Wednesday, October 5, 2016

More grace and a chew toy.






Come, thou Fount of every blessing,  tune my heart to sing thy grace;
streams of mercy, never ceasing,  call for songs of loudest praise.
Teach me some melodious sonnet,  sung by flaming tongues above.
Praise the mount! I'm fixed upon it, mount of thy redeeming love. 


The other day, I found myself slumped over my bed crying my eyes out over a chew toy.

Yes, a chew toy.

Not for a pet we own, but for our little doodlebug.

As I opened the link on my phone to place the order to purchase it, I broke. The past few months we've endured came flooding in with tears and waves of deep emotion.

Isaac is doing wonderful physically.
A recent visit to the cardiologist revealed that his heart is completely healthy.
A recent visit and scope with the gastroenterologist revealed that his esophagus is now completely open.
A recent visit with the allergist revealed that he has no allergies to foods, just intolerances.
These are all huge hurdles that Isaac has been able to cross.
We give God the glory for this!! He has never taken His hand off of Isaac.

Those issues are but a memory to us now.

But, Isaac still has daily struggles.

Several months back, Isaac began sticking toys and random items down his throat to induce vomiting. He did this for some time last year, but then we found out that his tonsils and adenoids were terribly swollen with scar tissue and needed to be removed. That issue was resolved with surgery and it seemed as if we were out of the woods with just about every issue he was having.

So we thought.

Those issues just seemed to mask or take precedence over something that was going on that none of us really expected was still there.

Isaac's oral sensory issues were coming into full swing.

Isaac has Sensory Processing Disorder. He was diagnosed at just 11 months old.

There are several sensory areas that are affected.  Isaac's biggest sensory area is his oral sensory.

He has what is referred to as hyposensitive oral sensory.

This means that he has low oral tone and very little awareness of what's going on inside his mouth. It is also referred to as oral numbness. For this reason, Isaac craves oral sensory input. This is why he was sticking things in his mouth.  He is constantly on the search for something that will create a sensation in his mouth (oral stimulation), rather that be eating food or something that can actually harm him.   To him, there isn't any difference between the two. They both give him (his body) the same signal.

Stay with me. I'll try to explain...

Touch receptors (cells that give your brain information about the world around you through touch) are located all around the body. The mouth, lips and fingers are considered to have the most concentration of touch receptor cells in the body.  More brain power is spent interpreting touch sensations from the mouth, lips, and fingers than from other areas of the body that have touch receptor cells.

Touch helps us to experience hot, cold, pain, pleasure or pressure. Touch is an important sense because without it we would not recognize pain or pressure, which in return could put us at great risk. Touch processing is very closely linked to emotional development which can also affect healing and the reduction of anxiety and tension.

Isaac's oral development was slowed down due to the compression of the heart artery up against his esophagus.  He endured oral dysphagia (weakness in the oral muscles) for so long that he did not get to discover the world around him with the normal oral sensory input, his oral touch receptors. Now, his body is desperately trying to catch up. We recently found out that his tongue and cheeks are both still not experiencing normal mobility as they should be for his age.

Along with sticking things in his mouth and constantly feeling the need to eat or snack, he over stuffs his mouth with food looking for oral sensation, which can be very dangerous - due to the fact that he doesn't chew his food properly because of the immobility of his tongue-which is used to help chew.

You still with me? I do have a point I'm getting at.

We all have sensory receptors. They are connected to the five sensory areas. Our sensory receptors give signals to our brains. Our brains then tell us how to react to a certain signal with an emotional response; pleasure, surprise, disgust, pain, fear, etc. When Isaac's sensory receptor sends a signal to his brain, the message is confused and gets all jumbled up, creating a sort of traffic jam in his brain, so that the wrong response is sent from his brain to his sensory receptor.

