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.


Saturday, August 1, 2015

Where we are.

"Seek the presence of God and hang on to Him.  Go where He goes and let Him fight for you.  Invariably when we're most exhausted, we'll find we're expending more energy fighting the enemy than we are seeking God's presence.  More than you seek to win, seek Christ! More than you seek victory, seek the Victor! As you do, you are binding yourself to His presence and trusting God to carry you into victory." ~~Beth Moore

I look at this picture and I almost don't recognize my own children.
Crazy right?
 Man, how they have all changed so much over the last year and a few months.
They are all so crazy amazing! We are so blessed.
It's been quite a long while since I have written in this space. My intentions are always to write, but the timing doesn't always fit with my intentions.  

This past year has been a full one.
 We've had lots of laughs and a few tears.  Some good times and some bad.  There were struggles and there have been victories. All in all, it's been a good one.
I'm happy to be able to have a little time to myself today, so
 I thought I'd help myself catch up on where we are.
So, if you're interested, this is
  where we are...


Amber is now 22 years old. Wow!
She is in Romania. 
 She has been there with CTI (Cross Training International) for almost 5 months now. 
 She is truly living out God's voice over her life. 
He spoke to her a few years ago, after her first trip to Romania, that He would send her back to live there for a time. 
 It is a powerful thing to watch God's words, His very breath over her, being lived out.
I am amazed at her faithfulness to her Father. I am amazed at her bravery to answer His call on her life.
I am in awe of the woman she has become.
And her smile...just radiant. She is stunning.
I am a proud, proud momma.
She is living there with the Romanian Master's Commission team and other CTI team members. She is loving it! She is ministering each day to the lost and the hurting. Truly being the hands and feet of Jesus.  She is also teaching a Sunday school class each week to a group of young Romanian children.  She is teaching them English. Her heart for children is such a beautiful thing that has unfolded over the past few years. She has become an amazing leader to the XMC team there.
I miss her. Terribly. Like, sobbing ugly cry terribly.
Communication is not always easy. She is on a 9 hour time difference and the few hours of the day that we are awake at the same time, doesn't always guarantee that we will get to chat.  Her schedule keeps her busy and mine, well, it has been crazy at times.
  I miss her sweet voice.  I miss the opportunity to just pick up the phone anytime I want and hear it. It's a luxury that I will no longer take for granted. Time is short. Oceans are far and wide.
And this momma misses her girl.
She returns home during the middle of September.
Oh, what a happy day that will be!


Kaitlyn is now 18 years old.
She is in absolute beauty.
She graduated high school this past May.
She wowed the entire auditorium with her graduation speech.
She wowed me with her extreme courage to do it.
She was my first homeschool graduate. She has made the scary choice to homeschool, four years ago, worth every second. She was a phenomenal student.
As I type, Kaitlyn is boarding a plane to return home from Seattle.
She has been working for most of the summer, saving up for her college tuition.  She has been working with the Event Force team for Microsoft Corporation during the past month, which has kept her out of state in Florida and Washington.
This girl is something else. She is smart and brave and funny and simply loves life.
She has a genuine love for people and for serving the Lord. She wants to travel and disciple others. That just makes my heart so full.  It's refreshing to watch her grow into the world changer I knew she would always be.
 I get to be her momma. That's pretty awesome.
She is beginning to take the tiny steps to walk out on that branch and take the awaited leap out of the nest.  Her wings have been practicing their flight over the past few months.
She is ready and excited to move into her dorm/apartment and  start college in the Fall where she will attend XMC.
She will do great.  I see her nurturing all her roommates and cooking meals for them. She is a giver. Always has been.  I also see their apartment full of joy. Wherever she is, you'd better be sure there will be much laughter.
Me? Well, ya know... I'd say it gets easier the more children you let go of, but I'd be lying.
It is a beautiful, yet hard process. Sort of like labor.
The tearing away of their bodies from yours. But, this time, they take your heart with them. I'm working on getting used to the process. It's a good tearing away, but not an easy one.
 Maybe, when Isaac leaves home in 16 years or so, I'll be a pro at it. (Or maybe not.)
I look forward to hugging her neck later tonight when she gets home.
Her face and her laughter have been missed around the house.
They will be missed even more, come September.

