Last month after seeing countless Facebook advertisements for a mystery subscription box themed after one of my favorite horror flicks, I caved in and signed up.

Ever since the package came, I’ve spent a few nights a week trying to decode, decipher, and seek answers to the first part of this puzzle.

After an appointment with a geneticist last week, I realized that having a rare genetic condition is a lot like trying to work through the mystery in a box that’s sitting on our dining room table.

I was born with a condition called Oto Palatal Digital Syndrome (OPD).

It’s so rare that I had no idea there was even a name for it until my daughter Lilly was born in 2006 and diagnosed with it when she was less than a week old.

When I was born in 1972, the doctors attributed my issues (small lower jaw, cleft palate, and webbed fingers) to the fact that my mother was 41 when she gave birth to me.

In 1972, having a baby at that age was practically unheard of.

When I was older, it was determined that I had some sort of syndrome, but they couldn’t pinpoint exactly what it was.

When I went in for genetic counseling when my husband and I decided to start a family, I was told that there was a 50/50 chance of passing down whatever I had onto any children we would have.

As it turned out, 2 of our four kids have OPD.

After Lilly was born and diagnosed, I had my first clue- a name, but back then, even hours in front of a computer yielded little information.

As time went on, I got more bits and pieces of information that would help me understand how I came to have OPD when there was no known history of it in my family.

I learned first hand that paying attention to the genetic lessons in high school biology paid off after all when the geneticist got out the Punnett Square, a diagram used to determine the probability of an offspring having a particular genotype.

Our most recent genetic appointment held the biggest hope for a “break” in the case- an order for whole Genome sequencing, which we had hoped to get for years, but insurance wouldn’t touch.

Now, thanks to a grant, we’ll be swabbing the inside of our cheeks soon and sending it off to a lab to be decoded and hopefully find some answers and be able to cross some “what if’s” off of our list.

I’ve learned a lot in the past 14 years of being a Mom.

Raising children with multiple medical and behavioral issues forces you to take stock of your life and realize what really matters.

I’ve lost count of the lessons that my kids have taught me along the way, but these are some of the biggest ones:

Unconditional love. To love unconditionally means accepting our children entirely and without restrictions or stipulations.

Many parents of children with special needs go through a grieving process upon learning of their child’s diagnosis- I know I did.

After the initial shock wore off, there was never a doubt in my mind that I would accept everything about my child, no matter how challenging.

Unconditional love also goes both ways.

For both of my kids with special needs, I am their person.

No matter how much of a hot mess I am, no matter how grumpy and exhausted I can be, I’m the one they come to find when they need something, whether it be a snack or a hug.

I secretly love this, even though there are times when they will literally search the whole house for me- when my husband is 3 feet away from them and perfectly willing and capable of tending to their needs.

My kids have taught me perseverance.

They have to try twice as hard to accomplish many things that come so easily to their peers.

It’s often a challenging, frustrating road that comes with its share of bumps.

I’ve learned that sometimes it’s ok to back off and that they will do things in their own time and their own way, and they have rarely proved me wrong. 

I’ve also learned the art of perseverance in fighting tooth and nail for their rights for over a decade.

Speaking of rights, one of the most important things my kids have taught me is to speak up and advocate.

I learned early on that I was their voice, and if I didn’t speak up, no one else would.

Becoming an advocate for them was equal parts difficult and effortless.

It was difficult because I am an introvert and used to avoid confrontation at all costs.

It’s effortless because not standing up for my babies was never an option.

When I became a parent, I never envisioned that my kids would teach me more than I could ever hope to teach them.

And there’s still a lifetime of lessons to learn.

It’s a question that’s on the minds of many parents of kids with special needs; “When will my child know they’re different?”

We worry about if and when they’ll notice, what they’ll say, and most importantly, how we’ll handle it.

Our moment came recently when my youngest son, Chance, randomly stated, “I have a trach. I’m different.”

Chance is almost ten years old and has had his tracheostomy tube since he was two days old.

He doesn’t know life without it.

Although he’s pointed out in the past that he has a trach (to us, to his teachers, to strangers in the waiting room at the doctor’s office), this was the first time he vocalized understanding that it made him different from other people.

I asked him what he thought that meant, and he just kind of shrugged. I explained that being different is cool and that he has something very few people have.

