Thursday, June 5, 2014

Schools out for Summer.

Schools out. I have the Brave Heart quote in my head "It's all for nothing if you don't have freedom" which rings true in so many ways. You need a break, kids need a break, If you don't have the freedom to live your life, you will never live, you will just go through life. Summer is one that I have always looked forward too. I get just as giddy now as I did when I was in school. The thought of waking up with my babies and lounging the mornings away drinking coffee watching them play games together around my coffee table seriously makes my heart happy. The having no plans when you tuck them into bed, then waking up and thinking "today is a beautiful day for the beach, LETS GO" The thought that if the mood struck and we needed a Havasu run that we could literally pack and be there in 5 hours and be welcomed with open arms by Aunts and grandparents makes me happy. I love summer. No stress, swimming all day, lounging with a cocktail in my hand at night watching them play out side, giddy I tell you. I seriously love summer.
This summer however, this summer, its different. We should be in the pool right now, its the first day of summer, the last day of school.  However for the next several weeks we won't be. Tomorrow we should be driving to Santa Barbara for a weekend away with an organization that takes special needs kids out to surf. We won't be going.  Next week we should be driving out to Havasu to spend a few days with family out there. We won't be going. Instead this month is filled with Zio Patches that monitor your hearts rhythm that can not be submerged in water, heart cauterization procedures with overnights stays in the CVICU (cardiovascular intensive care unit), 10 day recovery periods from her surgery, all things that if you would have told me a year ago would be the way we were spending our summer I would have told to get behind me satan. But its happening, its real, and its seriously bringing me down. Trying to stay positive that its going to be awesome, and there is nothing to worry about its getting hard. Especially when I have a 6 year old screaming and crying back to me saying "ITS NOT FAIR!!!! I HATE CARDIMYOPATHY!!!" I hate it too, and I shake my fists in the air and say "damn you cardiomyopathy" at least twice a day right now. Wondering how many Slurpee's she can be bought with to get her out of her funk, How many times I can convince her that we don't need to go swimming, we could have way more fun playing in the sprinklers.
This summer is different, but this school year has been different too. This summer we started school like any other year. Come November I only had 3 kids in school, Tara was taking out due to exhaustion. Come January I had 2 kids in school and Elijah doing online home studies (which worked out great, but looking forward to him going back next year).  Tara finally started going back to school full time 9 days ago...yes, she had 9 full days of school before school was done. She went back to school with a full time nurse, and next year will continue with her. Next year we have also chosen to keep her in first grade for another year. Technically she "passed" first grade, and could continue moving on to 2nd grade, but she is behind. She missed 5 full months of school, and even now her stamina is not up to where it should be. So Jim and I together talked about it and brought it up to her teacher. Her teacher left the decision up to us, but agreed that it would be the best decision for her. I love that she supported us and encouraged us to do what we felt was right for her given the circumstances. So next year she will continue with an leg up on the up coming first graders instead of feeling that she is 2 steps behind with the 2nd graders. This also gives us the time we need if she needs to be out again for what ever reason.
This summer is different, but I am still looking forward to turning off my alarm and a cocktail in my hand watching the kids play together.
*In case you are curious we do have a date for her heart Cath of June 17th* More on that on another date.

1 comment:

  1. I hope that our times in LHC work out. ~sb