Saturday, March 15, 2014

Guest Post- Heart to Heart with Ania & Mimi

The following is written by my mom Julee- aka Mimi to Ania. She was with us on the Philadelphia trip and here is her account of the trip. So sweet......

Seven days of being playmate, roommate, bedtime and early morning snuggle buddy, explorer, best friend, comforter, spiritual guide, and HER Mimi...

I will never be able to describe this experience completely. I just know that I am better for having been a part of her world.

Monday was a hard day of waiting, tests, waiting, decisions, tears, and more waiting until Thursday
Waiting room....

On Tuesday morning after breakfast, Ania and I found a quiet hallway in the hotel and played "Doctor Ania" for quite a long time. She is a very good Doctor as she explains every step of the exam she gives-even down to being an absolute truth-teller about the "icky" medicine I would have to take and how much the "little pinch" would hurt before I got a lollipop to ease the sting. I would ask her to look at my "broken eye" and she would look very carefully. When she was done, she would say, "Now it is your turn to be the Doctor and you can look at me!" Mind you, we had no Doctor toy props...this was pure imaginative play. Our matching butterfly necklaces were our stethoscopes, our curled hands were our ophthalmoscopes, our fingers were syringes for giving icky medicine or pinches, and a hotel decoration containing several pieces of some kind of decorative fake fruit were our lollipop prizes! 
Matching necklaces used as stethoscopes 

Dr. Mimi examined patient Ania with special attention to her broken eye. I asked her if she knew that Mommy and Daddy were doing their very best to try to get her eye fixed. She said yes, but she understood that sometimes it is hard to do. "Ok! Now it is Dr. Ania's turn again!" 

Wednesday night, before her enucleation, I gave Ania her bath. While she was sitting in the tub, she was covering her broken eye. I asked her what she was doing and she said, "It is ok." I again made sure she knew that Mommy and Daddy along with Dr. Shields were doing their very best and she said, "I know...they have to take it." My heart about stopped. I asked her why they have to "take it" and she said, "Because they can't fix it." And with a little shrug of her shoulders, that was that. 

As I was getting her jammies on, she said, "Maybe in the morning we could build a "bort" (fort) and go inside!" This is something that I have done with her before by placing blankets across the space that separates two beds. I said that we would try if we had enough time before we went to See Dr. Shields. That was good enough for her. 

As it has been our custom for a long time, we read a story together and then we say our prayers focusing on how much we know God loves us and asking him to bless everyone we can think of! We prayed specifically for Dr. Shields to be blessed for the next day. We always close with singing "Jesus Loves Me" and a kiss. As she rolled over to go to sleep, I asked if it was ok if I sang the Ania song to her and she said yes. "I love you forever, I like you for always, as long as I'm living, my Ania you'll be."

Early morning fort building with Mimi! 

Thursday morning Ania was up bright and early and full of wanting to build her fort. We got right to work using blankets, pillows, and a cushion for the door. We needed some light so in went my IPhone with the flashlight turned on. As you can see by the picture, it was grand and made more special when Daddy went in and read a story to her and Kellen.  As the rest of us got ready to go, Ania spent a little more time in there by herself until we were ready to go to the hospital. You have all read Erica's beautiful account of the rest of the day.

At bedtime that night, we skipped the story and the longer prayer together. I quietly laid next to her and sang the Jesus Song and the Ania song. Trust me, I have spent may prayers asking for the Holy Spirit to make them for me as I am often incapable of clearly stating them.

Friday was a day of making Ania as comfortable as possible as we travelled home. Papa picked us up at the airport and was given the Doubletree Chocolate Chip Cookie that Ania had insisted that we save for him! Once home, we relaxed, hugged, and snuggled until Ania was ready to go to sleep. Although she didn't want me to go, she (and I) knew it was time and that I would be back. At her request, I sang the Jesus Song and the Ania Song one more time before leaving. 
Back home with her Papa

Today as I prepared to put my thoughts together for this blog, I found this Ania "selfie" on my phone. She had taken it while she was alone in her fort before her surgery. It just about wrecked me... 💘
A hauntingly beautiful self portrait of the left side of Ania's face taken just prior to eye removal 

My sweet, sweet, Dainty Warrior - as we wait for what is next on your journey, know that your Warrior Mimi loves you beyond words and I look forward to all that God has in store for your beautiful life. Look at all he has provided already!

Julee (Mimi) <><


  1. ....and your family courage goes on!!

  2. Julee, your post almost reminded me of a Psalm, reveling in the wonder of all that God has provided, yet honestly revealing your connection with your humanness. I admire the fact that you've put these thoughts into writing, as one day Ania will come across this blog, and find all the love of her family, as chronicled through her ordeal. As one who has survived and thrived after an enucleation herself, I had to smile when Ania accepted what was happening, and explained it more simply and succinctly than any of adults could have! I continue to pray for her recovery and for you, her family, as you support her.