To the Mom Wondering how she Will go on Today.

To the mom wondering how something you wanted so much is so incredibly harder than you imagined, and at times more tiring than you can handle.

To the mama hiding in the bedroom with the door shut, so no one sees her crying, makeup running down her face, but she comes back out with a smile in a few minutes.

To the mama wondering how am I going to keep doing this day in and day out.

To the mama who feels like she can’t take another step forward, who feels stuck and overwhelmed.

To the mama counting the seconds till bedtime.

To the mama who feels guilty over every thought that didn’t match her idea of being a good mother.

To the mom who feels she’s nothing but mom anymore.

To the mom who misses freedom.

Hold on.
It is worth it.
You are valuable.
You are priceless.
Your kids don’t see your flaws nearly as intensely as you do.
Your kids know they are loved.
Your kids trust you.
Your kids feel safe with you.
Your are doing a good job.
Maybe sometimes not stellar. 
But trust me, you’re doing better than you realize.

Cut yourself some slack today mama.

Every time you’ve ever felt that you couldn’t possibly go on,

you did.

You were able to then.

You are able to now.

Breathe mama.

Give yourself grace.

You aren’t called to never fail.

You are called to go on no matter how many times you do.

You can do it mama.

I believe in you.

Take another deep breath mama.

Wipe the tears form your own face today, as you have wiped them from your children so many times before.

You are worth so much, to your kids, and just for being who you are.

You are more able than you have believed.

You can do it,

and it’s worth it.

One day you’ll look back, and you will see, you taught your kids perseverance.

You taught your kids unconditional love and acceptance, by you not giving up.

You taught them it’s OK to not be perfect.

That messing up and trying again means so much more than that anyway.

And, you’ll thank yourself one day, when you see the effects of sticking with it.

It is tiring because you are doing your absolute best.

It is tiring because they matter to you deeply.

It is tiring for all the right reasons mama.

Because your heart is fully in it.

And it will be OK,

because you aren’t failing them,

by questioning if you can go on.

One day at a time mama.

I know you can do it.

I believe in you.

Hold on, and breathe.

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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!

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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.

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.

#anxiety

#mentalhealthmatters

#behonest

#don’thideit

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.

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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.

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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.

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The Jolting reminder autism is here to stay

I don’t know what I thought

I mean I knew it was here to stay

I mourned

I grieved

I hoped

I fought

It’s still here

And I’m sad again

And I’m sad that I’m sad again

Grieving comes in waves they say

I suppose it is high tide today.