Today, I am indeed a working mother.

My job is a pretty involved one.

I spend a lot of time on the phone scheduling appointments and dealing with insurance issues.

I administer medication several times a day and perform routine medical care. I am constantly on call in case of a medical or behavioral emergency.

I can also multi-task like nobody’s business, and I work well under stress.

I am a working mother, but not in the way most people would imagine. I am a carer- for my own children.

It sounds odd, doesn’t it? How can a parent be a carer (or caregiver as we are commonly referred to in the United States)?

Aren’t we supposed to take care of our children regardless of their condition? There isn’t a simple answer when it comes to having a child with special needs.

When you are a parent of a medically fragile child or any child with special needs, you cease to be just their parent anymore.

The role expands to include care you wouldn’t normally provide if the child was developing typically.

For our family, it meant a lot of medical duties. Tube feeding for my daughter, and then when my youngest son came along a few years later, more tube feeding and a whole lot of tracheostomy care.

It also meant  giving up one income because one of us; either my husband or myself, has to be home with the kids at all times.

When my eleven-year-old daughter Lilly was an infant, there was no daycare that would accept  her with all her medical needs.  I had no choice – I had to quit working to care for her.

Even if I could have put her in daycare, I probably would have been the worst employee ever; having to take time off several days a week for all of her medical and early intervention therapy appointments.

Here in California, we are fortunate enough to have In-Home Support Services, which will pay a parent  to be a carer/ care provider.

To determine eligibility, the child will be evaluated and assessed by social workers and physicians. If they qualify, a certain number of billable hours are allotted to them depending on their needs.

The child must meet strict medical criteria, and the family must have no able and available caregivers locally.

In a two-parent household, one of the parents must be working or in school full time, and the other unable to work  because the child requires a certain level of care.

The hourly wage is minimal, considering that many of us do the work of trained nurses, but I am grateful for the program. It has allowed us to stay afloat financially.

Being a carer for anyone, much less my own children, would not have been my first choice of occupation.

It’s hard, messy work; it goes way beyond the typical messes of childhood. It can be physically and emotionally draining.

It may not have been my first choice, but I honestly wouldn’t have it any other way now. It has allowed me to bond with my children in a way I never imagined.

It has given me a new perspective and taught me that patience and perseverance pay off. I’ve also learned that it is impossible to compartmentalize my life into labels of  “parent” or “carer.”

I am both, but to my kids, I am simply “Mom,” and that is the best label of all.

No matter what organization they happen to work in, volunteers end up touching countless lives.

They give the gift of their time, their expertise, and enrich the lives of so many by also giving from their hearts.

Our family’s life has been impacted by the kindness of volunteers many times.

Two of our children spent three and four months respectively in the Neonatal Intensive Care Unit (NICU) in a hospital that is two and a half hours away from where we live.

To split time between the hospital and life at home with our other children was agonizing, but necessary.

The silver lining was that this hospital is one of the best in the country, and the care they received was impeccable; not only from the staff but from the women and men who came in during the day and loved on our babies when we could not.

They rocked them, fed them, snuggled them, and gave them that close human connection that is so imperative for newborns to thrive.

They would also pop in when we were there and check up on us; not because they had to, but because they genuinely cared.

As the kids grew older and we traveled back and forth to that same hospital for procedures and appointments, our appreciation of the volunteers grew even stronger.

They were the ones who helped calm my kids and keep them occupied before they were wheeled back to the operating room.

After one exceptionally taxing day of back-to-back surgeries for two of my kids,  the volunteers were the ones who brought  an endless supply of toys to my son’s room after surgery so he wouldn’t be bored.

They were the ones who spent hours playing “spa” with my daughter- braiding her hair, painting her toes, and reading aloud to her when she grew tired.

Knowing that our kids were in such good hands allowed my husband and I  to have some time away from the hospital wing to grab a bite to eat, a hot shower, a short nap; time away from the beeps, dings, and whirs of the equipment in the hospital rooms to destress and recharge.

Volunteers also saved the day at a long assessment appointment we had at a building on the hospital’s campus.

My husband and I were able to stay in the room while our youngest son was being examined and assessed, while a few teenage volunteers were keeping our other three kids engaged by playing on the small outdoor playground, having some Wii video game competitions, and reading lots of books.

What could have been a long, stressful appointment trying to manage four bored kids in a small exam room was made much easier by these amazing people.

Our latest encounter with volunteers involved our youngest son’s Make a Wish experience.

A team of two local women who were assigned to help execute his wish went above and beyond with visits, answering all of our questions, and including our other children in the whole process.

