Bennett's Wish

            The Weight of Parenting a Medically Fragile Child Debating whether to call the paramedics or take him to the E.R. this time… Heavy. Being your child’s nurse, without any training and constantly watching, listening for any sound of distress, and jumping up in an instant to suction him or care for a seizure… Heavy. Knowing that no one truly understands our life unless they have lived it. Heavy. Thinking that if we are authentic with our struggles, then people will say we are “negative thinkers” or everything is “all about us.” Heavy. Driving in the car, praying he won’t have a seizure until we get home and then having to pull over to reposition and suction because, of course, he did have one and now needs oxygen. Heavy. Suctioning at every stoplight. Checking my mirror to make sure he is breathing. Heavy. Dealing with the school district and fighting for my child’s rights and safety… Heavy. Hearing my oldest ask why we have to be one of the “rare” families with CDKL5 and that

 A year ago, Bennett was hospitalized for almost 3 weeks with RSV. He was almost intubated and I didn’t know if he would be coming home. I watched my child struggle to breathe for over an hour while three PICU nurses worked on him. This happened daily during his stay. Yes, I live in fear. I started living in fear for my child’s life the first time he was rushed in an ambulance to the hospital at 7 months old, not knowing if he would live. After he was hospitalized for two weeks with the common cold in September of 2019, I didn’t want to send him back to preschool. I had to constantly weigh the risks with the rewards and if I didn’t send him, we would have to forfeit his therapies and services. I inquired about homebound school, but was told he didn’t qualify. I was also told that if he didn’t attend school in Kindergarten, we would be penalized. We’ll cross that bridge when we get to it next year. When “Covid is over”, our lives will not go back to “normal” like everyone else’s. Our li

   Having a special needs child is isolating in the best of times, but it’s like living on a deserted island with no way out in the times of a pandemic.    When COVID 19 became a worldwide pandemic situation and our entire country went into lockdown, I was both scared to death and relieved. I was relieved to have my family with me and know that I could keep them safe, but scared that we would reach a point one day that I wouldn’t be able to do that anymore. Having a medically fragile child means that you already are always cautious about their health and do everything you possibly can to make sure they stay healthy, because even a common cold becomes an ambulance ride and weeks in the hospital ICU ward.    On top of wanting to keep my child safe, I also worry for myself and my husband’s safety. What happens to Bennett if we’re sick or even hospitalized? Who will take care of him? We are the only two people who know how to care for him and operate his medical equipment. There is

Hospital thinking.. . I have read articles talking about how taking and/or sharing photos of your children on social media, etc. while they are sick is inappropriate or disrespectful to them. I used to think that, too. But now, sitting here sometimes letting my mind wander, thinking the worst, I wonder if these photos will serve as one more precious memory in his life that seems to have a possible early expiration date. What if this was the last time someone was able to be with their child and they didn’t have any photos to help their memory? I also feel like this is just one more thing that is a feature of his special life. His life will consist of regular hospital visits. His life will be filled with medical procedures and treatments. It’s as much a part of his life as school is for our typical kiddos. I’m pretty sure Bennett will get through this one, this time, but who knows how much more he can handle in his future.

“I could never do what you do.” “How do you manage?”  Yes, having a severely disabled child has its challenges,  but they are your  child and  you  love and do everything possible to help your children. His needs are just different. My life may be more difficult than others’ in some ways… weekly specialist appointments and multiple therapies,  fighting for services, insurance coverage, and resources,  spoon feeding my  three-year-old  all of his meals and holding a cup to his lips for every sip, and  having to  helplessly  watch my child suffer from seizures daily . Bennett’s  communication is very minimal and only his father and I truly understand his sounds enough to know his needs, but even then we are left guessing, and  I’m  always feeling like I’m not doing enough for him if I’m not engaging him in some kind of therapy all day long, every day of his life. However,  my life is also simpler tha n  others’ may be who have two children, ages 3 and 5. Bennett  can  and will nap

After Bennett was diagnosed with a rare, neurodevelopmental disorder called CDKL5 Deficiency Disorder at 11 months old, I was told that the future was unknown for him, that he would “write his own story.” That was the most positive thing we heard. Then we were given some websites to visit and we read about the statistics for a child like Bennett and it was grim, to say the least. The neurologist and the geneticist chose their words carefully, careful not to be too devastating and careful not to be too positive, in case we were to become disillusioned about our son’s condition. We were also told to call our regional center to seek an assessment and servi ces as soon as possible. What they didn’t tell us was how we were in for the fight of our lives… for services, for medical equipment, for the best care possible for our child. The fight for services…  the fight for medical coverage…the fight for the safest and most effective anti-epileptic meds… the fight for medical equipment…th