My blog has been ignored for a long time. There is still so much I need to write about Miles and his adoption. Today is just not that day.
I want to talk about the journey of being a special needs mom.
I have been a special needs mom for 8 1/2 years, so this is not a new thing that came with Miles. I have been taking a child to therapies, seeing specialists, and attending IEP meetings for a long time.
Some days, I just feel like I have this all in the bag. I can do it and I don't need help. Today started that way. I got Colt to school, took Miles to work with me, and called customers for almost an hour with Miles in my lap. Then I took him to his neurologist, where I discussed his seizures and brain surgery and multitude of medications like a veteran, then held this thrashing 56 pound 7 year old in my lap for blood draws. We then went to lunch and did some shopping with him on my hip because he just can't walk that much and I left his wheelchair in the car. (See? Rookie mistake.) Afterwards, we picked up big brother from school and I came home and unloaded the week's groceries. It has been a very busy but productive day.
AND THEN.
Then I got on Facebook.
I have a love/hate relationship with Facebook. I love it because it connects me to people and in a strange way, I feel like I am not so alone. Then I hate it because I see pictures of people out DOING THINGS and GOING PLACES. Together. Out with friends. Weekend trips. Out on dates.
It hits me like a ton of bricks just how isolating this special needs life really is. When Colt was younger, I remember a group of moms and kids from church getting together on Wednesdays to play. We could never go because it was always during Colt's speech/PT/OT sessions. Eventually the invites stopped. Same now, five years later.
Very, very few birthday party invitations come. As a matter of fact, it's been about a year and a half since Colt has been invited to a birthday party. I hate that for him so badly. If he has noticed, he hasn't said anything but I know he will notice one day. At the same time, birthday parties can be very overwhelming for him. It's so hard. To not be invited and get his feelings hurt or be invited, go, and get absolutely overwhelmed? What's worse?
I know this is a mess of a blog, but life is so hard right now. There are lots of tears. I am exhausted. Miles asks the very same questions no less than fifty times a day. He is closer to my side than my own shadow at all times. Colt cannot be left alone for even a second because he's so impulsive and he might spray your garage with cans of spray paint or lock your doors so you have to have someone remove the doorknob for you, or dig holes into the leather of your car doors. (Yes, those things really happened.)
Life is hard for all parents, I know. However, it's different for special needs parents. It's not just a season. It most likely won't be over in a few years. It's a lifetime.
Check on your friends with kids of different abilities. They still want to be invited, even if they can't go.
