ONCE UPON A GENE - EPISODE 058 - Turkey Soup for the Soul
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Based on the Chicken Soup for the Soul books, filled with feel-good stories that lift your spirit, Tyra Skibington and I present this special feature just in time for Thanksgiving-- Turkey Soup for the Soul. Grab the tissues and enjoy these heartwarming, uplifting stories of friendship, inclusion, community, perseverance and kindness.
Respite Rescue
We had a trip to Italy planned for our 20th wedding anniversary and all of the respite set up in plenty of time beforehand. Just a week before leaving, we were told our respite had to be cancelled. We were about to resign ourselves to cancelling our trip of a lifetime, as we had never asked friends to help us out this way. When one of our longest friends' husband, who had been recently laid off, hopped on his motorcycle and headed out to our place to watch Ben while we were away. He had never watched Ben for us. We were so overwhelmed and we were so grateful. And then our business partners who had also never cared for Ben stepped in and offered to keep him for one week as well. This was a huge deal for someone who has never dealt with a special needs child despite the fact that he was having a lot of seizures at the time. I remember sitting on a patio in Venice sipping on prosecco with tears in our eyes just thinking about how our friends stepped up in the most amazing way for us. It might not sound like much, but it is a big deal to have friends like that. It's just amazing.
Noise-Cancelling Headphones
Before this pandemic, I couldn't really imagine my everyday life as a mom of a special needs kid getting any harder. My husband and I made the decision years ago that after she started school, I would continue to stay home, as the daytime was my chance for respite. A time for me to get all of the things done around the house I needed to- nap, see friends, take care of myself as needed. Summers were always hard, even with all the scheduled activities and therapies, because as a sensory seeker, my daughter needs a lot of input and I just don't cut it. And then COVID-19 shut down the world and the stay-at-home mom, remote school life began. We're now entering our ninth month with her home full time and it is so hard. I have learned a lot during this time. No matter what the new challenges, you find a way to rise to it. You have to. You don't have a choice. I used to struggle with the three months of summer break, but here I am still breathing after eight months. You gather all of your resources, as limited as they may be, and dig deep to make it work. Even when it isn't working, you still keep trying. Keep searching for a new way. And you accept that you can't do it all and that will have to be okay for now. For me personally, the things that have helped me the most are my faith, being vulnerable with others and my noise cancelling headphones. Throughout the day, I try to listen to the Bible on audiobook, soaking in the fact that I'm not alone and that God is my strength. I listen to uplifting music. I look up and out to seek the beauty in nature. I let my friends and family know when I'm hurting and about to lose it. Then I hide in my room with my headphones on, under the covers, and breathe- one breath at a time, one hour at a time, one day at a time. And I remember that we are all struggling with this in some way. We aren't alone. And we are all trying to be the best that we can. It's a tough, tumultuous time and add that to a rare disease and it can be downright brutal.
Darby's Little Imprints
Many years ago, my husband was called to a conference out of town. We decided to pack the kids and do a trip. It involved him being out of the hotel a lot attending meetings and me managing a two year old, very disabled daughter and my four year old neurotypical son. We did all the things that families want to do when they go to a hotel, like experiencing the pool. My daughter is confined by braces and a wheelchair, but loved being in the water. I felt like I was doing a pretty good job, I felt good and rested. Everything was going great. We checked out two nights later and as we were leaving the lobby, a gentleman came running from the front desk and said "we have an envelope here for you". Inside the envelope was a note and $100. The note said "to your special needs child, for those who have been honored, I honor thee". I still think back to that moment 10 years later and we kept the note. When I think about the baby book, I don't have the baby book filled with all the things that a normal family would have, but that note means so much to me because we were seen and it's so lovely to be just seen. I've often thought about Darby's legacy- these little imprints that she's putting on those we interact with. This instance happened to be a stranger in a hotel.
Silver Linings of 2020
There is so much to be thankful for, but there are two significant things that quickly come to mind. In a bit of a bizarre way, I'm grateful for the opportunity to slow down and reset. Although the global pandemic of 2020 has caused more harm than good, more loss than gain and more pain than joy, it has also caused me to take stock of what is important to me. In a sense, it has helped me identify the difference between things that are distracting and things that are meaningful. I'm also grateful for a career in a field that is considered essential that has taken precautions to protect the health of individuals while also keeping me employed. I'm thankful that, while many things have been stressful, I have not had to worry about my income, allowing me to help others in my community.
Gracious Gesture
A dad wrote in about a experience he had when traveling with his son. His wife often took their child to the medical appointments. But on one particular trip, he decided to hop on an airplane with their disabled son. It's quite a bit of work to get the child onto the airplanes, but everything was going fine. As they were deplaning, he waited and waited, being the last off the aircraft because of his son's wheelchair. A gentleman came up to him and said "Merry Christmas", handed him a $50 bill and said, "I'd like you to get something really nice for your son".
A Poem for Jared
These tears that I hide inside, I hide for you.
The smiles that I smile, I smile for you.
The walls that confine you try to beat you down.
But that isn't your style,
And that makes me proud.
From the beginning, you've been joy.
The years haven't changed you a bit, my boy.
You have a wonder in your eyes, the world in your heart.
Nothing can stop you.
This is only the start.
You never asked for anything but give everything in return.
You were born a teacher from whom people can learn.
From veterans to kids and people on the street.
Nobody is a stranger, just a new friend to meet.
I sometimes wonder what it would be like seeing you drive or going for a hike.
To have a child no worries of the unknown.
But then I feel blessed for you are my own.