Mason is now 12 years old.
Or, as he says it, "practically 13".
 Out of all the kids, he has definitely changed the most.
He will be starting 8th grade in just a few short weeks.
In their group picture above, his face was all babyish and soft and still a little squishy.
Well, he has facial hair,  he's 5'7" and 197 pounds!
He grew into a young man overnight, I think.
His voice is changing, his face is maturing and he's passed his dad up in shoe size!
What the hoohah is happening here?
I was not prepared for this.
  I've watched my girls become young women, and now, I'm watching my sweet baby boy become a man. What a beautiful, yet heart wrenching sight.
He's just a baby!
(Well, he's my baby.)
He just returned yesterday from Tween Camp. He talked and talked and talked for the first 4 hours and then he just passed out, practically mid sentence, on the way home.  Camp tired. That's the best tired.
He told us last night over supper, that he was filled with the Holy Spirit during one of their evening chapel services. He said it was the weirdest and best feeling he's ever experienced.
I did good, y'all... holding back the tears, as he shared his life changing news in his newly deepening pubescent voice.
(I was freaking out on the inside with tears and joy and all that jazz!)
He's growing up...so, so fast.
My heart is trying to stay caught up with all of it.  I'm doing my best to flow with all of the changes going on with everyone.
Mason is a sweet, sweet young man. He's a good helper and a hard worker.
He's looking forward to his sister moving out in September, so that he can finally have the
"big room".
He's also looking forward to the day that he can grow a beard, like his dad.
I'm not ready for that.
Not. at. all.

Isaac is almost 2 years old.
He is a busy toddler who insists that he should live outside...all of the time!
(Even though his momma is allergic to the planet. Thank you, Lord, for anthihistamines!)
He is talking really well and beginning to show his own little personality.
His giggle is possibly the best sound I have ever heard.
 It is extremely contagious. It's simply the best.
He loves shoes, our rooster "Popcorn", playing with his best friend, Ren, praying and saying "Amen" at every meal, and watching Curious George.  He gives the best hugs and recently learned to say, "I wuvv oo."
I. just. melt. like. buttah.
He has come so very far since a year ago, when he had heart surgery.
We've had a few of our 1 year checkups since surgery, and for the most part, he is in great health. He no longer has the symptoms he had before surgery and it has been a blessing watching him enjoy life without being sick.
His sensory issues are up and down.  We have some really good days for the most part, but when we have bad days, they are really rough...with a capital RROOOUUUGH!
God is teaching me much about myself and how to be a mother, during this season with Isaac.
Much, much.
You'd think since my oldest is 22, I'd have this mothering thing in the bag by now. Ummm, not exactly. God is showing me that my kids aren't the only ones that are growing, or that need to grow.
(But, that's for another blog post.)
We are, however, in the middle of new medical tests. He's had some mild, yet persistent symptoms, over the past 6 months or more. An abnormal test result revealed that he could have something serious going on.  We are awaiting results right now.  We have several doctors appointments for this coming week.  We are praying and praying to receive some answers soon, and of course, for a perfect healing in his little body.
Until then, I am taking in each moment and trying not to forget to breathe.
I am reminding myself that God has our best intentions in mind. He always has.
My husband said it best,
"God's in control. He always has been. I don't want to work against what He wants to do in us, so I've just learned to go with it. His control is better than mine has ever been."
So true. Such a wise man.
As for me and this handsome stud, we are approaching our 24th wedding anniversary.
(Geez, we are old!)
We are doing our best to hold onto this fast train that our kids have us on.
They are all such a delight and we've enjoyed every part of this ride with them. We are ready to have them all under the same roof again. That will be a very good day, indeed.
We look forward to the season ahead of us. We do our best to embrace everything as it comes and not take one moment for granted.
At times, we feel so undeserving of the life we get to live.
Who knew a girl from the projects and a Cajun boy from the bayou would end up so crazy and wonderfully blessed!
God has been so very good to us.