This jumbling causes Isaac to be in constant fight or flight mode. It creates anxiety and disorganized feelings. It creates a feeling inside of him that is uncontrollable at times. He has meltdowns, he screams, he hits himself and thrashes around, trying to find peace within himself.  And he chews on everything he can fit inside of his mouth. Like an infant, he discovers everything though his mouth.  Strange as it may sound, as Isaac creates oral stimulation for himself, it helps to calm him and reorganize everything in his brain. Isaac has a lot of anxiety. A lot. Not only does he have the physical aspect of oral sensory going on, but he is also dealing with PTSD from all of the illnesses he has endured since he was born.  He has a fear that he will become sick and suffer the same things he has over and over again. We believe that this is what is creating his lack of sleep. His worst moments were always at night. He had severe obstructive sleep apnea for over 18 months. This creates anxiety for him at night, so he awakes feeling anxious and scared. This creates the need for oral stimulation. He will drink periodically throughout the night looking for that calming oral stimulation. It's a never ending cycle.

This is where the chew toy comes into play. Isaac can now chew on a special necklace designed for sensory needs, instead of wanting to eat constantly or stuff a straw down his throat or chew on a rubber tire that he has bit off a hot wheels car. Yes, he's done that and more. Chewing on the necklace will help give him the oral sensory input that he is looking for.

Isaac has recently begun going back to speech, occupational and physical therapy. We are also looking into reflex integration therapy that can help him with his PTSD. I've recently discovered essential oils that have helped to calm him and give him a better nights sleep. Not a perfect night's sleep, but much better.  He goes to therapy three times a week to work on these areas. It's been hard for him, but it's been good for him. He looks forward to going to his "class" and playing with his "teachers".  And it has been good for me. So very good for me. When I walk into the therapist's office, there are no judgmental eyes glaring. There are only other mothers who understand. Mothers who see. They get it. They look with eyes of compassion. There aren't tons of questions or looks of doubt or concern for my, at times, unruly child. They don't cringe when they hear him scream because they hear the same screams.  There's just talking, sharing, listening and tons of grace. Oh, the grace that comes from these mommas. There is such beauty in communing with them. It has been good for my heart and healing  for my spirit. It has been an answer to prayer for me. I have felt so alone at times, not wanting to share everything with others. Even my family and closest friends who have walked through this journey closely with me, do not know it all.  God truly listens. He saw what my heart needed and met that need.  There is no lack with Jesus!

Isaac also has three of the most gentle, kind and patient therapists! They work together to decide what tools and techniques work best for Isaac. We are so blessed to have them teaming up to help Isaac live a happier life while dealing with these disabilities.

Disabilities.

As I type that, my eyes fill up with tears.  It has taken me a long time to deal with the fact that Isaac is considered a special needs child. I don't know why. Maybe it's a heart issue that I need to work on, or maybe it's just the desperation for me as a mother to want my sweet boy to be well.  To finally be well.

Oooof...it's been a long three years. All the doctors and diagnoses and hospital stays and procedures and surgeries and medications and long nights. It's been a lot. It's been hard. It took me a long time to be able to admit that as well, that it's been hard. I had to give myself permission to say it and realize that saying it isn't a sign of weakness on my part. It's an indication that I need my Savior. I need Him to be the strength that I, on many occasions, can not muster on my own. I need Him every day and every moment. I simply need Him.

The fact is, it's still hard. That doesn't mean that I don't have faith or that I am claiming something that doesn't need to be said. It's stating the facts. It's still hard. And without letting those words cross my lips, God knows my heart. He sees the weariness and the heaviness and He is close to me.

Don't get me wrong here. We have plenty of wonderful days. Isaac is a sweet and lovable boy. We enjoy being his parents. We relish in all the good and the bad.
 God sees those moments too.

God also sees the joy. He rejoices in my worship over Him for all that He has done in Isaac's life. Every day has been a gift. Each and every day.  He hears the laughter and the giggles we have with Isaac. He knows we are humbled to have been chosen as Isaac's forever family.  He sees the love we have for this precious boy. He knows, that even on the hardest days, that we are thankful. He knows that our trust lies only in Him.