What ails you, my son? Why don't they know?
Can anyone tell me and help me on this road?
You pray to be whole, not in the traditional sense.
Just to climb trees or sit on a fence.
Life is what you make it, but try as you might,
I know you get tired of this whole fight.
Your love of the vets and the children you see,
You're silently suffering but smiling with ease.
They do not see the pain you're in.
All they see is the smile and the love as their friend.
Your wants are few but your dreams never die.
You just want to walk and be a regular guy.
What you don't get is your perfect and pure.
That is simply how God made you,
That is for sure.
The tears I hide inside, I hide for you.
The smiles that I smile, I smile for you.
Never give up.
Keep up the fight.
You're a warrior.
You have the night.
Inclusion Field Trip
When our daughter was in grade six, we were going to be finishing with that particular school and were moving schools. My daughter had been followed by many of the same kids for almost six, seven years of her life, which is a beautiful thing. When we joined our grade six class, the teacher and I got together and talked about what this year could look like. She suggested that we flip what we've been thinking of when we talk about inclusion. And then the idea came up that instead of Darby always being added to whatever the activity was in the school, we would actually bring the school to Darby. We invited Darby's entire grade six classroom to our home and we set up stations of inclusion. One of the stations had the oxygen saturation monitor where the kids broke into groups, they all got to check their oxygen saturation and then learn about what that means. The second station was the ceiling track and lift where they got to lift a giant teddy bear from the floor and learn how Darby moves from point A to point B. The third station was a syringe water fight because Darby is fed through a G-tube. The last station was to ride the lift up to Darby's room and see what a room looks like when you have a kid with low muscle tone. It was a really beautiful exploration in what I think inclusion is, which is not just putting Darby in the regular world, but bringing the regular world into Darby's world. What I loved about it was the questions that came afterwards and all of the light bulbs that you could literally see lighting up on each of these kid's faces as they learned that it's not just as simple as getting up from bed to go to the bathroom in the middle of the night. Also, understanding their bodies a little bit differently and learning about oxygen saturation levels. It opened up a really great conversation and I think the kids talked about this experience for many weeks afterwards.
Kindness Means Everything
It's a tough tumultuous time. Add that to a rare disease, and it can be downright brutal. Challenges abound. And there's even challenges to the challenges. Some things that helped keep me going are kindness, compassion and support. And that's what I want to highlight in these examples. One is from someone I see in person every day. One is from those I know are always there, even though I don't get to see or hear from them often. And one is from communities involving many people I don't even know personally. From the onset of my symptoms, and then again, at the beginning of the pandemic, my 11 year old daughter has been so helpful, supportive, compassionate and kind. Not only does she step up at home with me and my family on a daily basis, she has also written thank you notes to postal workers, delivery drivers, and trash and recycling employees who work in our area, organized lunch for local school, fire department and doctor's offices, offered her money to help someone in need buy their medicine, helped her online school peers with their math homework after class. She's just the sweetest and a wonderful example to us all. And I'm so grateful for her. Other instances of kindness come from my friends. It's been so difficult not seeing them, feeling isolated and lonely ever since my symptoms intensified last year. Of course, everyone has their struggles and is very busy, especially now. When people make time for me, it means the world. Recently, I've been able to connect with one of my dear friends over zoom a couple of times. It's been wonderful to catch up and also to not feel like I'm enjoying my much needed beverage alone. Another pick me up came from a couple of friends and their family members who live across the country. They sent a special package to my house and it contained an out-of-the-blue gift and letter. The words on the paper meant just as much if not more than the gift. It also explained that the included virtual reality headset was intended to help me be able to enjoy the moment, even in sickness by doing things I never thought I'd be able to do any more in real life. They wanted to do something for me, not out of pity, but so I could have some fun. I can't express how appreciative I was for the thoughtfulness and perspective it took for them to think of me in this way and then to go above and beyond for the gesture. Finally, I'd like to recognize the community of kindness I've noticed on social media. I know there's plenty of dark holes out there. Yet, there is also plenty of kindness, including the person reading my words right now. One of my favorite things to see is others who are in need of something, anything really, receive support. Just in the last few days, I've seen interactions that include people offering to hop online with others who may be alone during Thanksgiving, others inviting people to reach out through DM's if it would be helpful, and plenty of supportive, encouraging, empathetic messages. The kindness and support found in these communities, with many people not even knowing one another, is inspiring and heartwarming. I've lost a lot and I know others have to. I'm very thankful for all of these examples and I know there are many more out there in the world. If you need anything, a listening ear, some support, or kindness sent your way, you can always reach out. I'm here. Happy Thanksgiving.
Brunch with a Side of Generosity
Many years ago, we were visiting from out of town to one of our closest major hospitals for yet another round of appointments. We made some time and sat in a popular brunch place in a hip neighborhood with our family of four, including our daughter in a wheelchair who has severe disabilities. I remember two things about this visit- the sweet waitress who looked my daughter straight in the eyes and asked what she would like to drink, even though it was very obvious that she would be unable to reply, and the waitress getting teary-eyed telling us the tab had been cleared when we asked for the bill. There was a note on the bill that said "angels are watching over you". We were unable to thank these people because they had left long before us. All of the waitstaff came over and shared the moment with us.
LINKS AND RESOURCES MENTIONED
Once Upon a Gene Channel with The Disorder Channel
EPISODE 040 - Physical and Emotional Well-Being for the Caregiver with Tyra Skibington
TUNE INTO THE ONCE UPON A GENE PODCAST
CONNECT WITH EFFIE PARKS