"At the end of the day, I have a life that's good."
These days, we are doing our best to stay connected with one another. Life, these past couple of years, has caused us to get into a continuous motion of survival. Situations, beyond our control, have blindsided us and knocked us out of wack a bit. Life will do that sometimes. It doesn't ask permission before it does. Stuff just comes.
In the midst of being tossed about, we have forgotten, at times, why we jumped on this crazy train in the first place.
All because we were deeply and passionately in love.
We just wanted to breathe each other in, all of the time.
We wanted to love and laugh with each other, forever.
"Through sickness and in health. Through good times and bad. Until death do we part."
We are working our way back to that place with one another and enjoying doing so.

I am thankful for God's strength that has kept us afloat. He is quick to grab us when we begin to sink. His hand definitely does uphold us.
Frankie is an extraordinary man and a great partner. He leads our family well.
He makes me laugh until I snort. I love him so very much. He's my boo.
 This journey would not be worth living without him.
So, folks, that is exactly ...where we are.
God continues to show me, that through it all, and wherever we are... He is there.
 He is there in the good, the bad, the easy, the struggle, the laughter, the tears, the failures, the victories and in the midst of all the changes.
It's the sweetest thing, seeing His love ebb and flow through every area of our lives.
Nothing goes unseen by Him and nothing is a surprise to Him.
He is always there, watching over us.
Where we are...He simply is.
Psalms 33:18
"But the Lord watches over all who honor Him and trust His kindness."

Friday, June 5, 2015

I remind myself.

