It’s amazing to me that you can read twenty different articles online and get twenty different responses. Also, you can speak to twenty different people and get twenty different opinions. There are so many variables that would impact each person’s decision differently. At the end of the day, I truly believe that you and only you can decide what’s best for your child who is medically complex based on their specific circumstances.
Making the decision for my son
My son is six years old and he is deaf, has a trach, uses a ventilator and G-tube, and has kidney failure, amongst a slew of other congenital anomalies. He has been doing e-learning since March 2020 but are keen for him to be in a class room again.
There are so many mixed emotions going through my head. On one hand, I’ve been trying to juggle this working from home at a demanding job while e-learning with two kids ages 8 and 6. I recognize that this is not sustainable long term…for my sanity.
On the other hand, I know how vulnerable my son's health is. I sat there every second of the day while his little body tried everything it could to fight off RSV (Respiratory Syncytial Virus). I cried myself until I had no more tears when his tiny four-pound body went into septic shock and his organs started to fail. I’ve also seen him fight a common cold and knock him out of commission for two weeks. The point is, my son doesn’t get sick the way other children do. Each and every one of our kids who is complex responds differently to illnesses, and there’s only one person who truly understands what that looks like: their parent.
Risk Versus Reward
In every big decision I make, I have a risk versus reward analysis that I create. For my son who is medically fragile, I think about the benefits he will have — and has had — socially from being with other kids. I think about his hearing and the difficulties and challenges of using Zoom with an implant. I think about his love for structure and how he thrived at school.
Then I take a big breath, I look at his beautiful face, and think about the reality I’m living right now.
As I sit back writing all the positive outcomes and results of my son being in person, the hardcore truth sets in. What if one of these weeks during the two in-person days, my son gets COVID-19? Is the risk of my son either significantly struggling to survive, damaging his less than 30 percent functioning kidney, or worse yet dying, worth two days a week being socially acclimated and having school in person?
It may seem harsh to put it this way and it may seem that we are living in fear, but it’s our reality. I recognize that it’s many of your realities, too.
Listen to your inner voice – and the experts
My advice for each and every one of you is to listen to your heart, discuss with your partner, discuss with your child’s doctor, and at the end of the day you — and only you — can make the best decision for your child.
Now, this is one of the most important parts. Please don’t feel bad about your decision. You are doing exactly what you feel is best for your child who is complex. You see, unless you’ve lived the life or are living the life making decisions for your child, you would never know what it’s like. Therefore, the opinions of others don’t matter. I’ve noticed that everyone has an opinion, which is all right and what makes us all unique and different. However, when it comes to your child who is complex I hold firm on this. Other people’s opinions don’t matter! We have enough going on with the day-to-day care of our children and the stress that overcomes us in surmounting these obstacles.
The last, and I mean last, thing we should be concerned with is someone who could never relate to what we do and live with everyday, yet insists on giving an unwanted option on what’s best for our child.
Keep up the phenomenal work! Being a parent of a child who is complex is hard. Someone once told me when I was pregnant with my first child that having a child will be your greatest challenge and your greatest reward.
This is so true with each and every one of our kids. Take a deep breath, recognize yourself for the incredible adaptability you’ve established, and know that you are doing the best you can with the situation at hand. You’re exceeding expectations!
About the Author
Wendy Kubista is a working mother with a demanding job and two beautiful children, one who happens to be medically fragile and require 24/7 specialized care. Like any other working mom, there are times she feels like there are simply not enough hours in a day. Fortunately, she has a wonderful husband/partner who is an unbelievable chef, extremely handy, a true problem solver, and the most incredible father. It’s one thing to be a working mom, which requires a constant juggle between family, work, home, but when a child who is medically fragile child — who has needed to be resuscitated hundreds of times in his little four years of life — is added to the mix, the juggle becomes that much more real and stressful. Her family has taken the stance that instead of complaining over circumstances, they will persevere into problem solving. The positive outlook enables them to live life to the fullest, travel often, and be grateful for what they do have and not focus on what they don’t
