NOTE: Except for clearly marked quotes, all writing on my blog is my own original work. What follows below, however, is copied from something my daughter posted elsewhere. It relates to the title above. I chose the pictures.
It’s been a while since we have written an update about Avery. Spencer and I both try to be as positive as possible in our posts here, and unfortunately we are both really struggling to do that right now. This is going to be long, but please read it anyway.
There’s no denying that Avery is a fighter. She has been to hell and back over the last eight years. For those of you who haven’t been following her since birth, I will summarize her long, complex medical history at the end of this post. Avery has been through pain and suffering that most people can not fathom. She has been cut open and sown and stapled back together more times than I can think about without crying. She is fierce and tough and we are so, so proud of her. We have also had a tremendous amount of support from all of you-friends, family, and even strangers to get through all of this. I don’t think anyone would be able to read Avery’s history and say, “wow, that girl really deserves more hardships and to die after all she’s been through!” I believe that almost anyone would agree that she has had more than her fair share of difficulties in her eight years of life. What people DO say freely is “Covid only kills those with preexisting conditions.”
Preexisting conditions? Avery has too many of them to count. We have no idea how covid would affect her, but we will do whatever we can to not have to find out. We are happy to carry the majority of this burden but the unwillingness of some to lift even a finger to help keep her safe has been incredibly disheartening. Our family has remained at home since March 13. None of us even have set foot in a doctor’s appointment or grocery store. We get all of our food delivered and lysol wipe or wash every single item. We only eat food that is prepared at home. No playdates, no breaks for mom or dad, no therapies for Avery. It has been hard, but we know how to do hard. We have perfected hard over the last eight years and we will continue to do it for as long as we are lucky enough to have Avery here with us.
Unfortunately, no matter how careful we are, when covid is raging across the US, we are going to have some level of exposure. We have no choice but to interact with people in the pharmacy drive-through when we pick up medications. Last week we had to get our broken dishwasher replaced which meant having a person inside our home once to install it and another time to fix the leak that the installation had caused. And today?
Today Avery has a fever. A fever could mean any number of things for Avery, but none of them are good. Even if this fever has nothing to do with covid, Avery may still require medical attention (technically speaking anytime she is over 100.4 we are supposed to take her to the emergency room). Any medical care would result in even more exposure for Avery and for the rest of our family. Not to mention the fact that her needing any medical care in a hospital that is already operating far beyond its limits would absolutely affect the quality of care she would receive. So many people bent over backwards to help when Avery was sick, and now we are asking, begging, for your help again. Please, please see that we have 3 other young kids at home who have not played with their friends in almost a year. They can’t participate in any of the activities or camps they love. They can’t spend time with any of their relatives. They usually do all of this with a smile on their faces because they know they are helping to protect their sister and in this family, we value compassion and kindness.
I believe that most of you already take the steps needed to get this pandemic under control and I can not even begin to express my gratutde for that. If you are healthy enough to not have to worry about covid, please realize how lucky you are. Having “preexisting conditions” does NOT mean it’s somehow OK or not as bad if Avery dies from covid. She has fought like hell to be here and she did not do anything to deserve her preexisting conditions, just as those of us who are healthy have done nothing to deserve that either. It’s just luck of the draw.
Covid is not a hoax. It’s not being exaggerated by the mainstream media. It is a virus that has the capability to take our smart, happy, sassy, toothless little firecracker and leave a giant gaping hole in our family that will never be repaired. So please do the right thing, and encourage others to do the same. Wear the mask. Correctly. Avoid large gatherings. Stay home as much as possible. I realize it isn’t fun. The pandemic isn’t fun for anyone. But the only way we will get through this is by working together. Please, please don’t be the person who puts out the brightest light in our family.
Medical history:When Avery was born, we found out that she has heterotaxy syndrome. This rare syndrome effects everyone differently, but for Avery it primarily affected her heart and her digestive system. After birth, she spent 81 days in the NICU. During that time, she had two major surgeries on her heart, and three major surgeries involving her digestive system, along with countless other smaller procedures. Since Avery is a twin, we spent these three months driving to and from the NICU (we were not allowed to sleep there) with her twin sister. We learned to be parents by being thrown in the deep end of a very challenging situation. It was hard for all of us but she did the hardest work and we all got through those difficult months.
About a year later she needed another heart surgery which went well. She was growing and developing on target for her age and aside from her scars and g-tube, she was basically a “normal” toddler who spent most of her time bossing around her twin sister. When Avery was 2.5, she needed one more surgery on her heart, which was supposed to be her final planned surgery. Unfortunately, a few hours after this surgery, as I (mom) sat helplessly watching, Avery suffered two cardiac arrests, had her chest re-opened at the bedside, and was placed on ECMO (full life support). Her heart did not beat on its own for the first few days, and we were told to have our families all come to say goodbye. They could not close her chest due to swelling, so she laid, in a coma, with only plastic separating her heart from the rest of the world.
It was the absolute most horrific experience of all of our lives. Miraculously and against all odds, Avery survived. As I said before, she is a fighter and is far stronger than most of us will ever even dream of being. But even Avery wasn’t able to come out of this fight unharmed. While she was arresting and being placed on ECMO, she went for a long time without oxygen, leading to a catastrophic brain injury, called a hypoxic ischemic encephalopothy or H.I.E. Avery lost the ability to control her movements and could no longer walk, talk, or do most other “normal” 2.5 year old things. She would later be diagnosed with cerebral palsy. After almost 2 months in the hospital, Avery was well enough to come home (we were in Philadelphia), but soon after we got home she was back in the hospital, needing yet another surgery on her digestive system. She could no longer tolerate food and in order for her to come home we had to do around the clock food and medications through a special IV. Unfortunately, despite all precautions that were taken, she developed an infection and became septic. This also led to a brain bleed, and we almost lost her again. After her initial brain injury, Avery was diagnosed with Cerebral Palsy which caused her legs to spasm and tighten.
When she was 4, it had gotten to the point where she needed yet another surgery-this time to release the muscles in her leg, ankle, and foot. This recovery was worse and more painful for her than any of her other surgeries. Since that time, she has been relatively healthy, other than having more difficulty than her siblings with colds and other viruses. From day one, we have been extra careful about germs, typically staying home every year from November through March. We do this gladly, because all of us want to keep Avery safe.