Your ONLY is my EVERYTHING

Here we go again. After a few weeks of no masks, one trip to Knotts, and one family gathering COVID is back. Now comes the restrictions, conversations about protecting our children, masks, and social distancing. I’m exhausted. Physically, mentally, and emotionally. I've gotten to the point where I’m done with the outside world. If I could, I would stay home with my family and never leave. Never attend another gathering, go on another vacation, or see anyone. It’s just too hard because unless you're in my shoes you won’t ever understand. Living in this marginalized part of society has become more isolating and I can admit it’s because I want it that way. Luke has spent more than five weeks in the hospital this year. I pray every day for peace. I’m to the point where I ask for the bear minimum and that’s peace. I can handle if Luke never walks, talks, eats, all I want is peace. Luke is perfect just as he is right now but he deserves peace. He deserves to be able to sleep without waking up with seizures, he deserves to handle the minimal amount of food he eats without throwing up, he deserves the minimal amount of quality of life. Adding COVID to this gives me an added anxiety to the already existing fears and worries I have. So let's talk about how Luke seems to always land in the least likely scenario.

Out of 100 healthy full term babies only 1 gets infected. Well that only was my everything. Luke was that one.

All of Luke’s medical conditions have been the least likely to occur, but they still did. You know when you read the label and it says 99.9% of people react normally but there's a .1% chance that you could have adverse reactions? Well Luke is that .1%. When he was born he contracted GBS. The likelihood of a baby that is exposed to this bacteria to actually get infected is 1 in 100. This means out of 100 healthy full term babies only 1 gets infected. Well that only was my everything. Luke was that one. When you get GBS and it’s treated there is only a 10% chance of getting meningitis. Luke was in that 10%. Your only was my everything. Out of all the babies with meningitis only 11% develop long term brain damage. Luke was that 11%. Your only was my everything.

Let's talk about his seizures. Luke started having infantile spasms also known as West Syndrome at 4 months old. West syndrome has been estimated to affect .31 per 1000 live births in the United States. That's only a .031% percent. Luke was that .031%. Your only was my everything. Luke’s seizures have progressed and are now Lennox-Gastaut syndrome. Lennox-Gastaut syndrome (LGS) is another rare type of epilepsy disorder. LGS affects only .1-.28 of people per 100,000 and it is believed to account for 1-4 percent of all cases of childhood epilepsy. Your only was my everything. This .1 of 100,00 equates to ONLY .0001% of the population. Your only was my everything.

Humanize that 1% that doesn't have a voice and cant fight back form this ugly virus

This has been Lukes life. My little boy that is turning two years old has gone through so much, yet he still brings so much joy to my life. This past month Luke has been doing better. He was more alert and at peace with his feedings. We were able to enjoy him and his personality in a way that we hadn't in a very long time. For his birthday I pray for peace. I just want to enjoy my life with him and our family and avoid landing in these least likely scenarios. To do that, I will protect him as much as I can. I am sorry if this means that we will isolate ourselves in our little safe haven of a home, avoid family gatherings, and increase boundaries. I just want to ask that you think about children like Luke and my family any time you think about the least likely scenario. Because until you have lived in this marginalized likelihood you’ll never know what it’s like to sit and watch your child in the hospital, in an incubator, or on a breathing tube. Next time you say the words pertaining to ONLY a small portion of the population, put a face to it and try to humanize that 1% that doesn't have a voice and cant fight back from this ugly virus. Because your ONLY is my EVERYTHING.