So here it is June 10th… 2 months post op and I sit with the keyboard under my fingers and I type and think do I want to go back there? Do I have the energy? Do I have the memory? No, no and no. But I am going to do it anyway.
I have decided this is for me. This is for my memory that is fading as each day passes. I don’t remember much of Lily’s brain surgery back in 2005 and reading my blog from that time is hard, but also important and I feel this will be the same way.
I will break this up in a few parts for myself and for you few dear readers I have left.
I don’t know how this is going to look and how readable it will be, but it is hanging over my head in an invisible to do list that I am just ready to check off.
April 5th Easter Sunday:
We were riding the high from having family in town, we had a super fun pre Easter celebration weekend with a portion of Andrew’s side of the family and woke up ready for some more Easter fun. Baskets, egg finding, church and family in our home, it was a perfect day. Sunny, not too hot, and although I didn’t offer not much more than a store bought ham and our house to congregate in, I was happy to have my crew there to take my mind off the impending doom sensation I had in my stomach since November when Dr. White said it’s time for surgery. As contractions slowly come upon a mama about to give birth that was how this gut feeling was hitting me. Slow at first but as the days came closer and closer to April 7th it was ever present and consistent and I was about to give birth to all my fears and anticipation. Just writing about it brings it back.
Later that evening we had our life group and other close friends (as well as some family stayed) to pray over Lily. On Easter Sunday we had a house full of people to pray over Lily. I say that again because people left company at their home, left get togethers to come to our house to pray over Lily, and our family. I was hardly able to muster my gratitude’s as we humbly accepted the love our friends and family were pouring over us. We stood, held hands and prayed that Lily would make it through, that her pain would be taken away and Andrew and I as well as Andi and Oliver and grandparents and aunts and uncles could all remain strong for Lily. When the last guest left our home I sighed and thought how lucky we are. How blessed we are. How grateful we are to have brought Christ into the center of our home and with him came a team of people who love us so. I think of all those years he stood knocking and I would half-heartedly let him in and then kick him out again when he didn’t bring all that I expected him to bring, all that I thought I deserved he bring in his arms as he came into our home. I was selfish and silly. But I know better now and thankful for growing up. Thankful for the continual knocking on my door and thankful I finally opened the door and let him in to stay.
So that night I tucked in all the kids and went to bed feeling loved and yet still scared out of my mind.
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| Nordy Family pre Easter fun |
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| Us |
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| Diepstraten Family Easter |
April 6th Monday – the day before surgery
Lily was due at the hospital on Monday the 6th at 12:30 pm for pre-labs and because we live exactly 35 miles from the hospital we qualified to stay at the Ronald McDonald House right near Phoenix Children’s. So Monday morning the kids knew this was good-bye for awhile and it was a tough morning. I took the kids to school in the golf cart as we usually do on lazy mornings and I gave them huge hugs and tears were filled in Andi Jane’s eyes as she says good-bye, she told me to tell Lily to be strong and I had to watch them walk away wiping away their tears as my heart felt like it was about to implode. The silver lining was I watched Andi literally walk straight from my arms to her youth pastor and our neighbor/good friend who knew why she was sad and gave her a big hug. Relief filled my imploded heart that helped it enough to start beating again. Some may say I am dramatic. So what. What I am saying is it sucked to say good bye. Heart breakingly so. This surgery was so hard on each member of our family. So freaking hard.
After the kids went to school I let myself cry. Then packed up all our bags and loaded up the van. Dozer (our English Bulldog who loves Lily more than anyone else) was really upset that we were leaving with bags and he wasn’t allowed to go.
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| “Don’t you even think of leaving without me” Dozer |
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| “I’m going with you” Dozer |
Lily and I went to Costco for dog food (Dozer should have not been so annoyed, I was doing that errand for him) and then her and I sat at Kneaders and had lunch. I struggled to eat, although she certainly did not. A peanut butter and jelly sandwich, applesauce, chocolate milk and a cookie, she obviously wasn’t struggling as much as I was that day. Then we were off to the hospital where we met daddy and labs were drawn. Then we went around Phoenix for a bit before heading to the Ronald McDonald House. While we waited for our room we started thinking home isn’t too far. We should just go home. Then we were taken back to our room and we literally had a two bedroom apartment to stay in. It was furnished by the Arizona Coyotes and was quite amazing. We were able to relax, hang out, eat dinner and snuggle Lily. Later Marrisha (Lily’s caregiver of many years) came by to help me with her bath and to braid her hair before surgery, something recommended by the parents who had done this surgery before us, and besides Marrisha can braid her hair way better than I could ever pretend to. And then off to bed, we were due at the hospital by 5 am. It was a restless night for me, kept thinking I was going to miss the alarm, but Lily slept beautifully and my heart ached knowing this was her last night for a long time of her “normal”.
I’m gonna stop before I even start with surgery. That post will be much longer and I will need to go back to facebook and instagram to help me remember those days so this is where I leave you.
Calm Amongst the Chaos 
Thank you for posting this. I have been waiting to hear how she did/is doing. I look forward to the next post! I remember my Sarah the morning of her bilateral hip surgery. I went to wake her and I so did not want to. I stood at her bedside at 5am that morning, not wanting to disturb her because I knew once I woke her, her life as she knew it would be over, for a while. It was so unbearably hard. So I get it. It was a bear of a surgery and took a full year for her to get back to baseline. Now 12 years later, I'm so glad it was done but who can think about that, in the moment.