God promised to redeem all things. 
 He never said they'd make sense.
That's why He gives peace that surpasses our understanding. 
While there's a lot I will never understand, I can be anchored by peace even in the tumultuous seas of ambiguity.  God shines brightest in contradictions.  There is wholeness in brokenness.  Sufficiency in weakness.  Strength in surrender.  Honor in humility.  He is right there with me in those painful, dark, confusing contradictions.  Ever calling me to trust and to let go of my need to understand. 
 ~~Alece Ronzino
There are no words to describe how I felt when I first held Isaac in my arms.  I walked into the small post-partum room and there he lay all bundled up and cozy in his bassinet.  As soon as I saw him, I had to fight the urge to run over and snatch him up as quickly as I could. But, I waited. Everyone greeted and chatted about him and my heart stood beating loudly in my chest.  Then, I heard the words I had been waiting to hear for 5 months, "Well go ahead, pick him up, Momma.  Pick up your baby boy."
I did...and my heart oozed out slowly in a moment that seemed to move in slow motion.
I have been chasing my heart ever since, trying to get it out of this boy's hands.
I can still remember each time I held one of my babies. That first meeting, that first smell, that first feel of baby perfect squishiness.  Man, that is the best. Truly heavenly.
But, there is something different about holding a baby given to you by God. Yes, all of my children were given to me, but this, this is not the same.Words can't do it justice. 
There is something about God handing you someone else's baby.
There is something about a young mother handing you her hopes and dreams wrapped in a tiny blanket.
There's a trust there. A genuine soul to soul trust.  A life or death trust.
We've learned so much about trusting over the course of the past 2 years or more.
We had to trust that our ears heard God correctly when He spoke into our lives about adoption.
We had to trust that our hearts were lining up with God's as He told us we were going to adopt Isaac even before talking with his mother.
We had to trust each other that we could take on such a big task and raise this little guy.
We had to trust when family and close friends scrutinized us, doubted, and laughed at the thought of us adopting a baby at our age, much less a black baby.
We had to trust God as we brought him home with us.
We had to trust God as we watched his health dwindle.
We had to trust God as we received negative report after negative report.
We had to trust doctors who we prayed were sent to us by God.
We had to trust that God would save Isaac and keep him in His loving arms throughout such a hard journey.
We had to trust when finances were hard because of all the work that my husband missed with all of the hospital stays and ER visits.
We had to trust that God would be our strength, emotionally and physically.
We had to trust God as our sweet boy was handed to cardiac surgeons to perform a life saving operation on his 9 1/2 month old body.
We had to trust, and trust, and trust.
trust- firm belief in the reliability, truth, ability, or strength of someone or something, assurance, certainty
Let me just say, that just because we are Christians, does not mean that trusting comes easy. 
Trusting means you have to let go of control. You have to let go of your own understanding.
Oooof! That's a doozy.  That takes some doing.
 Knowing comes easy.  Knowing that God is who He says He is comes easy. 
Knowing that His Word binds up all the lies that we hear comes easy. 
Knowing that His truth binds up all the doubt that our minds experience comes easy.
Knowing is the easy part.
Trust...well, that takes work.
There were times that we were broken in the midst of it all. Really, really broken.
Times where I knew God was near, but didn't always feel Him there.
Therefore, I had to trust, knowing that His Word says He never forsakes us, even though I felt forsaken.
I had to work at it, day in and day out.
