Mother’s Day- For the Mothers who Have Lost Their Mother.

Holidays like Mother’s Day tend to be really “loud” in society. Whether it be the sentimental commercials on TV, the “buy your mom the perfect gift” store displays, the social media posts, or just people you know talking about it as it nears. You will know about it coming.

Motherhood tends to be defined by all the love and tender care that we give our little ones from the very start. For many women, motherhood begins with a positive pregnancy test. For some women, it began years before that, when they first started trying to conceive, or even thought of becoming a mother.

Being a mother tests, builds, and redefines everything in you: your hopes and dreams, your fears, your self control, your patience, your love, your vulnerability, your ability to go days without a shower or sleep, in some cases your ability to spend days in the hospital and hear things you never imagined from doctors.

Motherhood typically evokes people to think of all those “firsts.” There is a first smile, first words, first steps, first friends, first day of school, first day driving, first day sleeping in their bed alone without waking up through the night.

Motherhood also, less commonly, evokes the feelings of the “lasts.” There will be the last day you drop off your child at school, because they are graduating and will be on their own moving forward, the last day you bring your child to a play date, the last time they wear all those cute little outfits as they outgrow them, the last time they come running to you to kiss their boo-boo. And, all these things are healthy, wonderful, and beautiful, though sometimes really difficult and painful. But all of these things are always filled with love at the core.

But, there’s a side to motherhood we don’t talk about much. That is, the side of watching your own mother do her lasts. No one talks much about watching your mom take her last steps, watching your mom use the bathroom independently for the last time, watching or helping her to eat her last meal, and hearing her say her last “I love you,” and then seeing her take her last breath. Nobody really likes to talk about the part of motherhood where your mom transcends to the end of her life. Yet we will likely all face it, assuming we outlive her.

And, if you’re lucky, the moments in the years will fill you for the rest of your life- long after the final moments in life have been taken.

I am not going to sugar coat it. This is reality. We all have an expiration date. And even though we are mothers, we are all also born from mothers. One day facing the news that they are no longer here to talk to, or call, or eat with, or shop with, or hold hands with, will change everything about you.

And you will have a choice to make, because you lost your mother. Because, you are still someone else’s mother. And all those milestones you watch your own children go through will make you remember your own milestones and your own mother. And you will have to dry the tears and you will have to keep on going. You will have to smile and give your own children all those moments that will live forever, since we know that none of us will.

And I doubt that it ever gets any easier in time, no matter how people say that time heals. Remember though, not being easier, doesn’t mean impossible. You see, you and I will find our way. And always having some pain over our deepest losses does not mean you can’t always also have happiness. Pain and hurt can, and often do, coexist with joy and gratitude. 

This simultaneous state, is often the price of love.

You will see your mom go from right in front of your face, to only in your mind and heart and go from the room you are in, to only there in photographs. You will see yourself go from having a person you ask all the questions to, to being the one having to answer them all on your own. I don’t imagine you can understand what this feels like, if you haven’t gone through it yourself.

And, if you relate to this, and if you are hurting today, I pray. I pray that you are able to take at least one moment today, and just simmer in the sweetness of all that still is. Take wonder in the moments between the tears of the pain, and deeply feel the joys and the love of who and for what remains. We are still mothers this Mother’s Day. And that will always be a blessing.

Undoubtedly, Mother’s Day changes, when you’re a mom who has lost her mom.

I encourage you still.

Though she’s gone, she’ll live: in the laughter that fills the air over something she used to find funny, in the smell that fills the kitchen of something you loved her cooking, in the way you choose to raise your children, in the way you receive and show love, when stories of her are spoken out loud, and in the lyrics of a song that will forever take you back to the place she created in you.


My praise of the Lord

cannot be dependent

on getting what I want.

It must be dependent

on trusting who He is.

When Your Shoes are Bigger Than Mine. I Will Love you Still.

Right now your shoes are pretty tiny. I mean, you are giant for your age, and so they aren’t quite so tiny, like a newborn. But, they are tiny compared to mine. Right now, everything about you is small, because you are five. This means things like your giggles are heartwarming, and your smile is delicious, your laughter is contagious, and your hugs are the best. It also means, when things are hard, I can calm you down. I can pick you up. I can sit you in my lap. I can help you up when you fall.

You fit in my embrace like a mother and child were always meant to fit together.

