I was born with a rare genetic condition called Oto-Palatal-Digital Syndrome, although I never knew there was a name for it until my daughter was born in 2006 and diagnosed by a genetics team.

My mother was 41 years old when she gave birth to me. Back in 1972, this was considered ancient to be having a baby. I had a cleft palate, a small mandible, and two fingers (the middle and ring) on each hand that were fused together. The doctor, who had never seen a case like this, told my mother I most likely wouldn’t live more than 24 hours.

After I baffled everyone by surviving, the same doctor gently suggested to my mother that there were options for children like me and that she should look into them, as raising a child with issues like mine would surely be a burden.

My mother firmly told the doctor that she was taking her baby home.

My issues were attributed to a myriad of things from “old egg syndrome” to the fact that my mom smoked, although to her credit I believe she quit while she was pregnant.

As I grew older, I became more curious about my condition. I was told by my pediatrician that it was a syndrome of some sort, but because I had a mix of characteristics that were seen in a few other syndromes, it was hard to narrow it down. It could also be a fluke, I was told; a random mutation of a gene.

When my husband and I decided to start our family, we went for a genetic counseling appointment. I had flashbacks to high school biology class as the geneticist made a Punnett Square, and both of our medical histories were documented at length. It was determined that, although there was no definitive name for what I had, if I did indeed have kids, each child would have a 50/50 chance of inheriting my condition.

In 2004 I gave birth to our first child, a healthy baby boy. Almost two years later, I found out I was pregnant again. At my 20 weeks ultrasound. I found out that we were having a little girl, but the joy was dampened a little when the scan showed a small jaw, much like mine had been.

Although I had been mentally preparing for this since our genetic counseling appointment, it still knocked me for a loop, and I had a good cry in the doctor’s office.

Lilly arrived a day past her due date and was airlifted to a larger hospital two hours away from home due to her complications.

She had surgery on her jaw at five days old, and less than a week later I heard the words “Oto-Palatal-Digital Syndrome” or OPD, for the first time. It was bittersweet, as no mother wants her child to have a genetic condition, but now I had something I could work with. A diagnosis — something I could type into Google and research the heck out of. Or so I thought.

One of the first things I found out was that OPD is extremely rare. When Lilly was born in 2006, there were less than 60,000 known cases worldwide. The numbers continue to grow, as more research is done, but I still have yet to meet anyone in person outside my family with OPD. I have found stories of individuals on the internet with it, but they are few and far between.

We have learned that OPD is a spectrum disorder.

The three commonalities are a cleft palate, hearing loss, and webbing of the fingers and/or toes. Beyond that, an individual can have more severe craniofacial issues, intellectual disability, or heart problems; each case is unique.

My daughter had multiple feeding issues and severe gastric reflux that resulted in a feeding tube placement. She was also diagnosed with an intellectual disability, as well as autism, at the age of two and a half.

Our youngest son, who was born in 2011, also has OPD and does not have intellectual disabilities, but he had a tracheostomy tube placed at two days old because his jaw was extremely small, even smaller than mine or my daughter’s had been. His airway was compromised, and jaw surgery for him was not an option at the time.

At four days old he went into acute respiratory failure. He was retaining carbon dioxide in his lungs and had to be placed on a heart/ lung bypass machine called ECMO. He was later diagnosed with chronic lung disease, which is unrelated to his OPD.

After I learned of my daughter’s diagnosis, and therefore my own, I realized how NOT having a specific diagnosis when I was younger may have had its advantages.

I was treated like any other child when I was growing up.

I was aware from an early age that I looked different than other kids, with my smaller jaw, and unlike most of my classmates, I was pulled out a couple of times a week for speech therapy. Beyond that, I lived a fairly normal childhood. I strive to do the same for our children. Our diagnosis will always be part of who we are, but we will never let it define us.

On July 23rd, a recreational vehicle blew a tire on the outskirts of Whiskeytown Lake, a popular summertime destination about ten miles from where we live in Northern California.

When the tire went out, the metal rim hit the concrete and sparks flew onto the dry grass on the side of the road, igniting what is now one of the largest wildfires in California’s history, the Carr Fire.