All of the things mentioned above, are now things of the past. Those things have been conquered. He redeemed every one. Each and every one. God did what He said He would do. God proved to be who He says He is. His Word stood firm in our lives, over and over again.
He proved Himself reliable and faithful and full of strength time after time.
He is trustworthy.
As we find ourselves in another hard season, I have to remind myself of things.
Things that I know to be true.
I remind myself where God has brought us from.  I remind myself that I know beyond a shadow of a doubt who my God is. I remind myself that even though I have Him, it is He who truly has me. He has me in His arms. He holds me up. I remind myself that He is my everything.
I remind myself...
He is a good God. He is an amazing Father.  He is a provider.  He is a healer.
He is exactly who He says He is.
Isaiah 48:12-13
Listen to me, Jacob, Israel, whom I have called: I am he; I am the first and the last.  My own hand laid the foundations of the earth, and my right hand spread out the heavens; when I summon them, they all stand up together.
We have experienced two of the best years of our lives, since Isaac has come into our hearts.  But, it has also been the hardest two years. It has been tough, y'all.  And as of a few days ago, I hadn't given myself permission to say that with confidence. It's been hard.  And as I mentioned above, it has been hard to trust at times.  I now know that it's okay to admit that.  It's okay to say that things were tough. Because, admitting that it is hard, reminds me how much I need Him.  It reminds me that I can't bare go a day without Him. Maybe, I was afraid to admit that things have been hard because I thought that it meant I failed, that we failed.
(To throw in a little disclaimer: Our faith has not waivered because of it.  Our faith has been tested. There's a difference, folks.)
No mountain, no valley, no gain or loss we know could keep us from Your love.
No sickness, no secret, no chain is strong enough to keep us from Your love.
 How high? How wide?
No matter where I am, healing is in Your hands
~~Christy Nockels
I thought we were done with the hard stuff. 
 Isaac had his cardiac surgery.  He was healed.
 No more ER visits.  No more hospital stays. No more worrying that he would stop breathing or choke to death. We were all sleeping again.  We were hopeful. 
We received the diagnosis of SPD and PTS a few weeks after surgery.  My first reaction was, "We can do this. We have God."  They suggested that we get counseling, that we join a support group for families with special needs kids. They said, "It's a lonely diagnosis. Not everyone can handle it. You're going to need a lot of supportive and accepting people around you."  My reaction, "We can do this.  We have God."
The thing is, just because we have God, doesn't mean everything is easy.
Having God does mean that we are never, ever alone when it is hard.
It means that when the world around us is chaotic, there's a peace that rushes into our lives that doesn't make sense to a person without God.
It means that we have His strength when the going gets tough.
It means that there is a warrior size faith that rises up within us in the midst of a life battle.
It means that God is never finished. It means He will complete the work in us.
Because, in the midst of a battle, in the midst of the hard stuff that we are facing, trusting God doesn't give me peace, knowing God gives me peace.
And knowing Him, knowing how good He is and how faithful He has shown Himself to be, makes me trust Him. 
With knowing comes trust.
I can trust Him.  I can trust Him.
And when I begin to fear when I get overwhelmed with the hard stuff again, and start struggling with trust again...I remind myself that I know who God is, and I start trusting again.
I know who He is.
I know Him.
We are currently looking for a support group for families with special needs kids. 
We are starting counseling in a week or two. 
We are hopeful.
We have God with us. He has us close to Him.