But, time has a way of continuing on. When we want it to, and when we don’t. One day, your tiny feet are going to be bigger than mine. Our set up of shoes in the front of the house will one day have mine as the smallest, even smaller than both of my little boys’.

I know this happens to everyone, you see. But, when you have a child with special needs, it really makes you think. Will you be able to live on your own one day? Will you be able to have a job? Will you be able to start a family of your own one day? Will you be able to take care of yourself? Will you have sincere friends?

Sometimes I think to myself, God knew I’d always want a special someone to love me, and for me to love and take care of. I have wanted children since before I could even multiply by double digits in school. I think to myself, maybe God gave me this precious gift of having to care for my child longer than most. Or, maybe my child will surpass every one of my concerns, and be totally independent.

No one can predict the future, and most of us know the saying “man plans, God laughs.” Other than practical things like financial planning, and having an extra bedroom in case, I cannot know what Lucas will need as he gets older.

Sometimes I look at the idea of him needing me and my husband forever, and it seems comforting. I will know what he needs, and I will be right there to provide it.

Sometimes, if I am honest, it seems scary.

What if his behaviors are too much to handle, once he is fully grown and possibly over 6 ft tall? What if, God forbid, something happens to me? Who will know Lucas like I do? What if his brother winds up having to sacrifice a lot to take care of Lucas if I am gone? I know these things sound pretty extreme, and maybe you are thinking, why should I think about all that? Unless you have been in my shoes, don’t judge me.

When my thoughts tend to go most berserk, I remind myself, God will be there then. God has already made the way, and I need not worry, but give my worries to the Lord. I know that I don’t have to have all the answers to know that a way will be figured out somehow.

What I can say is this.

To the extent that I have control, I will be there.

I promise you this. I will love you endlessly. I will care for you endlessly. I will support you with all that I can. I will help you when you need it. I will teach you everything you can learn, to do things for yourself. But, when you can’t, and you need me, I promise you, I will be there, even when your shoes have long outgrown mine.

Photo credits.

The title picture is the pair of a mom and son shoes next to me and Lucas putting his shoes on after his piano lesson. As we walked out they walked in. And in that moment it really sunk in, what it looks like to special need parent, long into bigger shoe sizes. The blue shoes in the picture belonged to mom, and the black shoes were her son’s. Her child was taller than me and a teenager. She was older than me, and I couldn’t help but think of how it feels to be on this journey that long.

I took the conclusion picture at a concert I went to. It was a Christian concert that I had been so excited to see. In front of me was a mom, and her adult son with special needs. She still had to hold his hand. My eyes filled with tears and I couldn’t help but think of the reality of it all. Her love was something you could feel just by being near her. But so is the tired of the journey. But it is all and always worth it. In God’s strength we press on. Amen.

Extra Worries Accompany Special Need Parenting but so can Extra Faith.

Today is the day. The day we’ve been counting down since the day we got an epilepsy diagnosis for Lucas. We started counting down sometime around February of 2016, after his brain surgery. We have had to restart our count several times over. Every time he had another seizure. Every time we had to increase his medication, we began our count again.

Hopeful, desperate, often disappointed, but always faithful.

We were counting the number of days that Lucas had been seizure-free. The criteria with our neurologist for weaning Lucas off of his seizure medicine is two years without a seizure and having a normal EEG. 

Today is the day.

We have made it to two years. Two years of extra worry. Worry beyond the worries of typical parenting. But we have had so many victories, and so many joys as well.

When you have a child, people say things like your “heart beats and walks around outside of your body now.” In other words, the thing that has stirred up a deeper sense of love than any other human relationship has ever stirred up, is walking around in this world. And that makes us vulnerable.

Your emotions will go up and down with everything that possibly goes on to help or hurt your child. This little heart beating outside of your body depends on you to make the right choices for them. Choices that will result in them having love, protection, shelter, happiness, and health.

When your child has one or more medical diagnoses, the worry, the fear, and the things that you can and cannot control can be drastically intense at times. 

The only way it’s possible for me to make it through these ups and downs is to remind myself of these truths.

God is good.

In the storm, He is good.

In the valley, He is good.

In the fearful moments in the middle of the night that keep you awake, He is good.

On the mountaintops, He is good.

In the sweetness of 2 years seizure free, He is good.

And in the unknown ahead, of whether or not we will have to restart our count, as we attempt to wean, He is good.

I will stand on His promises.

It’s how I made it through yesterday, how I face today, and how every tomorrow will be.

