My son can’t do the things you can, but his life is worthy too

Most individuals don’t walk around thinking other people are unworthy. And if you were to ask them “do you believe every person is worthy?”  most people would say “yes.” Yet, so much of life seems to tell us we must earn our worthiness by what we do or have the ability to accomplish. In our culture being capable is often confused with being worthy, but my son Adam is teaching me there is such a big difference!

A race for everyone!

I couldn’t believe the turn out. Reading in a text message that there would be about 20 special needs families at the Believe Beyond Ability’s (BBA) Derby Race did not prepare me for actually seeing it in person. It was totally awesome!

There was a sea of purple BBA shirts, strollers, wheel chairs, parents, kids of all ages, and the main event of the morning—small electric kids cars. Music blared from a speaker, bubbles floated into the air, and volunteers held on to huge bouquets of purple balloons.

The cars were lined up in three rows. I saw families searching for the car that was specifically fitted for their child’s physical needs. I scanned the horizon myself, trying to locate Adam’s car with his special green seat inserts. On the other side of the concrete basketball court I spotted the lime green head rest sticking out of the car, and my son and I made our way to it through the crowd.

A special commonality had brought us together—our belief that our children are worthy.

It felt odd and comforting just the same to be surrounded by so many families in similar situations as our family, with special medical needs and care required. I did not know any of these families, yet a special commonality had brought us together—our belief that our children are worthy. I knew every parent at this event had their own unique story, as we did. Being in this community somehow had the ability to make me feel comforted yet still isolated, because our story felt so different from any of the others I had heard so far.

Related: An open letter to my daughter with Down syndrome

How septic shock led to my son’s disabilities

Our son was born “normal” or developmentally typical as they call it now.  Then, when he turned 7 months old, our whole world changed. 

A second opinion believes that the hospital did not treat our son’s bacterial infection properly and that the adequate care our son deserved was not given. This resulted in septic shock.

Sepsis is an overwhelming reaction to infection in the body. When someone goes into septic shock, they experience life-threatening low blood pressure. The lack of oxygen our son experienced created severe epilepsy, cortical-visual impairment, and spastic quadriplegia cerebral palsy. These terms are just a fancy way of saying he has severe trouble moving his limbs and trunk in a way that coordinates regular body movements and actions.

We have no genetic diagnosis either. Just this event that happened, but like everyone else, it forever changed our lives forever.

So, in most special needs groups, we’re still the odd ones out because we experienced a trauma later on and not during pregnancy. We have no genetic diagnosis either. Just this event that happened, but like everyone else, it forever changed our lives forever.

This life change has resulted in countless phone calls with doctor’s offices and medical establishments, more special medical equipment than I knew existed, and enough doctor appointments to make my head spin at times. It has also required me to become an unofficial nurse for my son. This isn’t the motherhood I pictured. Far from it really.

This isn’t the motherhood I pictured. Far from it really. 

And some days it just feels like too much. Too much sadness watching my son not thrive the way I pictured him thriving. Too much stress because Adam cannot communicate with me. Sometimes, it just feels like too much of everything, and I have to give myself space to be okay with that and cry and be angry.

No, I did not choose this. But I do choose to keep going. I choose to do my best to still enjoy life and not just get by each day. I make these choices because my life, my son’s life, and my family’s life is worth it. And seeing him smile, sometimes when I’m at my lowest, lifts my spirits and makes the work worth my effort. Because he is my son, and he is a human being worth more than anything anyone could imagine.

I make these choices because my life, my son’s life, and my family’s life is worth it. 

Where Adam is today

It has been almost two years since this trauma occurred. My son is two and half years old now. We are still dealing with the aftermath of such a shocking and traumatic experience. My son’s epilepsy continues to plague each and every day, making it very hard for him to learn and grow. His severe visual impairment greatly limits what he can see, and therefore, he lacks the motivation to reach and move because he can barely see what there is to reach and move towards.

He cannot verbally tell us “no” or what he wants or when his tummy hurts or that he loves us. And most days I feel like he’ll never eat by mouth again. He cannot sit on his own and play with a desired toy or get up and decide to go to another room. There are so many things he cannot do. But I do not introduce him as Adam, my son with special needs that cannot do this and that. He is simply Adam. Worthy of love and care just as he is today.

There are so many things he cannot do. But I do not introduce him as Adam, my son with special needs that cannot do this and that. He is simply Adam. Worthy of love and care just as he is today.

There are also a lot of things my son can do. He can think and process and decide if he likes something or not. He can throw his own version of a tantrum. He’s fully aware of what is going on around him. He can smile and laugh. He has favorite things like watching Curious George or driving with the windows rolled down. He can operate an iPad and switch system to communicate. He can one day use this system to operate a power wheelchair. He loves the color green, and Christmas time is so fun with him! Adam loves all the lights, sparkles, and colors! But he is not defined by what he can do either.

My son is not defined by his inability, nor is he defined by his capability. His worth does not come from what he accomplishes each day or how he will succeed when he is older. And your life is not defined by your success or failure either. We all have a “disability,” something we cannot do or something that keeps us from a job, activity or opportunity, because we are (or think we are) incapable.

My son is not defined by his inability, nor is he defined by his capability.

Related: 4 pieces of advice for the parent who just received a prenatal diagnosis of Down syndrome

Even more than our inability, we are likely to define ourselves by what we can do or get done in a certain amount of time. I do this often, but I am learning I am still worthy, even when my work is left undone. 

This idea of measuring our worth by our accomplishments seems to be ingrained in us from a young age, even if unintentional. Our culture says the grades we get in school or even the friend circles we run in speak to our worth. That promotion or raise you just earned at work or that fancy coffee you treated yourself to because you checked off everything on your to-do list. These are all ability based criteria, and culture tells us they define our worth. But I’ve learned the hard way, my abilities are not what make me worthy. I am worthy because I am the only one like me. And so are you.

I’ve learned the hard way, my abilities are not what make me worthy. I am worthy because I am the only one like me. And so are you.

Thankfully, our self-worth as human beings is defined by our humanity, not by what we can or cannot do. Every human being is created equal, deserving of their basic needs being met and their whole person being cared for: the 90-year-old woman with dementia, the two-year-old with autism, the person struggling with weight loss, the infant in utero with a genetic abnormality, the foreigner and citizen, the upper and lower class, the widow and the orphan. This idea spans beyond religion, faith, and spirituality. It invades every area of our lives even when it goes unnoticed.

Sometimes, honestly, you may feel that your disabled child isn’t worth the “effort.” You care about your child, but when you think about the feedings, extra care, doctors visits, missed milestones, stranger’s looks, and non-normal days—you get overwhelmed. I didn’t plan to experience those things, and when Adam was in the womb, I never expected them. 

But Adam is in this state, and I can tell you that he is worth all the effort. It’s not about what he can or cannot do, but who he is and who he will be. My wonderful little son, who will one day be a wonderful man.

This article was written as a part of our #ExtraordinaryHuman Campaign in honor of World Down Syndrome Day. To learn more about the campaign, follow Voices for the Voiceless on Facebook, Instagram, or Twitter. 

Charity Dotson is a stay-at-home mom who has a passion for helping others find joy in every season. When she’s not doing medical research or caring for her family, you’ll find her watercolor painting and sipping coffee on her back porch. You can learn more about Charity on her blog Joy in Tiny Victories.