Phone calls to multiple providers for our son. Running our older son to school and then driving directly to daily therapy appointments for his younger brother.

Emails to catch up on and more phone calls to insurance, medical supply companies, and the county.

I am constantly working on home therapy with our son or I am busy catching up on housework that has been put off for far too long.

I have friends although my social life is fairly non-existent; and I’m sure that’s partly my problem. But at the end of a long day I’m exhausted and the last thing I want to do is leave my house.

We are running here to there all day long, phone calls, interacting with therapists, but yet I am lonely. I talk to many people, text girlfriends, and keep up with friends on social media.

So, no, I am not sitting alone in my house all day completely isolated from the outside world. But, yes, I am lonely. This isn’t fixable by nights out with friends or a vacation away.

The loneliness of a special needs mother is a different kind of loneliness.

It’s lonely with worry. Is the next illness going to send our son to the hospital, or worse, will we lose him forever?

Are we doing the right thing? Are we doing the wrong thing? Will our son ever walk… or talk? The worry is constant and never goes away – alone or in a room full of people. It never leaves.

It’s lonely with guilt. Should I have done more? Am I doing too much? Did I lose my temper on our older son today when my patience was running thin after a night of no sleep?

Is he going to grow up and think all we did was care for his little brother? Will he resent us? Do our boys know just how much we love them?

It’s lonely with thoughts of the future. Every year that passes is another year that we have had the ability to care for our son, but there may come a day when we no longer can.

Instead of thinking of his college days, marriage, or fatherhood I am thinking of making our home accessible and pushing away thoughts of the possibility of placing him in a care facility. Our future will always include caring for him.

It’s loneliness with all of the should haves, would haves, and could haves. It’s loneliness with far too many what ifs? It’s knowing countless of other mothers are in similar shoes, but yet you are still alone.

We are a tribe of mothers who are warriors for our children. Lonely, exhausted, but strong. And I know this journey is a tough one, but as lonely as we may feel we are all in this together. Alone, together.

If part of this journey included loneliness, I willingly accept it. The thoughts of worry, guilt, and the future will always linger – but the joy, pride, and love will trump them all. Always.

If he had just ONE thing to work on I feel like I could manage a little better but when it’s everything it can be a little daunting!

I often wonder how are we ever going to accomplish all of this?

I recently implemented a new strategy using the days of the week that is most definitely working for us, and hopefully it works for you too.

It all started with Sensory Saturday and has grown into much more!

Motor Monday – This is the day I try to make my focus on gross motor skills.

As much as possible I encourage him to prop sit on his own, practice his quadruped, and lots of standing.

He is extremely curious so if I hide things from him he will work hard to try and get to them. He’ll crawl to a favorite book, or do his very best to pull himself up onto the couch to see the iPad.

Taste and “Talker” Tuesday – Feeding issues are so incredibly hard to deal with and communication is vital so I have dedicated two days of the week to focus on these.

These days I allow extra time for meals to ensure he is watching us eat as well as being offered new tastes and textures.

He still does not take anything orally but with more practice and presenting items to him we are slowly making progress.

Walking Wednesday – Our walking ladder frame may be one of his least favorite pieces of equipment in our house, but I’m hoping with repetition he will come to like it. Or at least tolerate it!

This day we do quite a bit of sit to stand using the ladder and help him initiate steps. We also make a point to get in his gait trainer more often than other days.

Taste and “Talker” Thursday – Along with the tastes of food I make more time to “play” with his communication device to practice accuracy.

He is not always able to be accurate with his choices on his communication device so using the pages on his device with book choices or colors we are able to practice being more accurate.

For instance, I will show him a blue toy and ask him to tell me where the choice for “blue” is on his device.

Fine Motor Friday – Our son still does not have a pincer grasp so we work hard on this as well as using his pointer finger.

In his chair with a tray we will play with smaller items and try to pick them up, poke play-dough, or use his pointer finger to trace maze books.

We will also practice coloring with markers, crayons, or use ink pads for finger prints.

Sensory Saturday – This may be my favorite day!

We fingerpaint, make slime, play with his sensory bins with beans, rice, and water beads…anything a little messy!

He also likes to play with tissue paper and shredded paper. We also have a platform swing and a small ball pit that he enjoys.

Sunday – Day off!

