This past weekend, I spent time thinking about a great line from a classic American film:
“There’s a great big world out there…….just look three inches up, I beg you.”
In the movie, a kid named Stuart is forever engrossed in his Smartphone. For example, his team is playing a “lacrosse-like” game (Quidditch, for you Harry Potter fans), and Stuart stands on the field downloading the latest app while others run around him. His only focus is his Smartphone.
In one scene, another character begs Stuart to look three inches up from his phone so he wouldn’t miss what’s going on around him. So he wouldn’t miss life.
Ok, so maybe it’s not a classic film (if there’s a Smartphone in it), and it really isn’t that great of a line. But, it’s the deeper meaning that got me thinking.
Sometimes we are so focused on one part of our lives – one event, one circumstance – that we miss the bigger picture… the great big world out there.
My last blog focused on the anger I feel about Adriana’s Spinal Muscular Atrophy (SMA) diagnosis and the incurable disease she has. This weekend, I was able to focus “three inches up” and see our world a bit differently……and realize that our life is quite wonderful!
Understandably, much of our time revolves around Adriana and her needs: her therapy sessions, ensuring she’s eating enough to gain weight, taking steps to minimize her risk of getting sick, etc.
Even a minor respiratory infection – one that a healthy child can recover from in a couple of weeks – can be much more dangerous for an SMA child. So, the first sign of a cough or runny nose can send us into a minor panic.
See, Adriana lacks the motor neurons in her spinal cord that control, among other things, respiratory muscle function. For example, her cough is weaker, and she can’t clear mucus from her lungs as easily. So her risk for pneumonia is greater.
One way we try to prevent Adriana from getting really sick is by using what’s called “The Vest”. It’s a machine with two tubes that connects to a vest that Adriana wears. The machine lightly pulsates, simulating a repetitive cough. Adriana simply sits there, and the machine “coughs” for her, shaking her lungs to loosen up any mucus that builds up. It’s a preventive therapy, which means we do it every day, 20 minutes a day, whether she’s sick or not.
[Adriana doing her “Vest” therapy, with her giraffe Fio at her side]
Our support system of family and friends in Lima has given us more than a few opportunities to “escape” for an hour or two. Sometimes Gaby and I enjoy a date night. We’ll run out to do some shopping by ourselves. And even a few times, our family has gotten away for the weekend.
An escape from the routine!
Gaby’s childhood friend, Claudia, has one of those hearts that can fill up the ocean. She would do anything for Gaby, and whenever we get the chance to see her, she’s quick to offer to hold Adriana, if even for a few minutes, to free us up to do other things.
This weekend, we drove a couple hours outside of Lima to a resort club in the country that Claudia and her family belong to. This particular club is crowded during the Peruvian winter (July-September) because the sun comes out and it’s warm, while Lima and much of the coast is cold. But being it’s now December, and many people are targeting the beaches, the club was pretty much deserted.
It was perfect!
Claudia and her husband, Israel, have a five-year old boy (Gabriel) and a 15-month-old girl (Luanna).
Our five year old, Santiago, ran and played with Gabriel.
They chased the multitude of cats that seem to be taking over the club. Fortunately, they never caught one.
They rode scooters.
Santi especially loved playing with his new remote-controlled car that Gaby’s friends Angie and Edgar gave him for his birthday last month.
We went to the pool and the small zoo. We rode horses and paddled boats.
We grilled in the evenings (Israel is a BBQ artiste), drank wine, started a fire in one of the several fire pits on the grounds (perfect for the cool evenings) and just plain relaxed.
[Santi and his remote-controlled car]
[Adri and daddy enjoying a horse ride]
[Santi crossing the bridge to the boats]
[Adri and daddy on the bridge]
[Ready to board the boat]
[Santi rowing because he wanted to do it “by himself”]
Shifting the Focus
For that 48 hours, away from the therapists and the wheelchair (which we’re slowly introducing to Adriana) – with doctors and nurses out of mind – I moved my line of sight just enough to experience the joy that is our daughter.
How her face lights up when we chase cats along side her brother, while she sits in her tricycle and we push her along or carry her in our arms and run for her. Eventually, as she grows into her wheelchair, she’ll do it on her own.
She enjoys a warm fire – just like the rest of us. She sits in our laps or next to us all by herself. It’s funny and encouraging when she says (or sometimes yells) “don’t hold me” or “don’t touch me” when she wants to sit by herself, without our hands on her. She knows she can do it by herself, so we happily oblige with our hands just far enough away to catch her if she loses balance.
[Adri and Santi roasting marshmallows]
She enjoys standing in her stander where she can play with her princess castle. We hand her the princesses above her head so she can reach up and grab them – keeping her arms and hands moving. It’s all part of her continual therapy.
[Santi ringing Adri’s castle door with his Transformer]
There’s no set time for a therapy session; it’s whenever we can make Adriana work on her balance or work with her hands and legs to minimize muscle weakness. Any action where she’s raising her arms or pushing with her legs is essential in maintaining the strength she has.
Another activity Adriana especially enjoys is swimming, which is wonderful therapy for SMA kids! In the water, you virtually eliminate gravity, which allows Adriana to move her arms and legs freely. And, the resistance from the water helps her work her muscles.
We’re very hopeful that a new independence will come in the swimming pool, just as it will when Adri masters her wheelchair.
It’s a hope that I think is always there in my mind, I just have trouble finding it sometimes.
SMA is so unique in how it strikes each of its victims. Another child with the same SMA Type II diagnosis Adriana received may have significantly different needs.
Adriana is doing really well, thank God!
She hasn’t needed a feeding tube because she’s been eating well enough to gain weight (slowly). She doesn’t need a tube to help her breath. And, we’ve only had a few minor health scares so far.
We have much to be thankful for!
A New World Brings New Perspective
One final thought.
There was one point during our weekend that I literally looked up a few inches and took sight of a different world not a few miles from the club.
Through the trees that surround one of the several swimming pools on the property, you can see, plain as a day, a hillside that was invaded by poor families who no doubt sought a home that they could call their own.
At night, it actually looks pretty because this particular “town” is lucky enough to have electricity. So yellow lights fill up the hillside, and the darkness masks the poverty.
It’s not an uncommon site in Peru. Look one way, and you see a 5-star resort; turn 180 degrees and you see abject poverty.
And although it didn’t sit well that I was enjoying a relaxing weekend while these families were probably out doing back-breaking work for a few dollars a day (if that), it did help me realize something.
Though our lives forever changed that June day we found out Adriana has SMA, we are so lucky to have what we have……family and friends that love and support us, no matter what! And, the resources to help her in her fight!
Now, it doesn’t mean that I’ll never complain again (because it’s what I do best). And, it doesn’t mean I’ll never have a negative thought about the disease that weakens Adriana’s body.
But as long as I’m able to read inspiring stories of so many SMA children living life to the fullest – and the heartbreaking stories of so many families who have lost their innocent children to SMA – I’ll be quicker to take a turn onto life’s more positive road, with God’s strength to guide me.