“I could never do what you’re doing!” This is another one of those sayings that we as special needs parents get constantly. It could be our friends, family, or just community that this phrase is uttered by, and to us it is like nails on a chalkboard. My wife has even gone so far as to use expletives whenever she sees or hears those words. We know there is an underlying compliment in it somewhere, which is why so many people still use it. A better phrase for us special needs parents might be : “Your job is tough, and I see you are doing a good job, I admire you for that.” To say “I wouldn’t or couldn’t do that” is to preemptively shirk responsibility for a situation you are not yet in.
Nobody asks for this life. When Shelly and I decided we wanted kids, we knew there was a risk that we could experience some medical needs similar to what Shelly experienced as a kid. Never in a million years did it occur to us that we would be living the life we currently are. Going back to an earlier blog where I posed the phrase “God never gives us more than we can handle” I had said that although this life is tough, we learn to improvise, adapt, and then overcome our unique challenges. Nowhere did I say it was easy. On the contrary it is HARD!
Shelly and I are not some sort of superhuman parents. We don’t get to fly around with laser vision, or stop out of control trains. We just so happen to have a daughter that has complex medical needs, and when faced with that challenge instead of stepping out…we stepped up! See, it’s all in mindset and resilience that we make it through our day to day. If we had the roll over and play dead mindset as soon as we experienced these hardships, Hannah wouldn’t be with us..she would have been a statistic with the rest of the kids that don’t make it past a few months of age. I know that hurts. I know it’s hard. It’s exhausting work. It is overwhelming for everyone. And some parents…they walk away, they quit. They just let the river swallow them instead of learning to swim. So we aren’t superheroes, we are just the ones that saw this life coming and met it head on.
I feel like nowadays there is not much personal accountability or responsibility. We give easy way outs instead of learning the hard lessons. We are quick to rely on others for the way forward instead of taking the sails and navigating it ourselves. As special needs parents we fear confronting the doctors, going against our family’s advice, alienating friends because of differences in opinion on parenting. And we let it happen because it’s easy. I’ve seen parents giving up, throwing in the towel…and sometimes walking away from a life that is too hard. Hannah isn’t alive right now because we are some superhuman parents, she is alive because when we were told what to do, we did it. When we didn’t know the answer, we researched, we asked other parents, and we figured it out. When we had to stay up late and take care of Hannah, I still went to work the next day. It takes a certain resilience. The ability to bounce back. To pick yourself up, and say “ I can do this all day” (OK, so maybe I am channeling Captain America). But this is the mindset. I believe we have a generation that is afraid of failure. They get so blown away by it that it’s hard for them to see the lessons in their failure. They avoid, get defensive, and don’t admit failure or fault. I think one of the lessons I’ve learned is : It’s ok not to know the answers (as a know-it-all type person that is a tough pill to swallow.) I’m ok with failure. I’m ok not knowing. I’ll just learn something new. Don’t let the small things blow you away…or else the really big things will do much more than that.
When I was in Boy Scouts, there was an Oath and a Law. On my HONOR, I will do my best, to do my DUTY, to God and my country, and to obey the scout law. To HELP other people AT ALL TIMES, to keep myself physically STRONG, mentally AWAKE, and morally STRAIGHT. Our law is a Scout is: Trustworthy, Loyal, Helpful, Friendly, Courteous, Kind, Obedient, Cheerful, Thrifty, Brave, Clean, and Reverent.
These are not just words and memorization for me. They are absolute truths, and guidance for my character as a human. Breaking down the Oath. For me that is a solemn commitment. Just like my wedding vows. That is me. When people say “You’re such a Boy Scout” whether in movies, or other pop culture, it is always because that somebody is doing something right, and standing up for it. My wife calls me a “rule follower”, and identifies me with “Captain America” (though I do think she would prefer Chris Evans in that suit than me given my current physique). But most importantly that Oath instilled in me what is truly important for my life. It was pledging to live a life in selflessness and service to others. It was an oath, to be a good person, to do the right thing even when that was the hard thing to do. It means not fearing what may come, but facing the challenge and being strong for those who can’t be. Simply it meant to take responsibility for life, and our duty to see that through. Some might see our oath and law as just another way of ingraining “mindless patriotism” ; after all the scouts is technically a paramilitary organization. But at the end of the day it’s another value system, even if you aren’t particularly religious, this covers the bases. It shaped me as a man growing up. I learned through the scouts that sometimes things just suck. Sometimes you have to suffer through something or fail multiple times. But it is in those lessons that we become stronger.
