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.

 

 

Who Said That was True? Uncovering the Lies of Anxiety.

Who said there was only one gold standard way to do things right?

Who said you don’t do anything on that list as well as you should?

Who said you should be more?

Who said the talents you have are not praiseworthy?

Who said you should act a certain way?

Who said you aren’t worth it all?

Who said you don’t look good enough?

You don’t speak properly?

You don’t wear that outfit well enough?

Your hair is the wrong color?

Your body is the wrong shape?

Your position at work isn’t honorable?

Who said you don’t live in the neighborhood you should?

You don’t have the house you ought to?

Who said you don’t parent like you should?

Send your kid to the best school?

Have the right car?

Who said you can’t do any of these things right?

Who said you never will and you never have?

Was it someone speaking over your life as you grew up?

Was it someone at a job you once had?

Was it a teacher?

A significant other?

Someone at church?

Someone you looked up to or a close friend?

Who said it?

Someone you wanted to say more?

Someone you wished praised you instead of put you down?

Someone who’s approval you thought meant everything?

So maybe someone pretty important said it.

Think about it.

How did -whoever said it – get that much power to influence you as strongly as they have?

Tell me, how did they convince you?

Is it because you believed it that made it hurt so much?

Who perpetuated its value and hold on you?

That part came when you kept repeating it to yourself.

In the name of Jesus, break the chains, and speak new true words over your situations. Believing the words that come from the Lord, who loves you like no one else could, changes everything.

Rebuke all the lies that have ever held any power in your life and walk forward- like a heavy weight released from you, freer, happier, complete, and whole.

And try, guard yourself, clothe yourself, with the wisdom and value God gives you- so as not to give away your power to the wrong person again.

Realign.

Nobody’s opinion or words mean more than your Heavenly Father, God’s.

But you can’t really ever hear His, and live His, while you are holding onto everyone else’s.

Stop for a minute and think about who said it, before you continue believing it.

So, who really said it?

The enemy or the victor?

The one who opposes you or the one who is for you?

Was it a liar or the author of truth?

Who said you can’t achieve your dream?

Who said that you are incapable?

Insufficiency equipped?

Was it you who set your limits?

Was it you who questioned your own worth and ability? Was it from a fear of coping with disappointment or of failing to achieve anything great?

If He put it in your heart and you seek it, you shall find it. You shall receive all that you have asked for in His name. It may not look anything like you thought it would or should, but that’s for your best that He does it that way.

So next time the enemy tries to stuff you down, and tempt you to believe that you are anything less than you are, remember whose you are. Remember what’s been done for you. And rise. From the ashes. A new creation, born again, in Him.

You, my friend, are a beautiful creation, infused with God breathed wonderful giftings- you are not stuck- and as you continue to put Him above it all, you are unraveling into the miracle God is making of you.

Maybe you’ve believed it for most of your life. Does that make it true? Did you ever stop and ask, but “who said?”

So, what is next?

What voice will you choose to believe today?

Why Saying “no” is so Necessary, as a mom of a Child with Autism.

You cannot people please with a child with autism. Trust me I have tried. I have spent way too much time trying. Way too much time disappointing myself. As a special needs mom, however hard it may be, you must learn the skill of saying “no.” It won’t be easy, but it is necessary to learn this lesson.

You are Your Child’s Advocate and Voice.

 

 

For example:

No– that doesn’t work for us.

No– that doesn’t help my son best.

No– that is not the way he will do it.

No– we cannot come to that.

No– that school model isn’t right for my child.

No– that kid cannot treat my kid that way.

No– that adult cannot treat my kid that way.

No– we won’t stay the full time of the event.

No– he won’t say hello.

No– he won’t look you in the eyes.

No– he won’t sit down in a chair for that long.

No– he cannot stay still for that long.

No– he does not learn that way.

 

What saying “no” does NOT mean:

We don’t love you.

We don’t like you.

We don’t want to be around you.

We are judging you.

We think we are better than you.

 

 

What saying “no” DOES mean:

I recognize my child’s unique ability.

I recognize my child’s unique struggle.

I recognize the environment is overly and intensely stressful and possibly traumatic and harmful for my child, and I am going to do something about it.

My child is a priority to me.

Who my child is matters to me.

 

The bottom line is this:

I love him when its hard.

I love him when its easy.

I love him unconditionally.

God has called me to do that.

And, I am better because of loving him.

 

 

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.

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.