Dear Quarantine Mama who is Struggling.

Quarantine Mama,

I see you. I hear you, I understand how you feel. I probably am you. I want to tell you that everything you are not being today, is OK. You don’t have to worry and feel guilty about not being enough. This has tested you, and pushed you to limits. This has changed everything, and all that you have known is different. But it’s OK to take time to adapt to the new normal.

I frequently see posts about people’s new hobbies, newly cleaned and reorganized closets, or rooms in their homes. That is fantastic, if that’s how you cope, and what you enjoy, but not everyone is feeling up to things like that. If today all you did was let your kids watch TV and play video games, you are still a good mom. You still love your children. If your children annoy you to pieces at times, and you hide in the bathroom to get a minute to yourself, it doesn’t mean you are a bad mama.

It might mean you aren’t perfect. But you were never meant to be, that’s an impossible standard. So let’s get rid of some unrealistic expectations.

  1. Everyone else’s needs will come before your own. This is like the “put your oxygen mask on before helping someone else.” You can’t keep up with everyone else’s needs if you aren’t taking care of yourself. This will eventually lead to being overwhelmed or so stressed that you make yourself sick. Please do something for your own emotional and physical needs for a few minutes each day.
  2. Everything will fall apart if you don’t handle it. Not true! The dishes will get done another day. The toys will get put away when you get around to it. If you miss an appointment accidentally, show yourself some grace. You can’t remember it all, every single time.
  3. You will be a super involved loving mother to your children all the time. Try as you may to be part of every waking minute of your children’s lives and entertainment, there will come a point in time where you need some time to yourself. You need to have your own thoughts, adult conversation, and a friend who can listen to the hard parts of your day. Reach out to someone who is safe, who loves you. Trust me, they won’t mind hearing you vent, if they care, and if they have ever gone through anything similar.

So, if today all you have is ordering pizza (and an amazon package), there is a mess in at least two rooms in your home, and your kids don’t have you as a constant playmate, or you don’t play that board game for the tenth time in a row, it’s OK. Days like that will happen, and you will be better for them for showing yourself grace, and considering yourself important. You are not a bad mom. You are a human being, who needs permission to take a break. So here it is. Here is your permission, to breathe, cut yourself some slack. Your kids know you love them. And tomorrow can be a better day. And if it’s not, nothing says you can’t have two meh days in a row and still see better days ahead.

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.

 

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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.

 

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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.

 

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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.

 

 

I am the “I” in IEP.

I am the I in IEP.
I am the mom who knows the most about my son.
Who wants more than anyone else at that meeting table to see you succeed, to see you grow, to see you be and feel accepted, to see you have all the support you need without accidentally giving you too much that that in itself disables you.
I am the one who has sat through countless therapy visits, hour after hour.
I am the one who has learned strategy after strategy to get you to the state of progress you have made.
I am the one who has stood in the face of adversity, from the moment you were born, on your behalf.
I am the mom who has kept records, scheduled and attended the meetings, taken notes, researched for days, upon years.
I am the I in IEP, who knows a great deal about what is at stake.
But we sit at the table and you say to me,
I am the I in IEP.
I am the school.
My hands are tied.
I do care about your child.
The funding isn’t great for our special needs kids who don’t quite need extreme amounts of help.
I will tweak the services he would benefit from to just a little less than what would satisfactorily do.
I will present the accommodations, but there likely won’t be enough staff to assist with them.
I will sometimes care enough to try harder, but ultimately, I am a limiting in the IEP.
I am the I in the IEP
I am the advocate who will stand beside you.
I will fight for you.
I will negotiate for you.
I won’t let you do this alone.
I will call out the specifics that are being missed.
Just one catch. I don’t come for free.
Mom, you’ve got to pay me.
So who is the I that matters most?
I am the I in IEP.
I am the child.
I want to feel safe.
I want to feel loved.
I need your support.
I need acceptance.
I need you to see me.
I need you to see me with your heart as well as with your mind.
I need you to see me as a student but also as a person.
I need you to be sensitive to the communication styles and methods that teach me best.
I need you to see when I am overwhelmed.
I need you to encourage me.
I need you to show me that my areas of need can be stepping stones for success and growth for both me and you.
So you see, with all these “I”s in the IEP, no one is really getting too far.
Why does it feel like I am against you, and you are against me?
What if the school and the parent can turn the I into WE?
We are the partners who will not stop until we have a good plan.
We will be adaptable, consistent and loyal.
Then, we can be the team that will figure this out.
And ultimately, only then, the real I in the IEP, my child, wins.

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.

Advocacy (the beginning).

Advocacy

Parents, hear me.

Advocate for your child.

Attend the IEP meetings.

Communicate with your child’s teachers and administration.

Do not assume they are doing what is best for your child.

Find out.

Speak up, when you feel something is wrong.

Your words are important.

Your feelings are valid.

Your concerns are real.

Hopefully, your child can do this for them self, one day.

But until then, and even then, advocate for your child.

It won’t be easy.

It won’t always get immediate results.

Do it anyway.

Be heard.

Don’t be someone who settles for less than what can be.

Advocate for your child.

In all circumstances.

Don’t let your voice be silenced.

It will echo through the classrooms years from now.

Advocate for your child.

 

Definition:

ad·vo·cate

noun

/ˈadvəkət/

a person who publicly supports or recommends a particular cause or policy.

synonyms: champion, upholder, supporter, backer, promoter, protector, patron.

 

*I am still sorting out my emotions over several events over the last few days.

More to come soon…

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.

 

 

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.