A third birthday, being in the hospital, and going on vacation, were all things that hit me hard this summer. The realization that this isn't just going to go away, and that our life will never be quite the same, put me in a bit of a funk this summer.
Truthfully, some days this all stinks. It stinks that my little girl's EEG looks (in the words of her neurologist, at one of the top hospitals in the country), " highly active and terrible". It stinks that she couldn't even watch fireworks because I was afraid that the constant barrage of lights would stress her already over-stressed brain. It stinks that on a family vacation, Bella couldn't be outside much because heat makes her wilt, plus her seizure meds cause her to be unable to sweat.
It's just not fair.
When you keep thinking about the injustice of it all, a funny thing happens. You become bitter, miserable, and angry. Who wants to be around someone like that? Not me.
That's NOT the person I want to be.
I had a very good friend tell me: "Julie, you need to focus on the CAN DO'S, instead of the cant's. It's amazing what a kick in the rear and a perspective shift can do.
So, I've been trying to focus on what Bella can do. On the things we can do together as a family. On the joy and blessings we do have, and on the progress (while painstakingly slow), we're seeing.
We can go to drive-in movies together as a family.
Bella loved the drive-in! Pizza, cookies, popcorn and a cozy
nest in the back of the car!
She CAN swim with us in the pool for short periods of time.
I think she might like the pool. :)
We can focus on the blessings and joy in life..even in the midst of less than ideal circumstances. A quote by our pastor the other Sunday really stuck with me, and I put it in my phone as a reminder-
"You cannot let your circumstances determine your view of God." -Dwight Mason
It's not always easy, but I'm trying..JPG)
I promise to blog more, I've missed it!
Here's to focusing more on the "can's", and much less on the "cant's".
"God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea". (Psalm 46:1, 2 NIV)
4 comments:
Ah, I love you and love seeing that beautiful Bella smile! I'm so proud you're my sister. :)
You have written my heart. Some days, for me, it is easy to focus on the good. But there are so many days that I have to really work, minute by minute, not to become that bitter and angry person because of the things Ava can't do. Thank you.
Have you tried a Waterway Baby ring? We have one for my daughter who is similar to Bella in many ways and she loves it! (http://www.waterwaybabies.com/)
Hi Angie!
Thank you so much for the suggestion! I have heard great things about the waterway baby ring, although I haven't done much research. Bella loves the pool, but it is much more difficult now that she has a central line. :( We have a dry suit for her, but getting it off was torture for all of us! Last summer we put her in the pool one hot day, and just changed her dressing immediately after without any ill effects. She loved it!
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