I have way more experience explaining his differences to other kids and emphasizing that they probably have more similarities and things in common than they do differences.

Still, this time there was no one else to compare to.

He didn’t seem upset about the fact that he is the only kid he knows with a trach, and I braced myself before I  asked him if anyone has ever said something unkind about it.

Realistically I know the possibility of him being bullied at some point about his disability is high, but it still stings to hear.

Luckily, he couldn’t seem to remember anything significant.

It’s distressing to parents of kids like mine to hear of people making fun of their differences because we just want so badly for everyone else to see what we do and for them to be accepted for who they are.

We don’t want our kids to be known as or referred to as “the kid with the trach,” “the kid with the feeding tube” or “the kid with the wheelchair” because even though those things are part of who they are, they’re not all that they are.

Halloween is less than a month away. With many cities and towns putting restrictions on festivities or even banning trick or treating altogether, the holiday won’t be canceled, but it will look a lot different.

Decorations will still go up, we’ll still carve pumpkins, but our annual trip to the pumpkin patch and trick-or-treating will be out of the question for us this year.

Between the sharp rise of COVID-19 cases locally and the beginning of cold and flu season, we opt to lay low and celebrate at home.

For the past few years, we have gone trick or treating at a local nursing home. It’s a great set-up; the residents gather in the common room of each of the three houses on the property and hand out candy to the kids as they walk through.

They love seeing all the littles dressed up and having that interaction, and we parents have a safe, well-lit place to bring our kids to be loved on and get some treats. This year with all the COVID-19 restrictions, the nursing homes are, of course, off-limits.

I searched for fun, alternative options to the traditional Halloween activities and found some creative ideas that I wanted to pass on:

Zoom costume parties: Gather a bunch of family and friends and show off your costume while catching up.

Candy scavenger hunt in the backyard: Hide the candy in the backyard and give the kids clues on finding it. If it rains, just move the search inside!

Glow in the dark eggs: Some stores sell glow in the dark eggs to hide treats for a nighttime candy hunt.

Go wild with decorations: Many neighborhoods go all out with Christmas or holiday decorations- why not do it with Halloween decorations this year?

Trunk or Treat or Drive through Trick or treating: Many places are hosting safer alternatives to trick or treating- you can check your local events calendar and, most likely, find a few.

Make “Boo buckets”: Boo Buckets are fun to make and don’t have to be expensive. Think of them as a Halloween- themed Easter basket. You can do one for your kids in place of trick or treating or leave one as a surprise on a friend or family member’s doorstep.

“Drive-in” Movie Marathon: Have kids decorate boxes as cars and have a Halloween movie marathon!

This year, if the weather cooperates, we’ll be doing a scavenger hunt in the backyard and a scary movie marathon afterward. How are you planning to celebrate this Halloween?

These past few months have been pretty stressful for everyone.

Still, if there has been a silver lining to this pandemic, it is that many medical practices and clinics are providing a telemedicine option for those who are high risk.

As the parent of two kids with significant special needs and multiple specialists who are two and a half hours away from home, this has been an absolute blessing.

No long drives with cranky kids, no worrying about being exposed to anything in the waiting room, and not taking up a whole day just for a 20-minute appointment is enormous in our world.

I love the fact that I can click on a button and do an appointment by Skype or Zoom. It’s a considerable time and money saver, and I hope the option is extended beyond the pandemic.

Even though some specialties require a face-to-face visit, (such as our pulmonologist-you can’t exactly listen to lung sounds over Zoom). The more virtual appointments we can do, the better.

We were introduced to telemedicine a few years ago when my daughter was referred to a psychiatrist. We have no almost no pediatric specialists in our rural area, but our local clinic had an option for virtual visits. They have always taken place at the clinic, but during the stay at home orders, we were able to those appointments from home as well.

Tele-health expands access to much-needed care in so many ways, whether we are in the middle of a pandemic or not.

It not only reduces the risk for vulnerable people, but gives people in rural communities, people with little access to reliable transportation, or people may not have the mobility or the resources (such as a caregiver) to leave their home, the ability to receive the quality care they need and deserve.

It can also reduce emergency room visits. How many people automatically head to the emergency room for minor symptoms? I know I’m guilty of this, especially with our youngest son who has chronic lung disease. I don’t regret bringing him in, because I would rather be safe than sorry, but it would have made life so much easier to be able to have a virtual assessment before to at least gauge whether it was warranted to bring him in at all.