So, in my soul, when worry creeps back in, I will stand on His rock, and find rest.

And it is good.

In my fears, when I think all the what ifs, I will rest on His certainty and promise, that He is in better control than I could ever be, in every situation we face.

And it will be good.

And on the days it doesn’t look good, or feel good, I will be real.

I will get on my knees and cry out to Him. I will ask him the whys. I will yell out my frustrations. I will get on my knees. And I will choose to trust,He is still in control of the things I can’t see yet.

Beauty from ashes, is his specialty.

Making masterpieces from blank or messy canvases.

That’s His specialty.

We are His children, pieces of his heart beating outside of His body.

And I will trust that He loves me enough, to see me through all of my days, whether or not they feel good in the moment. He is working it out, through ways I can’t imagine.

I can’t help my kids up from murky ground if I’m not standing on solid ground while I reach my hand out to help them up.

So here we are.

A countdown begins today.

Day one of our leap of faith that we can remove and stay off of seizure medication safely, starts now.

I will cling to my Father’s hand through this journey, and trust that He is in control.

The Other Moms

The mothers over there. They stand together, smiling, laughing, exchanging stories. They look up occasionally to scan for their child, and resume talking without much of a second thought about their child playing. They talk about regular things. Kindergarten next year. The play date they might have this weekend.

We stand over here. We stand close to our children. We know they might hurt themselves or someone else, or break a serious rule, or run away, or into the street or parking lot. We know that at a moment’s notice we have to be ready for a meltdown, that you will think you relate to, but you can’t.

The mothers over there. They share their regular lives. They don’t think twice about it. They see us over here, and probably don’t think twice about that either. But I think twice. I think to myself, what will this be like in a few years. When our kids are older, will you still say hi to us? Will your children still want to know and be friends with Lucas? Will they accept him with his differences in interests and personality? Will they listen to his latest obsessive interest? Will they entertain his odd requests for how to play? Will you say hi to me? Will it be out of obligation? Will it be genuine? Will I be able to look away from him long enough to answer and converse? Or will I just wave, smile, and nod, and look back at him?

We stand over here, as the differences between special needs and typical begin to get larger. We stay close as you are able to slowly separate from your children. We know what can happen if we don’t. Siblings begin to trickle out to the yard. Over there, you greet them, and converse. We still can’t take our eyes off our kiddos with extra needs. Our children’s siblings have gotten used to not being able to talk until we are in a safer place.

This is a walk the whole family does together. Together we are strong, but together we are also quite separate. We stand over here, because the differences are going to show their face in one way or another, despite our efforts to unite. My child has many extra needs. My child needs significantly extra supervision. Your child will outgrow this stage. And that will forever separate us. All I wish is that as the differences become more apparent, your efforts to be a part of our life, and to include us, grow at the same rate.



My Mom’s Story

This is my mom’s story.


It’s not one of heart break.

It’s not one of sorrow.

It’s not a fair story either. But I’m going to tell it.


It’s a story of overcoming adversity.

It’s the story of smiling in the midst of all things giving her reasons not to.

It’s a story of becoming joy.

Being joy for others was her joy.

To the extent that it was possible for her, other’s joy always surpassed her own.


She loved adventure and shopping and good food.

And sharing it was her favorite.

She loved spoiling others with whatever her money could buy them to have the same.


They say you see a lot about a person in the friends they keep.

She kept many of the greatest people I know as friends.

Life long friends who suffered greatly along side her as she suffered, but also had endless stories of inspiration and fantastic times together.

You would have to search few and far between to find someone who could say a bad thing about my mom.


She never intended to be anyone’s inspiration, but she frequently was.

She was happiest when those she loved were happy.

That will be a great source in us finding happiness again without her physically being here.


It seems impossible to move forward, but she always did.

She taught us how, and so we can and will find a way too.

She will never truly be gone, or forgotten. She will live an eternity in heaven, and in the stories and memories we share of her, and in the impact she has had on each one of our lives.



It is only, until we meet again. Save me a seat near you.


Is it the end for you Mom

I’m trying but I can’t
I’m giving up but I’m not
I persevere
Until I hear
Your quality of life can be nearer
To who you were

You aren’t who you were

I don’t know if you’re

coming back

When you were here we disagreed
But as you are coming in and out

We both want to shout 

You shout let me go 
You want the wires out 
You want to walk and can’t 
You shout let me go 
Because in your head letting you go satisfies
something inside 
But you don’t have your mind
It’s gone
Things can’t be fine
Not this way 
I shout let me go as well 
Expectations let me go
Disappointment let me go
Fury that I can’t control a thing.
Let me go.
So we shout
You out loud
Me inside
Although we are both still alive 
It still feels like almost everything has died 

Before his Surgery, I Prayed for Sight.

