At the time I only worked part time, and that would be all that I could manage, since so many of our days early on were spent going from one specialist to the other, physio, occupational therapy, the genetics doctor, the urologist, the list goes on. Haley also had bladder reflux, which required on going attention and later surgery to correct. At age two she had a second surgery to correct an interior ectopic anus. I can tell you this surgery scared me more than correcting the bladder reflux, because I know there was a small chance that this could be a cause for Haley not being able to have babies. We won't know of course until she is ready to try.
Currently, our biggest challenge is the day to day that comes with Haley's learning disability. These days I think I manage quite well. When I worked full time, I hit the nearly 10 year mark where I just could not do it anymore. I hit a wall. I hit that wall so hard, I felt it full force with my whole body. Inside and out. I was diagnosed with generalized anxiety and panic disorder. It was time to quit and learn where to put my focus. I still struggle with it daily, but these days, Haley's learning gets my full on attention.
It has been nearly two years since I gave up my full time job, my career for the previous 10 years. It was one of the toughest decisions I ever made. It took me a year to make that decision and when it was all said and done, I cried. I cried allot. It also took me about 6 weeks to realize that I was not going back. Well OK I did go back part time but that was short lived. I quit once my mom needed to go for surgery. I quit for good. I needed to go back, to learn that I was done. Done, not with the company, but with any job outside of my home. It just was too soon.
"So what does a typical day look like?" Why is that such a difficult question to answer? I suppose I don't want to be judged, I don't want to be stereotyped as a typical stay at home mom, and I certainly don't want to be made to feel like I am not accomplishing anything.
Why is it that we can't seem to say "oh I am not doing too much these days" and be OK with it? Society has developed an all or nothing attitude in us. If you are reading this and you happen to be one of the people who have asked me this question, please don't feel bad. You having asked it, gave me something to think about and something to write about. It truly is not even the question that is difficult, it is what is in my mind that is the challenge.
The first time I answered that question, I felt like such an idiot, my answer surely making me look and sound like a fool. I wish I could say that my days have some kind of consistency to them, some kind of concrete routine to them, and have some kind of substance to them that is easy to describe. When I stopped working, I was hoping to learn the art of taking time for myself and learning to take care of myself. I suppose essentially I have allot of time to myself, the taking care part is a learning process. It could be something as simple as the snacks I make for myself, and how they differ from the thought and care I put into the snacks I make for Haley. Should be simple, but it's not.
I do know that being off work has afforded me the time and brain space to accomplish some things that I never seemed to be able to do when I was working. I have been able to find programs for Haley to be a part of, I have organized Haley's home schooling work in a way that allows her to stay on track and not be overwhelmed. I have utilized resources that are available for us to take full advantage of. The thing with resources, is they are great only if you can find them! And finding them takes so much time. Most of all I am learning. I am learning to be a better mom, I am learning to teach my child, I am learning the in's and out's of advocating for Haley, I am learning to understand how her brain works, and I am learning that no matter what, I will just keep going!
Now, I embrace the time I have. It has allowed me the freedom to embrace life for what it is, to face it head on and to connect with those I care about. To be present.
When Haley and I see real change, feel real understanding, have moments of real "I got it!", I no longer care when the next person will ask me what a typical day looks like for me. The reality is, my days have never been, never will be typical. They will be forever changing, forever evolving, always about learning, growing, being better. I hope eventually I will learn to have more days that are about me, my growth, my personal care. In the end, everything I do will come back to me. It will come back to me in the eyes of my daughter, in her growth, in the love and happiness of my family.
Oh and if you are one of those people who have asked me what a typical day looks like for me these days, I know you only asked it because you are curious, and you care. So thanks for asking it, and thanks for caring.
Always, thanks for taking the time to read......