We will still put him in his stander or gait trainer and always use his communication device, but Sunday is a day where I don’t have any plans for the day or try to accomplish his weekly tasks.

Of course our son still has plenty of time to just be a kid!

But for me, pairing a day of the week with a general task he needs to work on makes his list of “to-dos” feel more manageable.

I hope you find this strategy helpful, and please share what helps you manage your child’s therapy homework or skills to work on.

He seems to keep losing hearing in the high frequencies; high pitch bird chirping type of sound.

His audiologist informed us we may need to get him new hearing aids as his only amplify up to 85 decibels, which is the sound of a passing diesel truck or snowblower.

There are days when unexpected bad news can roll off my back and I accept it without issue, but there are also days where I allow myself to go “there.”

There are days when I don’t look at the silver lining and let myself feel sorry for him.

I feel sad for him, his big brother, our family; I get jealous, angry, and have a short pity party about how unfair life can be.

I really try not to do this too often because getting stuck in the negative and feeling sorry for yourself never gets you anywhere positive.

But, hey, I’m human!

On the drive home from the audiologist I starting thinking of the “what ifs” in his life.

What would life be like if he were healthy? What would life be like if he could run out to the car and hoist himself into his carseat?

What would life be like if I could hear his little feet run to the edge of my bed in the morning to greet me? What would life be like to hear his sweet little voice say “mom?”

As I thought more and more I realized just how silly my little game was. I had to stop.

This was really going to get me nowhere and quite possibly get me stuck, “there”, and it’s not a place I want to get stuck.

Playing the “what if” and comparison game will get you nowhere.

I looked back at him on our drive home and thought at least you’re happy.

And silly, stubborn, curious, determined, brave, strong, sweet, smart, loved….the list went on and on but most of all I thought at least you’re OURS.

I know it can be incredibly hard not to compare your child to the vibrant healthy one you see at the playground.

I know it can be difficult not to visualize all of the things your child “should” be doing or accomplishing.

My nephew is nearly the same age as my son with complex medical needs, so many days it’s staring me straight in the face.

Don’t get me wrong I still occasionally go to the place of grief and comparison, but I don’t get stuck there.

You can’t. Your child deserves you to be where they are.

Be present.

Be in the moment, not wishing the days away wondering about the, “What ifs..”

Go there if you have to, but be brief. And always come back.

I didn’t have the urge to take my son and leave. Oddly enough, I felt ok, not great, not sad, but just ok.

Our son is nonverbal, continuously tube-fed, has severe hearing loss and wears aids, and a very low muscle tone which means that he cannot sit alone, stand, or walk.

He’s also stubborn, funny, very affectionate, and extremely charming. He loves kisses, books, and his iPad.

And when he gets excited or is content he can be very vocal and flails his arms and legs all over which can be confusing to people who don’t know him.

I can’t tell you how many times we go to an event and all I want to do is retreat to the safety of our home.

Away from the stares, ignorant comments, and small twinges of sadness knocking on my heart waiting for me to release them all.

I spend time looking at other children and wondering what life would be like if our child was typical.

I watch kids his age run around while we lay on the ground together as a passerby asks how old he is, and then when I say “four” I watch their face change to pity.

I watch their face drop as they have no idea what else to say to us.

Somedays I just don’t want to do it. I don’t want to feel alone in a room full of people. Have you ever felt that way?

There can be people all around me but yet I feel alone because the majority of everyone surrounding me simply doesn’t understand our life.

They don’t know what it’s like to have a child with a complex medical condition who has severe developmental disabilities.

Our day to day life is anything but typical. So, sometimes it’s easier for me to just NOT participate.

I don’t want the whispers behind our back or the blatant stares. I don’t have to face any of that if we just stay home.

But as I sat with our son enjoying the laughter at the pool while he happily watched his iPad in the breeze something occurred to me.

There was nowhere else he would have rather been. He kept looking up at me with his sparkling eyes as if to tell me he was enjoying himself and was thrilled to be there.

His little legs were going crazy. He was happy. He had two of his favorite things; his mom and his iPad. And as much as I would have loved to be the mom in the pool with a glass of wine, I wasn’t.

As much as I would give to have him jumping off of the side of the pool, he wasn’t. I would love to take this all away from him and make his life easier, but I can’t.