From the day I learned that Lucas was going to need eye surgery, I had been praying. Freshening up on healing scriptures. Renewing my faith in the Lord’s healing power. Reminding myself that there is nothing I walk through that the Lord is going to be with me through.

Lucas has had eye difficulties since he was born. I knew since he was days old that his eyes didn’t quite look right. But, we had been following with pediatric ophthalmologists since he was a bout a year old. They all said the same thing. Wait and see how it looks in six months. Wait. Keep waiting.

His eyes were only looking out of alignment when he was first waking up or very sleepy. The doctors all said it was ok, because his brain is correcting for the problem when he is alert and wide awake. But, little by little, his eyes started to look very out of alignment more and more throughout each day. Especially when we were driving. His eyes couldn’t adjust.

The time was here. Lucas and I had made all the doctor appointments, faced all the daunting waiting and exam rooms that provided endless opportunity for wild behaviors and trying to grab at nearly every eye instrument and machine in the building, while I chased behind trying to anticipate his next attempt, before he got a hold of it. I had read all the surgery paperwork. And this was it.

The waiting was over, and surgery was imminent. That is, it was imminent if we wanted to give our son the best chances to see well, and to prevent his brain from turning off it’s connection to the eye that was causing the most disorganization in his vision. I called my husband immediately after the appointment that confirmed the need for surgery. He was on board. That was confirmation for me, that we needed to fix this. The doctor, my husband, and I all felt the plan should be the same.

And so, here we stood as a family again. We suspected the problem, we endured many doctor’s appointments, opinions and second opinions, finally getting the answer we were searching for. The problem we were seeing was real, and there was a solution. You see, we’ve been here before. Life had prepared us for this, with his brain surgery, with his epilepsy journey, with his autism diagnosis. But it still sets off a pattern of events.

First comes simultaneous shock, fear, and confirmation that we were right about what we were thinking about something being off in Lucas. Then comes gratefulness that we have a specialist who is great and very experienced at doing exactly what he needs done.

Then comes the waiting phase.

The time between diagnosis, plan and surgery.

In this case we had about 3 weeks. Three weeks may not seem like that long, but anticipating a surgery in your child who does not handle change, or things he doesn’t like well, is a long time. Every day there is the concern. The questions in my head. The heart wrenching tug at my heart knowing what he is about to go through and he has no idea it’s coming. The questions in my head: How will he respond? Will he be angry about it when it’s done? Will he be able to communicate his fears, his pain, his symptoms, his feelings? With words? Will I have to guess and interpret his body language? Will I guess right? Will I be able to console him? Will he lose trust in me for bringing him to a place to go through this thing he can’t possibly fully understand?

The answer to these questions became somewhat apparent as he woke up from anesthesia. My husband and I left the chairs they had set up for us in the pre-operation area to move to the recovery room. We went on our usual roller coaster of emotions. It goes from happiness the surgery was over and the surgeon had said it went well, into a sudden surge of frantic adrenaline as Lucas woke up kick and screaming.

The side rail bars represented places he could bash his face in his wild writhing. He thrusted his body so strongly the nurse got smacked in the face while another got kicked in the chest. His face reared angrily out of control left and right and up and crashed back down into the bed, only to repeat the cycle.

Finally we were able to let him try to stand up, and as he tried to open his eyes again, it restarted the cycle of anger and confusion. He tossed himself to the floor. We all blocked dangerous nearby hospital bed corners and equipment from poking him in the eye or from him being able to hit his head on. He eventually lied on his back, and stopped twirling in circles, still for a moment. He yelled with bloody tears steaming down, “I CAN’T SEE!”

With a broken heart, but enough adrenaline to hold me over, and enough experience to know to seize the opportunity, I scooped him up in my arms. If he hadn’t been able to see, then maybe he didn’t know that I was right there with him. Surely, my familiar calming squeeze and hold would let him know it was me there with him. That he was safe in my arms.

