Always Aware
It seems like I have been traveling a lot these last few months. I can’t say that I don’t like it because I truly do! In fact, I love it! Other than being away from my family and voice students, at times, my adventures with our grandson and seeing the country through our children’s eyes and sharing life with girlfriends has been very special. Already this year, I have visited Wyoming, California (twice), a new area in Texas, New York and Virginia. Most of these trips were at the request of others to join them, but I was grateful to see more of the United States in all its beauty.
On a recent trip and from my airport pizza shop stool, I watched as a family cared for their young daughter in a wheelchair. Her soft pink outfit with matching knitted gloves looked adorably cute on her. However, I wondered what the reason might be for her heavy, knitted gloves on such a sunny Texas day. I wondered if she was feeling cold in her extremities as Robert often did or if there was an abnormality that was best covered with her sassy gloves. Perhaps covering her hands was easier than confronting the stares or questions from passengers seated near them at their airport gate.
Most moms of special needs kids have had the conversation with other similarly challenged moms concerning how to help ease car and airplane travel with a child with a disability. Sometimes the conversations are very private because it takes courage to share how messy things could get for the child, the family and the bystanders. Some bystanders have the compassion to help in the moment, and some are not able to help for varying reasons.
Private mom or dad conversations may include questions like these:
“Did you pack the extra seizure medications because you thought he would seize as he woke up from his nap?”
“Did the Diastat rescue medication help, and how did you handle the mess and smell it caused when you were around other people?”
“Is a Benadryl-like medicine something you have tried?”
“Do you need to burp your child’s G-tube while flying?”
In my case, these questions were usually asked for very specific reasons as moms learned that Robert had many types of seizures. The interactions were always very friendly and informative. Even now, I find that these same conversations can be very helpful.
When we dared to travel with Robert, we had many ways of distracting him by keeping all of his devices charged to the max and ready for movies and TV episodes. As our airplane trips were very few, and our car rides were frequent, we grew to be experts (like most families) on what would work the best.
On one airplane trip that we took with all seven of us, we thought our only option for a safe and quiet trip was going to be to use a Benadryl-like cough syrup. We had never attempted that before with Robert, so we were not prepared for what happened.
You who have children can all imagine how sweet it is when your children fall asleep naturally in the car or on an airplane. What you may not have experienced is what I would call a “backfire” when a medication does the opposite of what you expected … on an airplane!! Yes, that’s right folks. Robert had a reaction that was the complete opposite of what we had intended. Instead of being calm, quiet and sleepy, he was agitated, loud and wide awake! I am not kidding. It was not pretty, and it took some time to help him relax.
If we had not given him any additional medication other than his usual daily dosages of medication, he probably would have done just fine. Who knew? I should have known, but I didn’t. I tried it, and then I quickly regretted it! Perhaps I should have tried it at home before the trip. Anyway, that was a long flight.
Benadryl-like medications and airplanes don’t always go together for every child. Just like those cute knitted pink gloves wouldn’t work for most children in the Texas heat. For that sweet princess in her wheelchair chariot, though, it was working for probably many different reasons unknown to all of the bystanders. I couldn’t help but smile at the family from a distance. They didn’t need my help. They just needed my respect. Her parents knew best.
On my trip to New York City this month, my flight home was canceled after a thirteen-hour stay in the airport. That was not fun at all but spending extra time with my daughter and grandson was priceless! As I had just read an article about being aware of people with disabilities when you travel that was sent to me, I was careful to watch for anyone who might need an extra hand. I watched and eventually assisted a fellow stranded traveler as she dragged her suitcase behind her, clutching her cane as she took each step. She was grateful I offered to wheel her suitcase next to me, and I was thankful I took the time to look around me that late evening. It didn’t require much of me except the forethought and intentional awareness of those needing help, even when I was exhausted, too.
Talk about our tagline of “Sharing the joys and challenges of families in the midst of Life Unexpected”! I have had a few moments of joys and challenges.
Cheers to you families who are able to travel with your family members with disabilities. I know you are always aware. We see you; we applaud you; we respect you!
Here are a few links with suggestions for your travels:
Listening Library: Be Aware (Barbra Streisand)
“Finally, all of you, be like-minded, be sympathetic, love one another, be compassionate and humble.”
(1 Peter 3:8 NIV)
Be Aware
When the sun is warm where you are
And it's comfortable and safe where you are
Well it's not exactly that way, all over
And somewhere in the world
Someone is cold, be aware
And while you're feeling young
Someone is old, be aware
And while your stomach's full
Somewhere in this world
Someone is hungry
When there is so much, should anyone be hungry?
When there's laughter all around me
And my family and friends surround me
If I seem to be forgetful, remind me
That somewhere in the world
People are weak, be aware
And while you speak your mind
Others can't speak, be aware
And while your children sleep
Somewhere in this world
A child is homeless
When there is so much, should any child be homeless?
Oh no, not even one child
Be aware
Songwriters: Burt F. Bacharach and Hal David
Be Aware lyrics © BMG Rights Management, Royalty Network
Thanks for sharing your imperfect experience. Great reminder, Juli, to be aware of what’s going on around us, and to offer help as we can. ‘Loved that Streisand song!
oh man!! Hope is a ”nestler“ and has to nestle her face in her pillow, arms back like a fish out of water. Haha. It’s so cute, but she Has NEVER been able to sleep in a car seat because of it. Driving home late one night, wr gave her a melatonin gummy thinking maybe she would pass out. 3 hours of angry screaming child. 😭😬