Here I raise mine Ebenezer;  hither by thy help I'm come;
and I hope, by thy good pleasure, safely to arrive at home.
Jesus sought me when a stranger,  wandering from the fold of God;
he, to rescue me from danger,  interposed his precious blood. 



I contemplated several days before writing this blog post. It's hard to put to words sometime how all of this plays out in our lives. Not to mention, it all occurring while Isaac is also being a vibrant, stubborn, and strong willed 3 year old at the same time. Ehemm. Need I say more?

As I sat beside my bed holding my phone opening the link to order the chew toy, with what I felt as the weight of the world on my shoulders, I asked myself, "Why is this upsetting me so much? Why am I letting this get to me like this?"

The answer was a little embarrassing. I was worried about what other people might think.
What will they think when they see him chewing on a necklace that's actually a chew toy? What kinds of questions will come from this?

Foolish, right? Yeah, I know.

We get the looks and the stares because of Isaac's behavior in public. Normally, those looks and stares don't have much effect on me. I chock it up as people just not having enough information and forming their own opinion. It's been a battle I've chosen not to confront on many occasions. Something about this chew toy issue just caused me to get all stirred up inside. Emotions came up from everywhere.  For the most part, Isaac is good, but social interaction isn't always his best suit. It creates an anxiety inside him, even though he is excited to be wherever we are. The parties and get togethers become difficult when he screams blood curdling screams just because he has stubbed his toe on an outside toy. His screams are glass shattering. They are his natural response to anything, good or bad.  Yes, he has come such a long way from where he once was. I definitely see huge changes in him. But, not everyone sees. Not everyone knows the treacherous roads this little guy has traveled and survived. Not everyone knows the source behind those screams.  Not everyone knows what Isaac deals with on a daily basis.

The thing is, not all disabilities have a face. On the outside, Isaac looks like a perfectly healthy 3 year old. There are no physical attributes that tell you he has SPD. To others, he just looks like a perfectly misbehaved 3 year old. People make remarks or they just shoot a look our way. They  look with disapproving eyes at the way I discipline him or don't discipline him when he screams and thrashes. They snicker things like, "If he were my child, I'd spank him good."  Unfortunately, you can't spank a disability off of a child anymore than you can rub cancer off of someone. It's not a problem that needs to be solved.  It's just a small part of what makes him who he is.  He's not "broken" and doesn't need "fixing". He's a person who just so happens to have needs that are different. Needs that make him special.  Needs that make him human like the rest of us.

A few hours after I sat on the bed crying and feeling sorry for myself that I had to order Isaac the chew toy, I went riding to Lowe's with my husband. The tears ran down my cheeks as I thought about it. My husband inquired about what was bothering me, so I filled him in on everything and how I felt about it.

His response?

"Who cares what people think?! God gave Isaac to us and our opinion of him is the only thing that matters. If more people's opinion mattered, God would have called a board meeting on Isaac's behalf. But He called us to this. He just called us.  God knew that you would be the right mom for him and he knew that I'd be the right dad for him.  Nobody else's opinion matters to God. So what if he wears a chew toy around his neck? Maybe if more people chewed on chew toys, they'd be less cranky, less stressed out and less rude. Maybe we all need more grace and a chew toy!"

I giggled loudly. He was right. He was so right!

Maybe we all need more grace and a chew toy.

More grace and a chew toy.


O to grace how great a debtor daily I'm constrained to be!
Let thy goodness, like a fetter,  bind my wandering heart to thee.
Prone to wander, Lord, I feel it,  prone to leave the God I love;
here's my heart, O take and seal it,  seal it for thy courts above



Maybe I need to give myself a little more grace. To give our life with Isaac a little more grace. To give others - who just don't have a clue about any of it - a little more grace.

