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 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 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 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.

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