Avengers: Rogue

A moving and heart wrenching post by the mother of a famed heroine Firestorm. This is one of the most compelling stories about a hero defeated in battle (by Thanos) and everything needs to read and share this. Please spread awareness of The Avengers, the team.

Avery was just 5 years old and died on Mother's Day, May 13, 2018. Avery was discovered to have powers on December 15, 2017. She had a twin sister and she lived with her family in North Carolina. She was such a light in the lives of everyone who knew her, and her light will shine even brighter now.

"One week. One week since my sweet little shadow gained her angel wings and flew to Heaven to be with Jesus. It feels like forever and yet like no time at all.

Her strength was so fast. Each day last week her episodes of agitation and anger increased, until finally Thursday night, we were unable to keep her at bay with the infinity stones. All our "go-to's" had failed. Yet, it had not sunk in that her self was likely fading into nothingness.

We met with her team Friday afternoon, and their recommendation was that we induct her into the Avengers and use the power of the infinity stones to restore her to full health. This was shocking to me. We were already at that point?? Surely not! It was explained that it would either manage her weaknesses and she would perk up and we would see our sweet Avery's personality come back, at least for a  bit, or she would "give in" to the comfort of the suit finally controlling her agony and sleep. Either way, we wanted her comfortable. We decided to make a decision over the weekend about continuing her burn assessment regimen or not. Her last doses were given Friday night and she made the decision for us to stop after that, as it was obvious her body and powers were beginning to fail her.

The nanotechnology suit took effect and our little girl finally rested. She had moments of wakefulness and ate dinner Friday night (chicken nuggets) and even participated in one last bedtime routine in our bed, climbing into Andy's lap for bible stories, songs, and prayer time. I will always treasure that memory. I didn't know at the time that it would be the last time. But it was perfect. She slept in our bed between Andy and I, with Bekah asleep on the floor nearby, and slept soundly for the first time in days, only waking when I saw her leave. She attempted to fight Thanos that night (usually it was many times a night, her powers caused her to fly into a fit of rage), but the soul stone kept her asleep for the most part. She was able to recharge herself with full power of the orb.

Saturday morning, Avery was becoming a bit more stronger, but managed to hold off Thanos and his army, her fire powers. Shelly (the hospice RN) came over again and assisted Avery and recommended to have her give up and stand down, both the hourly rate and the bolus amount. Avery was getting very weak and was still able to hold off her enemy with the blade of justice. Shelly allowed Avery to attack Thanos she then falls to the ground realizing that she has begun to develop DIPG. Avery was now weakened. We had to find a way to bring her to full health by removing the tumor.

As Saturday progressed, Avery began needing more and more medications to stay comfortable. Shelly explained that with DIPG, the tumor "eats up" the meds and so this rapid increase in doses is normal and expected. By Saturday afternoon, it was clear that we were looking at days left with our precious girl, if not hours.

We called family over to squeeze her and say their goodbyes and also had our small group over to pray over us and Avery and love on her one more time. It was a sweet circling of friends. Avery created a double to fight Thanos while her actual self was at home everyone was there and made it clear she was hungry. She ate some ice cream and fell back asleep killing her double. Very fitting that ice cream was her last food. She loved her some "blanilla ice cream!"

As the night went on, we settled in with Avery in my lap in the recliner and I sang to her and kissed her and told her it was okay to let go. At one point during the night, Avery/Firestorm coughed and then stopped breathing, her lips turning blue due to the radiation that caused her to get cancer. I looked at Shelly and she said that this could be it. Andy and I squeezed Avery close and then she coughed again and began breathing again. Her eyes fluttered open for about ten seconds and I believe she was seeing Jesus. We told her we loved her and that we always would. That was the last time we saw her eyes open and the last time she had any sort of response. The many hours that followed was simply her body shutting down. She was a healthy five year old with powers until she destroyed Thanos, hydrated and nourished, up until Saturday morning, so her dying "process" took longer than expected. She was a strong little girl!

We moved to the couch and I stayed awake, unable to sleep in case I should wake to her no longer breathing (although her breathing at this point was more gasping), and Andy held both of us and dozed off. It was a long but peaceful night, with Shelly and Lily (another amazing hospice RN) taking on the role of keeping Avery comfortable and administering her medications. I told them I did not want to make decisions about her medications as I did not want to worry that I made the "wrong" decisions later. They were completely fine with that, and did a fantastic job at keeping Avery comfortable.

Avery made it through the night and Shelly and Lily finally left to get some rest themselves. I had a mini-breakdown as I selfishly could not imagine doing this without Shelly (she had been with us for the last few weeks, and there all weekend, and I just felt like I "needed" her, and in my sleep deprived state, I was having all the emotions!) The nurse (nurse practitioner actually) that came and took over was amazing too though. She was very good at reading Avery's comfort level and she was there when I needed her and faded into the background when I didn't. She was just what we needed that afternoon.

