As advised to Nicole Audrey Spector
Nothing is everlasting.
Tomorrow might convey a step again as an alternative of a step ahead.
Optimism is the one sane alternative.
Have a good time the wins.
These are only a few of the issues that I’m repeatedly studying because the mom of two kids with particular wants. I’m additionally all the time remembering that every little thing can change in a flash, leaving you in a world that feels unusual and the other way up.
That’s what occurred to me and my household.
It began when my oldest son, Carson (now 11), was just a little over a 12 months outdated. We observed that his actions and skills weren’t like different children his age. After a number of docs’ visits, he was initially misdiagnosed with cerebral palsy. His signs appeared to get considerably worse after he got here down with a light fever just a few months later. It was like his physique went on pause and wouldn’t reply to the “play” button.
It was solely after a number of irritating years of visits to specialists and lots of rounds of genetic testing that he was later precisely recognized with MEPAN syndrome, a genetic neurological dysfunction. A progressive situation that will get worse over time, MEPAN is so terribly uncommon that there isn’t even a Wikipedia web page for it. In actual fact, there are solely 13 recorded cases in the entire world.
A couple of 12 months after Carson was born, our second son, Chase (now 10) was born. He additionally has MEPAN syndrome. Each he and his brother are on the extra extreme finish of the MEPAN spectrum and have critical challenges on account of the situation. Neither is ready to sit, stand or feed himself independently. They each put on diapers, and use a wheelchair and speaking gadgets since they can’t communicate.
However Chase and Carson have superb strengths as effectively. They’re shiny and engaged and resourceful. They’re glorious communicators, and may do extra with their custom-made tablets than most of us may ever dream of doing with our smartphones. And they’re cognitively equal with different children their age.
Plus, they’ve fairly nice dad and mom.
It might sound boastful, however you merely gained’t discover folks higher educated on MEPAN syndrome than my husband and me. And we’re dedicated to shedding extra mild on the illness, which is why we launched MEPAN Foundation, a nonprofit that works to maneuver scientific analysis ahead to find therapies that can assist our sons and different sufferers with MEPAN have a greater high quality of life. That is vital as a result of there are presently no authorised therapies for MEPAN syndrome.
There’s actually nothing we wouldn’t do for our boys, however there’s solely a lot inside our energy. For some issues — like defending them from sure preventable illnesses — we should depend on others.
Each Carson and Chase have acquired all vaccines out there to children their age, together with the vaccines for Covid. However so long as others stay unvaccinated, they’re in danger.
Now, it’s possible you’ll say, “However they’re vaxxed. In the event that they do get Covid, how unhealthy may or not it’s?”
To that I say, “Do we actually want to seek out out?”
In the event you’ll recall, it was solely a light fever that’s thought to have triggered essentially the most extreme of Carson’s signs.
Docs suspect that given their extremely delicate methods, Carson and Chase are immunocompromised. Personally, I’ve all the time fearful that, based mostly on their extreme disabilities, it might take them longer to recover from a virus. My concern has turn into extra intense amid Covid, which has been reported to have long-term effects in children, corresponding to pain, anxiety and depression, amongst different signs.
What would any of those signs imply for teenagers like Carson and Chase, who’re already coping with so many different well being points? And what would a critical sickness imply for caregivers like my husband and me, who’re working so arduous to remain above water as we are likely to our boys? Our caregiving shifts are unending, and so many nights we move one another within the corridor glassy-eyed and irritable as one among us goes to verify to see who fell out of the mattress.
Our marriage is powerful, however caregiving 24/7 takes its toll on even the deepest and healthiest of bonds.
The efficacy and security of vaccines shouldn’t be up for debate, and but conspiracy theories proceed to unfold like deadly viruses themselves. I’ve come up towards them firsthand.
I attempt to not decide others for his or her beliefs as a result of I really feel that everybody can and will make their very own selections — even when they’re selections I (or science) disagree with. However selecting to not vaccinate your kids towards preventable illnesses isn’t only a misinformed perception, it’s a possible risk to children like mine.
It’s true that Covid has not affected children as badly because it has adults — however it has nonetheless affected them. Over 16,000 children have died from Covid. Different illnesses are much more unforgiving towards pediatric sufferers. Measles, for example, claimed the lives of 207,500 people worldwide in 2019, and most of those who died were children.
It’s arduous to get folks to vary their minds, and I don’t anticipate to speak many individuals out of their mindset. However maybe only one one who doubts vaccines will consider my boys and all of the caregivers on the market — after which suppose once more.
This useful resource was created with assist from Merck.