I felt his body begin to lose the tension. I squeezed him with the sensory technique needed to overload his body with the input he needed to better regulate. I told him mama’s here. I am holding you. I offered him the choice, “do you want me to keep holding you, or put you down?” The weak little voice came back “keep holding me.”

My husband stood there not knowing what to do. Would it be more helpful for him to say something or do something or not? Nobody knew what to do, but in that moment, Lucas had finally found some semblance of familiar comfort in my arms. From that point on, things went smoother.

We made it home by filling his hands with snacks and a clean gauze he could use to wipe his eyes. When his hands were filled, he was less likely to rub his eyes repeatedly, which of course is not desirable after eye surgery. The doctor had told me that when Lucas rubbed his eyes the first time, it would feel so uncomfortable, that it would be a natural consequence to make him stop. Not Lucas. He has a strong will to get his way. Any time his hands were free, he rubbed his eyes, in hopes he could make them return to the way they used to feel.

I could see his struggle in the rear view mirror as I drove us the over an hour trip back home. It was as if he was convinced that if he could keep rubbing his eyes, then maybe things to go back to the way they were, before surgery. But I could also see Omar, with his tender heart, quick to offer Lucas snacks as needed to distract him from rubbing his eyes.

We were so blessed to have Omar with us, which was a last minute change in plans. I was also blessed to have my husband’s support, even though I didn’t think he was going to make it home in time from work to come with us. Honestly, I thought I was going to be fine by myself. Fortunately, it didn’t work out that way. Eventually, Lucas fell asleep, snacks in hand. Peace for the rest of the drive home.

Back at home, little by little his challenging autistic behaviors increase when he is recovering. His neediness for me increases. He is seeking out comfort, control and confirmation that he is and will be OK. This means my availability for my other son decreases. It means my ability to do anything well is challenged and my struggle with mom guilt and perfectionism peak. It means it takes a lot of energy to not be irritable and on edge trying to manage it all for my family.

However, the goal of the surgery has been clearly unraveling. Lucas’ eyes have become straighter aligned each passing day. He has been happy and active, and I have even been able to sneak in and put his eye ointment in at night as prescribed, without him waking up screaming!


So, I had been praying for sight for weeks. I prayed expectantly. I knew I was asking for more than just the sight in Lucas’ vision. I knew God was going to do even more than that.

Sometimes you have to close your eyes to see.

Sometimes you have to use your heart to see.

Sometimes you have to let go of everything you thought was supposed to happen, in order to see clearly.

Sometimes you have to see past the disappointment.

Sometimes you have to change to see.

Sometimes you have to use your intuition to see the moment that you can pick up your son in your arms to give him the desperate peace he needs, or see the look in your other son’s eyes that says please pay attention to me too.

Sometimes you have to look again to see what you’ve missed.

Sometimes you have to humble yourself to see.

Sometimes things only come into sight through having faith.

I am thanking God that he helped us never lose sight of the most important thing here. Together, we make it through things like this. God knew each person in my family would need each other. He provided for that, way before we even knew how true that even was.

I am so glad that God continues to use our experiences to see more of Him. He continually evolves me and humbles me. In my weakness and confusion and loss of vision, His grace is sufficient to help me see. Staying near him is like being the tree planted by the stream which has a great supply of water, and bears much fruit.

I asked God specifically for “sight” throughout this, because I knew how hard it was going to be to go through it. I knew I was going to need divine “sight” to see the parts of this that would help me grow, and help me find peace. I knew I needed to see God’s glory and revelation in this. And I did.

I will continue to pray. God please realign my sight, towards your ways, when I begin to deviate towards my own. Amen.

Dear life before autism.

Before we formally got introduced, I had this illusion that I had things under my control.

My job, my home, my independence, my peace, my sanity.

I had all that under control. That is, until I met you.

I slept at night.

I had conversations with people without 99 percent of me focusing on the safety of another person at all times.

I sat on a couch and relaxed.


I’m gonna say that one again, relaxed.

I don’t even know what that one means anymore.

After I met autism, I stopped relaxing.

I stopped feeling safe.

I stopped having peace.

I stopped feeling comfortable to go out.

I stopped feeling comfortable to stay home.

Yes, staying home with you.

I enjoyed mental breaks. My stomach wasn’t in a knot all the time.

I could relate to people more easily. We had way more in common. I didn’t sound like I was exaggerating everything when describing simple tasks as so challenging.

I could go places on a whim.

Museums, movies, people’s houses.

I didn’t have to worry about the environment overstimulating my child in a way that would lead to massive internal negative effects for him.

