A refiner's fire

Yesterday my Aunt Mary called. She is Leah Grace's mother (my cousin who suffered and died at 2 years of age when I was 6 through 8 years old). She was my life. I cared for her so much. I used to watch her sleep. I'd visit her in Children's Hospital, I'd ask for her to be my birthday present. One May Aunt Mary had Leah Grace in the Bahama's for some alternative medicine clinic as any mother would after conventional medicine wasn't helping. Mary says that during a phone conversation she had asked me what I wanted for my birthday and I said I wanted to see Leah. Well, Leah became deathly ill and had to be rushed back to Buffalo and I did get my birthday present. I got to see Leah in the Children's Hospital. I remember thinking it might be the last time I'd ever see her and I almost think it was. My birthday was May 31st and she passed on June 8, but not before telling my Aunt Laurie, "I all done now" or something along those heart wrenching lines. I could wash the world's orphans with the tears I've cried over my baby lost to brain cancer. When my mom told me about her death, I screamed, "LIAR!!!LIAR!!!!! I HATE YOU!!!!!!!!  LIAR!!!!!!" and I ran outside and sobbed uncontrollably under a beautiful bloomed lilac tree and tried to filter out my Dad's drunken inquires and the horrid sound of Michael Jackson's "Thriller" that he was blasting in the garage. My depression intensified, not began, but intensified in the face of losing my only true love. I wanted to die. At 8 years old, I wanted to die. On the day of her funeral, they gave me the heart shaped pillow that was placed on her shouldn't-even-have-to-be-made sized coffin, but they wouldn't let me attend the funeral.  After, I still liked to go to Aunt Mary's house, but there was a palpable hollowness throughout. I'd fall on the floor in Leah's room and beg God to give her back. "JUST GIVE HER BACK!!"  I did this in secret, I didn't want to make my Aunt any sadder than she already was, but she was a very good Aunt and she knew I was despairing. She told me, and I remember it clear as day, "Don't worry Laura, when you grow up, you can have a baby girl and you can name her Leah." After the Lord kept giving me boys, I became doubtful and went on the birth control pill. I tried to schedule a tubal ligation. The doctor was out and I couldn't discuss it with him. My mom told me I shouldn't do it, that I "needed a baby girl" to which I responded in indignant disbelief and annoyance, "phhfffff! I obviously only can have boys! I don't want any more boys!" On my Grandmother's birthday, I discovered that I was pregnant, again. Seems that the pill made me more fertile.  At the first ultrasound, the doctor said I had an empty womb and that I was probably having a tubal pregnancy. They wanted to do emergency surgery, but we waited it out and chose hospital admittance and surveillance, because I was asymptomatic. I felt fine, physically, but, was devastated emotionally. I was cursing God. "Why would you do such a miracle only to kill my baby!! I HATE YOU!" The next day I checked myself out. I went back two days later for another ultrasound. There were two sacs on the screen. No one had to tell me: I KNEW I SAW MY BABIES. I went back for another ultrasound on Febuary 14th. I saw two heart beats on Valentine's Day.  I went back again and again and again and everything was perfect. I went back again and saw what I knew I'd see: my two baby girls, each with their own perfect parts and both FEMALE!!!!!! On the way to that ultrasound I was again doubting and God showed me a sign. He showed a church sign that said, "Let the light of Christ shine in your heart." Leah means "light of my heart." I knew I'd see her that day. Baby A was named Leah Marie. Marie is my middle name and my Mother's middle name. Baby B was named Zoe Elizabeth. Zoe means "full of life" which is also the meaning of Ramon's paternal grandmother's name, Vivian. Elizabeth is my Grandmother's middle name, Aunt Mary's middle name, and Ramon's maternal Grandmother's name. I hated God and in return, he gave me a double portion. "He said look how good I am!" After cursing my God and my Savior, I did not deserve to have a baby, but He is God and He is beautiful beyond description. HE GAVE ME A DOUBLE PORTION. Remember at the onset of this I told you that my Aunt Mary called yesterday? She called me to encourage me. She, who lost so much, called me "to rejoice in the Lord always."  Today, my Aunt Laurie sent me this email, which touched my spirit: Malachi 3:3 Malachi 3:3 says: 'He will sit as a refiner and purifier of silver.'        This verse puzzled some women in a Bible study and they wondered what this statement meant about the character and nature of God.   One of the women offered to find out the process of refining silver and get back to the group at their next Bible Study.   That week, the woman called a silversmith and made an appointment to watch him at work. She didn't mention anything about the reason for her interest beyond her curiosity about the process of refining Silver.    As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest as to burn away all the impurities.      The woman thought about God holding us in such a hot spot; then she thought again about the verse that says:  'He sits as a refiner and purifier of silver.'  She asked the silversmith if it was true that he had to sit there in front of the fire the whole time.       The man answered that yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. If the silver was left a moment too long in the flames, it would be destroyed. The woman was silent for a moment. Then she asked the silversmith, 'How do you know when the silver is fully refined?' He smiled at her and answered, 'Oh, that's easy -- when I see my image in it.'   If today you are feeling the heat of the fire , remember that God has his eye on you and will keep watching you until He sees His image in you.