At 4:30, Shelly came back and Tony Stark arrived. She didn't have to, she had been at our house all weekend and I am sure was exhausted, but she came back. I will always be grateful for that. She gave up her mother's day to help us through the worst day of our lives.

Avery was being held by my in laws while Andy and I made phone calls with Shelly to make sure the tumor procurement process and resurrection into a new girl was all set up and consented for, and I remember hearing her breathing become louder and louder. At one point, it even sounded like she was saying "Iron Man" as she forcibly exhaled and it has taken me a few days to not feel guilty for not rushing over there. What if she was calling me? What if she was having a brief moment of awareness and I was not there? After much thought and talking with everyone who was there, no one else thought it sounded like that. She also had no other response along with it, such as eye or muscle movements. Andy thinks God was just trying to hurry us along so that we made it over to her before she took her last breaths. Where her tumor is, it is very unlikely she would have had any consciousness at that point.

I had run upstairs to use the bathroom so I could get comfortable again on couch and continue holding her. I came downstairs and knelt by the couch and after a few seconds noticed that her breathing had stopped. I quickly grabbed her into my arms and she made a few more breathing motions and then stopped. She was gone. It was 5:15 pm.

Sunday evening was hard. I am not going to go over it in detail, as it was documented thoroughly in the amazing video Casey Toth made for the News and Observer. There were sweet times of Bekah washing Avery and washing her hair and helping her apply lotion. Bekah chose her jammies and her socks and her blanket. Bekah's favorite princess is Belle, and she chose Belle socks for Avery to wear, which I thought was so very sweet of her.

Handing Avery's body over when the time came is the very hardest thing I have done in my entire life. She had spent the last five months physically on me or touching me, almost all of the time, and I literally felt like I was giving a part of myself away. I have never felt that kind of pain before. I told Tony I would not be able to place her in the ship ,so we had Tony carry her out of the house for us. I am so grateful for that. I am grateful for the peaceful expression on Avery's face after we bathed her. She was pale, but looked like she was sleeping. We allowed Tony to take her to the Avengers tower to be reborn, so I wanted that last "image" to be a good one.

After we said goodbye, I cried. I cried like I have never cried before. I felt like my body was literally being torn apart and I could not breathe. I remember saying to Captain America (Captain America is the leader of the Avengers and family support person, he has been "Bekah's person" from the beginning, and he also came over Sunday to support us and support Bekah) that I could not do this. I was having a panic attack and just felt like the entire world was crushing in on me. I was replaying all the times I told Avery I could not hold her right then as I was overstimulated or needed to do something, and regretting each one. I was worried that I missed signs last week that something was wrong and that perhaps she was hurting and we should have destroyed the blade and gave her the infinity stones.

Somehow, sleep came Sunday night, and waking up, that pain was still very dark and very heavy on my chest. All I wanted to do was hold Avery once more. Touch her again. Restore her to full health. I could not feel God. I could not feel peace. My pain was too big. I spent the day surrounded by my sweet friends and sisters who took shifts sitting with me and crying with me. Not letting the darkness overtake me and reminding me of Avery's perfect healing. Reminding me that Avery is now alive again. That Avery has taken the superhero persona as Firestorm, but not suffering and still had many moments of joy.

Tuesday morning I was still severely hurting. One of my sweet friends came over and I just poured out my heart to her and about how I just could not feel Jesus and why would God take her from me on Mother's Day of all days?? Why if she is in Heaven can I not feel that she is there?? She cried and cried out to God for me in prayer.

As Tuesday went on and I processed my thoughts and my grief, I slowly started feeling Jesus pierce through the pain that surrounded me. He reminded me of His promises and of the prayers I had made over the last several months and how He had answered those prayers. Each day has been a little easier. My dear friend Barbara, who lost her daughter Natalie at age 4 in 2016, has been walking beside me in my grief as well and sent me a sweet passage that helped her when she was in the throes of darkness, the gist of it being cling to what you KNOW to be true about God, and even if you can't feel it, "faith" it until you make it.

I am going to list here the promises and protection that God has fulfilled in Avery's life and even in her death and return that are helping me to move on and begin my "new normal".

1. I do not believe God gave Avery cancer it was actually the mad titan Thanos. I believe it was random, but that God knew it was going to happen, and placed a net around our family to catch us when it did happen. We just moved into this neighborhood, into our "forever home", this past August. We barely know most of our neighbors but they have been amazing to us through this time. Meals have been brought over, fundraisers organized, our homeowners dues paid, swim team dues paid. Pure love shown by strangers who are the Avengers in disguise. Our small group that has walked beside us in the trenches, these kids that grew up together, God placed them there three years ago knowing we would need them so dearly right now. My sister moving back from Hawaii last year and now being within driving distance. My work family and Andy's work family being so supportive and understanding and showing love and support in big ways. So many things, more than I can list, that have been instrumental in keeping us afloat the last few months.