I didn’t have to take note of the exact location at all times of my child and know if what he was doing was going to hurt him or someone else, well beyond the toddler years. I didn’t have to take note of whether or not my child’s behavior would baffle or confuse someone else, or deal with people pointing staring and judging or making fun of him for his differences. I never had to worry that anything could trigger my child to melt down, do something dangerous, completely unaware of the harm risked, or run away at a moment’s notice, for some particular reason he came up with.

I didn’t have to worry that despite being potty trained, at any moment he might pee or poop his pants, and get it all over himself and that I might not have a change of clothes, because I thought we were past that phase.

I didn’t have a fear of knowing if my child woke up in the middle of the night, that going back to bed might be impossible.

I didn’t have the extra stress on my marriage.

I didn’t have to worry about his future depending on me being able to help him so intensely, possibly long into adulthood.

But, autism, I can’t say that it’s been all bad.

Though you were uninvited, you are here for a lifetime.

And there is good in you.

Although, the things above are true, I never expected what else I’d get from you.

I’d learn to see things from a totally different perspective.

I’d meet some of the most generous, kindhearted, special people around.

You’d teach me, despite my resistance, to let go of so many of the things I thought I had to and could control.

Everything I ever believed and thought would be forced to be reevaluated, and shifted, for the better.

Patience, acceptance, and understanding would be brought to a level beyond what I could have imagined.

You made me face my anxieties, face my fears, face some of the darkest places in myself, and my own unhealed childhood wounds. Things I didn’t want to, but I’m better for it.

You’d show me what speaking without words looks like.

You’d show me the lengths I’d go to for love.

You’d show me that through the ugliest of ugly, we are survivors.

Through the lowest of the lows, we’d be able to make comebacks.

I had no idea the heights and expert trails we’d be able to navigate, heading up this steep and winding mountain.

I didn’t have a clue, before you, what I was capable of. I had no idea, that watching my son overcome and work through his difficulties would inspire parts of my heart and courage that had never been touched before.

I never considered that the unexpected could be a blessing, when at first, and often after, it felt disappointing, frightening, lonely, unfair, and overwhelming.

Some days, it’s true, I get very angry and frustrated with the borders autism places on our “normalcy.”

But, a lot of days, I can see how you have been the catalyst, autism, that has moved light into areas that were otherwise going to remain in the dark. Areas where light needed to be spread. Autism, you have taken our black and white and sometimes grey world, and lit it up with a spectrum of color, we would have never known otherwise. And, I will count my blessings for that.

Anxiety makes me feel like I’m a bad mom

First let me say. Anxiety is telling me don’t hit publish on this piece.

Don’t let others know you feel this way.

But I know that if I feel this way, then others have and do as well.

So I will swallow my pride.

I will take off the facade that says I’ve got it all together.

And I will write.

The truth.

When anxiety comes knocking.

By the end of the day I am totally spent.

Sometimes I am spent by the afternoon, or before I have even woken up in the morning.

Anxiety starts spiking, and it tells me.

You aren’t equipped for this. You aren’t enough. Special needs parenting demands too much of me.

Sometimes I want to leave and never come back.

Sometimes their behavior pushes me to angry places that make me mad at myself for getting to that point.

Why can’t I have more patience?

Why can’t I have healthier coping strategies?

Why can’t I love my kids better?

Why can’t I let things go?

Why can’t I stop trying to control everything?

These questions become “shoulds.’

You SHOULD have more patience.

You SHOULD be able to cope.

You SHOULD love your kids better.

You SHOULD let things go and not take everything to heart.

You SHOULD control things better so that you don’t feel like you’ve lost control.

You SHOULD have your act together by now.

You SHOULD not let things bother you the way they do.

You SHOULD be grateful.

You SHOULD be enjoying this.

Anxiety is an ugly thing.

It won’t have the ultimate victory.

But it doesn’t leave without an exhausting fight.





If you are suffering with anxiety or depression, seek help. Find a doctor or therapist or friend you trust.


A Day Without Autism. Caregiver Burnout and the Need for Respite.

This year, for his birthday, my oldest son, turning 9, asked for a day at the beach. Well, precisely, he wanted a whole weekend away at a hotel with beach front property. We were blessed to do that last year as a gift from my beautiful aunt. And, it never hurts to ask right? But this year, being on my own for his birthday weekend, we opted for a day on the beach. A day on the beach without autism to be exact.