The Body Sock

The box with the goodies arrived yesterday: some good stuff for sensory integration! See, my boy has officially been diagnosed with Sensory Processing Disorder, specifically in the area of modulation. The most simple explanation that I can use with children and adults alike is that his motor has a hard time regulating, it is either running too fast (over aroused/stimulated) or too slowly (under aroused/stimulated). Our goal is to keep him at center where learning and productive socialization can occur. Some sense experiences assault him, some sense experience call out to him as his life blood: he needs them to survive. I have to be ever vigilant to see where he is at on the continuum and try to provide the input he needs, either stimulating input to rev up his engine or calming input to shift him down a couple of gears. It's an art. It's a work in progress. He looks normal (most of the time) except when he's flipping out because his sock seam feels like gravel or he's diving onto department store floors because his body needs the sensory input (I wonder if he could wear Moon Shoes his entire childhood :)  ). For years and years I could not figure him out. I thought he was an intensely active boy. I thought he was the most stubborn creature I had ever met, besides his father or a rock. I thought he was on a path to a not so good place, despite my constant prayers, tutoring, discipline, affection, gifts, treats, ad nauseum. Nope, the child's nervous system was at fault. It had trouble regulating (thus called Sensory Modulation Disorder). His sympathetic and para sympathetic nervous systems were dis- ordered, disorganized. 
Now to explain the journey of discovery and give credit to my fellow sojourners.  My hugest heartfelt thanks to Heather Schweigert Taylor whom was brave enough to share her troubles openly on Facebook about her son and the diagnoses he was given. Up until that point, I had never heard of Sensory Processing Disorder. I had read about everything else under the sun trying to find my son within each description, but always coming out empty handed and more befuddled than before. So, thank you Heather, it is because of you, that I have found the missing pieces to my boy's puzzle. I CAN'T THANK YOU ENOUGH. It is your courage that inspires me to share my story in hopes of passing on the "lightbulb" moment of recognition. 
After becoming enlightened and hungrily reading all that I could get my hands on, I searched for an Occupational Therapist with Sensory Integration Therapy certification, for unfortunately, there are very few.  God blessed that search also. My childhood friend and birthday buddy's name appeared on the screen :Necole Sphar Hubbard. WHAT??????!!!?!!???? I jumped out of my seat in a frenzied moment of disbelief and called her. Her sweetness answered and a few days later, she spent hours listening to me and offering not only her friendship and her expertise, but also her affirmation. I wasn't crazy. My child wasn't crazy. We had a neurological condition that can be greatly helped and overcome with occupational therapy: I can handle that. So to you, Necole Sphar Hubbard, thank you for being my friend and thank you for wearing your OT hat. You were like water pouring into my dry and weary desert. 
The next week my Dad had invited up a great couple to their summer camp. It just so happened to be Necole's lovely parent's. Her mom who is an Occupational Therapist Assistant!  (Thank you to Melissa Sahr Kaus for that excellent intel!) It also just so happened that my family and I had the week free and made ourselves, with all of our quirks, available to intrude on their peaceful week at the River. Lynn Sphar, you put hand's to words and actions into reality.  Thank you for working with me, thank you for showing me what sense my son was reacting to, thank you for giving me coping and healing strategies. You are my OT mother. 
That was the path to discovery. The path and it's struggle traverse much terrain and exert much stress, but the most blessed part of this entire thing is that new neural pathways can and will be formed through OT!! Brody loves it!!! He's only had an hour and a half cumulative as of now and I can see tremendous growth. He did not meltdown when we couldn't swim (transitions can be extremely upsetting). He wants to wear jeans, button-up shirts, ties, more than one kind of sneakers (he would only wear soft, elastic waists and tshirts up until now), he is less resistive to bathing and nail trimming, he is less resistive to teeth brushing and even requested a hair cut. Previously a hair cut would turn him into a whirling dervish, red faced, screaming and bawling his eyes out. I understand now that it was the buzzing of the clippers, the sound and the vibration, the hair falling and itching and having to sit still while he was being bombarded with all of these sensations simultaneously, not to mention the fluorescent lights' glare. He used to go into sensory overload. Not anymore, praise God! Over the summer I did what I could in the way of homemade OT, but holy cow, those professionals are gifted. They have a true talent. Thank you Francine LeClerc, OT, you are my anchor in the school system. I can see you rejoice with each of Brody's accomplishments. You are an answer to prayer.


