Physical Therapy, Occupational Therapy, Speech Therapy, Developmental Intervention, Cardiology, Ophthalmology, Audiology, Neurology, Physiatry, Urology, Orthotics, Gait Trainers, Wheelchairs, Activity Chairs… these are just examples of the therapeutic and medical specialties and equipment that little man requires. Prior to the spread of COVID-19, as overwhelming as it may seem, it wasn’t too hard to keep up with all of this. And then… life basically just shut down!
Many children have so much more to deal with. Many medically fragile children require around the clock care.
In the beginning of March 2020, Braveheart was receiving 10 hours of therapy a week. It was a lot, but it was necessary for his development. PT, OT, Speech and DI allowed him to get that extra boost he needed to learn the things that “come naturally” to most toddlers. Then, as we went into lockdown, his 10 hours of therapy dropped down to 0 hours and became solely our responsibility. Us. His parents.
We’re grateful for telehealth, but let’s be honest here: telehealth is certainly not an adequate replacement for hands-on therapy with professionally and clinically trained therapists. Yes, the therapist are right there on our laptop screens telling us what to do and how to do it, but that can be pretty awkward. We are happy that we’ve always been those parents who paid attention during therapy sessions, but 1) little man does not cooperate with us the way he cooperates with his therapists and 2) again, we aren’t professional therapists or clinicians.
For an immunocompromised (due to his cardiac history) toddler with autism and an oral fixation (eeeeeverything goes right into his mouth!), we were not comfortable with enrolling him in pre-school last year. In addition to pre-school, he was supposed to resume adaptive aquatics/swimming for special needs kiddos, and begin adaptive gymnastics and hippotherapy (horse riding therapy). We also used to take him to the hospital for 3 therapy hours a week. But, alas, life has just been too dangerous outside of our clean, germ-free little bubble.
My entire household has been home since March 2020. That means we’ve been “stuck” at home for almost. Self-quarantined. We’ve turned down parties, we’ve barely met up with anyone at all, outings have been and still are brief, and with this wintry weather, we’ve not had much time outside of the house except for doctor appointments and occasional on-site therapies. In other words: it’s been quite lonely!
I’m an introvert and a homebody, so normally I love being at home. My idea of a fun day off is bingeing Netflix series or movies and spending time with my family. But 2020, for many special needs families, has certainly left us all feeling rather forgotten and forlorn. We’ve gone from seeing therapists 10 hours a week – and therapists really do start to feel like our “friends” – to seeing them briefly on the computer screen and barely being able to chat with them. People in general seem to have an out of sight out of mind mentality and simply don’t understand all the extra stress that comes with having a little one who requires so much extra medical and therapeutic attention.
I’m grateful to have my social media “family” who checks in on us, because they understand how difficult things are, but I’ve learned so many lessons about who our true friends are and who people we thought we knew truly are in general. It’s been a humbling experience and certainly an important life lesson. At first, we did mope about it. How come this person never even bothers to send a text? This person ditches every conversation we try to have. This person doesn’t even like or comment on my posts. And the worst woe-is-me moment I’ve had, perhaps, was the virtual heart walk last year in which literally no one joined us. We walked all alone; my mother, hubby, Braveheart and I. Honestly, I was pretty sore about that for a while, but I had to remind myself that some people just don’t understand the importance of our fight to raise awareness for CHDs.
This year, I’ve turned over a new leaf, so to speak. Our little guy will be 4 years old in July, and though he’s not your typical almost-4-year-old due to his delays, we’ve seen him work so very hard through this pandemic. We are so proud of him. It’s been difficult feeling like we’re the only ones who know him – not many friends understand the battles he faces daily – but again, 2020 has taught me not to dwell on that. He’s happy, he’s basically healthy, and he’s thriving! It doesn’t look like everyone else’s definition of thriving, but it is! He is AMAZING (and oh so adorable lol). Being furloughed from my job for nearly a year and counting has taught me to be grateful for what we have and to spend wisely Admittedly, I have a massive baby-stuff addiction and I also love to eat out and order in. But I’m working on it!
In April, we’ll be welcoming a brand new baby boy to our family and we couldn’t be more excited. It’s the next chapter in our exciting adventure! I can’t wait to see Braveheart become a big brother.
We might still be in a pandemic, but one thing I’ve learned is that there is always something to be grateful for and always a lesson to be learned!
If you’re like us and still self-quarantined, hang in there. For those who don’t have to be as strict: check on your friends, be understanding, be mindful! Check on your friends with children, without children, who are working, who aren’t working, who blatantly show that they need help, who don’t blatantly show it and appear strong on the outside. Remember, not everyone is comfortable with airing their struggles and asking for help. *raises hand* I am one of those who never ask for help.
To everyone: there’s a rainbow on the horizon. We got this!
A Heartsome Journey 