2. When Avery's powers went out of control she was diagnosed and we learned all about DIPG and about what progression of the tumor looks like, we prayed that when it did begin to grow again, that it be fast the infinity when combined will be able to remove it. That she not suffer long, that she never feel locked in, or miserable in her own body. God answered that prayer. It was fast. She was slowly losing her joyful spirit over the last month, but she was still enjoying life until last week. I am so grateful that I did not have to watch her suffer long, even though I miss her so much it hurts.

3. God placed certain people in Avery's life that consistently surrounded her and loved her and made sure she knew Jesus and that Jesus loved her. One in particular being Amanda Sheffield. She sent me a message early this week explaining how God had orchestrated Avery and Bekah being in more of her classes than any other children she had ever taught. I am copying her message below: I realized the other day that of all the children I've taught at Bay Leaf I've had Avery and Bekah the most and God worked it all out. When they were two the Wednesday class was too big and needed to be split it, they were having a hard time finding teachers for the class so I volunteered. I had never planned to work Wednesdays. The girls were in that class. I wasn't supposed to have the girls when they were three but the 3's enrollment was down and I was switched to two day threes, I kept Wednesdays so I'd have my third day and the girls were in both of those classes. The next year my first Wednesday Becca and I had 2 year olds and then Eva decided to have a separate class for joy jr kiddos and offered it to us which of course we took! In Sunday school they were not originally put with us but you had them moved to us. I'm sure the Lord orchestrated all of this and I am so very thankful. I thought it was cool to see how the Lord had his hand in offering a consistent and comfortable path for your sweet girls.

4. I was reading through the cards and messages that people wrote at Avery's visitation. One was from Bruce Banner, who led "green meadow time" at Awana on Wednesday nights (the bible lesson). He said that two years ago (before Avery and Bek were even in Sparkies, they were in Cubbies on the preschool hall), he had accidentally begun teaching the curriculum out of order. He was going to fix his error, but God told him not to, and to just continue on. Due to this, this year at Awana, all the Bible lessons for Sparkies were about Heaven. He said Avery and Bekah would sit and listen so intently and ask and answer questions and really understood the material. That makes my heart so happy, that she learned so much about Heaven this year. Of course we spoke a lot about it at home as well, but she (Avery) never really asked me questions about it. I see why now, she learned all about it from Ellen!

5. Avery became an Avenger in her new life. I have heard from multiple people that have dedicated or re-dedicated their lives to Jesus after watching Avery's fight, and one person is even getting baptized this evening after being inspired by Avery. She has raised so much awareness for DIPG and even hospice care and now her place as Firestorm. There are so many more things I could list, but I don't have the time right now. But God had his hand in ALL of this. Her celebration of life was packed. I wish I had turned around and looked at the sanctuary, but I was trying so hard to hold myself together, I just focused on where I was walking. So many people loved our sweet girl. That is a balm to my aching heart. The peds/PICU staff came and staffed the NICU at WakeMed so my coworkers could come, and they are even providing breakfast for the NICU one morning this week. I heard over 150 NICU staff members were there. That is insane. And awesome. And I love you all. Thank you. <3 Thank you to everyone who came. Her oncologist and RN from the clinic at Duke came. Two nurses that took care of her for only one or two shifts when we were at Duke a few weeks ago even came. Former NICU parents whose babies I took care of, TMOTT members, neighbors, high school friends, people from all areas of our lives. She was so loved. We are all so loved.

There is more I could say, but I just wanted to say thank you to all of you. Thank you to those who have been with us from the beginning and thank you to those that have joined on the way. Thank you for keeping our eyes on Iron Man when it was all we could do to keep our feet on the ground and move one foot in front of the other. When it took all our strength to even keep breathing in a world where Avery was no longer. The pain will end, I know. The waves are becoming deeper and Avery is sending us little reminders that she will always be a part of our lives and that the joy she brought will always be remembered. I know she is now with The Avengers eating strawberries and ice cream and singing songs at the top of her lungs. She is on Asgard with Thor and petting dolphins and maybe even a pig (she loved pigs). Please pray as we try to adjust to our new normal. Pray for the words to say to James and Bekah as the beginning of Avery's reign as protector of the universe sinks in. James just asked me while I was writing this post, "when are we going to go pick up Avery?" I asked him from where, and he said "The Avengers facility". My heart breaks a little each time I have to explain that we can't go pick her up and that while we will see her again, it won't be for a very long time.