Colossians 3:12
"Put on then, as God's chosen ones, holy and beloved, compassionate hearts, kindness, humility, meekness and patience,"


That weight that I was feeling, was the opinion of others. That weight is not something that I was ever meant to carry. The opinions of others had become a burden that was weighing me down into the dirt of despair. It was taking away from what the Truth was in our lives. The Truth is that Isaac is healed and whole. This precious boy has looked death in its eyes several times in his short life and has lived to experience joy, laughter and so much love. He has come further than many of us have in an entire lifetime. His disability doesn't take away from that. That's the Truth.
The enemy of my soul was trying to convince me otherwise. I am thankful for a husband who speaks God's wisdom when I need to hear it. I praise God for putting me in check and delivering me from the lies circling around in my head. I'm so thankful for a God who doesn't allow me to fade too far away and urges me back to His heart.


"Every time God delivers us, the point is ultimately to draw us closer to Himself.  Whether we get to avoid the pain and suffering or we must persevere in the midst of it, our deliverance comes when we're dragged from the enemy of our souls to the heart of God."  - Beth Moore


The opinions or misconceptions of others, should never take precedent over Truth in our lives.

God offers Truth where the world, the enemy, will offer fear and doubt.

I had allowed what the world thought of Isaac to have more value than what we or God thought of Isaac.

God sees Isaac as whole. Lacking nothing.
He sees Him as already healed in every area.
He sees him as belonging solely to Him.
He sees his issues as not a disability but a characteristic of His child.
If anyone wants Him healed and whole and free of struggle, it's God.
And yet, He loves Isaac just the same.
Because He already sees Isaac healed and whole.
He just sees Isaac. His Isaac.






So what if Isaac needs to wear a chew toy around his neck. Sure it's strange and different. But if it helps him be a better, happier, and healthier him, isn't that what matters most?

Maybe we all just need more grace and a chew toy.

Just maybe.

Oh, Jesus, tune my heart to sing Thy grace.


Colossians 4:6
 Let your speech always be gracious, seasoned with salt, so that you may know how you ought to answer each person.


October is Sensory Processing Disorder Awareness Month!
Celebrate the SPD children in your life!

We ALL need to be celebrated!















Tuesday, February 2, 2016

Wherever it takes me.

 
 
 


 
 
Galatians 5:7
You were running a good race.  Who cut in on you to keep you from obeying the truth? That kind of persuasion does not come from the One who calls you.  "A little yeast works through the whole batch of dough."  I am confident in the Lord that you will take no other view. The one who is throwing you into confusion, whoever that may be, will have to pay the penalty.
 
 
Something happened a few weeks ago, that really had my heart wrecked.
 
It caused me to be an emotional mess for several days.
 
I reached sort of a crossroad in an area of my life.
 
A decision had to be made.
A hard decision.
A tough decision.
One that involved people that I care deeply about.
One that would effect many people I love.
One that could hurt friendships.
 
The feelings it caused me to have were out of my character and I didn't know where it was all coming from or how to sort through them.
 
It made me physically sick. I was a wreck.
 
The thing is...I didn't like the decision I had to make.
Even though I knew it was the one I was supposed to make, I still struggled with it.
 
I began to question:
People may be mad at me?
They may not like me anymore?
It may make me look like a bad person?
 
All the questions that it raised were all about me and how the outcome would effect me.
 
I had to stop myself. I had to pray about it. Really, really pray and seek God's direction.
 
Peace began to fill my heart as God showed me that the decision I was making, wasn't about me at all. There was a greater purpose within it and I didn't need to know what it was just yet. All I needed to do was to obey the call on my heart to make the decision.
 
The heart confusion that I was feeling was me fighting my own flesh to obey the call.  The enemy began to bring confusion in from all directions. Opinions from others began to try and sway me. My mind swirled with the question of the unknown.
 
 
I'd been studying the book of Exodus for several weeks.  God reminded me of Moses and how he too struggled with obeying the call that God had given him.  He begged God to pick someone else. Someone who was stronger.  Someone who was more qualified.  He feared that he would be made fun of, or disliked, or not be understood. His heart was wrecked. He was an emotional mess.
 
I get it, Moses, I totally get it.
 
I started this year with three words.  God gave them to me right before the new year began.
 
