Not Spoken

I know this blog is mostly a list of all the places we go and the people we see but sometimes I just need a place to release my emotions. I have fought with myself about doing so publicly because I don’t want people to think that I am looking for pity or that I am upset with how our lives have been changed.

I simply want this to be an accurate accounting of our journey through life with Averi. So, after much debate, you are going to get it all. Hopefully this will be a place where others can find empathy and peace with the knowledge that they are not the only ones out there who have thought the same things.

There are often things on my mind that would be totally inappropriate to say out loud, especially to someone who doesn’t have a child with Down Syndrome. Sometimes I sit and examine Averi while she sleeps and wonder what she would look like if she didn’t have DS.

I know she is truly beautiful but she would be different without it. I wonder if I would be able to recognize her. Would her eyes still show so much emotion? Would she still look so cuddly? Would I think she was more beautiful, or just different? What would her mannerisms be like?

It’s not something she has, like a disease, it’s who she is, so I cannot separate the two and make her a person without it.

She is still so small and sometimes it seems like her life is creeping by, but that doesn’t stop me from wondering where her life will take her. I don’t worry about it quite as much anymore, but it bothers me that I might have to bury one of my children. That’s not fair. No one should ever have to bury their child, no matter how old they are. She’s had a rough start but I think she will live a long and happy life. I just don’t know what the definition of “long” is.

The other day at church I was filling out a survey about myself. One of the questions was to list what I want to do before I die. Without even hesitating I started to write “see all of my children be married in the LDS temple.” I stopped half way through because I felt so stupid. Of course that won’t happen.

It is my hope that Averi will one day have the desire to be baptized into the church and then to enter the temple but I don’t know that she will ever get married. Ever since I was little I have wanted to be married in the temple, which I did, and then to have the same for all of my children. Sometimes it is really hard to accept that life isn’t a fairy tale and it’s not going to end up the way you always planned it would.

I was so taken back by the situation that I wrote something dumb like “care less what other’s think of me” which isn’t even something you physically do, like the question was looking for. Just for the record, life is different, but it still brings happiness…I just have to get used to the new scenery.