The Isolation of a Special Needs Family

-

   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 no one else who knows how to mix his medicine that comes in powder form. There is no one else who knows how to set him up in his CPAP machine at night, or knows how to get him to eat or take his meds when he doesn’t want to open his mouth. There is no one else who can sense that a seizure is coming on, so we need to get him to a safe place and position him so he doesn’t aspirate. I think that is my biggest worry.

    Our community is starting to open up and  everyone is over it and ready to get back to “normal.” What is our new “normal”? Maybe it is “normal” for a special needs family, since we are ALWAYS concerned about illness, since a cold virus can be life-threatening. When my 6 year old came home from school last winter with RSV, I bought him a mask to wear in hopes of not spreading it to Bennett or the new baby, but it was so contagious, that they all ended up with it and Bennett won an 18 day stay at the Pediatric ICU. What would COVID do to him? I know that “kids aren’t affected the same way adults are”, but he’s not a typical kid. A typical kid doesn’t end up in an ambulance struggling to breathe because of a cold. I shudder to think about what that virus would do to him.
I also feel loneliness. Isolation. Left out. I’ve been so kindly invited to social events and I love being thought of, but I have to turn them down. Every invite I turn down, I feel like a little chip is chiseled off my friendships and I feel sad.  I watch on social media as people are at the beach, restaurants, parties, weddings, parks, happy hours, and “feeling normal again!” I feel pangs of envy and think how that won’t be us for a very long time. I could never forgive myself if I got sick and passed it to Bennett.
 

   I’m thinking ahead to the next few months and I don’t know what they have in store for us. I’m hoping that sometime this summer we can safely go to a beach, berry picking, and continue to go on hikes in the mountains near our house. For now, I am just focusing on filling my cup with gratitude that my family is safe, healthy, and that we are very lucky to be together and not have to struggle for anything right now. Every day we have with Bennett is one to be thankful for.

Comments

Post a Comment

Popular posts from this blog

Bennett’s Story: Birth to Diagnosis

-
Image
When you find out you’re pregnant for the second time, you are fairly confident that everything will go routinely. You’ve been through this before, you don’t have time to worry about the “what if’s” and you figure that the chances are you’ll have a healthy pregnancy and baby. My pregnancy with Bennett went fairly smoothly, nothing too concerning or  abnormal.  After he was born, he was slightly smaller than we anticipated, but again, nothing too concerning. His first few months he struggled to gain weight, but so did his older brother, so we weren’t too  worried . At about 3 months, I was looking back at pictures of my oldest at that age and realized he was holding his head up and tracking with his eyes better than Bennett was, so I mentioned it to the pediatrician at his check-up. She agreed that he needed to work on head control, so we started physical therapy by 4 months. At our  6-month  check-up, I was growing more concerned because Bennett still wasn’t tracking, responding to
Read more

How I Manage

-
Image
“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
Read more

What They Don’t Tell You

-
Image
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
Read more