His wish to meet Dora the Explorer at Universal Studios in Hollywood went better than we could have hoped for and was followed up just last week with a handmade scrapbook of our trip – made by volunteers- so that we have something to always remember it by.

Many times, I wonder if the volunteers really know how much impact they make on people; especially families like ours with multiple children who have special needs.

I feel like I could say Thank You a million times or write Thank You notes until my hands cramp up and it will still never express the gratitude I feel for what they have done for us.

So, if there are any volunteers out there reading this- you are priceless.

No matter what your field of volunteering happens to be- you will make a difference in so many lives and touch so many people.

In many cases, the work is thankless, sad, and difficult, but please know that you are appreciated beyond words for all that you do.

After having my two children with special needs, I noticed a profound change in myself.

I was frequently on edge, constantly worried, and exhausted all the time.

I thought my symptoms were simply a case of being overwhelmed and sleep deprived, like any mother of young children is bound to be.

Then I read an article online one day about caregivers who experience Post Traumatic Stress Disorder (PTSD) and recognized myself in many of the symptoms the article described.

According to the National Institute of Mental Health, PTSD is “a disorder that develops in some people who have experienced a shocking, scary, or dangerous event.”

Caregiver PTSD is real, and it is prevalent. It may be mild, or severe, and it can hit you when you least expect it.

From nightmares to paranoia, to full-on panic attacks, it affects more parents and caregivers than you could imagine, but many don’t recognize it for what it is or feel guilty, as I did, for even considering that they have it.

I had always associated PTSD with soldiers who had come back from a war, or people who had been through something extremely traumatic.

In the past twelve years, I’ve seen my children go through some grueling things: high-risk and emergent surgeries, respiratory failure, and being poked and prodded more times than I care to remember.

I’ve had to contain my child during some very intense, very public meltdowns to keep her from hurting herself.

It was traumatic for them, and it was also traumatic for me.

It’s understandable that they are fearful of anything medically related, but I was just doing what any parent would do, right?

In those harrowing moments, I did what I had to do to help my kids get through whatever was going on.

I didn’t realize the damage it had done to me until much later when the nightmares, flashbacks, and anxiety kicked in. It comes in waves.

Sometimes I’ll be fine for months, and then something will trigger a memory: a smell, or a sound, and the next thing I know my heart is racing and I have trouble catching my breath.

Another thing I realized is that I am almost always in a state of hypervigilance. Hypervigilance is when your brain and your body are constantly on high alert, and it is a common symptom of PTSD.

I’m on high alert during cold and flu season, because I know that a simple cold could lead to a hospital stay for my son if we don’t catch it early.

I’m on high alert for things that may trigger my daughter into meltdown mode when we’re out and about. When your brain and your body are on high alert all the time, it can take a toll mentally and physically.

There are days when I do the bare minimum because that is all I have the energy for, and there are some nights that I have to take melatonin to sleep because my brain just won’t “turn off.”

To all the other parents of special needs kids who are struggling with PTSD, whether you have mild symptoms or have those days when it’s hard to function- be kind to yourself.

Author Eleanor Brownn stated that “You cannot serve from an empty vessel,” and that’s the truth.

Reach out to someone, whether it be a friend, a family member, or a professional. Talk about the hard stuff- don’t suffer in silence.

Let people help if and when they offer and be specific about what you need (I know it’s hard- I am the worst at asking for or accepting help).

Keep a journal – sometimes it helps to sort out your thoughts on paper.

Most importantly, know that you are not alone.

Our trach journey began in January of 2011, when our fourth child, Chance, was born.

We knew there would be some complications.

My 20-week ultrasound revealed that his lower jaw was extremely small, and it was determined that he most likely had Oto Palatal Digital Syndrome; a rare genetic condition that runs in our family.

My daughter and I are both affected as well.

Within hours of his birth, it was determined that he would need a trach.

His lower jaw was positioned so far back that his tongue kept flopping back, blocking his airway.

Surgery was not an option yet as his jaw needed time to grow.

We weren’t novices at having a special needs child.

My daughter has a feeding tube and was diagnosed with autism before the age of three.

The trach, however, was a whole new ballgame and a very scary prospect.

Within a few days, however, the trach became the least of our problems.

After a four-month stay in the Neo-Natal Intensive Care Unit (NICU) involving acute respiratory failure, a staph infection in his lungs that required several weeks of IV antibiotics, and too many feeding issues to count, he came home with a feeding tube and what seemed like a ton of medical equipment.

Our living room resembled a small hospital room.

Along with the feeding pump and feeding tube supplies, we had a humidifier, a pulse oximeter, a suction machine, a nebulizer that was adapted for his trach, an IPV machine that kept mucus plugs from building in the lower lobes of his lungs, and endless boxes of trach supplies.

