When we Take the Armor Off – Celebrating Dental Achievements With Lucas

Sometimes we get so used to what we are going through, good or bad, that we forget there is anything else other than that. We get accustomed to protecting ourselves in survivor and fight mode, when things are overwhelming. When they last that way for years, we sometimes forget there is another way at all. How could there be another way, after all I’ve had to learn in order to deal with this? To let go of all the protection and defenses seems almost impossible. It’s a flaunting of something just out of reach.

But today, after Lucas’ tooth extraction, I was reminded that our battles come to an end sometimes. Our hard defenses can surrender their posts at certain points during the war. Surrendering your post allows for the new. For the time when the defense is no longer needed – a time that you never believed would come. Sometimes that day comes.

Like a shining symbol of armor in all its glory, Lucas’ tooth, with its metal coating, beamed as I opened the treasure box that contained it. He just had it extracted to make space for the new teeth that need to come in. We have been in an orthodontic plan for almost two years. Things are progressing well. He has been brave, facing the unknown and scary, time after time, so much more so than many grownups I know.

I have had to be brave that many times too. To support him, protect him, ask the questions, make sure his care is being performed well and followed up on.

That metal tooth was the symbol of a battle we fought years ago. One I forgot all about. The armor went up and stayed on for years til we forgot it was even there. But it was still doing it’s job well while we forgot about it.

There is inspiration in looking back at how it got there and at all it achieved. When he was only three years old, he had to go under anesthesia for some major dental work involving coating four teeth with metal seals to prevent further cavities and decay. Cavities were what required going under anesthesia because he had eight all at once at that dental visit. The four metal coatings were placed as a barrier and preventative measure to stop the same attack from damaging again.

For him to go get this specific tooth extracted marks the first of those four metal teeth to come out. The armor did its job. We got to the next stage successfully. And it reminds me that we do get through hard things. Independently and together. And sometimes we can let our tough guard down, and say job well done, you may rest now.

Sometimes our armor is that way, so strong and so long enduring, we don’t even realize we still have it going. There are times that once the armor has done its work, we can take it off.

Don’t miss the beauty in that, and rest for a moment. Enjoy and honor the pieces of you that helped you get to where you are. Thank them, and let the ones shed off that have done their job, so that new may come. It is time. You have done your job for that season, and I thank you. And of course that deserves celebration, at one of Lucas’ favorite places to eat! Soft food IHOP combo with strawberry syrup on top. ❤️

You Wear Your Shirts Backwards

You wear your shirt backwards. And if I were who I used to be, I’d make you switch it back to where it “should be.” Shirt designs are meant to be seen on the front. That’s where they were meant to be displayed by the person who made the tshirt and by everyone else who wears tshirts. But you wear your shirt backwards. Maybe it’s a sensory thing. Maybe it’s a personal choice. I know you can’t explain it in just quite the way it is inside your head and body. And that’s ok.

Before autism, I used to think it really mattered which way you put your shirt on. But heck, with the insane barrage of battles we’ve had to fight together, many of those lost, and still many won, most days I don’t even comment on the fact that the Spider-Man logo can only be seen as you walk away from me.

Speaking of, I realized that, lately, you’ve been doing a lot of walking away. But not for the reasons you used to. See, I am used to all the ways that I have had to monitor your safety due to your curiosity or lack of sense of danger in situations, or because you could wander off if I even took a second to engage in conversation with someone and take my eyes off you.

But these days, I am watching the back of your shirt, while you walk away from me because you are trying to make sense of what independence is. You are trying to figure this whole thing out that you seem to see everyone else do but you. It’s really hard for me to see you walking away trying to do it all on your own, because I’ve spent the better part of half of your life continually making sure that you were never too far and that I knew exactly how to keep you safe.

God had a sense of humor, because He knew I’d need something to smile at, as you got further into the distance, trying to do more things on your own. I see you trying to show me that you can walk the dog, cross the street, pour milk, and get dressed without help.

And I understand your desire, but be patient with me.

This is a whole new world where you are understanding so much more about the fact that, you in particular, among those around you, have needed more help than others to do things in your life.

You are trying to change that and push yourself to meet a standard you feel you should. You’ve got something to prove to me, and to yourself, I think. But know when you look back, just to check how far you’ve gotten on your own, I won’t be so far off that you can’t see my smiling face behind you, there just in case. And while I wait, I’ll ponder, is that backward shirt just fine after all, like so many other things we thought we “had to change” as well.

Cause, I also realized lately, that autism has repeatedly forced us to reconsider every “should be” that I have pretty much ever just assumed “had to be,” due to some unspoken rule — a rule that one just does not challenge… Who even makes these rules…I wonder. These rules that we hold so tightly to – just follow the rules and everything will be alright…but will it? Cause, I have learned differently. The social rule followers rarely get to tap into the depth of a relationship where who someone really is, really is allowed.

We have all learned to present ourselves a certain way so that others will respond a certain way towards us. But who are we really, underneath all that. Who are we pretending to be?

