Tuesday, June 05, 2007

A Rock as a Home

I'm contemplating just finding a beautiful rock and making my home right under it. I'd like to just be away from the world...enjoying my little family and listening to the rain. I would like to watch my child playing in the sunshine and exploring her surroundings. Oh wait.....my life is kind of like that! I love the days that I can sit and home and watch Emma. The mischief in her eyes, the way that she figures things out, the knowledge that her brain has continually growing. I wish that we could just lock the door to the outside world and pretend that everything was wonderful and perfect and gloriously glorious. Truthfully most days really are like that.

I know that I have a tendancy to write about the negative. For my own therapeutic means I have to write out the things that bother me. It is my way of "letting go". There are very few people that I discuss my woes with, but somehow letting all of the cyber-space world know about my life seems to be OK. I don't like talking to people about it because....let's face it....everyone has problems, right? Who wants to hear about mine? At least if you're reading about my problems you can stop reading...thinking Man this woman is psycho:). if I told you all of this in person you would be forced to listen to my incessant whining with a glazed over look on your face and casually nod your head and say "uh-huh" from time to time.

Today is a rough day....again. I usually only have about one/month. I think that is pretty darn good considering after Emma's initial diagnosis every day was black. Even on medication it was difficult for me to get out of bed every morning, put a smile on my face, and make it a great day. Every single day!!! I think that I am doing pretty good.

However, comments that innocent people (not SMART people) make can just crush me flat in an instant. It could be something that I have thought about every day since Emma's birth, but to hear it come out of someone else's mouth makes it real.....and sometimes I prefer living in fantasy. Real to me is scary and unknown. Today someone asked me if I thought that Emma would have to be placed in the severly special needs room once she is in school. Now, it is 2 years until Emma will be in school. Who knows what will happen in those 2 years.....who knows if she will even be with us in 2 years (yes, a bleak thought....but also real). However, I honestly had never had that thought! I had never thought that it might be a possibility that they would tell me that she HAD to go to the severely special needs classroom. I played it cool for the lady that asked, and as soon as I got in my car I felt all of the air escaping out of my chest. It felt like a huge boulder was being place on top of me....crushing crushing. I saw my life flash before my eyes....including my future life with my child. Hot tears sprang from my eyes as sobs wracked my body. NO, this is not my life!!! My life is living under my beautiful rock watching my child enjoy the wonders of the world. To hell with anyone who thinks anything else!!!

I honestly just try to live in the today. Here and now is where I need to be. I need to be present for my child and all that she is. I treasure every breath that she takes and value the fact that she is here for one more day.

Please let me know if you hear of any real estate with a simple yet beautiful rock that is big enought to occupy a family of 3. We would prefer one that has a sign that says, "We love to live our simple naive life. Please allow us to live in the today".


Crystal said...

I think that only once a month is pretty impressive. I'm sorry for the pain you are going through, but I hope you allow yourself it. I'm trying to learn to do the same thing.

Do you still go for transplant follow-up appts.? If so, maybe we can meet sometime and let our precious little girls play.

All my best,
Crystal (LF)

Ben & Bennie said...

Even if three years from now Emma has to start out in that severely disabled school room you will still find beauty, fun, and excitement.

And keep being yourself while blogging particularly when things get bad. You never know what sort of gem some reader will leave you here.

Jill W. said...

Have I told you lately that I think Emma may just be the most beautiful little girl I have ever seen! That little girl has a gift, and probably a lot of gifts but the one I know is she makes people smile. I can look at a picture of her and break into a big smile because she just looks like she knows something that none of us knows and she thinks it's pretty funny! She doesn't need words to express herself because her expressions say it all for her. I don't care if they ever do label her severely anything... she is severely cute and if they have a room for that at school, she will be in it!! Any other "room" will just be a room for her to grow and learn and become they beautiful women you know she will be. Forget the what if's because there are way to many of those and remember the gift we have already been given with our kids, that second chance. And if that's not enough we have some great rocks up here in Alaska and I will paint you a pretty sign to hang on it :-).

Anonymous said...

Angie, just wanted to say that I'm bummed I didn't get to meet you and Emma when we passed through Cody. (We didnt plan to stop but folks couldnt have been kinder.) Elias and Emma would have been a great pair. Take care, Christy

DDM said...

OOOOF. I understand. Someone asked me if we would "have Bugga castrated as an adult". HUH?!!! WHA??!!!! I'm still in shock over that one. I held it together for exactly 5 minutes before bawling my eyes out after she'd walked away.

A once a month bad day sounds like you ARE doing really well. I'm striving for that. :-) Thinking of your family!!!!