing from here to there with no breaks, an exhausting due to lack of sleep type of day. Yet none of those really explain the feeling.  Instead, it is a feeling that while I know there are natural rhythms to the day, a schedule so to speak, it has been hard to do anything. It has been a long day of trying to get myself to do the things that need to get done.
I am starting to get into the busy season of all kinds of planning events.  Which is funny, because I went from not doing much, (I mean I still don't work outside the home), to doing all kinds of things to fill up my calendar; but it is within filling up my calendar that I had lost myself before.
Yup, there it is for you all....
Some people have a shopping addiction when things get rough, some go to drugs, or alcohol... I find a way to fill up my calendar. Why?? I am not exactly sure yet, there is something there I am sure; but I am not a doctor or therapist of any kind, and so would have no idea! LOL
I went from wearing not too many hats, to I am not even sure I can list off all that I am doing now. Some of it fills my heart with such joy, some of it I wonder why I have to go do this or that again. As we are beginning to shed some of our winter blahs as small glimpses of spring hope arise, I am realizing that I need to now figure out what my year will hold. Not in an all seeing, I have to plan each month, figure out what I am going to do with my life sort of way. Instead in a way that will allow me to say no to the things that are not filling my heart with joy, and yes to the wonderful things that will fill my heart and soul with happiness and joy. There are still things I find that I need to work on almost daily, sometimes only weekly. But it is within those things I find that I either let them control my day in a slow, long, bad way - or I can look at them as a challenge to make myself stronger in the end. It is hard on the LONG days to look at it as something good. Such as Orion trying all of my buttons more than once in a day. It is teaching me patience if I don't go off on my two year old; but some days, I just want to scream!!

So, today I choose to look at my calendar, and find focus again. Find the happy, heart filling with joy things that I love to do and make those my priorities. :)

I wish all of you who may also struggle with finding that place in your life, strength each day to say no to negative, and yes to the positive.