"Boldness to Obey"
 
That's it.
 
I began to let the words seep into my heart and spirit.
 
I prayed,
"God, give me the boldness to obey You. To do whatever you ask. No matter what that might look like. More of you, God. Less of me.  "
 
Lo and behold...there I was, just a few weeks later, in a tough situation where I needed to have the boldness to obey.
 
I (we) decided to obey Him, no matter the cost, no matter the outcome, trusting His guidance.
 
Will people be mad at me? Probably.
Will they not like me anymore? Maybe.
Will it make me look like a bad person? Most likely.

That part is difficult. It feels good to be loved, and liked, and cherished, and thought of as good. I'm just learning that you can have all of those things with someone and not necessarily have them agree with all of your decisions and vise versa. That too, can be difficult.
 
God never promised that the call on our life would be easy. He never said we'd have an audience of applause waiting for us. He promised blessing with obedience. His blessing.
He said it would be worth it, and it will not go unfinished.
 
 
Philippians 1:6
And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.
Moses obeyed.
He lost friends. He lost the only family he had ever known. He spent years alone in the wilderness.  People thought he was a little nuts.  People didn't understand. 
People didn't like him anymore.
 
But, that decision to obey, whether difficult or easy, or full of doubt and fear of the future...
led to the deliverance of hundreds of thousands of people into the Promised Land.
 
All God needed was his obedience.
Not his understanding.
Just his obedience.
 
The thing is...God didn't just lead Moses, He loved Moses. He protected Moses.
 
I truly want the boldness to obey.
I want to go wherever He leads.
Whatever that looks like...I want to obey.
 
Psalm 138:8
The LORD will vindicate me; your love, LORD, endures forever-- do not abandon the works of your hands.
 
God has shut a door for us. 
It took me by surprise.
I didn't see it coming.
He has asked us to keep the door shut. Not to open it until His timing is perfect. I'm not sure when that will be. Or if it will ever be.
 
But, I trust Him.  I fully trust His good for us. For our children. For our family.  I trust that His love for us will never waver. I trust that He will protect us. I trust Him to right the wrongs. I trust that He is all knowing. He sees the picture in its entirety. I see but a glimpse.   And even in my moments of doubt, or question, or fear, I want to obey Him.
 
His LOVE is all I need. It outweighs anything this world can offer.
 
It's always enough and I want to go wherever it takes me.
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 


Wednesday, November 25, 2015

All done.


Peter 1:1:7
Your faith will be like gold that has been tested in a fire.  And these trials will prove that your faith is worth more than gold that can be destroyed.  They will show that you will be given praise and honor and glory when Jesus Christ returns.  

 
All done.
 
It's what we've heard our Isaac say over and over and over again this past month, and more so, over the past couple of weeks.  I think I've heard him say, "All done, all done." about 1,000 times or more.  

 "All done."
 
He says it when he's scared. Scared of someone poking him. Scared of the surroundings in a doctor's office.  Scared of nurses and hospitals. Scared of anything remotely looking like medicine or a procedure. Scared of pain.
 
 
As it leaves his mouth in desperation, I recognize it. It's been my heart's cry for a while now.
 
"All done, Lord. Let us be all done. Let this season be over, finally. All done."
 
I know we aren't supposed to rush God or rush a season, because within every season there is an appointed time for growth. I also know that God does not bring pain, but He does allow something powerful to come from within it, if we allow Him to. There is a purpose hidden deep within it. That purpose can catapult us into a new place within Him. I don't want to ever go ahead of Him or miss Him. I want to stay in Him. But,  I know that without the stirring up of the soil that comes with growth, there is no bloom, there is no harvest.
 
I hope with everything in me, that our harvest has come.
 
