Shadow Monster(s)

First off, this is not a cry for help or even support. I often purge my brain in this way towards the end of working through whatever 'thing' I'm struggling with. Then I post after the fact to hopefully remind other parents that they are not alone...to give them the company that I know I seek when I'm in the weeds. I always want to be transparent on this blog - I try to make this as open a book as possible. I know when I'm in the depths of it, I find hope in reading about other parents who struggled/are struggling in the same way. (Kind of a misery-loves-company meets strength-in-numbers.) And while I am 100% Team Ruby, and a firm believer that we are The Lucky Few, I never want people to think that things are always perfect or good. With all that said, here we go...

Demons. We all have them. Mine are so tricky that they hide in the shadows for extended periods of time, making me believe that I've outrun them only to turn a corner one day and come face to face with them again, usually much larger than they were before. And these demons, they are ugly. They are SO ugly and they expose a broken ugly side of me that I'd like to ignore. I think that's part of what gives them so much power over me; their ability to remind me that these demons are here because I let them be here, because I maybe even create them.

I am realizing that there are times when I realize that I'm still going through the grieving process of Ruby's diagnosis. Not the cancer one; that would be the easy one for me to deal with because that makes sense. Of course cancer sucks (*sucked*); no one would disagree with that. And there was not much I could do about that diagnosis...take her to the hospital and pray. It was out of my hands.

Nope, I'm talking about the Down syndrome diagnosis. Lately I have found myself still in the grieving process of that. I guess it's silly that I might have thought we'd be past it now or something. I love Ruby and the community we're in, but that doesn't mean it's not different than what we expected. And that still hits me out of the blue sometimes: I grieve her not being the child I thought she might be. Which is stupid and crazy because our family is what it is because of (the awesomeness of) Ruby.

I really don't feel like I try to compare Ruby to others, and I know, I preach!, that comparison is the thief of joy. But so many times lately I am hit with a side-by-side that I wasn't looking for and it takes all of the wind out of my sails. Sometimes it's a comparison to a typical child and sometimes it's one in our T21 community. Honestly, I feel like it's so unexpected because we strive so hard to help our kids have everything their typical siblings have in the way of experiences and education. And in that pursuit I think it's easy to forget that sometimes we have to adjust our expectations. At least that's true for me....some of these things that I'm feeling defeat in are things that maybe weren't realistic for Ruby right now, but I forgot that as I got caught up in the attempt.

Let me tell you that the shame and self-disgust associated with acknowledging all of those feelings -  the comparison, the defeat, the self-pity - is currently fighting the crazy grief for top billing in my head and in my heart.

There are still times when I catch myself somehow hoping that certain things linked to T21 are behind us, even though I know they aren't and won't ever be. It's not like she's going to outgrow it, not that I necessarily want her to... But my goal-oriented, selfish side takes over sometimes and tries to expect that we've worked hard enough for *that* to not be an issue anymore. Or that we should not have to struggle with *that* again. (Insert *that* immature or undesirable behavior, or hard hard fine motor or gross motor or speech struggle of choice. I can give you a long list of ones I let stumble me if you need help coming up with one.)

And I'd be lying if I said I never found myself watching another five year old and parent with a deep longing over the ease at which the child plays, dresses themselves, conveys their thoughts, eats, toilets, walks through a store or a restaurant. I have turned into this crazy helicopter mother that I thought I'd left many years ago when Eli was still a toddler. Because I don't know when Ruby will leave the group and not come back. Because I don't know if Ruby will get herself to the bathroom in time. Because I don't know when Ruby will need me to pull her off of a friend that she is hugging so hard that the child gets knocked to the ground. Because I don't know if she is going to get too rough with a dog we see on a walk. Because I don't know what is going to happen next and her actions are ones that her peers will remember long after she's forgotten and I don't feel I can risk her alienating them. Not because we don't work on these things - our list of daily 'reminders' and 'work-on-it' is so long that it makes my head spin.

As a true Type A, because I am so focused on goals and meeting them, all of this stumbling is something that breaks me more than I'd like as of late. There are days when I feel like this paper-thin fragile shell of who I was, of who I want to be because of how easily I'm disheartened. I haven't been in the typical work force in 13 years, so my day-to-day focus is almost entirely the kids. I know better than to measure myself off of my kids' accomplishments or behavior, and I think I do a pretty good job of that when it comes to the bigs. But with Ruby, my daily 'job' is more intense and more involved than it ever was with Eli and Maddux. Or at least it's intense and involved in a different, very different, way. So when she misses the mark on things, without meaning to, I absorb it like a huge blow to my ability. I can't seem to get myself out from under the inadequacy I feel after several of those a day.

I feel like I spend so much time, energy and hope on 'games' and flash cards and research and therapeutic practices that I can use in her everyday life. It's a lot of pressure on her, I know, but she is such a rock star that she performs for me and makes it look like she's loving every minute. That pressure on her also equals pressure on myself. Because if it doesn't pan out, if she doesn't behave in the way I think she should, if she doesn't meet the next developmental stage, my trust in the process is shaken. Immediately I'm filled with doubt of my efforts as her therapist and teacher, and doubt of my ability as a mother. Literally, if she doesn't meet a benchmark, or displays negative behaviors, I mentally make check-lists of things I should be doing instead of what I'm doing. Or I go through her toys and over analyze it's value as a toy that is furthering her or holding her back, developmentally. I don't do this at the end of the month or even the week, but in the moment, which means I'm in 'revamp' mode more often than not. My brain goes into overdrive trying to find 'the solution' (as if there is a solution for any childhood bump in the road). I'm telling you, it get cray up in there!

Hello, enemy. Hello, demons.

I know this is not what I need to be giving in to. I know these thoughts and words are not of God, but instead, against God. And I also know that I am being grown, yet again, stronger is some way. I know that one way or another, this will help me to refocus my efforts and love and loosen my grip. But dangit, it's hard. And hard does not always equal bad. Sometimes hard is just hard. But that hurts. It hurts when I watch the video of her and I on the practice bus ride and see her excited smile as she said, "I like it.", only to have her choose to behave in a way that prevents her from being able to ride the bus less than a week later. It hurts when I see her get so excited to be with friends that she acts in ways that make them not want to be around her. It hurts when we put so much hope into something - anything - only to have that hope dashed. It hurts when I spend a moment marveling in her awesomeness only to step foot on a playground filled with kids her age and feel deflated when I see and hear them effortlessly doing and saying things that are so far out of her reach right now. The highs and lows hurt. That is probably the biggest hurt because it means I have to acknowledge that I am the one making the comparisons. Ugly. Ugly. Ugly.

I apologize that this is all over the place, rambling, and possibly out of order (but, again, the 'cray' of my brain). This is the raw, this is the real.