Lucas is my son with autism. To have a day without him present was necessary, but a hard decision to make. It tears my heart in two to be divided amongst my boys. But the truth is, if I am giving to one, the other is lacking. Of course, these are opportunities for them to learn patience and selflessness. But that’s not what I mean. I mean, autism is all consuming. All the time.

There is no break from autism. Not really. Not in my head, in my thoughts, not in my heart. No time feels safe and at ease. No break. If I give my attention to Lucas and address all of his needs, then for the most part, I keep him regulated, content, and coping well with challenges. But, then I am leaving my other son lacking my help, support and attention. If I give my older son attention, then Lucas can wind up in either full meltdown mode, or full destruction mode, because I wasn’t there to read his warning signs leading up to it. And so it goes on. I give to one, the other lacks. And I rarely feel that I can enjoy my time with both of them together. And I grieve that. And so is life as a special needs parent. I am constantly analyzing, and preventing, and it is tiring.

So, I made the decision to call the agency, to have a paid sitter stay home with Lucas. I let go of anything telling me otherwise. The financial cost. The fear that the sitter might not be able to take on the challenges that come with spending an entire day with a child with autism, one who they haven’t worked with before.

This agency is a special one, designed for families like ours. They staff only behavioral therapists with experience. That means, the person coming knows autism. They know behavior strategies and techniques. They care genuinely about making the experience go with as little stress to the family as possible. You see, it’s not easy or simple to just “leave Lucas with a sitter and get away for a little bit.”

But, nevertheless, for my older son’s birthday, I told myself, this is worth it. We needed this. We needed the time together. We needed to feel a full day without the worry and interruption that we normally deal with. We needed a day without autism. And we got it.

As I stood there on the beach. I acknowledged the peace I felt. I thought of all the freedoms I had without a child in tow with autism. And per usual, anxiety started to tell me how terrible I was, for loving this time without Lucas. And I wondered to myself, how could I let myself feel like he is the opposite of freedom.

And I realized. It’s not the autism that takes my peace. It’s the feeling that I don’t have enough help. I am one person and my kids need two. Two fully involved people. The peace and freedom I was feeling were consequences of me not being pulled in too many different directions at the same time. The feeling I enjoyed, was the not being needed, in ways I am too tired to give, by too many people at once. It was the freedom of having help. It was respite.

You see, my son at home was having a great day. I was getting regular updates. Messages about his potty times and what he did. His meals, his activities, his behaviors. And I was free, because I didn’t have to worry about what would happen to Lucas, while I wasn’t there. It wasn’t all on me, and he was safe and happy.

On the beach, I could really breathe, for the first time in so long. I didn’t have to rush back home. I wasn’t looking at my clock. I didn’t even have one on. I was soaking in the beach; the water, the sunshining sky, feeling the salty air blow comfortingly against my face. I was feeling the water trickle over my feet and through my toes. I was free to feel all this and enjoy it, because I had help. Real help. Help that didn’t require more of me to get it than to receive it. (except financially lol.) Today, I enjoyed watching my oldest son build sand balls, watching him figure out his way with a boogie board, watching him drift his fingertips through sand constructing artwork like only he can. I got to have conversations with him, where my mind wasn’t torn and stuck on other things. Because, I was fully present today. I enjoyed a delicious lunch with good company, without the simultaneous need to restrain the parts of autism that are hardest, in public.

Don’t get me wrong. Omar and I thought of Lucas often. We thought of which seashells he’d like, of how he would have loved to keep going out into the water, fearlessly, without stopping. We thought of how he would have absolutely loved the wild banana boat ride. The same one we were scared to death to fall off of. We acknowledged both the beauty and the restraints that would have coexisted if he were with us. And we planned to come back with him. But this day was for us.


Today was gloriously, phenomenally, awesome.

Respite gave me something with my older son I have often thought was never possible again. I’m going to say it again. Respite matters.

Caregiver burnout is real my friends. Respite is necessary. It will certainly be part of my budgeting from now on. It makes the difference between mental breakdown and exhaustion and relief.

Respite matters. Seek it. Find it. You need it. I need it. And it doesn’t make me selfish or unloving to say it. Respite matters. Today was necessary.

I will definitely be making sacrifices to save the money to do this again more regularly. And, I will ask those closest to me to hold me accountable. Because this is necessary. I will always value the memories, and the lessons I got from today.