I realized then that longing for the life I dreamed of is futile. My life is happening right now. Our lives are now.

I was sitting, alone, on the sidelines with our son. We were sitting together. We weren’t alone.

And at that moment, there was no where else I would have rather been.

There is rarely a time when we can sit back, take a deep breath, and say, “All is right in our world.”

Lately I have been thinking more and more about what would happen if I was in a car accident. How would I know that our son would receive the best care and attention he needs?

I am his voice, and what would happen if I was unable to be that for him in that moment?

This may sound a bit crazy, but these are things we do need to think about as parents, especially parents of nonverbal and medically complex kids.

So instead of wondering and pondering I decided to write an email to our local police department.

A summary of the email is below:

Good afternoon,

I was wondering if someone could answer a few questions for me?

Our son is 4 years old, nonverbal, developmentally delayed, and medically complex. I was hoping someone could help me understand the best way to ensure he receives proper attention and care in the event of an emergency.

In the special needs community there are many parents that put magnets or stickers on their cars. Are these effective?

Do first responders even look around the car for anything that would identify a special need?

We have been told to put a sticker of some sort onto his car seat that lists his needs. Is this helpful? Is it even looked for?

Are medical ID straps attached to the seatbelt helpful? Is the best and most effective way simply a medical ID bracelet?

Off I sent my email and awaited a response.

Evening came and I received a voicemail from an officer asking if I could give him a call back.

Wow. I thought to myself, that’s great service.

A few minutes went by and then there was a knock on our door from a uniformed police officer wondering if it was a good time to talk?

He came in, sat on our couch, and we had a wonderful conversation regarding my email.

I’d like to share what I learned in the hopes it can help other parents who have the same concern as me!

1. ALL of the tools that give any information about your child are helpful.

2. Do not put any stickers on windows because they break.

3. Stickers are helpful, but should not be the only information available. What if you are hit where the sticker is and it’s illegible?

Not every officer is going to take the time to look around at each sticker right away in an emergency, since YOU are the first priority.

4. Medical ID bracelets are a must. Information such as diagnosis, emergency contacts, and specific hospital in which your child needs to be transported to are all helpful.

5. He has never seen a medical alert seat belt cuff but imagines it would be helpful; the only case it would likely not be is if first responders needed to cut your child out of their car seat in the event the car was upside down.

6. Your local police department can put your child’s information into their system.

He has asked me to email him all of the necessary information about our son so if an officer in our county were to ever pull up my name there would be a section about “child safety,” since his medical ID bracelet can only give a few lines of information.

This is the list where I can be specific; low muscle tone, tube fed, blood clotting issues….etc;

To be honest, I cannot thank our local police department enough for taking the time to come out to our house, give our boys honorary police member stickers, and help me understand how to ensure our little guy is cared for in an emergency.

I encourage you to do the same!

The older he gets the more and more I notice people being uncomfortable regarding communicating with him.

I used to get very upset, assuming people were just ignoring him, but the more I think about it the more I wonder if people just don’t know what to say.

He’s not going to answer back so I guess it can be intimidating coming up with something to say.

I’m going to let you in on a little secret.

Being non verbal in no way means that he cannot communicate.

He may not have any expressive language but he does have receptive language.

(Receptive language is the ability to listen and understand what is being communicated to you.)

Exactly how much is still a mystery but please don’t underestimate him.

I can give you countless scenarios where he answers me with the “correct” answer.

Me: Do you want to watch a show?

Him: Giant smile with a giggle.

Me: It’s time to brush your teeth!

Him: Rolling away from me and starting to cry.

He’s communicating.

Please don’t treat him as if he’s less than or, “dumb.”

Not only is this hurtful to him but it also makes you look completely ignorant.

When you say things like “he doesn’t know,” it’s you, in fact, who doesn’t seem to know or get it. He is smart. He knows.

Look at him, look into his eyes and see. Watch his face, read his cues.

You just need to learn how to communicate with him his way, not yours.

He’s a little boy. First and foremost he’s a child. Treat him like you would any other little boy.

Compliment his shoes. Tell him you like his hair or his shirt. Ask him to read a book or show him a toy. Ask him for a high five.

Love him. Speak to him. Simple.

Don’t ignore him. I was recently talking to a friend about this and she said something very profound.

She said, “Anyone who ignores him should assume that he knows they are ignoring him.”