He is for us, not against us.

We hold onto His promises.

We enjoy this sweet boy of ours. We hold him close to us and we giggle as we watch him grow and flourish before our eyes.
And on the hard days, which do come,
I hear His voice ever calling me to trust and to let go of my need to understand. 
On the hard days, I remind myself who He is, and especially, who He has been to me.

I remind myself that His plans for us are good.
I remind myself that He is so very worthy of my trust.
I remind myself that I am His.
I remind myself.
2 Corinthians 12:9
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.

Wednesday, May 27, 2015

I will tarry.


Matthew 26:40
 Then he returned to his disciples and found them sleeping. “Couldn’t you men tarry with me for one hour?”
I've recently realized that I have that kid.
You know the one.
The one that screams...in all of the public places.
When you first see Isaac, you see his sweet flawless face. This boy is beautiful. Downright gorgeous! All bragging aside...he really is. I know it. Others know it. I even think he knows it.
He is beautiful.
But, underneath that little let me kiss that gorgeous face of his, is a boy that struggles daily.
Isaac was first diagnosed with SPD-Sensory Processing Disorder, when he was 11 months old.  We had just healed up from cardiac surgery when we were hit with this diagnosis.  My first reaction was, "Okay, we can do this. We have handled much worse."  And we have.  My second reaction was sadness for our little guy. "What more does he have to deal with?" I asked God.
No mother wants to see their child struggling.
 It just breaks my momma heart in a thousand pieces. It disappoints me, for him.
Sensory Processing Disorder is a condition in which the brain has trouble receiving and responding to information that comes in through the senses.
Sensory processing disorder may affect one sense, like hearing, touch, or taste. Or it may affect multiple senses. And people can be over- or under-responsive to the things they have difficulties with.
Many children with sensory processing disorder start out as fussy babies who become anxious as they grow older. These kids often don't handle change well. They may frequently throw tantrums or have meltdowns.
The exact cause of SPD has not yet been identified. There are several speculations, and there are some genetic components that could be related.  There are also environmental causes, such as Fetal Alcohol Syndrome and or circumstances that can bring the symptoms to light early on.
Isaac began banging his head on the floor when he was just 11 months old. He would get easily frustrated and angry. I thought, "What does a baby have to be so angry about?"  He would also slap himself in the face and ears. To the point of making himself cry, and then that would cause him to cry louder and hit himself even harder.  It was a vicious cycle that was hard for me to watch. 
The therapist explained it to us as a traffic jam that happens in his brain when he is trying to sort through the sensory messages sent to his brain. This causes much frustration and actual physical pain.
Isaac is considered a "seeker".  He is hyposensitive and seeks out physical touch. This is his tactile sensory.  It also effects his eating and how he relates to food and different textures.  Isaac discovers everything around him by touching it, feeling it, or squeezing it in his little hands.  He chews a lot. On just about anything.  He loves to be touched and held and caressed and hugged. He actually can't get enough of it. There are no too tight hugs for Isaac. He craves them.
Isaac also has vestibular sensory issues.   This is the movement sense which runs through the central nervous system.  It is the sense of movement centered in the inner ear. It also triggers the fight or flight instinct.  This has probably been the hardest sense for him to deal with.  Because of all of the medical issues Isaac has dealt with, he doesn't trust very easily. He is unsure if a person is going to snatch him from me at any moment and run some sort of test or stick a needle in his arm. When a person is in a situation where they feel threatened, their senses awaken their fight or flight instinct.  Isaac is continually in this place. 
Isaac also has visual sensory disorder.  This is the reduced ability to make sense of information taken in through the eyes.  It effects how visual information is interpreted or processed.  For this reason, Isaac is very aware of his surroundings. He takes in every detail of a room when we walk into it.  If he doesn't see something that looks right or safe to him, he experiences anxiety and he will begin to scream. Very loud. 
Isaac's last sensory area is proprio seption sensory.  This is the ability to sense stimuli within the body or parts of the body, sensations from joints, muscles or connective tissues that lead to body awareness.  This sensory keeps Isaac very active.  His body is constantly on the lookout for things to stimulate this sensory.  For this reason, he moves furniture.  Yes, you read that right.  The back and forth motion of  pushing, pulling and tugging actually relaxes this sensory for him. He is constantly moving chairs and pushing our coffee table or pulling something around.  When we go somewhere, anywhere, he thinks that he needs to move the furniture around.  The funny thing is, he can actually push the furniture. He is crazy strong. 
All of these sensory issues mentioned above, make for a very frustrated guy on most days.  As I mentioned, he screams. He screams when he is frustrated, scared, tired, happy, excited and just about anything else.  He screams.  He just screams.  All of the time.
We were blessed that Isaac had been in speech therapy for his oral dysphagia from just 6 months old, and other therapists had their eye on him.  The therapists in the office knew Isaac well and had a big part in his developmental process his first year of life.  Because of this, they were able to pick up on his SPD quickly.  Some parents do not get a diagnosis until their child is way into the toddler years or even of school age.  I am so thankful that he was diagnosed early.
Along with the SPD, Isaac has PTS...post traumatic stress syndrome.
Our sweet boy had such a hard first year of life.  He experienced more than I have in my 42 years on this earth, in those first 12 months.  Yes, he is a fighter.  He is strong-willed and he made it through like a champ.  But like every other champion fighter, it's hard to walk away from a long match without a few wounds, a few bruises, a few scars.
The other day my daughter had a doctor's appointment.  All was fine, until we walked to the back where the nurses were.  Isaac, sitting on my hip, clinched the back of my shirt and started to breathe in and out heavily.  I calmly said, "It's okay. You're fine. You're safe with momma."  We weren't even there for him, we were there for his sister.  She sat in the chair to be screened in. The nurse began putting the blood pressure cuff on her arm and he lost it. He began screaming, "No sissy! My sissy! Nooo!"  He was scared for her. Scared that they were going to hurt her.  He screamed, and screamed, and screamed. It sent him spiraling into an anxiety attack that lasted through her entire visit at the doctor. When we are at the doctor for him, it's even worse. His scream is even louder.
I've heard tons of babies cry in my lifetime. My own, my nieces, my nephews, my friends' babies, babies at the hospital, etc. But, I have never ever heard a scream like Isaac's.  His scream reaches octaves that I never knew existed. It is the most intense thing I have ever heard.
This boy screams.