 
And when a man works dirt, he cultivates a life needing patience and kneeling to Providence: you can’t drive a seed to grow and you can’t demand a sky to give.
~~Ann Voskamp
 
 

Isaac had surgery about two and a half weeks ago to remove his tonsils and adenoids that were enlarged due to layers of scar tissue that had grown during the first 15 months of his life. This scar tissue was the result of severe reflux caused by the artery constriction on his esophagus.  As he grew bigger, so had the scar tissue, enlarging his tonsils and adenoids creating severe obstructive sleep apnea and more reflux. No one could foresee this coming down the line for him. We all thought that after he healed from heart surgery, he was good to go. We would find out a few months later, that it was not the case. Although the surgery was an all cure for all of the present symptoms he had, it brought on new ones that would soon reveal themselves. Even though it took several long months to figure out what was going on,  I am so thankful that this domino effect had a simple solution to fixing it. Remove the tonsils and adenoids, remove all the scar tissue.  He also underwent a turbulent reduction to open up the airways in his nose, to allow him to breathe easier.

I wasn't prepared for the pain that would follow his surgery. I've heard our sweet boy cry out in pain so many times the first week after, that it brings me to tears when I think about it. There was only one other time that I've heard that painful cry come from him. It was when they removed his ventilator three days after heart surgery. He cried that painful, wailing cry for over 45 minutes. There was nothing we could do to soothe him. He just cried and cried. Maybe he was crying out to God then to be "all done", but his little voice didn't have the words.


On day 9 after T and A surgery, we were back in the hospital because Isaac was badly dehydrated.




The thing is, although this surgery was much needed, it affected Isaac's biggest sensory area. His oral sensory.  After experiencing the gagging and choking he did over the first 15 months of his life, he learned how to protect himself by either not eating or being very particular about what he allowed to pass down his throat. He will chew food, and spit it out in fear that he won't be able to swallow it. Other times, he will gag himself causing regurgitation because he's just not sure about what is trying to go down. With the inflammation due to surgery, he felt as though he couldn't swallow anything so had refused to drink or eat anything. This is bad news for a T and A recovery. Fluids are what helps the throat heal. He was also refusing pain meds. Not a good scenario.

After 14 1/2 hours of no fluids and no wet diapers, he finally found relief. He was placed on IV fluids and steroids to shrink the inflammation. Little did we know,  there was very little opening in his throat due to the inflammation and he had also begun bleeding. He was in severe pain.

We are now at 2 1/2 weeks post-op and Isaac is doing wonderfully!
He is eating and drinking, without complaint. He is sleeping again. The obstructive apnea is gone. All gone. Last night, he only woke up once. We are sleeping again and it is glorious!
Sleep, oh how I've missed you!
 
 I pray, that this is the last of the surgeries and procedures for a very long time.
In fact, nothing is on the horizon.
No procedures, no doctor visits (besides normal checkups) and no surgeries.
I don't even know how to act to that. Weird, I know.

So, I'm hopeful.
We are all hopeful.
We've learned throughout this entire season with Isaac, that Hope outweighs the hard stuff. That even when things are rough and seem impossible, and the questions seem to linger unwanted and you're tired, just simply tired...Hope gets you through one moment at a time. Hope keeps your head above water.  Hope reminds you that God is good and that His presence is woven into every fiber of our lives.

Hope reminds you to press in.


Micah 7:7
But as for me, I watch in hope for the Lord, I wait for God my savior; my God will hear me.


Isaac lay next to me sleeping about a week or so ago. He was finally sleeping after a very long day full of some of the worst pain I have ever seen him experience, I heard him softly crying in his sleep, "All done, all done."
 
There next to him, the tears fall and I press into God.
 
"All done, Lord, all done."
 
They are the only words that I am able to get out and I hope that within those few small simple words, He hears me.


There is a good working on my inside when circumstances are hard fought on the outside. 
If we will press in and hold tight to the Lord, there's a gift in the yuck.
~~Lysa Terkeurst
 

Last night, he lay next to me again. He was finally sleeping after a very long day of playing and spending the day with his two older sisters. I heard him softly breathing. No snoring, no choking, no struggle to breathe. Just peaceful sleep.

There next to him, a smile takes over my face and I press into God.

"Thank you, Lord, thank you."
 