My son’s autism constantly begs the question- but why are those rules necessary… And I challenge you to actually consider, what rules have you been following that aren’t really necessary? I really think the only social rule I’ve seen trump all the others is —be kind… Kindness speaks louder than words. Kindness floods another soul and brings it to life with a smile or with an outstretched hand to hold.

Kindness looks like laughing at a shared silly moment. Like allowing someone to move freely, when everyone else should be sitting still. Like sitting next to someone who is overwhelmed without any pressure to have to get through it sooner than they are able to. Not expecting words, when they are out of reach somehow. Kindness looks like not minding that someone likes to wear their shirt backwards. If the world had a lot more kindness, we’d all be better off. Maybe, if you see my son with his shirt on backwards, kindness for you will look like thinking twice before you choose to point out that things “shouldn’t” be that way. Cause just maybe, things are more beautiful when we give individuals the freedom to color a little outside of the “normal” lines – those lines we used to think were set in stone, or at least that’s the way I used to think, before I met the boy who liked to wear his shirts backwards.

The Milestones we Wait For.

My little guy who is part of my inspiration. He has grown so much over the last few years in so many ways. Many people measure their kids’ growth in height or weight or years. In a special-needs world we had to learn early, that wouldn’t be the way we measure growth. Some milestones come years later and some may never come. But today I am going to thank God for all the amazing goals he has met.

He is now successfully potty trained, despite regressions during the last year.

He speaks with many more sentences and better sentence structure.

He can remember information to recall it at appropriate times and apply it to current or future situations.

He has had successful play and social interaction with special needs-peers- with prompting.

He can position his fingers to squeeze and slides the yogurt in a tube with less prompting and assistance.

He can sound out words and read simply worded sentences. He can easily read at least thirty sight words on his first try.

He can write a sentence spelling things phonetically, and sometimes remember to put the period at the end of a sentence! And he holds the pencil correctly even without his grip now.

He can stop when his mood is escalating and respond to prompts for deep breathing and prompts to help him choose ways to cope and substitute what he wanted with something similar.

He learned to start up a swing without a push.

He asks questions that are very reasonable to better understand his world.

Other moms might be celebrating these things way earlier than we do, but celebrating his milestones is still just as sweet a blessing. We may in fact be blessed to have the extra special wait to reach it, so it becomes more noticed and doesn’t just slip by.

He can grab, open, and drink his own mini cartons of chocolate milk from the fridge.

He can try new foods he has a strong aversion to.

He can tolerate brushing his teeth without hitting or screaming.

He rides a bike with training wheels.

He can talk to a therapist/teacher on a zoom meeting for school effectively!

He can play a game of Uno, Trouble, Mousetrap, or Snakes and Ladders by the rules!

And one of my favorites, tonight he learned how to smile for the camera. He cannot simultaneously make eye contact, but his smile melts my heart.

There are many things we will still need to work on, but aren’t we all, only and beautifully, works in progress?

The Scars

Up until recently, I had always given Lucas his haircuts. He is squirmy, sensory averse, resistant, and uncomfortable during them.  I just couldn’t honestly imagine what on earth bringing him to a barber and expecting him to sit totally still and cooperatively would even possibly look like. Then there is wait time to consider, where he had always spent climbing and crawling over and under the lobby chairs, whenever big brother was going for his haircuts. Then of course, there’s my husband, who wants me to let it grow. Lucas does have some pretty fantastic curls. I often considered that God gave Lucas those curls to cause people to come up to us and tell us how beautiful they are. He must have heard that a hundred times from strangers in public.

 

 

But the curls were causing a problem. Every time Lucas would get sweaty, or when swimming or bathing came up, he would start to get very angry, anxious, and act out. He hated when his head felt hot and sweaty and would drip down from those curls to his forehead and neck. Understandable. We live in the hot Florida sunshine, and it is inevitable that one will sweat while just standing outside, never mind trying to run and play. The bottom line is that when I offered to cut his hair shorter to reduce how long it took to dry, I didn’t really say it in a nice way. He was refusing to shower, and I thought he was going to scream “No way!” and get right into the shower. He had mostly hated haircuts prior to this. Anyhow, the answer wound up being a definite “Yes!”

I figured, if it would help him feel free to play outside and and swim, and important things like shower daily, then we would try. The first few haircuts I did at home with an electric shaver with starting with level 7 or 8 at the top and fading to 3 to 4 blades at the bottom. I figured that was as short as I was comfortable going without making a bald spot accidentally. Cutting his hair at home had mostly good results, from a behavior standpoint, but I am not a skilled barber by any means. But we got the result, way more compliance with showers. Since it had been going well, and since Lucas agreed, we decided to get a haircut at the barber.

I set my expectations very low. I was fully aware that we might leave the shop with only half a head having a haircut and half remaining uncut. Trust me, I had learned by then not to expect things to go as planned, and to have a way out early if needed. I already planned that I would just touch up the other side at home if it came to that. But I had my fingers crossed it would go well.