I did not plan on laying this all out this morning, but I have to think that someone will benefit. This is the best website I have found: http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html
 My point this morning was to tell you a very inappropriate, but hilarious situation. The box arrived with all of the goodies, one of which was a body sock:

Let your little one explore the space they occupy with this Lycra/Spandex body sock.
Body socks increase spacial awareness through balance and resistance, allowing children with sensory
dysfunction to more effectively use their body, leading to less falls, more coordination, and overall
increased confidence in daily activities.   

Another benefit the body sock offers is deep pressure input.  Deep pressure is often sought out by
many children on the autistic spectrum.  Incorporating this therapy into their daily sensory diet can
help to minimize self-stimulating behavior (such as rocking or mouthing) and increases a child's
ability to concentrate and organize therefore allowing the child to respond more efficiently to both
academic and social stimuli.

Body Socks provide wonderful therapy to children with Autism as well as those diagnosed
with PDD, Asperger's, Tuberous Sclerosis, ADD/ADHD, or any other disorder causing sensory
dysfunction.

The opening can be worn in the front or back and has a snap fastener.  Per child's preference the
sock can be worn over entire body or with head showing.  

He loved it and he decided he'd like to up the ante and try it out on the trampoline. My boy is athletic. This child is talented and SO strong. As he did front flips and back flips seamlessly (ha ha- get it? seams bothered him previously) he asked me if I could do them.  Before I could answer he said, "Oh, probably not, because you have those, (hands cupped, motioning to his chest) and that would hurt!" and then, like the boy he is he gave himself such a kick out of saying "BOOBS! BOOBS! YOU HAVE BOOBS!" that he wouldn't shut up until I tackled him and threatened him with my Croc. Even in humorous situations sometimes he can't stop laughing. He's so funny and fun. He's my boy and he was fearfully and wonderfully made. He was made perfectly, just as God designed and planned. This situation is to glorify God, I know that beyond a doubt. I also know that God is a God of order, not disorder, for the Bible tells me so. 

 

Do I have anything on my face?

Funny things happen at the most mundane times like walking to the door of a friend's birthday party. Brody lays this one one me:
 
"Mom do I have anything on my face?" (Since when does he even have the concept of being dirty?)

"No."

"Does my breath smell?" (What in the world??) I smell his angel breath just to be sure, after all this is a first!

"No! But I do notice something on your face."

"What? What is it?"

"Handsomeness all over it."

"UHHHH!" rubbing it off, "I don't want to be handsome!"  

"Toolate for that sonny boy." I quietly thought to myself as I watch my most puzzling fellow stretch my heart strings over the threshold of another woman's home. Too late for that my dear, dear, son <3 Too late for that.

Forgive your parents

"You storm out the door and leave for school without doing what you're told. You come home and eat all my food, watch all my tv, use all my electricity and you treat me like crap? Do you think God approves of that?"
"No," replies Caleb, 9.
"What's God's special rule about parent's?"
"Um...forgive them?"

No need to schedule that hair appointment, I'm pulling it out presently.

Mamma screwed up again!

