Two brothers and a doctor

Cade hangs with his brother in the waiting room

 

You can count on one hand the amount of times I take my kids out of school for reasons other than illness.  Today it may appear I had no good reason to take Cade out of school.

His older brother, Anker, had a doctor appointment with the Pediatric Cardiologist.  Anker doesn’t often do well at doctor appointments.  He equates doctors with poking, prodding, and the need to fight for his life.  Growing anxiety is the way he prepares for the doctor.  The last time we visited Dr. Van Gundy, Anker was too anxious to sit on the doctor’s table.  So, the 6-foot something doctor bent his knees as he sat on the bare floor and invited Anker to lay down beside him.  Anker responded to this gentle giant, and lay on the floor, allowing the doctor to examine his heart.

I was touched by a doctor who understood our son’s increasing anxiety. Try as he may, Anker could not utilize the resources to successfully express his fear.  Dr. Van Gundy communicated compassion to our son, while offering us a great sense of relief. After all, it is no easy task taking a growing boy to intrusive doctor appointments…we have the bruises and bite marks to prove it.

 

There are two things about Cade which prompted me to take him along to this appointment.  Cade adores his older brother. In the fifteen years of his young life, he has loved his special needs brother with a depth of understanding and strength which blows any observant onlooker away. He gently guides Anker to try the things the O.T. or speech therapist, or optometrist request Anker to do. He models the task, and playfully and patiently invites Anker to follow his lead. Down Syndrome individuals respond well to peer role models, and with gratitude, we have a wonderful role model sharing life beside his brother.  Anker felt relief today, with his brother beside him.

We have experienced many doctors in our special needs journey: doctors who have little sense of compassion, those who lack understanding of our child’s specific needs, and those who are absolutely outstanding.  These outstanding doctors are the ones who speak with compassion as they offer respect and care to our child.  They are acutely aware of the specific special physical needs of our child, and are the very doctors we remain faithful to. Since Cade desires to be a doctor himself, we find great value in exposing him to the characteristics of these outstanding doctors. I knew Cade would offer support to his brother, while gaining an education himself.

Cade sat closely as the nurse examined his brother.  Anker began to shout with anxiety, and Cade talked gently to his brother.  Anker calmed down.  Dr. Van Gundy entered the room and carried on a conversation with Anker,  “You are growing whiskers, aren’t you, Anker?” He took time to visit with our boy. He took time to ask questions, and he gently examined Anker while sitting beside him, this time on the examination table.

Heart problems are prevalent in individuals with Down Syndrome.  Many are born with heart defects and require heart surgery. This is one statistic we have not had to bear.  But, Anker does have a murmur, which we must continue to watch closely. Dr. Van Gundy referred us to a Pulmonary Specialist to rule out sleep apnea issues, and blood tests to check for Leukemia, Diabetes, and thyroid–all medical issues which have a higher occurrence rate in individuals with Down Syndrome.

So, we take the yearly tests, and we continue on with life. We stop for a special milkshake topped with whipped cream and a cherry, then head back to school.  Anker asks to stay home with me–feeling a little too stressed to return to his afternoon classes.  Cade returns to his texts and tests; having gained a little more knowledge from experiencing a life lesson on character with his brother and an extra-ordinary doctor.

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Dog’s best friend

Unconditional love is reciprocated, mutual odors are endured, and a depth of communication is shared between our boy and his dog. A deep bond between the two has developed, and this dog has the world’s best friend.

A.J. was one year old when we bought a puppy for our growing family. I was hugely pregnant with our second child, and it wasn’t the greatest time for me to learn how to train a dog. But, I read how dogs help build communication skills in children with developmental disabilities, so there was no time to waist!

Our Golden Retriever, Riley, quickly became a part of the family. Even though I grew up with the love and companionship of family pets, I did not yet understand the depth to which a dog would enrich our son’s life. He and A.J. attached to one another and put up with each others antics like no one else could.

Riley helped A.J. develop physically and socially. The various physical movements required to pet the dog, feed him, brush him, and walk him; all helped provide the trunk movement and daily exercise we needed to fit into A.J.’s developmental routine. When raising a child with special needs, it is crucial to fit specific movement and tactile experiences into their daily lives. These physical interactions with a loving dog came naturally.

A.J. had a bad habit of pulling Riley’s tail. Due to the mild manner of our Golden Retriever, Riley never tried to bite him when his tail was yanked. In fact, we still laugh at the day we saw Riley back his rear-end up to A.J. as if to offer his boy his tail. There they stood in our backyard, boy holding dog’s tail, both with a goofy look of contentment on their faces.

Our dear Riley became ridden with tumors at the age of 12. We were concerned about the toll Riley’s death would take upon A.J., so we began looking for a new puppy to train alongside Riley. The family took a day trip to a woman’s farm where she bred Golden Retrievers. Parked in her driveway, we took a moment to pray together, asking Jesus to help us find the right puppy for our family.

Several adorable puppies played around our feet, and each of us had our eye on a different one to bring home. I told the woman our concern about A.J.’s reaction to the impending death of his reliable companion. She stepped inside her home and came out with her favorite puppy in her arms.

“Take this one, I was going to keep him for myself.” she said.

We trusted her and brought home her favorite puppy. We named him, “Petra”, which means “The Rock”. He is named after our all-time favorite Christian rock band.

A.J. and his brothers fell in love with Petra. Riley welcomed the puppy and nurtured him for a couple of months before his death. A.J. emotionally handled his passing better than we expected. How loving our Heavenly Father is, to take care of these details and concerns in our lives.

“Petra, you are home! I came back!”, AJ walks off the school bus and routinely heads directly to greet his companion.

