Emotional Tidal Wave

The last week has been very emotional for me. My paternal grandmother passed away and though it was "expected" and she is in a far better place now, it really makes one think about life and what you want from it.
Brycen did fabulous at the funeral home visitation and at the funeral itself. We were very uneasy with taking him as we never know how he will respond to various events, but I knew I had to have him there with me. I'm a little puzzled at how he could handle so many people at one time, the noise level, the new places, and the change in routine so well these two days, but other days he can be overwhelmed by just having two extra people in our home. One thing I have learned with Autism is that you just never know and won't until you try. I'm not saying the next time we have to attend a funeral will go as well, but all that matters is it went great this time and that really helped decrease my stress level. We just prepared him as much as we could with a bag of favorite toys and snacks, keeping him out of the busy areas, and going over many social stories on the way to each event.
The emotions of death in general came over me and just like most people at funerals, they begin to think about their own mortality and how it will affect their family. My grandparents had 8 children and all are still living and have their own families. There were many pews filled with the family in front and throughout the service, I kept looking around and wondering about how my kids will do at my funeral and if they will have families to surround them and help them through. It makes me sad to think that Brycen may not have that.
Before I go on, I want everyone to realize that I have kept these feelings in all week and it's taken a lot for me to decide to share these. At first I felt selfish for even thinking about my own mortality when I am grieving my grandmother. Then, I felt like it was best to just not think about any of it because I don't have control. My most recent feeling is that I am sure there are other parents of children with disabilities that also have these thoughts, and since this blog is supposed to be my way of sharing how certain things make me feel, I felt I needed to share this. I am writing all of this with trust that I won't be judged for these feelings and that this doesn't cause people to start commenting about how I just need to have hope and think positive. I do have hope...I have hope now that I never thought I would ever have when he was first diagnosed. But even with hope, a parent still has the right to wonder and worry about future events.
So, all in all...the emotions of not knowing if Brycen will have a family to hold his hand and comfort him through all of that is overwhelming. In Aubree's situation, the ability to have a family of her own is higher than Brycen's ability at this point. Yes, I know they are only 2 and 4 and so much can happen before those years are upon us. At this moment though, it worries me that the person holding Brycen's hand through that day will be a paid staff. Nothing against paid staff because I have been one for many, many years and the individuals that I worked with in the residential settings became like family to me. I know paid staff are a very important part of a disabled person's life...they help them take charge and conquer their obstacles, they give support to learn every day tasks, they are vital to a person who needs residential care. When I looked at the 8 families in those front pews, I also began to wonder if I was doing a disservice to Brycen and Aubree by not having more children. I know I have blogged before about how I feel like Aubree will have so much pressure as being the only sibling of Brycen as they grow up and maybe when they are older if she so chooses to be in line for guardianship and such. I know we aren't having more children and I know we are content with that decision, but I still wonder how that will affect the kids either when we are gone or when they are forced to make very serious medical decisions for us as we age.
Wow! I do have to say I feel much better after writing that all out. Though a couple other things are on my mind, those are much more personal to myself and to those people that they are about, and I will just leave it at that. I just want those that are choosing to be a part of Brycen's life and helping us through these ongoing emotions know that they are a vital part of us being a family and in Brycen's progress. Quite a few people have come a long way in trying to understand how our lives are different and to understand the obstacles that Brycen faces daily, and we are so grateful for this.