Tag: Support

New Year, New City

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I have struggled to write this post. I’m not sure why, but it’s been hard for me to put into words why we decided to pack up and move our family to Los Angeles at the end of 2019.

Maybe it’s because four years earlier, we’d moved to Nashville to be close to family. Maybe it’s because after three years there, we’d finally assembled the right therapy and medical teams for Solly. Maybe it’s because people usually move for work: it’s unusual for a family to move for the well-being of their child.

But that’s just it. We moved for Solly. We moved for Bea. We moved for our entire family. We began 2020 as residents of Los Angeles.

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Count Your Blessings

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When we were on vacation, we received some news that isn’t great.

Don’t worry: Solly is healthy and happy and nothing about that has changed. I’ll write more specifics later, but, in short, we were notified by a specialist that Solly might not be a candidate for SDR, a potentially life-changing surgery that would permanently eliminate his muscle tightness. We have to do some legwork – a sedated MRI and a consultation in St. Louis – before we know the answer.

But, this post isn’t about SDR. It’s about how I deal with potentially bad news.

img_1821When you parent a medically complex child, you quickly learn that this life is an emotional roller coaster. One day your child does something amazing, something that doctors predicted he would never be able to do, and then the next day, his journey takes a step backwards – or, on some days, many steps backwards. As easy as it is to wallow in bad news and feel down about whatever that backwards step is, I’ve found that allowing those negative feelings to stick around is not only not productive, it also tends to rub off on Solly and Bea. If I choose this route, no one is happy and we remain at a standstill until I’m able to dust myself off and move forward. Continue reading →

A Nanny for Two Adorable Children

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Why don’t you guys take a break tonight from poopy butts and sick kids and go have some dinner and drinks. I can stay till 9 so you’ll have plenty of time for dessert too!

Mike and I received the text above from one of our nannies while I was en route to Solly’s first-ever dentist appointment, after a sleepless night thanks to a teething and diaper-rashed Bea. Texts and conversations like this are fairly normal from her and our other nanny: “Camie, go for a run! I’ve got the kids. Go ride your horse. Go take a nap! TAKE A BREAK!”

To them, nannying is a job, yes, but in the 15 months and 8 months that we’ve employed Nanny Jen and Catherine, respectively, each woman has become an extension of our family. They love our babies, go above and beyond to learn handling methods, feeding techniques, equipment, doctors’ and therapists’ names, and help me with research and brainstorming ideas for just about everything. They get what both of our babies need and also act as a continuation of me around the house, doing laundry, wiping the counters, letting the dog out, basically doing whatever needs to be done to keep our household running smoothly.

I feel so incredibly comfortable leaving my babies in their care. I don’t know what I’d do without them.

When we moved to Nashville, we largely chose to move so we’d be closer to family for some much-needed support. What we didn’t realize was how much support we needed.

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Whatcha Say

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“May I ask what he has?”

I blinked my eyes several times. Did I just hear the Starbucks barista right? Did she just ask me what condition my son has?

“Excuse me?” I said, with a smile.

“What does he have?”

“Oh, Solly? What does he have? You mean …….. He has CP,” I said quietly, nervously. I was hoping that’s what she meant by her question, not wanting to make her feel awkward if it wasn’t.

“Oh, CP! My oldest has Asperger’s. I’m a special needs Mom, too,” she replied. “Bye, bye, Solly. Come back, soon!”

This conversation was such a breath of fresh air that I literally skipped back to the car with my chai tea latte in one hand and Solly in my other arm.

When you have a special needs child, every outing has its share of stares. It used to bother the heck out of me and keep me inside the house. Now, I’m so used to it that I don’t notice, I don’t have time to dwell on it and, quite frankly, I don’t care if a handful of strangers stare at my obviously delayed and different child. However, one of the hardest parts of being a special needs Mom is feeling different and outcast from the general public, and the stares certainly don’t help. The problem, I’ve realized, is that unless you are a special needs family, you simply don’t know what to do or say when you see a child or person who’s a little bit different. And, instead of saying something to that family or child, you might wonder “what’s wrong with that child” and worry about what to say and decide it’s best to say nothing at all.

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The Right Kind of Support

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Before I had Solly in my life, social media was a place to simply share photos, articles, humblebrag, and occasionally whine. Back then, even though I was working in digital marketing, I felt myself growing increasingly annoyed with all the oversharing on all platforms and was particularly ready to pull the plug on Facebook (hello, addiction!).

Then, I had a special needs child. Because of HIPPA, our doctors and therapists couldn’t connect me with other parents going through a similar journey. I connected with a few parents while in waiting rooms, but their child’s diagnosis wasn’t always the same, so I still had questions and craved advice from parents who had been there, done that. So, I started googling and realized how many special needs parents were making those kinds of connections on social media – mostly, Facebook, but also Instagram and Twitter. Over the past three years, I’ve started one support group and have followed and participated in several others. These groups not only help me discover new therapies, new medical treatments, and doctors that can help Solly, but they also give me a place to vent and share wins with people who go through similar ups and downs every day. Plus, I’ve even gotten to meet several local parents who I’ve since met up with in person! (These meet ups are refreshing – it’s always like reconnecting with a long-lost friend.)

A daily walk in the shoes of a special needs parent is certainly not an easy one. But I’ve found that with the right support group, life has gotten a little less scary and, in most cases, I’ve even felt empowered when making decisions for Solly.

If you’re new to a cerebral palsy or stroke diagnosis, or you’re simply looking for help with some of the alternative therapies, here’s a list of my go-to support groups on Facebook:

General

KISS Pediatric Stroke Support (I started this support group with two other stroke Mamas so we could not only connect parents with one another and share experiences, but so we could also follow what non-profits were doing to advance pediatric stroke awareness. We’ve grown to over 1,000 members and have parents from all over the world.)
Mom’s of Pediatric Stroke Survivors (If you’re local to the middle Tennessee area, be sure to join this one. It’s based in Nashville and gives lots of good resources on local therapies and doctors, plus the Mama who started it puts together a meet up every few months.)
CP Warriors, Mommies, Daddies, Grandparents, and Caregivers
2014 Cerebral Palsy Babies Support

Medical & Alternative Procedures

SPML – Selective Percutaneous Myofascial Lengthening
HBOT for Pediatric Neurological Conditions
Parents for HBOT
Stem Cell Therapy for Cerebral Palsy and Brain Injury (Parents Information)
Pediatric Cannabis for CP & Other NeuroMuscular Disorders
Pediatric Cannabis Therapy
Anat Baniel Method Parents/Caregivers

Know of any others I should add to the list? Feel free to send them my way!

As I mentioned above, I’ve also met some parents and gotten great info on other social media platforms. I’ll do my best to put together a post with my favorites, so if Facebook isn’t your thing, stay tuned!

Solly and Bea

Another type of support often seen in our house: sister helping brother!