rettsyndrome.org

Image Map

Wednesday, July 6, 2011

Half Full or Half Empty?


People are always asking this question, to try to label you as an optimist or pessimist, like there is only one answer (HALF FULL!!!). But the truth is it's always both. It's half full and half empty and couldn't be one without the other. At least that's how it feels in my life these days.

Tonight around 7:30 as Im getting dinner ready I look outside and see my almost 3 year old son playing catch with his dad on the deck. Nolan is wearing only pajama bottoms. Just as I peek out they exchange a high five and I smile to myself. It is such a special moment and Im glad to have seen it because its a "half full" moment. Then I remember my nearly five year old daughter is already asleep in her bed because she has to take medication to fall asleep. In fact she takes three medications daily. She should be out there with them playing. But she can't. Half empty. But still I stare out the window and that half full moment is still there. so, see? It's both.

This weekend we once again headed out to the fantastic party the golf club we belong to puts on every year. We have been going since before we were members and before I started playing golf this party was a major deciding factor when we joined. I dont remember if we went when Avery was 2, but Im sure we did. I know we went at nearly 3 because I have some pictures of her having a blast by the bounce house eating ice cream. Last year we had our amazing sitter ready to come pick her up after we go there if she wasnt doing well. As soon as we got out of the car, she lost it. We almost had to drag her up the hill to the registration table. I made the call and once her sitter arrived, she was fine. I was bummed she couldnt stay and enjoy the party. so bummed. half empty. But Nolan had a blast. He ate ice cream and bounced the bounce house to death. half full.

This year, we had the same plan. I wanted Avery to come with us as a family and enjoy the party. At least get some ice cream. But as soon as we got out of the car-lost it. again. As we are walking through the parking lot in the 100 degree heat she is pulling on my arm screaming and Im sweating. She is sweating. We dont even make it to the registration table. Avery has thrown herself onto the sidewalk squawking. I text the sitter and she is on her way. Again, once Avery sees her she is fine. I go in to the party to find Red and our family and friends. I cry a little behind my sunglasses. I get some good advice then I get a beer.

We had a great time. Nolan had so much fun. He was red in the face within minutes from the bounce house. He waited in line for a balloon animal. He danced his little tushy off. He ate a pretty good dinner. He got cotton candy. He loved the fireworks. We had invited some friends this year and sat with them on the golf course to watch the fireworks. Its a great show and so close to where we sit. There is nothing like it. So, Im laying on the grass surrounded by some of our closest friends, my husband and my son. The weathr I look back at Nolan's face which is just pure wonder. The weather is fantastic and the fireworks are beautiful. And my heart is so full. My life is so wonderful in that moment. But then, Avery is not there. Again, half empty.

Im not sure if it's because my heart has been broken so badly by Rett syndrome that I can appreciate these tiny moments so much more, or if it is just what happens when you become a mom. But there is almost no in between these days.

I do experience half full moments with Avery too. There are many of those. Many moments when we are so proud that we unexpectedly laugh and cry at the same time. And times that surprise us-like when she did just fine at the 4th of July parade and laughed when she got candy thrown at her.

I just hate that she can't be a part of it all, all the time.


5 comments:

The MacDonald Family said...

Oh man can I relate - yep, feeling the same way, especially this summer when all the kiddos are home and together - kids running through the sprinklers 1/2 full, Annie screaming on the couch 1/2 empty. Hugs!! I LOVE the picture at the end - precious!!

Em said...

I think we all have those half empty/half full days! I always feel bad when times like these happen and scream that I hate Rett. It not only has robbed her of a normal life, but has robbed us a life of what it is "supposed" to be like to be parents...and siblings....it crushes me everytime! Lots of hugs!!!!

Kelly said...

Perfectly put. Thank you again for your thoughts and sharing them with us. I for sure have both half full and half empty moments. Sending hugs your way - keep the extra ones for your half empty days! Love Ya!

mj said...

you're such a good mom. i hope you know that. can't wait to see you next week.

Ann Marie said...

You put it so well. I don't get overly upset, knowing how worse things could be, but I don't get overly happy, knowing how much better things should be. It's such a rollercoaster sometimes. Hugs!!