It was a little overwhelming.

The humidifier was extremely loud, and the pulse oximeter came loose when he wiggled and set off the alarm, which caused more mini heart attacks than I’d like to remember.

Going anywhere with him was a challenge.

Going anywhere with small children can prove difficult but going anywhere with a baby who has a trach is a major ordeal.

Aside from all the medical equipment and emergency bag that must go everywhere he goes, there had to be two adults in the car with him when we went anywhere; one to drive and one to suction as needed.

For the first year or so of his life, the only time we took him anywhere was to doctors’ appointments.

Illness has always been a nerve-racking issue. We have three older kids, all in school, who seem to bring home every virus that comes around.

In his first four years, he was hospitalized no less than five times for respiratory ailments.

We have been very lucky these last few years, but it is still very scary and stressful when he does become sick, as he can go from bad to worse in no time.

Having a child who is medically fragile can be isolating. Not only do we have to be careful when we go out, but in our case, there are very few people that we can relate to.

There aren’t that many kids with trachs locally, but I have found several kindred spirits through the internet.

These are people who deal with the same issues that we face every day, who know what I’m talking about when I ask about granulomas in the stoma or who feel my pain when I freak out because Chance has started yanking on his trach when he gets upset.

They may not know it, but they have been a port in the storm on many occasions.

The last seven years have had a profound effect on everyone in the family.

As chaotic and stressful as life can get, we are constantly reminded that we have so much to be thankful for and we have learned not to sweat the small stuff.

Chance has come a long way.

He is able to wear a cap on his trach during the day and just has a humidifier on his trach at night.

He has had two surgeries on his jaw which have improved his speech and most of all his eating- we were able to remove the feeding tube in 2013 and now he eats more than his two older brothers combined.

Having a child with a trach has been one of the hardest, most humbling journeys we have ever been on, but I would not trade one minute of it.

For more information on Global Tracheostomy Awareness Week and the Global Tracheostomy Collaborative, please visit here.

Created by the United Nations in 1994, its goal is to promote awareness of the many ever-changing social and economic issues that affects the family unit.

We have four children; two of whom have a variety of special needs-both medical and behavioral.

It’s easy to get caught up in the hectic day to day life that is special needs parenting, but the purpose of International Day of Families is to promote family bonding.

One of the most difficult aspects of being a family with special needs is being able to include everyone in every activity that we do.

The theme of this years’ International Day of Families is “Families and Inclusive Societies”.

Since this is a global day of observance, inclusion may look different from one region to another, and from one family to another.

For us, it means making an honest effort do more things as a family unit.

To a parent of any child with special needs, the holy grail is a society that accepts their child’s differences unconditionally, so I’m kind of thinking we are defeating the purpose by staying home or having one parent go somewhere with a couple of the kids while the other stays home- just because it’s easier.

Sometimes the reasons for staying home are valid, but it’s also easy to fall into the trap of making excuses to justify why we can’t do certain things.

Fear of dealing with meltdowns, having to carry necessary yet cumbersome medical equipment around, or trying to reign in our youngest son, who is very high energy, has no fear of strangers, and has obvious facial differences that tend to get a lot of whispers and stares.

It’s a lot.

When the kids were younger and the medical and behavioral issues in particular were at a peak, I would see social media posts of friends on family outings and vacations and feel so envious that we weren’t able to do those sorts of things; that just wasn’t our reality most of the time. My daughter is on the autism spectrum and has had a revolving door of emotional triggers so taking her anywhere outside the house felt like we were playing Russian Roulette. A lot of the time either my husband or I stayed home with her for her own well-being.  But even now that the kids are older and some of the behavioral issues have subsided, there is still comfort in our safety net of home.

My goal on May 15th is to put the fears and excuses aside and do a local family outing. We may not always be able to pull it together and get out as much as we want; we are definitely a work in progress, yet I am determined to make the effort because I know that it will not only benefit our family but give us the opportunity to educate and promote inclusion for kids like ours.

Whether we choose to go out or stay home there are dozens of ways that we can be intentional in bonding as a family. Here are just some I hope to try in the near future that will ensure that everyone can participate.

We can unplug our electronics and have a game night or watch a movie.

We can find a simple meal that everyone can participate in helping to prepare.

We can attempt a movie at the “dollar” theater- that way if someone doesn’t last the whole movie we are not out a lot of money.

We can go to a local park and take a picnic lunch.

We can go on a short hike locally.

This list will grow, as we find out what works for us and what doesn’t, and I am looking forward to creating more intentional bonding time for our family, one step at a time.