Coping with DIPG-Shopping Isn't Fun Anymore

Last fall Ava and I had so much fun back to school shopping.  She was starting to form an opinion on what clothes she liked (dresses) and what she didn't (anything that was not a dress).  I took her to the mall and we went to one of our favorite stores.  She walked in and started thumbing through the rows of clothes, pulling out all the pretty sweater dresses and matching leggings.  After my hands were full of potential new outfits, we proceeded to the fitting room.  This was a new experience for both Ava and myself.  Up until a certain age, you can buy your child's size and not worry about how it will fit but Ava was not at that stage anymore.  She had to try her clothes on, just like me!  She tried on numerous dresses, commenting how pretty they were.  I let her pick her favorites because its no fun to wear clothes you don't like and we left the store.  I remember this shopping trip so well because it was the first time Ava and I really shopped together.  It was such a fun day and I loved experiencing it with her. 

Ava and her favorite dress from our trip.  She would wear this red dress so much and always asked for me to wash it if it was dirty! 

Fast forward to this fall.  The weather has started to cool off a tad and it made me think how Ava has no clothes for fall.  She's outgrown most of her things, thanks to the extra weight gain from the steroids, and I knew it would be time to buy her some new clothes.  Only this time I wasn't excited about it and neither was she.  She told me to go without her and I was really bummed she didn't want to shop with me like last year.  I proceeded to the same store and as I was picking out dresses, I got sad...very sad.  Would she like the dresses I was picking?  Would she gain more weight and then not fit into them like her summer clothes?   

And then, the worst thought of all...would Ava be here a few months from now to wear these clothes?  Each month my anxiety grows.  When doctors tell you that your child is going to die within 9-12 months and it has been 10 months since that conversation, you wonder everyday if they will be here tomorrow or next week or next month.  If your time might be up with them.  I don't want to think about life without Ava but I do.  Those thoughts are there and they don't go away.  I can push them down, but then they come back up.  

I still have hope for Ava and everyday she blesses us with her smiles and laughs.  She continues to show no symptoms from her brain stem tumor but we don't know what the other tumors are doing right now (hopefully shrinking).  Each day brings me joy and fear but ending the day with Ava in my arms is so comforting.  I can only pray to end many, many more days like that.  

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8 Responses to “Coping with DIPG-Shopping Isn't Fun Anymore”
  1. Jennifer says:

    I'm so sorry for you. While I don't truly understand the depth of your pain, I can tell you that I hurt with you. *hugs*

  2. Maggie says:

    I have never even met you or Ava... and I cannot begin to imagine what you are all going through right now - but it is so obvious that Ava couldn't possibly have a more loving family who is going to make every single minute of her precious life count for something! Thinking of you and your sweet smiley girl often.

  3. Emily says:

    Ava is such a beautiful girl, as others are saying I cannot imagine this happening to my family when I have one. When I was sick after my spine surgery and I needed clothes my Mom bought a bunch of things and let me pick a few and then returned the rejects. I hope Ava loves all of the dresses and they make her happy <3. You and Ava are in my thoughts and I am sending positive energy your way.

  4. I think and pray for you, Ava, hubby and Myla everyday. I can't form a thought to imagine what stresses you are feeling, but I do know you are all loved and thought of often. BIG HUGE HUGS!!! {{{{ }}}}}

  5. Hitomi says:

    I got here because Lana Parrilla from Once Upon A Time retweeted you.

    I'm not sure how often God answers to my prayers, but I just made one for your daughter and I really really hope He'll answer it :)

    I'm from Brazil and I really hope that what they say is true, that the Lord's presence is very strong here!

    Please tell your daughter she has a Brazilian fan sending her many "get well soon" wishes! :)

  6. Elizabeth Dawson says:

    This blog was so open an frank. Thank you
    for sharing your joys, fears, and struggles. Oddly
    enough its been helping me identify my feelings too.

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