Maybe, just maybe, we are all done after all.
 
Maybe, our harvest has come.


I am still confident of this: I will see the goodness of the LORD in the land of the living. Wait for the LORD; be strong and take heart and wait for the LORD.
Psalm 27: 13–14

 
 


Tuesday, September 22, 2015

I'm disappointed, but...

 
 
 
 
"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss and have found their way out of the depths.  These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen."
~~Elizabeth Kubler-Ross
 
 
Psalm 94:18-19
When I said, "My foot is slipping," your unfailing love, LORD, supported me. When anxiety was great within me, your consolation brought me joy.

I'm disappointed.
 
Disappointed that we are in a familiar place again. Disappointed at what this place brings to our lives. Nobody likes it. We just go along doing our best to survive it.
 
Isaac's body is experiencing referred reaction to months and months of chronic reflux. He has scar tissue that has built up in his body from all of the acid from his tummy before and after his artery repair surgery. Over time, this scar tissue has grown and is now causing chronic rhinitis and obstructive sleep apnea. He has begun to sleep with his neck tilted far back, in order to compensate for the lack of air he is breathing in through his nose and mouth. He slept like that for the first year of his life when he first experienced obstructive sleep apnea. There are a few other domino effects that it's causing throughout his body that we are keeping a watch on.   He will undergo a ct scan within the next few weeks and another surgery or two, to cut away the scar tissue so that he can breathe easier at night. The ct scan will also revisit an area of abnormality that was found on his brain when he was just a few months old.
 
It's been over 3 weeks now, that we're going about our day on about 4-5 hours of sleep a night. All of us.  It's beginning to take a toll on the household. We do our best to keep things as normal as possible around here, but some days, it's just not doable. I think we all want to scream at times, because we can't believe that we are revisiting a season that we prayed so hard to get out of. One that we lived in for over a year.
 
Medicine regimens have changed and increased and now we give Isaac 9 different medicines during a 24 hour period. A few of them we give 4 times a day. For a busy toddler, who doesn't know that he is sick or not sick, mainly because this is all he's ever known, this just doesn't fit into his schedule. He'd much rather be playing with blocks or dirt, instead of being held down for another breathing treatment.
 
 
We celebrated his birthday this past weekend with family and friends. It was a day that reminded us to take in all of the joy and put the hard stuff on the shelf for the day. The hard stuff? We've seen our share over the past 2 years. On most days, I can honestly say that I get into a groove of "we got this". We've survived worse than this, right? This should seem easy to pros like us.  But, when I am finally in the quiet of my van on the way to the post office or to the local supermarket, my tears say otherwise. Frankly, I'm tired. Physically and emotionally tired. 
 
Don't get me wrong, I adore this boy with every fiber within me. I can handle the medicine schedule and the sleepless nights. If I push myself hard enough, I can even wear a smile on my face that no one would even think to guess was fake. But, watching your child suffer and continue to struggle with physical illness, gets old. It doesn't get any easier. My heart breaks because of it. It drains me to empty on most days.
 
 
People aren't always easy to deal with either, whether it be the nurses or physicians, or people in the waiting room with us.  Isaac has severe anxiety disorder in doctor's offices. He begins to feel it as soon as the door opens and he takes in every medical device on the wall, or even the familiar fish tank that seems to be in all of the waiting rooms.  He whines and moans until they call his name, in which he then begins to cry and cling to me. The clinging soon turns into fight or flight whaling and thrashing as he sees the examining table in the room we are assigned to. People just don't get it. They don't know his history unless they spend hours reading his medical folder. They just see a screaming toddler or a very loud obnoxious- misbehaving- thrashing toddler. And really...I get tired explaining to people why he is the way that he is. And compassion doesn't run deep in everyone. I smile through my tired and sweat filled body, while I fight to hold him and do my best to soothe him. They don't know the internal struggle that's going on inside both of us.
 