Telemedicine can also be cost-effective for the clinic, with lower overhead and liability costs. It also increases efficiency in scheduling and has a higher appointment compliance rate, according to recent studies.

Hopefully, Telemedicine options will continue to increase beyond this weird new abnormal that we find ourselves in!

September is Craniofacial Acceptance Month in the United States.

Approximately 600,000 people in the United States live with a craniofacial condition – or facial difference.  That 600,000 includes two of my children and myself.

We have a rare genetic disorder called Oto Palatal Digital Syndrome (OPD) with Pierre Robin Sequence. This condition involves, among other issues, a small lower jaw that compromises a person’s ability to breathe.

Pierre Robin Sequence is one of the 19 conditions classified as craniofacial by the Children’s Craniofacial Association of America (CCA). Although these conditions differ in severity, the people they affect all have some noticeable facial differences.

The goal of Craniofacial Acceptance Month is to spread awareness about craniofacial issues and facial differences.

Society has come a long way in fostering an environment of acceptance for those who may look different, but it’s clear that we still have a ways to go. Recently, there was a  challenge on TikTok, which had parents scaring their kids with mugshot type photos and pictures of people with noticeable facial differences, having them believe that they were face timing with their new teacher, and then filming their reaction for laughs.

Teaching your children to be afraid of someone who looks different, or letting them believe that facial differences are something to be used as the butt of a joke is not only ableist, it’s poor role modeling.

When the movie “Wonder” based on the novel by R.J Palacio, came out in 2018, it sparked the #choosekind movement. As someone with a facial difference, and as the parent of kids who also have facial differences, I was hoping that people would not just choose to be kind, but that they would choose to be educated.

There are lots of ways that people can educate themselves about craniofacial issues, but here is a small list of things that you can practice or pass on to others if you or a loved one has a facial difference.

Don’t presume competence. It has been my experience that some people automatically assume that if you have a visible disability or difference, then your intelligence must also be affected.

Do ask questions. It’s ok to be curious and interested. It’s not ok to stare and make rude remarks. I love it when people ask about my kids, even though questions from the younger kids tend to be blunt. Usually, when I explain our condition, they accept it and move on.

Don’t pull your kids away if they are staring, commenting, or pointing. Instead, use it as a teaching moment and encourage them to say Hi. If you avoid the situation, it can send the message that it’s ok to fear or avoid people who look different.

Don’t try and befriend or be nice to someone with a facial difference for clout. Like anyone else, we don’t like being used or objectified to make someone else feel better about themselves.

People with facial differences (or any visible disability for that matter) have historically been marginalized and discriminated against based solely on the way they look. Things have gotten better over the last few decades, but we still have a long way to go.

I’ve been a stay at home mom since my daughter was born almost 14 years ago. I had to quit the job I had at the time because she was medically fragile, came home from the NICU with a mountain of medical equipment, and no daycare would take her.

It was not a decision I took lightly; I did it out of necessity, and we took a devastating financial hit that took years to bounce back from.

As my kids got older and life calmed down a little, I started freelance writing as a part-time gig, and even though I hope to grow that business, I have since realized that I have a full-time career. It is one that I neither wanted nor asked for, but I have over a decade of experience, and I’m damn good at it. I realized that being an advocate for my kids is just like having a full-time job. It doesn’t pay- in fact, many times, it costs me money, but the benefits can be rewarding.

Advocating means spending hours on the phone with doctors, specialists, insurance companies, and medical supply companies. Making appointments and trying to navigate the red tape that often comes with insurance covering whatever your child may need. Ordering supplies and doing follow-up calls when needed supplied don’t arrive or are backordered.

Advocating means doing hours of research and note-taking, sometimes late into the night, seeking information that will help your child reach their full potential.

Advocating means being an organization wizard, keeping binders of notes and records, all color-coded and procrastinating putting it all on a flash drive for safekeeping (or maybe the flash drive part just applies to me!)

Advocating means going over your child’s IEP with a fine-tooth comb before signing it and taking notes at each meeting. It also means building a relationship with your child’s educational team as best you can, because these are the people who are most likely going to be spending almost as much time with your child as you are.

Advocating means education- in our case educating everyone from friends to medical staff about the condition my children (and myself) have, as it is very rare, and they are unlikely to meet anyone else with it.

