Saturday, October 5, 2013

Day 5 of Down Syndrome Awareness Month!

I'm not even sure where to begin.  Today has been what we in our office at school refer to as a shit show.  It didn't start out that way.  In fact it started out just fine.  Tom and I were able to enjoy our morning while my mom had Tera and even had some time to get some things done that we had wanted to before she brought her back home.  

After my mom left we gave Tera lunch and I attempted to get her down for a nap.  My mom told us she should be tired, but she had also fallen asleep in the car on the way back home for about 15 minutes which for Tera, can be just enough to throw her off.  I put her in her crib, left her door open a crack, and went back downstairs to wait for her to hopefully go to sleep.  In the next ten minutes I heard her whine a little, but not cry, and every once in a while I would hear sounds of her playing instead of sleeping.  I didn't think much of it except that she still wasn't going to sleep, but there are times when she'll sit in her crib for a while with her stuffed animals and then just eventually fall asleep.  After about 15 minutes, I decided to go upstairs for something and as I walked up the stairs I noticed there was more light coming in her room than usual.  So I looked in and kind of freaked.  Tera was sitting on top of her changing table next to her crib.  Smiling at me.  She has never once even attempted to climb out of her crib, that we're aware of, and all of sudden today she just did it.  I just stood there looking at her and yelled for Tom.  As he entered the room she smiled and waved at him too.  We just looked at each other and thought, "well shit".  

Not only was she sitting on the dresser, but she was nowhere near sleep.  So we took her downstairs as I slowly started imagining all the things that could have happened and ended badly.  I decided that although I didn't want to encourage it, we had to figure out how she did it, so we brought her back upstairs, put her back in the crib, and waited the ten seconds it took for her to replicate the action.  And it was at that moment that we decided we needed to convert her crib to a toddler bed immediately because we know Tera and she would spend all her waking moments in that crib doing the exact same thing.  

So we started thinking through what we needed to do and decided we needed to run out and find a rail for the bed before tonight.  When we got home, Tom went downstairs for something and realized I had left the crawl space doors open after taking some stuff out earlier this morning.  And then he freaked out.  There was some kind of insect infestation going on and our crawl space floor was covered in bugs.  We immediately started calling exterminators to see who could get out her the fastest.  In the meantime, while we were both a little overwhelmed and grossed out by the situation, Tera was watching us and as she does so often, she started to feel the stress of the situation.  She got very quiet and dropped her head as though she had done something wrong.  

She's incredibly sensitive to situations and in the past few months has really started to react to things differently.  She gets very upset when someone around her is getting yelled at, even when she's done nothing wrong.  She senses stress and immediately wants to comfort you.  And tonight she was feeling it.  What really put all of us over the edge, was when in the middle of trying to find someone to take care of the bug problem, we discovered that the leak we thought had been fixed in our kitchen, wasn't, and we were getting water again.  At about this time, the thunder from the storm we were getting set in and put her even further on edge. 

Tom and I were trying to deal with the situations, both of us highly and visibly stressed and we had to make the conscious decision at that point to take a deep breath and refocus on how we were projecting ourselves to Tera.  Our very sensitive and sweet little girl was having a hard time coping with everything and so I left the chaos for a minute and just held her.  We don’t often both fall apart at the same time, but this was a unique situation.  Nevertheless, we also had to keep in mind that nothing was life threatening and we had to take care of Tera also.  As she went into full Tera mode, she laid her head on my shoulder, gave me kisses, and just smiled at me as if to say, “it’s okay mom; it will all be okay”.  And you know what? She’s right.  And we know that because of her. 

We’ve dealt with difficult things before as a couple, but nothing was or has been as difficult as dealing with her diagnosis and all of its subsequent related issues.  I held her, looked her right in the eye and told her that she was the reason that Daddy and I could handle anything.  That she had taught us that.  And she smiled at me again.  That kid is so amazing to me.  For as much stress as she can sometimes cause, she can also make it disappear in an instant.  Her face, her eyes, her smile, are all completely magical.

Right now she is asleep in a big girl bed.  And tomorrow I’ll tell you how I feel about that…

PS In case you hadn't noticed, I'm going back a bit for her pictures.  I haven't used these in a while and I just love seeing them all again, so I'm going to keep using them.  

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