Again, he knows.

If you take the time to get to know our son, you will soon realize that being nonverbal means anything but the inability to communicate.

All it means for him is that he doesn’t speak words.

He speaks with his voice in different sounds.

He speaks with his eyes.

He speaks in his cries.

He speaks in his body language.

And most of all, he speaks with his smile.

He is 4 years old and still has yet to reach many milestones that, “should”, have been met years ago.

He has congenital disorder of glycosylation and is severely delayed, he is nonverbal and can prop sit for brief periods of time.

To be honest, I rarely think anymore in the terms of where he “should” be but rather in the present time of where he is.

But there are times when his delays sneak up on me and look me right in the eye.

Recently I was cleaning out our toy/therapy room and setting things aside for a yard sale.

This was when our son’s global developmental delay stared me straight in the face.

I had a large box where I was putting rattles and other infant type toys, toys that I would classify as 0-6 months on the development chart.

As I grabbed each one and placed it in the box I realized that many of them our son never even played with.

He may have held some, but most of them he didn’t “play” with the way they were intended.

He didn’t shake them to make music, he didn’t twist them to make a clicking sound, and he didn’t squeeze them to hear the giggle.

I remember purchasing many of them at second-hand stores and thinking this will be the one.

This will be the toy to unlock him. This will be the one that helps it all make sense to him.

I searched for the toy that he would play with. Local thrift stores, Amazon, and suggestions from other parents.

When I say that we could be our own second-hand store I’m not kidding. We have them all.

Soft, hard, noisy, ones that shake, ones that spin, and ones with cute little animal faces. All of them, and yet, nothing.

As much as I wanted to let the tears flow when looking at my box of toys, I decided to change my thinking.

I couldn’t look at the pile and let each one remind me of the things he has yet to accomplish.

Each toy represented my determination.

Every rattle represented my hope.

Every toy portrayed my dreams that I have for our son.

Every single one shows my attitude to never give up.

He may always have the diagnosis of global developmental delay, and he will always have me.

Determined. Hopeful. And never ever giving up.

I looked at my big boy and asked, “Did you just stick your tongue out at him?”

He wasn’t sure how to answer me, but I prompted him to be honest, and he said, “Yes, he was pulling my hair!”

I laughed until I cried.

Ever since our youngest was diagnosed with a rare genetic condition, PMM2 CDG I have grieved the sibling relationship I wanted so badly for them.

They don’t run through the sprinklers together in the summer. They don’t tromp through the snow in the winter eating snow and happily falling backwards to make a snow angel.

They don’t blame each other for messes or mistakes. They don’t play cars or legos or make believe together. They don’t fight.

Our youngest son is globally developmentally delayed.

He is fed with a feeding tube nearly 24 hours a day and is still very much a, “baby”, according to his big brother.

The questions of “when will he be a kid?” are fairly constant in our home.

With daily private therapy he’s making progress, slowly. He is nonverbal but very chatty and has recently learned to tummy scoot to where he wants to go.

Their sibling relationship isn’t what I imagined. I imagined bubble baths together, car races in the basement, and yes, fights.

The scream of “MOM!” coming from the other room to tattle on the other brother for doing something they didn’t like, and the determined footsteps to come and tell me all about the wrongdoing.

All of the things I did with my siblings growing up.

I wanted them to grow up counting on one another.

I wanted them to grow up always having a best friend or at least someone to share, love, fight, and get in a little trouble with.

Before the sticking-out-of-the-tongue incident our youngest had scooted his way to lay next to his brother. And he pulled his hair.

Brothers. I laughed until I cried because here I am worrying that they won’t have the sibling relationship I dreamed of, but yet they may have just had their first fight.

After this incident I realized my ideas of what siblings “should” do needs to be replaced with what they are doing.

They love each other fiercely, my oldest makes up games that his little brother CAN do, and now, they fight.

And that, is something I have waited for for nearly 4 years.

I did have to tell my oldest that sticking out his tongue at his brother isn’t appropriate and tell my youngest not to pull hair, but the entire time my heart was bursting with joy.

The season of our son requiring everything of me isn’t going to end anytime soon.

You have had to cancel an event that you’ve looked forward to all week because of a sick kid.

You may be here. You might be, “In the weeds”, too. It may be a season or a lifetime.