Special Needs Mom

Pity-Party? Nope. Rant/Vent? A little. An outlet for frustration and Emotion? Absolutely.

I don't have Autism. I don't have Down's Symdrome. I don't have ADHD. I have Epilepsy. There are so many children with special needs. There are programs and support groups for the parents and the children. That is great. But, what about a special needs parent? I did a Google search for "Mom with special needs." I only saw sites and blogs for Moms who have CHILDREN with special needs.

As a child, I had seizures. So, MY Mom had a child with special needs. But, my Mom wasn't the one with the need...I was. Now, I am a Mom AND I have special needs. I do remember talks with teachers on what to do if I had a seizure. My desk was moved to the end so that if something happened, someone would have better access to me. I had to take medication and have regular bloodwork. That is all I remember. I honestly don't know what my Mother went through. I do know that she witnessed the first of my three seizures...all of which I vividly remember. Now, I am a Mom AND I have special needs. I can tell you from experiences sides of this topic. It is much more difficult to be an adult with a special need than to be a child with a special need. As a child, I had my Mom and my Grandparents. As an adult, who happens to have a successful career and family of my own, I have no one. There is no one to think for me, do for me, and make sure I am taken care of...but, me. I do have a small support system. Steve does what he can and so does my Mom. Deb (Dom's Nanny) will take me to the store or to get DOm's haircut. I am sure she would do more, if I asked. But, it is amazingly difficult to have to ask people for help on a regular basis. So, I don't.

You can only use your resources so much before they become exhausted. Forget what I WANT to do, I struggle with coordinating what I NEED to do. Every week I wonder how I am going to go to the grocery store and to a Doctor's appointment. Forget the fact that I would like a few minutes to myself. Perhaps, to walk around Target on my own time. Or, to go shopping for clothes...since I have dropped so much weight since my seizure. I have always been a very independent person. This is definitely a new and un-welcomed challenge.

I am, however, SO VERY THANKFUL that my employer is so understanding. I can work from home. I was already a remote employee. So, none of that changed. I can do just about everything I did before. I just can't drive to visit customers. BUT, I do have a small list of people I can pay to take me out of town. That is good. I haven't had to do this yet. My company will also hire me a driver if I need one. I am trying hard not to have to do this. So, I am really doing well with work stuff. It is the personal stuff that has been a real kicker.

I do have a very understanding partner. He picks up my medicine and will bring me dinner, if I ask. But, coordinating time for him to do things he would like to do or things he needs to do is also very difficult. We have to care for our toddler. Who, by the way, deserves the right kind of attention and care. We have a great Nanny for him. But, she is available to us while we are working...and sometimes we get a free night. MUCH APPRECIATED. But, what about duties and responsibilities as homeowners? Yard work, laundry, cooking, cleaning, building a fence? No time for that. ANd, after all the duties and responsibilities as parents and homeowners, who has time for a date?

We all need an outlet of somekind. Neither of us are getting what we need. I am sure Steve would like to play golf and I know I would love to go shopping and spend some time with my favorite spa-girl, Jen. I would even settle for 4 hours of silence on a weekend so that I can finish weeding my flowerbeds and properly clean my home.

I REALLY miss my Grandparents right now. They were two of the very best people I knew. So selfless. Maybe they spoiled me. Maybe. But, they would be here RIGHT NOW helping to make sure that we were all taken care of. They were so good at that. And, once I am back on my feet...er, behind the wheel, they will be my driving force for a future endeavour.