1. EMPATHY FOR OTHERS
Having a special needs son is not the first difficult thing I've experienced in life. In fact, I've faced a lot of hardships. Some might say I've lived a lifetime of experiences that exceeds my age a few times over. When you aren't born with a silver spoon in your mouth, have a misguided sense of what it means to be family, you come from poverty, anything you have in life you have earned on your own, and then life hands you a special needs medically-fragile, terminally-ill child... well, it can be hard to empathize with other people's problems. For instance, in college I was working a full time job, 3 part time jobs, take 18 hours of courses per semester, pay for your own bills, put yourself through school and participate in sorority activities and sports clubs, let me just say it was pretty tough feeling sad or sorry for my fellow sorority sister whose parents are paying for her school and sorority and says she has a hard time managing her 12 hour course load and finding time to study. (*Know your audience).
Before my son, I dismissed a lot of friends' issues because they didn't seem as "big" as mine. But what I have learned over the years is that regardless of what charmed circumstances of life your fellow sisters may have been given, there is always a struggle somewhere. There are deep seeded fears or scars you may not even know about. And that when we start comparing, it doesn't really lessen the battles we are facing for the day, regardless of the circumstances. Their battles are still the biggest thing in their own lives, and they matter too.
2. BEING FLEXIBLE
My aunt and uncle used to make fun of how jam-packed my planner used to be in college (did you see the above explanation as to why I needed to be so organized?). Every minute of my day was planned out and accounted for. I was a professional woman, with a very well thought out and organized plan. When I was working out of Chicago I traveled about 1/3 of the year, on a plane or out of town many Wednesdays through Mondays, so organization and planning was key to staying on top of things. When you have a life going back home, and a life on the road, it can be tough to manage it all. (If I only knew what "hard" really was back then!)
Being a special needs parent requires TREMENDOUS planning and organization, more than I've ever needed before. You have to learn to juggle things like pediatricians, occupational therapy, physical therapy, pharmacies, calls to vendors like labs, doctor's offices and medical supply companies, calls back and forth with the insurance company to discuss what bills you have received that they should have paid, seeing multiple specialists and inpatient hospital stays all while trying to keep things going at home while trying to keep up with your job. So... those things all take a backseat when a medical emergency arrives. Things like grocery shopping, cutting the yard, birthday parties, cleaning the house, paying bills... these are all things that are mere luxuries, things you learn to be flexible about.
So my "perfect" life where everything goes as planned, it no longer exists. I don't hang on to perfectionism and learn to settle for "my best", and sometimes, just "good enough". The things that used to give me anxiety or keep me up at night were all petty in comparison to the things that give me anxiety now or keep me up at night are entirely different and with greater consequences. So these days when it rains at my kid's birthday party after weeks of planning , we simply embrace the rain and make it part of the fun! Or when we can't make another kid's party because one of us hasn't been well, we just have to be OK with that too.
(This was the schedule from the month we had one quit and 6 call outs... yikes, talk about FLEXIBLE!!)3.OFFERING GRACE
Before I had my special needs son, there wasn't much room for error in my life. I demanded perfection and excellence from myself, my co-workers and those I interacted with. If you forgot an important detail, didn't get back to me, or haphazardly turned in a partially completed project, I wasn't very forgiving. I had high standards, after all, and I expected the same from you. I needed you to have it all together, because I did.
Now I am a parent to a child with special needs, and now I need understanding from others. I might miss a meeting because we had to do an emergency procedure at home, in caring for him I may have to turn in a project late or return an email later than I would have liked. I can't expect grace and forgiveness from others if I don't first offer it myself. I am incredibly understanding about things like broken vehicles, sick children and full plates of projects. And now, I really understand about needing grace for many more things, and we will work it out, my friend.
4. MY CELEBRITY CONTACTS DON'T MAKE ME AWESOME
I used to rub elbows with many sports figures and celebrities in my former lines of work. I used to think I was pretty special because I worked with a lot of famous people. I used to travel to some very elite resorts and plan incredibly cool parties, events and outings. I felt fabulous. But I now realize that knowing celebrities or having them in my contacts list doesn't make ME any "cooler".
But I didn't feel "fulfilled". Having a special needs son has given me the opportunity to be a part of another exclusive club, this one just doesn't earn you any free miles or 5-star meals. As I've learned along the way, I've shared my knowledge with those who have come behind me. So know you know what does make me "cooler"? Growing as a human being and helping others along the way.
5. I SEE THE BEAUTIFUL SIDE OF HUMANITY
It's pretty easy in today's world to get depressed by all the crime, violence and hate. And like I said before, my life wouldn't be considered "charmed". I lived in the big cities and been the victim of drive-by shootings, break-ins and other crimes. I became self-sufficient and very guarded. It was hard sometimes to feel like there were still good people in the world. And then we had a son with special needs.
I have met children with special needs children who have an angelic presence, the hearts of warriors and spirits of a champion.
I have met many siblings of individuals with special needs, and it has changed my life. These people are the most selfless, empathetic and incredible human beings I am lucky to know. They are the world changers, they are the ones who teach me and inspire me to keep growing as a person. My own 10-month old daughter will walk over to her "keep out" gate when she hears my son's machines start going off. If we don't do anything, she will come over to us and "whine" to alert us that something is wrong with her brother. We have to calm her down and tell her that the nurse is there and taking care of him. If the gate isn't there she just heads straight back to check on him... already at 10 months she has empathy for her brother when he is in trouble. I just ADORE this quality in her, and I am so blessed to call her mine!
I have met other parents of children with special needs and they challenge my definition of hero. Their stamina and determination are mind-blowing. The number of things they have to deal with, and the many battles they juggle all at one time is difficult to fathom for most. The time they devote to help others coming up through similar situations is jaw dropping, given all that's already on their plate.
Well friends, these five things are the things that make me better than I used to be, are the things that make be grow as a human being. So the next time you see a family in public who might be struggling just a little bit, I encourage you to hold the door open, tell them "it's OK" when their child has a meltdown in the store, pay their bill at the restaurant, strike up a conversation in the grocery line... you just never know what REAL celebrity you might be welcoming into you life, or what hero you might have the honor of knowing.
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