Do I Make It Look Easy?

It's not. And if you answered yes, I'm sorry. Really.

We all do the best we can for our kids. Parenting requires a lot of our energy. I don't know many parents who say it is easy being a parent and even less parents of children with special needs or who are medically complex (or both) who say it is easy.

A few months ago a friend I met in an on-line support group for one of my daughter's conditions told me I make it look easy.  I'll say it again. It isn't.  And I'm sorry if any of you ever wondered why it wasn't "so easy" for you as I may have made it appear to be for me on the blog.

It is fantastic to have the support of other parents going through the trenches. We look to each other to feel a sense of belonging and understanding because being the parent of a special child can be isolating. Sometimes we feel like the world just doesn't understand all the additional pressures and concerns we have on top of regular life. The risk of social media is that we see the best part of people's lives and not the hard or ugly parts.

I am pretty good at taking pictures and combining those with words to tell a story (if I do say so myself). I've tried to write about the difficulties I experience as a parent but I think that in contrast to pictures and the good times it probably has seemed insincere or insignificant. Truly, I could take pictures and write about anyone's life and portray it as wonderful because there are wonderful parts in everyone's life as well as real true struggles.

The truth is that I feel overwhelmed a lot by the task of raising Ainsley in the way that I know she needs and deserves. I find it challenging to maintain balance between her needs and those of my other two wonderful children. Other times I just don't know what to do for her and I feel lost and confused.  It has been difficult on my marriage and I have sacrificed a great degree of my own sense of self. This isn't healthy and it makes it hard for me to be the kind of person I want to be. I'm trying to be better about being honest with myself and making my own needs a priority. Sometimes I do crazy things that aren't a great use of time, like throw a big party or start a decorating project that I don't have time for. I think we all misuse our time sometimes, just in different ways.  Sometimes I even think blogging is not the best use of my time but then I will get a message from someone who says they've been reading and Ainsley's story has given them hope for their child. That is why I continue to blog. I no longer stay up late in the wee hours of the night to write like I used. I have to protect my health, both physical and emotional for the long haul.

In the future I plan to write more about what we are doing with Ainsley because she is the reason this blog exists. There are always so many things going on with her that I never seem to get around to blogging about, like her AAC system (which I'd planned to review since we got it in 2012), therapies or skills we're working on. She is a part of our family so naturally there will continue to be photos of our family, and it has been convenient to be able to share those with our other family and friends, but the way I do that may change a bit in 2016.

For now I am trying to get on top of the details in my life, mostly Ainsley's stuff like deciding on an AAC system, new IEP goals, medical and equipment follow up (I should be buying her forearm crutches right now), improvement and more consistent implementation of our home therapy/education program, as well as some personal stuff. It feels like this.

I would conclude this post by saying there is one thing that is easy about my life and that is loving Ainsley. Although that is very often true that wouldn't be a full truth and since I'm being honest that wouldn't be in the spirit of this post. There are plenty of times that she frustrates me and I lack patience with her or I feel resentful about aspects of caring for her and just wish things were easier. For her yes, but also for me. I know that her life is worthwhile and therefore everything I do for her is too. Knowing something in your head can't always change the way we feel. It is human to feel complex emotions about complex things. So instead I will end with a quote:

“Do not pray for an easy life, pray for the strength to endure a difficult one.” 
― Bruce Lee