If you've been keeping up with Charlie's progress, you may know that he's fallen behind on physical milestones. Typically, a 20-month old child is running around and talking with some proficiency. Charlie has required some extra help so far, and his recent MRI confirmed that he has a mild case of Cerebral Palsy.
What are we dealing with here?
Cerebral Palsy is a sort of catchall phrase for a spectrum of neurological and neuromuscular conditions. What does that mean? Well, let's start at the beginning. Charlie was born prematurely at 31 weeks via emergency c-section. He suffered a small right side brain bleed, causing some damage to the white matter of his brain, the connective tissue between nerves. As a result he has developed hypertonia (increased muscle tone) in his back, legs, ankles and feet. This causes his back to arch and allows him much less flexibility. It also manifests as an asymmetrical pronation in his feet. He stands up on his toes, while his left foot lies unnaturally and shows less stability and control than his right.
Good news
The good news is that Charlie's case is considered very mild by all accounts. In the limited time we've had to absorb this news, we've seen kids who face much greater challenges than our little guy will. We actually consider ourselves quite lucky in that sense.
It's also important to note that his disability is NOT progressive, which means it will not get worse. In fact, we've been assured by his many specialists that he will learn to work with and around this disability. He may never be an olympic sprinter, but he could potentially still enjoy skiing or biking if he wants to. His fine motor skills do not appear to be as affected as his gross motor skills. And while he still has to complete a speech therapy screening, Charlie does seem to be intelligent, creative, sweet, and very charming.
More good news
Charlie is getting more outside help than I ever realized was available. Sometimes it seems like his life is rigidly scheduled between doctors, specialists, therapists, daycare, swim lessons, etc. But what it means is that there are many people who care about his wellbeing and are invested in his progress. Currently, he sees a physical therapist, an occupational therapist, a speech therapist, a pediatrician, a neurologist, an orthopedist, an orthotist, a chiropractor, an ENT, and has also been treated for 3 cases of Croup, a couple ear infections, and god knows what else. And did I mention he spent his first month of life in the NICU at Saint Marks?
Charlie has recently had a pair of plastic braces custom made for his feet and ankles to correct his pronation and tiptoed stance. They're lightweight and relatively unobtrusive. We're so lucky to live in an era of advanced technology and specialized research. After only a month in his braces, Charlie has shown significant improvements in his stance and stability.
Recently Charlie was accepted by Shriner's Children's Hospital, which is a wonderful place with a wealth of resources for kids with neurological disorders. And since Shriner's operates largely with the benefit of philanthropic donations, they address the proper care BEFORE they address payment. This has taken a huge burden off of our shoulders and we're so grateful for their help. I encourage you to learn more about Shriner's and consider making a donation if you're ever able.
Another treatment we're considering is called hippotherapy, where children with neuromuscular difficulty ride horses to encourage stability, core strength, balance, posture, muscle tone, and emotional development. We're fortunate to live near Park City's National Ability Center, which offers this service. And while it's not covered by insurance, we're happily saving up to string together a series of visits.
How are we doing, you ask?
Remarkably, Charlie has handled all of this with grace and resilience. He's a happy little boy and he inspires us to work even harder to keep that smile on his face. Often when I feel tired or inadequate, I'm able to draw strength from him. For example, when suffering through a recent workout I thought: "Sure I could run 2 miles instead of 3, but what would Charlie say?" I've learned that giving up on myself means giving up on him. And that's not something I could ever do.
We've been told it's natural to feel anger or a sense of loss when your child is diagnosed with a disability. And I'll admit we've been through the ringer, feeling frustration and exhaustion. But grief would be an exercise in self-indulgence we can't afford. Charlie is such a gift, we're just grateful to have him. He enriches our lives every day.
It's also important to note that Charlie doesn't need our sympathy. What he needs is toughness. He will have to be tough to live the life he deserves: one of possibility and hope; and without excuses or self-pity. So for that, we'll have to learn to be tough.
We'd like to thank our families for their support. Sarah's parents have been amazing. They help out with daytime care, offering at least a day a week so we can get work done and enjoy an occasional day alone. And my family has also shown great support from New Hampshire, checking in and offering words of encouragement. Charlie is surrounded by love and for that, he's the luckiest guy I know.