I was willing to be self sacrificial and surprise the kids with family swim time at the high school. Once I got into the pool most of my blubber would be covered, so I did it. To get a ticket to go swimming they had to help me put away the one hundred and one bins of clean laundry (yes, bins, 13 gallon to be exact). After laundry, we suited up and off we went. Well, like aforementioned title, I screwed, or my faulty processor acted inefficiently again! (that sounds so much better- now I'm not at fault at all!)
Upon great excitement and trepidation for some- the 40 pound overweight one to be exact- we open the door to find the pool full......of......a water aerobics class. SHOOT!!! Those people putting the wrong date on the calender again! Some of the crew took the disappointment in stride and some melted down with great voracity. To ease the suffering someone's suggestion of McDonald's was answered with a yes (EWW!) and off we went. Well, just so happens that it was $.49 cheesburger day and the place was busy, but that is besides the point, we were there to get Happy Meals and I did not attempt another change in plans for my sanity begged me "NOOO!!"  
When settled I asked them if they wanted ketchup and with a resounding yes, I told the boys to stay with the girls and keep them safe while I went to get the ketchup to which my Brody responded "You're going home?" LOOOOOOOOOOOOOOLLLLLL! "No, honey, I'm going over to the counter to get ketchup, stay with your sisters." My literal one. 
I won't bore you with the account of the rest of the "meal" or every little sensory issues that is huge to 3/5 of my children. Well, okay, I will: the heat, it was too hot. The lights: too bright. The siblings: too close. They all managed to "be the boss of their bodies" and we had a nice "meal" until THE CAR. One said girl had to pee and refused to buckle up. Had to pee SO badly, but pretended to not be able to buckle the old familiar seat belt. I find that a lot. Feigned helplessness. I think I read that once they are into sensory overload they become helpless to in their overloaded way, ask for help, but honestly, it's infuriating at times. Any who, when we got home, Daddy asked Caleb, 9, how swimming went and he said the best thing a kid could say to make his mommy laugh while she was cleaning the toilet before she wrote this: "The pool was filled with old people doing tricks!" growled and sighed my boy :)

My kid's, my heart

I've always had temper tantrums of my own big enough to rival one of the children's when it came to trying to get the "Christmas card photo." Why? It isn't because one child isn't looking or one child isn't smiling, it is because one or more of the children decide that it would be an excellent time to misbehave and show their defiant little spirits. The day before yesterday, it was the oldest child who took it upon himself to make cattle like moans, groans and Quasimodo faces. I told him to stop with threats of the PS2 becoming more of a gas than a solid, but he continued to bray and be as stubborn as the ass he was impersonating. I promptly sent him home before I prodded him too unlovingly and before my fantasy of kicking him square in the buttocks became realized. Yes, I am a mean, mean Mamma. Yesterday was a better day. The promise (read bribe) of Dunkin Donuts after church yielded better results with personalities shining through each crooked, bored or exaggerated smile. What an intense blessing to behold: my children. An amazing gift.....one that I never fathomed, nor dared to dream of. Even more miraculous is the transformation of my Spirit through God's Spirit gifting me with un-human patience and long suffering, because frankly, folks, I AM NOT THE PATIENT KIND and my children are not TYPICAL by a LONG, LONG shot. 

Nurse Ratchet At Your Service

Dressing up for Halloween came a bit late. I donned my nurse's uniform last night...nope not the sexy one, the Nurse Ratchet is at your service one. Thank the Lord I had meds to put into action. My little Bear was like a balloon losing air and gasping for breath. Albuterol was minimally effective. We would have been at the ER if I hadn't insisted on the Dr. giving me an emergency supply of prednisone. The 40 mg. prescribed dosage did nothing after a half an hour. I forced another 20 into him and begged, "God please have mercy upon this little one!!!" In that instant his Daddy walked through the door from a football party and went into action: Not the frantic action of a half crazed I have one foot out the door already mother, but the peaceful, strong, healing presence of a Father in his role as Protector and Provider and even, Healer. I watched in rapt amazement as Brody's father massaged his head and applied acupressure and spoke peace over my 3rd born son's frantic search for revival: air to his lungs and calmness to his racing heart. The holiness that flowed from Jesus through my husband and into my boy was......I can't produce a word for it. I saw a Father's heart for his Son. Thank you Lord God for your Son! Thank you Lord God for our son. Thank you that through your stripes we are healed: sometimes instantly, sometimes through providential medicine, sometimes only in eternity. For those who believe we can stand on the promise of eternity. Lord Jesus, you rock my world. Literally solidifying my existence and purpose in you. Love, Laura 
Oh, I just have to add this little gem of preciousness: I awoke to 3 angels above me- the twins and Brody. Brody was dressed like a cowboy, undoubtedly following Temple Grandin's example. I let him view some of that most excellent movie the day before. Watch it and learn. It is awesome. He was whispering to his sisters, "Don't wake Mom up! She's sleeping! She was up all night taking care of me! If she didn't I could have died!" I'd do it every night for you, my most sensitive and stubborn one. I love you child and I will go to war for you. You will not be lost. You are an over-comer in Christ Jesus.


Now, to prep the house for a showing on 6 hours sleep!