It is now almost two weeks later, and the fire is still going.

Over 150,000 acres have been burned, thousands of homes have been destroyed, and several lives have been lost.

Wildfires are common in California from late Spring to early Fall.

The hot, dry landscape becomes kindling and every year we can expect various small blazes around town and especially in the wilderness that surrounds our small city; but this was nothing like anyone has seen before.

It produced a fire tornado that reached up to 143 miles per hour winds that ripped neighborhoods to shreds and came on so fast and furious that some had minutes to evacuate to safety.

Since we live in an area known for earthquakes and wildfires, our kids have had plenty of safety lectures.

We’ve talked to them about house fires.

They’ve toured fire stations, drawn maps of the house to plan escape routes and got to watch firefighters in action when our neighbor’s house caught fire across the street last year.

You can prepare your kids for all types of disaster scenarios, but the truth is that when it really happens, you find yourself winging it to get by.

Even though the fire thankfully never reached our part of town, our whole family has been affected by it, especially Lilly and Chance – our two with special needs.

Two days after the fire started, you could taste the smoke in the air.

The day after that, it reached city limits, and the evacuations started.

This thing jumped fire containment lines, a river, and a highway.

I obsessively checked Facebook for updates and any new evacuation orders.

It was far enough away that we weren’t in immediate danger, but close enough that we told the kids to pack one bag each.

Anything you can fit in the bag, I told them, but just one bag.

If we were to get evacuated in the middle of the night, we would need to be able to get out fast.

We packed, and we waited.

Since packed bags in our house equates to actually going somewhere, there was a little bit of confusion and a lot of frustration.

Lilly and Chance were having a very hard time understanding why we weren’t leaving, and while the waiting and uncertainty were stressful for us, it was torture to them.

Any parent with a child on the spectrum can tell you that waiting is not a strong suit.

The day came and went with no cause for evacuation yet, so we put two disgruntled children to bed, trying with no avail to explain, again, that we had packed “just in case.”

It was such an abstract concept to them that there was no justifying it.

We spent the next few days barely sleeping, watching news of the fire, and trying to keep some semblance of routine for the kids.

We kept our fingers crossed, and our bags packed.

Cabin fever started to set in; with the unhealthy air quality, playing outside was not an option.

Chance has chronic lung disease, which adds a whole new level of stress.

He has been doing amazingly well, but still every time he coughs or wheezes the anxiety flares up again.

We are starting to get a glimpse of the aftermath.

Whole neighborhoods have been wiped out.

Our city has a population of roughly 90,000, and over 30,000 people had to evacuate. It’s hard to wrap your mind around it.

Several people we know lost their homes.

Even though the worst of the fires is now far west of us, our nerves are still pretty active.

I don’t like being away from home for more than an hour or so.

I keep thinking, “What if a spot fire were to pop up in our neighborhood when I was away?”

I have been letting the kids sleep in my bed for both their solace and my own.

This area will be feeing the devastation of the Carr Fire for a long time to come; physically and emotionally.

The silver lining in this is that we have seen the community come together in wonderful ways, donating their time, their money, and their resources to the people who lost their homes.

It will take some time, but we will heal.

Now that the real danger is behind us (knock on wood) I’ve been able to sit down and process a bit, and I’ve come up with a few things I feel I need to pass on in regards to a disaster like this:

1. Be proactive. You never know when disaster may strike. No one thought this fire would make it past city limits, but it did. Make up a small emergency bag ahead of time for each family member that you can grab on a moment’s notice. Make copies of all your important papers and prescriptions and put them in one of the bags.
2. We have some medical equipment, but it’s portable, and I kept thinking of the folks who may have had a lot more and not that much time to evacuate. If you have a lot of equipment or it’s cumbersome, have a backup plan in place; find out your supplier’s policies ahead of time for this type of situation.
3. Make sure you have renters insurance or a good homeowners insurance policy in place.
4. It’s OK to feel every emotion known to man in a short period of time; fear, sadness, thankfulness, and survivor’s guilt are just a few of ones of the roller coaster we have been on.
5. Keeping a routine helped with the kids, as much as we were able, but they were still feeling overly anxious. Lots of reassurances, hugs, and cuddles were needed.
6. Most important of all- if you are told to evacuate, do it! Your house and your things can be replaced, but lives cannot.