A great orator and Admiral in the US Navy by the name of William H McRaven said “It is easy to blame your lot in life on some outside force, to stop trying because you believe fate is against you. It is easy to think that where you were raised, how your parents treated you, or what school you went to is all that determines your future. Nothing could be further from the truth. The common people and the great men and women are all defined by how they deal with life’s unfairness.” God this is such a great quote for us special needs parents. Our life sucks sometimes. It’s hard. It is downright defeating. I have had my share of moments where I could not see a speck of light in the darkest hours. But it is the strength of our character that gets us through it. It is that purpose, that selflessness that gives us that bit of momentum to keep going. It’s for Hannah. It’s not for me, not for Shelly, we do it for Hannah…and guess what? If it was your kid you sure as hell would do it too. “I couldn’t do what you do.” Yes you can…and yes, you would.
Special needs parents need to be told they are doing a good job. Constantly. We don’t get the feedback nearly enough, it’s a thankless and lonely life. We are isolated, jealous, tired, overwhelmed, in darkest depressions, and in heightened anxieties. We need reassurance. We don’t need to be reminded how tough it is. We don’t need sympathy. We just need that person to come along and say “we see you” “we support you.” I think that’s the lesson in resilience… we just need that little push to keep our momentum going.
I think for personal responsibility the pandemic really brought out the worst in behavior for us. Sometimes personal responsibility could also mean your responsibility to others through your personal acts. With children as critical as Hannah, the pandemic has a much more severe outcome for Hannah were she to be infected. She is the critical risk category. And even more now that she is on a ventilator, possible direct infections into her lungs are more possible if we should inadvertently infect her. Since the beginning Shelly and I have been extraordinarily careful in how we conduct ourselves. I always mask up even for short runs into stores, even if it’s something outdoors but close to people. We haven’t gone out to eat since before March of last year….geez that’s a long time. And we have used delivery services to cut down on time spent in public. When vaccines came available, we both received our courses. As 35–36-year-olds we know we are healthy and would survive, however we also know that Hannah would have a much rougher time. We did it for her. My in-laws have protocols that they did to keep Hannah safe.
Masks became politicized, and even family wouldn’t don a mask to come see Hannah. That is heartbreaking for us. And it is selfish on those people that refused. People have told me that I have a choice to stay home, but as the only breadwinner I still must work. I chose to endure. I chose to be safe for my family and others. But other people refused to be safe for me. Some were callous enough to say well only 3% die from it, no worse than the flu….Hannah is in that 3%. Its maddening to hear how little people cared. “it’s all political” is all we hear. “It’s uncomfortable” “I don’t care if I get sick” “I’ll survive, I’m not wearing a mask or getting the vaccine”… That is no excuse to act in selfish ways, to not care for those who can’t help it, who can’t make that choice. Those who are the most vulnerable. We do the things we do, to keep a loved one safe. We owe it to each other to care. For us in the special needs community we need our families to stand with us. To be responsible for us. If we all looked out for each other instead of our own comfort or sense of pride, the world would be in a better place. Personal responsibility transcends to responsibility for those around you as well. Your behavior matters.
“I could never do what you do.” Yes you can. It’s not easy. It is certainly not glamorous. We don’t get to go out as much. We don’t get to buy expensive things. We don’t get to go on dream vacations. But we are happy without that because we have Hannah. That’s selflessness, that’s living as God intended. We don’t need “stuff” to make it through. So you can indeed live without the new golf clubs, or side by side, or RV..and you can take care of your kid, you can deal without sleep to take your kid to the ER after working a full day. You can cry, you can scream about how unfair it is. You can pick yourself up, put one foot in front of the other and not let a failure defeat you.
“A bird doesn’t give up flying, because it fails the first time”- Matshona Dhliwayo