To top it all off with a great big cherry on top...he has separation anxiety. Severely. We are his safe place. We are his people. The people that have been there from day one. We are the calm within his storm and sometimes we are the storm. But, we are his. He knows we will stay with him. I have held this boy screaming through over 40 rounds of blood work and over 20 IV sticks. I have held him down during procedure after procedure after procedure. I have held him close to me as his blood filled vomit drip down my back and against the wall. I have held his tiny limp breathless body in my arms.  I have been there through every ER visit and each hospital stay. I am the face he sees and the face he trusts. We were the faces he woke up to after heart surgery. He can depend on us being there. So when we are not, his world feels as though it's crashing down around him. And for me, although I need a break (Cuz, this momma is extremely tired), I want to be there. I want to stay.

Regardless of my circumstances, I'm going to go after our God, because He's good, and faithful and does what He promises.
~~Craig King

I pray a lot these days. I've always been a prayer, but lately, I pray continually. I think I pray in my sleep.
I pray...for God to heal Isaac. 
To heal every area in his mind, body and soul. 
 I pray that God show me how to take care of this sweet boy of ours. He knows every part of Isaac. He knit him together in his mother's tummy and He knows him inside and out. He stitched together his tiny heart and character and personality and He knows what makes Isaac tick.  
I pray that He give me patience and strength in areas where I need it. 
 I pray that God help me distinguish between what is Isaac's sensory issues and what is Isaac just being a normal 20 month old.
I pray that He show me if a tantrum/screaming meltdown needs my discipline or needs me to take him in my arms and hug him as tight as my arms will allow. 
I pray for forgiveness. Forgiveness for all the times I snarled at or placed judgment on mommas whose little ones screamed in public places or threw tantrums in the middle of the mall.
I pray for those around us to have patience and grace when it comes to Isaac, because I am now the momma who gets those judgmental looks and snarls.
I pray that people understand when we choose not to leave him, because we can't see how others could handle the screaming and the tantrums. Or how Isaac would handle us not being there to walk him through it. I pray that my heart be guarded from the strong opinions of others.

I pray for strength to leave him.
(Yes, crazy, right? I am sure I make God's head spin with my roller coaster requests.)
I pray that we find someone to trust enough to go through the rough with Isaac if it were to occur. Someone to understand him and to tarry with him, besides us.

I pray for a date night for my husband and I. An alone date. Without a toddler in tow.
(It's been over a year, y'all. An entire year!)

I pray for wisdom during this season, knowing full well... that this is just that...a season.
I pray that not a day go by without Isaac knowing how much we dearly love him and how much we are thankful for him. I pray that God drown him in His love and protection.

I pray that I never take for granted that I get to be this boy's momma. I get to be his momma. Me. Little ole' me. Out of all the mommas in the world...God chose me. He trusted me to take care of, and love, and nurture another woman's baby. He chose me. I get to be his. I get his sweet morning kisses and his absolute award winning hugs. Me. I get to be his momma. May I never lose the importance and vastness of that gift. On most days, my Isaac is a beautiful storm, but he is my beautiful storm. Mine. For that, I am thankful.
I pray and I pray and I pray.
And as He always does, in someway or another, God answers me each time with the same words...
"Will you tarry?"
tarry- to remain or stay, to abide, to wait, to linger in expectation.
I firmly believe that when God spoke to us 2 years ago about adopting Isaac, when he was still growing in his mother's womb, that God not only needed us to say yes to being his parents, but He needed us to say yes to tarrying with Him...and Isaac. He needed us to say yes to abiding in Him. No matter what our future with Isaac would hold, God needed us to remain in Him, to stay. He needed us to wait with Isaac, no matter how long it took or what that looked like.  He needed us to stay with Isaac. And in doing all of this, to linger in expectation of what God was going to do in and through his life.
We have tarried through some really rough stuff with Isaac.
When I look back on it, it doesn't look so bad anymore.  Because, we have crossed over. We are on the other side of that season. We tarried.  I remember praying and praying for physical healing to come for Isaac, and it did. It came. He is healed.
Now it's time to tarry through this season.
To pray for healing in this season.
To linger in expectation for things to come...in this season.
Good things.

God promises those good things.
God promises to be with Isaac.
 He promises to abide, to tarry, to stay with Isaac.
 He has a plan for Isaac.
A great and wonderful and world changing plan for Isaac.
 Isaac has done well. He has come very far. He has met physical and mental strides that have astounded physicians.  He has strength that I admire. He has filled my heart with so much joy, and continues to do so. He gives me the best giggles.  He has changed my life in ways that I can not count.  A life without him, just doesn't make sense anymore.
 He is funny and loving and smart and perfectly him.
He is a beautiful, beautiful boy.

That kid, is my kid.
I am his momma...and I will tarry.
For however long it takes.
I will tarry.
Habakkuk 2:3
For the vision is yet for an appointed time, but at the end it shall speak, and not lie: though it tarry, wait for it; because it will surely come, it will not tarry.

Related Posts with Thumbnails

Proverbs 17:22 "A joyful heart is good medicine"


Hope your visit was a pleasant one. Be blessed and come back soon!