We arrived at the shop. Lucas knew what to expect from Omar, his brother’s turn many times before. I was nervous, but followed Lucas’ lead who seemed to be ready to comply with the person about to cut his hair. I gave them no warning. I did not mention autism. I did not mention ADHD. I just said he doesn’t want to feel sweaty when he gets hot. Then I shut my mouth, as hard as it was not to micromanage, I knew Lucas and the person had to establish their own trust and connection. If I was a nail biter, I would have been biting my nails about then.

Everything was going surprisingly well, and we decided to take it really short. IA nice faded cut, would be something I couldn’t really do at home. She adjusted the clippers and just like that his curls flew to the floor. I was probably holding my breath ready for him to decide he was ready to stop right there. But through all this, he was actually doing amazing. I needed to relax. As I tried, she kept cutting quickly along to help get things done before he was going to be done with sitting still. As she came around to his right side where I was, the hair quickly flew this way and that way, and all of a sudden, just like that, I realized. The scar he had from having brain surgery, as a one-year-old, had been hidden for the last two years. The scar becoming more and more noticeable, seemed like a curtain being pulled away, revealing without my permission, the the surprisingly raw nature of the matching scar in my mama heart. It surprised me, because, we had been able to put that behind us, having been cleared from all recent EEGs, and MRIs. Now, all of a sudden, here it was screaming in my face “you can’t pretend I don’t exist now.”

I immediately regretted the decision to cut his hair that short. The scar was so obvious. Everyone would see it. I was going to have to deal with questions about it, and I was going to have to look at it every day. A swarm of thoughts went through my head. How will I explain it if he asks me about it, should he notice it in the mirror? What if he winds up facing something that serious again? How will I be able to handle that? The words of the neurosurgeon echoed in my head. “We will make an incision that will be in the shape of a question mark… We will take away a part of the skull and access his brain…” That is enough. I certainly did NOT want to think about that again, now that we were so far passed that hard time.

 

 

Yet, as much as the scar brought up painful memories, it also made me question myself. He is, and always has been, my beautiful Lucas. He is my amazing gift from God. He gives me reasons to smile every day. Why did the scar effect me so deeply? I mean, we had already lived through the experience and survived and I knew he had the scar. Maybe it was that the scar represented the hard parts of this journey, the frustration I was still holding onto that things have been so hard for us, that nothing had come easy and it wasn’t fair. And it is true, but it doesn’t negate the beauty of things. And I had to look harder to find that.

Emotional and physical scars are very similar and can be intensely linked. Scars represent each time something hurt. But they also represent each time something fought hard to heal and successfully recovered. Hiding scars doesn’t make them go away. They must be faced no matter how hard. Even when facing them causes pain. I will never forget the day he had surgery, we had this picture from right after. His operation had taken only 45 minutes, and I was still kicking myself for missing the call from the OR about his status. Who does that? Who misses their son’s neurosurgery OR call about his brain surgery progress. Well I did. But, when I saw him, nothing about me felt sad in that moment. I just thought to myself, he made it. He is still here. And just like that, scars can go from scary to thankful. Horribly tragic to magical. Near death to so alive. So today I will choose to be grateful that the scars don’t have to reactivate pain, but they can also help me remember the gifts throughout it all.

 

Or we hide from them, because they cause too much pain.

I will choose to embrace them, because they tell our wondrous story.

While the damage and the hurt remain on one end of the scar, on the other side sprouts the bud and the bloom. There is usually an ebb and flow to life, and where one traumatic thing happens, there are also wonderfully amazing things going on, if you look close enough to appreciate it. Maybe it is a relationship developing with someone. The acts of kindness your situation inspires in others that bring you to tears when you least expect it. The stories people feel led to share with you of times when they overcame similar struggles. You find out ways that God has painted masterpieces in other people’s lives, and it gives you something to hold onto.

So, his scar was made in the shape of a question mark. Maybe, beyond the medical importance of that technique, there is value in that. It is a very good thing to remind myself to ask. Ask, when I look at that scar, am I going to see the pain, or am I going to see the wonder? Maybe, sometimes, the scars make us better.

 

 

 

This was drawn by my older son Omar. When I told him I thought it was beautiful, he said to me, I didn’t know if people would like it with the scar on it. Turns out, the actual coloring book didn’t have lines for the scar. He had added that himself. And I think the picture is perfect.

 

 

Easy was Never in the Plans for Us.

Easy was never in the plans for us.

Whether or not I wanted it.

 

I don’t think you ever think life is “easy.”

until you know what not easy is.

 

Relative.

 

The way things seem easy or not,

is always relative to how they were at best,

or when they were better.

 

The better times weren’t easy times either.

But they can seem “easy” relatively.

 

Easy was never in the plans for us.

 

But…

 

Persistence, that was.

Patience, that was.

Learning to climb mountains, that was.

Falling, and getting up again, that was.

Coming face to face with anger, pain, and bitterness, that was.

Grief, that sure was.

 

But thank God.

 

Because, the most important part of our story is this.

That redemption is, always was, and always will be, the best part of our story.

Not because of anything we can do, but because of Him.

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.

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.

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.

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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