I’ve always treasured the friendships that I’ve had throughout my life.

Some have formed from circumstance.

Some have drifted in and out, and some are only around for a season.

There are also the few who I am thankful to have been friends with for most of my life.

Still, I don’t believe anything has taught me about the value and meaning of friendship more than being a special needs parent.

In a world that can be isolating, scary, and uncertain, true friends will be willing to go along for the ride and support your family as much as you are willing to support them during hard times.

In the last twelve years, my friendship circle has narrowed considerably, and as sad and pathetic as that sounds, it is actually a good thing.

I have come to realize that where friendship is concerned, it’s quality that matters, not quantity.

To say that parenting a special needs child is stressful would be an understatement.

Our plates are often filled to maximum capacity. Many times we are operating on autopilot, and our friendships tend to get put on the back burner.

Not everyone can comprehend what it’s like raising special needs kids, and that’s OK.

There are the friends who “get it,” or at least try to, and I love them for that.

Then there are friendships that can be emotionally draining and toxic , and these traits are never more apparent in times of turmoil.

I have experienced my fair share of these, and it took me awhile to realize that these friendships were doing more harm than good.

These were long-term friendships, and I wanted to hold on and believe that things might change.

No one is perfect, and I would be lying if I said that the breakdown of the friendships was always entirely the fault of the other person, but ultimately I realized that these relationships were not healthy for either of us.

When they did eventually end, whether it was my choice or theirs, I felt peace rather than anger and sadness.

Those former friendships taught me to be more careful about who I surround myself with and  about the type of friend I want to be for others. In the world of special needs parenting, some of the following methods of support and understanding can go a long way.

Listen to what they say- not how they say it.

I had a conversation several years ago with someone where I was describing a really frustrating situation having to do with my son’s health.

I was emotional and a little swear-y, which tends to happen when my emotions run high (which she knew because she’d known me for twenty years).

After I poured my heart out, my “friend’s” only response was, “Jen! You swear too much.”

True friends will let you vent without judgement- even if dropping the F-bomb a couple of times makes them cringe.

Know that they don’t flake on or avoid events intentionally.

I would love to volunteer at my kids’ schools, or sign up to be on a committee, or schedule an appointment that is more than three months away.

But I can’t, because our life is such that one severe meltdown could wipe out a good part of the day, or one cold could turn into a hospital stay and throw a huge monkey wrench into arranged plans and obligations, leaving others to scramble and pick up the pieces.

Understand that they may not be able to do phone calls most of the time.

These days, texting is my preferred method of communication, along with social media.

Long gone are the days where I can sit and have a leisurely phone conversation.

For me, texting is still communicating in real time, and much easier than trying to chat while hiding in the bathroom (which is the only spot I can be alone, and even then, I get little hands pounding on the door).

Texting is not impersonal; it’s a necessity at this point for anything not medically related or non-emergent.

True friends also won’t gaslight, ghost, or create unnecessary drama.

I was accused once by a former friend of not being there for them during a rough period, which happened to be during the same time that my newborn was in the NICU fighting for his life.

No, I wasn’t able to be there because I was in survival mode myself; postpartum with a critically ill baby, which this person was well aware of.

I should probably clarify that these incidents I mentioned weren’t a one-time occurrence.

There were signs that these  friendships had been deteriorating for awhile; these were merely my “a-ha” moments that woke me up to the fact that maybe it was time to move on.

It’s not easy to be friends with parents who have special needs children.

Our lives can be unpredictable, and messy.

Our homes are loud and chaotic.

We are often cranky, broke, and tired. We may tend to bore you with endless talk of our latest medical and behavioral issues if you ask.

I’ve learned that if you are lucky enough to find those people that are willing to stick by you in this beautiful whirlwind, hang on and don’t let go.

Those are the friendships worth cultivating; they are your tribe.