 
Then there are people who know his history.
The people that have seen us walk through the past two years.
I know their heart is genuine for the most part. I know that they love us and our boy. We have seen Jesus in the face of many, many people. People that we would not have expected to bless us, have blessed our socks off at times. Friendships have surfaced that are absolutely a blessing and friendships have faded from the awkwardness of our "situation". People don't always know what to say or do in situations like ours. Situations that seem to last for seasons and seasons.  Comments like, "Oh, he's sick again?" or "Oh, you poor guys." or "He looks so healthy.  Are you sure he's sick?" or "You just gotta have faith".  They ask how he's doing in hopes that you are going to say that he's doing great. And most of the time, I say that he is, because at the time, in the middle of the day, he's fine. When in reality, our nights are a nightmare. I used to look forward to bedtime, but now, it makes me nervous. I kind of hate it.  But, people don't want to hear that. They want to hear that he's doing good. They want to know that you are doing good, even though you're not. It's just a weird place to be. I pray all the time that my frustration and discontent in where we are does not reflect from my mouth towards others. I pray that my words are gentle and full of hope and strength. I pray that people see more of Him, and less of me. I pray that I reflect His grace over and over again.   But, sometimes, I just need to be real with myself. It's just hard all the way around.

 
My precious friend wrote a blog a week or so ago. I read it and sobbed and cheered and clapped like a crazy seal. It was as though she looked through the window of my heart and saw all the emotions inside of it. She's in a hard season with her own child. She really put things into perspective when it comes to dealing with others while they are in a hard place. She's pretty amazing! If you aren't following her blog, you should be. There's also an opportunity to bless her family at the bottom of each post.
 
 
Yesterday, as I watched my little doodlebug play in the dirt outside, I talked with God. I told Him how disappointed I was to be where we are, again. It's not exactly the same, and I am thankful that our boy's heart and esophagus are healed, but it's a familiar place I just didn't want to revisit.  I cried and let Him know what I thought of our situation.  And then I sat in the quiet as my tears hit my lap.  He gently reminded me of this scripture:
 
Psalm 34:18
The LORD is close to the brokenhearted and saves those who are crushed in spirit.

 
Disappointed people have broken hearts. Disappointed people feel like their spirits are crushed.
 
That's me.
 
He is close to the disappointed. He is close to the broken hearted. He is close to those who are crushed in spirit. He is close. 
 
God knows that there will be times that our hearts will be crushed, times that we will be disappointed with our circumstance. And He promises to be close to us. He declares it. The word "is" declares it so. "Is" is a state of being. A place of current existence. In the midst of my disappointment, He IS close to me. He exists in the same space as I do.   He IS with me. He IS my God.
 
 
It's okay for me to feel this way. It's okay for me to not want to be here, to not want to relive this place with our boy.  Life is just that way sometimes, disappointing.
 
The scripture goes on to say:
 
Psalm 34:19

The righteous person may have many troubles, but the LORD delivers him from them all;

Just because I am disappointed right now, doesn't mean that I don't believe He will deliver us, just like He did before. It doesn't mean I've lost my faith.  It's just a place I am right now. It only determines my current position, not my destination. 

 

I know that we will one day see this season as a distant memory. I know what my God is capable of. I know that the Redeemer redeems all things.  But, for now, this place is very real to us. It's where we are. It's our normal.

 

Proverbs 24:16
"for though the righteous fall seven times, they rise again,"
 
 
Last night, I laid in bed with our little guy as we read one of the new books he received for his birthday. We snuggled and giggled as we read the book over and over again. In that moment, everything was just as it should be, perfect.
 
I'm disappointed, but it won't last forever.
 
 
Psalm 71:5-8
For you have been my hope, Sovereign Lord,
my confidence since my youth.
From birth I have relied on you;
you brought me forth from my mother’s womb.
I will ever praise you.
I have become a sign to many;
you are my strong refuge.
My mouth is filled with your praise,
declaring your splendor all day long.
 
 
Psalm 71:14
As for me, I will always have hope; I will praise you more and more.
 
 







 
 
 
 
 

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