Living with DIPG- Count your blessings

Ava and I love to do puzzles, read, blow bubbles, paint and just PLAY!

Forgive me if this post is filled with cliches but so many of them make so much more sense to me now.  

The day we were told Ava had a brain tumor was a very stressful day for me.  Ava had been home from school for two days and even though she was acting "off" I still thought nothing of it.  Her doctor appointment was in the afternoon and I decided to spend the morning cleaning the house.  Unfortunately, the girls weren't cooperating with me and by lunch time I hadn't made much progress. At nap time Ava didn't want to sleep and I yelled at her to lay down.  She responded by asking me to cuddle with her.  I told her no I needed to finish cleaning.  Then a few hours later we got the worst news ever.  

Looking back at this day I'm filled with guilt.  I felt like cleaning was more important than spending time with Ava.  Probably because I never questioned she will always be here and now every day is a gift.  

I have learned the very hard way how to take time to appreciate the moment.  If I could go back to that day I would stop the meaningless chore I was doing and spend the time with Ava she desperately wanted and needed.

As a mom we are normally pulled in many different directions and have tons of things on the to-do list but please remember none of us are promised tomorrow.  When your babies ask you to play and cuddle with them, do it. Hug them and love them today, for some us tomorrow never comes.  

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10 Responses to “Living with DIPG- Count your blessings”
  1. You are so very right. Thank you for the reminder. :)

  2. Reena says:

    She is such a beautiful little girl....and the reminder to stop doing the chores (they will be there later, right) and take the time to cuddle, play a game with the children is so important. Sending thoughts and prayers for Ava.

  3. Renee says:

    Oh, how I can empathize. My son has a very rare heart defect. A double aortic arch which has been divided, and another vessel on his heart that is in the wrong spot. This artery compresses his esophagus and can't be repaired. He can't take in enough food orally, so he now has a g-tube as well. He is tube fed 4 times a day (he'll be two this month). I can't JUST hold him and play with him all day long...and yet, he often feels lousy. It's such a hard balance as a mom of a sick kid...

  4. Linda says:

    My thoughts are with your beautiful little girl. And thank you so much for the reminder - I'm gonna go check on my peanuts right now.

  5. Anonymous says:

    My prayers are with you and your family. M.E. keeps us up to date on Ava. She is a beautiful angel to be treasured!

  6. These are beautiful, thank you for sharing them. My thoughts are with you all.

  7. A good reminder. Thank you for sharing.

  8. Thank you for the reminder. It's so easy to always have something else to do. You are both in my thoughts xx

  9. Mikki says:

    Much love and prayer to your sweet little girl. Beautiful post, thank you for the reminder.

  10. Jenn Radock says:

    I love what you wrote here.

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