A good friend of mine out here in Omaha had her Mom pass away when she was 7-years-old. Michelle has been a tremendous support to me since Ellie died especially by helping me understand how to help my kids through loss at such a young age. When I was expressing my fears of my children not remembering Ellie I asked her how much she remembers about her mom. She told me that most of her memories revolve around the pictures she has looked at repeatedly as well as the stories she has been told over and over throughout the years. This created an urgency in me to document the things my kids remember about Ellie so that they can read them throughout the years and remember their own memories and not just mine. I asked all of the kids what some of their favorite memories with Ellie were and these were their answers.
- The Swing Ellie slept in at Grandma's house for the first 2 months of her life. Brynn loved to help out by pushing the buttons to turn on the music and make the little bears spin. She also learned how to turn the swing so it could swing either side to side or front to back. Since the kids weren't able to be as involved in taking care of Ellie as they would have with a typical newborn, this was one way Brynn could help and it became one of her greatest memories of Ellie as a newborn.
- Mason remembers Ellie having oxygen before she got her trach and how cute she was with the tubing on her face.
- Shortly after bringing Ellie home with her trach, Scott and I were in her room doing a trach change (where you take out the trach and replace it with a clean one. This is something we did once a week). Not knowing what we were doing, Brynn walked in just as we were removing the trach and when she unexpectedly saw the exposed stoma (hole in Ellie's neck) she turned white as a ghost and looked like she was either going to be sick or pass out. From then on we always made sure to inform the kids when we were doing a trach change. Mason would come running to see and Brynn would steer clear to avoid getting another shock. Eventually Brynn got used to Ellie's trach and became a front row participant in all of her trach care.
- A favorite memory for all of them was when Ellie would wear her speaking valve which they called her 'talking nose' (the HME she wore on the end of her trach was also referred to as an artificial nose and we often just called it her nose so this was her talking nose). They all LOVED to hear her voice and would work their hardest to make her laugh with it on. But their absolute favorite was when she would cough and the speaking valve would shoot off like a popped cork. We caught it happening on video once and it is our favorite video to watch. The kids will watch it over and over again laughing hysterically each time.
- Mason loves to talk about how we would put Ellie on a blanket surrounded by toys and she would roll 15 ft across the room to play with a fruit snack wrapper instead. She didn't like regular toys near as much as she like crinkling paper and plastic.
- Mason just loved to make Ellie smile and laugh. Her favorite noises were funny/startling sounds, especially loud kissing noises and duck sounds. Mason would get right in her face and make all sorts of noises to make her smile and laugh.
- Ellie loved to grab hair. Mason was the perfect height for Ellie to grab a handful of his hair whenever I was holding her and he stood next to us. Mason was always such a good sport about it and loved the attention he was getting from Ellie even if it was a little painful.
- The kids all loved Ellie's tongue filled smile.
-Mason and Brynn would be assigned to be on "Ellie Duty" when I needed to get in the shower or get something done quickly. I would get them set up reading books or playing with toys and then do what I needed to for 10-15 minutes and if Ellie needed suctioning or anything else they would come get me. Since the person not on Ellie duty would usually be on Miles duty, they would always fight over who got to be on Ellie duty. Mason loves to talk about the time I left him downstairs with Ellie but he wanted to go upstairs so he carried her all the way upstairs by himself. He was so proud of what he had done, but it gave me a heart attack thinking about all the tubes that could have been pulled out or Ellie being dropped down the stairs.
- Brynn loved to do "Ellie's Pat Pats" with me. We had to sit and percuss her chest and back for 20 minutes twice a day. Brynn had an extra "pat pat" and would percuss her doll as I was percussing Ellie.
-The thing that Miles remembers most is playing with Ellie in her saucer. He would do this by holding onto Ellie's saucer while spinning around in circles saying, "Try and get me!" to Ellie. Anytime he sees the saucer sitting in our storage room he talks about how much Ellie liked playing with him in it.
-One night it was just us girls at home and Brynn wanted to paint our toenails, so we took the nail polish into Ellie's room where she was hooked up to her machines and Brynn and I painted each other's toenails. When we were done Brynn asked if we could paint Ellie's, so we did. As I was trying to paint her teeny tiny nails while she was squirming around the red nail polish got knocked over and spilled a big puddle on the carpet in front of her crib and stained the carpet. Now every single time we paint our nails Brynn reminds me of the time we painted Ellie's nails and spilled nail polish all over her carpet.
-When Ellie got to go on the life flight helicopter she earned superstar status at our house.Anytime our kids see or hear about any type of medical helicopter they will say, "That is like the helicopter Ellie got to ride in."
- When we get the bike trailer out Miles likes to talk about the time he rode in the bike trailer with Ellie and fell asleep on her. This was the one and only time they went in the bike trailer together and it was nothing short of a disaster, but it gave Miles one of his favorite memories of Ellie so it was worth it.
- We took Ellie to the zoo a couple of times. Her favorite thing was the tropical birds. She couldn't take her eyes off them. Every time we pass the area where they put the birds out during the summer, the kids talk about coming to the zoo with Ellie. Mason also reminds us about the time he, me, and Ellie rode on the Skyfari together.
- Ellie loved her bubble video that played her favorite lullaby repeatedly while bubbles floated and bounced around on the screen. We played it for her a lot! It is not uncommon for Brynn and Miles to ask to turn on Ellie's bubble video to help them go to sleep.
