Thursday, August 27, 2015

A Pause

I am still in a good place reagarding Ruby's diagnosis. Honest. But this post is about the pause that I need to take to be sad for a minute before continuing on the journey that God is walking us through. This is not the feel good post...this is the poor me post. The one that complains and struggles and can't stop the tears. This is the post about school.

When Ruby was first diagnosed with Leukemia, I realized that her treatment would interfere with school. It choked me up, but it was far enough away that I could still bury it. This week it has come out of hiding and it is a full reality. Today was Ruby's last day at school until who knows when. She could go back in a month, or she could go back after the holidays, or she could not return at all this year. Between the hospital stays and compromised immunity and not wanting to disrupt the class with her sudden return(s) randomly throughout the year, everything is up in the air.

School is a big deal for me. When Ruby was born we quickly learned about the delays and what we could likely expect from her regarding milestones. The gap(s) between her development and that of other children her age grows with time. When she was less than six months old, it wasn't noticeable, but by her first birthday it was starting to show. So we worked with her on everything we could to get her to keep that gap at a minimum. And because Ruby is a rockstar, she has exceeded expectations: she walked earlier than most kids like her do, she's very interested in learning new things, she's curious and social and easy to work with. So when I started looking for schools, I knew all I had to do was find one that would give her a chance because she would rise to their level.

Lots of phone calls and visits and emails exchanged with one school in particular last fall and spring before we finally committed. Then we met with the specific teachers twice before the school year started, to allow them to meet Ruby and ask any questions they had. I was heartbroken when Ruby then had to miss the first day, but she came back on the second day with a spring in her step and wowed everyone. The loved her and told me every chance they got how great she was doing.

Ruby has been to school a total of four times, but that girl loves it. She lights up when I say the word 'school' and she smiles when she sees her school bag. She waddles down the hall to her classroom, holding my hand and pointing to all of the cool things on the wall. Then when she gets there, she finds her picture and points to it before pointing to those of her friends. And to top it off, she says hi (sometimes) to her teacher and then walks confidently into the room without looking back. Ruby is learning routines and manners and social awareness and all of the things little people her age should be learning. And she loves it.

So when I think about how much I hate cancer, it's not because of the scary factor or the chemo side affects (which I'm sure I will hate soon enough). Right now my hatred of cancer is due to it robbing Ruby of experiencing this awesome class she was given to thrive in. Right now I'm furious with cancer because it is stealing from her the chance continue her start with other kids who, while not delayed like her, are starting something totally new also. Right now I'm mad at cancer because it is taking away a time where she was able to do something that had nothing to do with Down syndrome. Right now I'm grieving the window of opportunity we had by starting with full inclusion at a time when she was the same age as other typical kids, still operating at a similar level. Right now I can't complete a sentence about school without my voice cracking.

I just sat down with Ruby's teachers and told them the news. I was shaking the whole time, trying to hold back the tears. I succeeded until the very end when they told me how great she was doing in the class and how proud I would be of how well she's learning the routines. The minute they started talking about her in that environment, doing what I prayed she would be able to do for so long, I couldn't hold back the tears. Her teachers were amazing, ARE amazing, and I hope she returns to them soon.


Stacy said...

Oh Nicole, I grieve for you and with you for the loss of this special time for Ruby in school. I pray that the joy you all experienced in her four days at school will be far surpassed by the joy that you will have at her return to school. That it will be sooner rather than later, that she holds on tight to that desire and energy and boldness and curiosity. That she doesn't lose ground while she's going through treatment and rebuilding her immune system, and that she continually feels warm and secure in the love of your family and in her Father. She has an amazing family.

MikaRakovec said...

Hey, I'm Asher's mom. "I'm thinking of you" is an understatement. I have no idea what you're going through. However, I'm hurting for you and hating this for you all. I'm anxiously waiting for Ruby to get back to class as I know everyone at this sweet school is. I'll cry tears of joy when she's back! Please let me know if there's anything I can do to help. Lifting you all up in prayer.