“Look Petra, your boy is home,” I add.

They greet each other with sloppy kisses and a long hug. A.J.’s speech and language skills increase with his interactions with Petra.

“You are okay. Go outside boy. You go potty.”

“Okay, come on in now. You are a good boy.”

Recently A.J. told me a story about his Auntie’s beloved dogs playing with their friend Petra. He told me, “Maize and Jax and Petra are chasing outside.”

“What are they chasing?” I ask.

“He, Maize and Jax and Petra are chasing a squirrel.”

It has taken our son 15 years to answer a “What” or “Why” question with a full sentence. His story about chasing a squirrel required putting several words together with a little creativity and recall. I was thrilled. The doggie adventures and interactions are constantly helping develop his communication skills.

Petra keeps pace with A.J.’s needs as they walk. Together they walk, run, and rest in the shade. It can take quite a while for these two to make it around the block!

A.J. and Petra often have a chat under the kitchen desk. AJ shares special pictures of his Aunt’s dogs with Petra. Petra obliges and enjoys the pictures with his boy.

Always available, willing to listen, patient when the words take a while to form a complete thought; Petra is an unconditional friend. And his boy is the best friend a dog could ever dream of having.

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The birth of my boy: No ordinary event

Anker Josiah-wearing the gown I asked Jesus to fill

This is Part 4 of our story:  When life and belief collide.  Please scroll down to Part 1.

  Miracles are wrought by the Spirit of God, in them is seen the Finger of God–Unger

Our baby boy was born on this day, June 4.  He had a 9 out of 10 on his Apgar!  There were no blue lips as the doctor supposed, there was no need for an emergency team.  There was no cyst on the base of his neck.  He was breathing, crying, moving and beautiful.  He has Trisomy 21, and for this we are thankful as well!

“Miracles are out of the ordinary course of events.  They produce astonishment as being outside the ordinary operations of cause and effect”–Unger

We named him Anker Josiah.  Anker-the name of three godly men who came before him.  Josiah-the name chosen before his diagnosis of Fetal Hydrops.  Josiah means Jehovah has healed!

Alleluia!!!

Our baby was still taken to Intensive Care.   I understand it is not a common sight to see a new father cheering joyfully as he follows his newborn son to ICU, but they saw it this day!

They began tests on our boy right away.  They checked his heart, and his lungs.  We asked them to check the fluid in and around his kidneys which the ultrasound revealed only a few days before.  All tests came back normal!  He stayed in ICU for 2 long bittersweet weeks.

As I sat in the rocking chair among all of the incubated babies, the nurse handed me my gem.  She said his ears are deformed and he cannot hear.  I held him closely and rocked, singing,

“Great is Thy Faithfulness, Great is Thy Faithfulness!”

I sang this song throughout the months of carrying my babe.  He knew my voice.

“Morning by morning new mercies I see”

His little head began turning toward me as he fought to open his baby blue eyes.  We locked eyes for the first time as I embraced his tiny living body and continued praising Jesus,

“All we have needed Thy hand has provided.  Great is Thy Faithfulness,

Lord unto me!”

I knew our baby could hear me.  I had no doubt.

I had to leave my newborn son and go home without him as the ICU continued to monitor him.  I barely slept a wink, waiting for the first waking hour they would allow me to visit.  I used a breast pump in order to bring in that precious gold called colostrum.

As I walked in the ICU holding my bottle of gold, I reached out to hand it to one of the nurses standing beside my boy’s bed.  That little bottle of gold was filled with my Mama- love.  It was the little bit I could do to nurture my hospitalized son.   The nurse mockingly asked me, “What’s this?” as she pulled it from my hand.

I realized I had interrupted the two nurses as they were talking in a hushed manner.  The second nurse abruptly said, “We heard you had an amnio”.  I confirmed the fact.  Her face shown the judgment of my choice.  “Then, why didn’t you-?”, she asked me harshly.  What she was asking was, “If you knew he had Down’s Syndrome, why didn’t you abort?” I was taken back for a moment as I gathered my surprise and my thoughts.

“Do you have children?”  I asked them both.  They both said yes.  “What would happen if your child was hit by a car and became brain-damaged?  Would you wish he never lived?  What if your child is the slowest kid in the class, or grows up to be an alcoholic?  Will you be ashamed and stop loving him?”  They stood silent.

I was dumbfounded by two intelligent women making a value statement about a child’s life. I was even more concerned that these were the women caring for my child when I could not take him home.  Everything within me wanted to rip the monitors off our boy and run with him.  I knew then, baby A.J.’s enemies were ignorance and narrow minds.  We would have to do something about that….

Our quiet little home was eagerly awaiting A.J.’s arrival.  No longer would the carpets be clean,  the sink remain empty or the evenings be silent.  Our home became filled with joy and baby barf and gratitude.

There’s a lot more to share with you about parenting our precious boy, but I’ll leave the rest for later.  Today, we celebrate 18 years of life.  God has gifted us a beautiful boy with special needs, and his two younger brothers who adore and enjoy him.

AJ loves to sing, write, read Disney stories, play with and care for his dog.  He enjoys swimming, Special Olympics Track, basketball and bowling.  He loves to go to school and he loves to go to church.

He loves to drink smoothies and fruit is his favorite snack.  He sings at the top of his lungs, asks his Daddy to read him a Bible story each night, and helps out with the dishes.

He tells knock-knock jokes and knows the directions to almost every store and restaurant in town.  He thinks almost everything he wants costs $2. He knows every word to the Veggie Tale songs.

He is hug-able, lovable, stubborn, sometimes grumpy, and very messy when he plays.

He is Anker Josiah, chosen and dearly loved.

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