I used to be painfully shy growing up. I would literally hide behind my mother’s legs when someone would try to speak to me, but in advocating for my kids, I found the voice I never knew I had.

I could smell it as soon as I opened the front door, and I could see it laying heavy in the sky. Thick, grey smoke that meant that there was a wildfire somewhere close. Not close enough to worry, but close enough for the wind to carry the smoke right over us.

It’s a familiar smell here in Northern California in the summer, as peak fire season runs from August to November, give or take a couple of months. Many people living here are still traumatized by the fires that swept through the state in 2017 and 2018. My in-laws lost their home in one of those fires, and then the next year, one-third of my town was decimated by a fire tornado, a rare phenomenon I hope never to see again in my lifetime.

Our family has an added reason to be anxious during times like these.

Our 9-year-old son, Chance, has chronic lung disease, so in addition to the stress of the Cold and Flu Season in the winter, we now have to worry about the fire season. Wildfire smoke can be extremely harmful to the lungs, especially for children, older adults, and especially in our case for our little guy with compromised lungs.

The air quality was so bad in the summer of 2018 from the numerous back-to-back wildfires in our area that Chance ended up being admitted to the hospital with pneumonia. We had an air purifier in the house, and we wore masks each time we had to go outside. We did extra breathing treatments and kept him well hydrated. We did all the things, and he still got sick. To say it was frustrating and scary would be an understatement.

It turns out we weren’t alone.

According to the American Lung Association, “studies of children in California found that children who breathed the smoky air during wildfires had more coughing, wheezing, bronchitis, colds, and were more likely to have to go to the doctor or the hospital for respiratory causes, especially from asthma.”

So now every time there is smoke outside so thick, I can taste it, I go straight into a state of hypervigilance.

All windows closed, air purifier on. We have central air conditioning now as opposed to the swamp cooler we had in our previous house, which makes a world of difference in keeping the smoke out.

Fire season is something I have had to adapt to, although I’ll never get used to it. Like cold and flu season, it’s one more thing we have had to accept, and do the best we can to get through it.

The start of the new school year is creeping up on us, and this year, instead of buying supplies off of school lists, we’re making decisions that we never thought we’d have to make – whether or not to send our kids back into the classroom.

Some don’t even have that option, depending on where they live in the United States, as areas that have high numbers of COVID-19 cases are beginning the school year virtually.

For those of us who have the option of sending their kids back, it seems like there still are no good choices. When your child has a disability or is medically fragile, it feels like you’re choosing between their physical and mental health.

It also seems like whatever we do, someone is going to think we’re doing the wrong thing.

Our 9-year-old son has chronic lung disease, and simple colds have landed him in the pediatric intensive care unit for weeks. Even though his health is more stable now, there are too many unknowns about COVID-19 for me to feel comfortable sending him back to school just yet.

Despite his health history, this choice was in no way easy. I would love for my son (and all children) to go back to school, but the risk is just too high for us, and many others like him.

Some may feel that I’m making this decision out of fear, and they would be right. Fear of him getting this virus and his body not being able to handle it. Fear of him having to be put on a respirator again, or worse, an Extracorporeal membrane oxygenation (EMCO) machine. An ECMO machine, in case you have never heard of it, is a bypass machine that is a last-ditch effort to save someone’s life. He’s already been on one, and I don’t care to see him on one ever again. He also regresses every time he goes through a serious illness, and it can take weeks or months to gain back what has been lost.

If I’m totally honest, this decision is selfish on my part. I’m doing it to save my sanity.

Chronic lung disease and just the everyday life of parenting children with special needs comes with a lot of worry and anxiety. I don’t need to add any more to my list.

I’m also not convinced he will be kept safe enough. All the personal protection equipment and sanitary precautions the school has won’t keep other parents from bringing their sick children to school, and by the time it’s discovered that the kid is sick, they’ve already exposed everyone around them. And with exposure comes quarantine and school closures. Even if he was lucky enough to not be exposed, those types of disruptions would be detrimental.

I’m sure many others are grappling with the same choices.

As much as I want to go back to the way things were, this new abnormal is here to stay for some time. Until we know more about COVID-19, or there is a universally accepted treatment or prevention, I’ll put on my homeschool teacher hat, drink copious amounts of coffee to get me through the day as usual, and face this as we do will all the hard things that come our way- head-on!