Inspirational Stories

I Am The Child

 

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of — I see that as well. I am aware of much — whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world’s standards — great strides in development that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable — I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I’ve dropped my fork again. I am dependant on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don’t learn easily, if you judge me by the world’s measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

Author Unknown

In the Game

 

 

 

 

 

 

 

 

 

High-school sports. It’s about the biggest thing that happens in our town of Verden, population six hundred. And sports are important in our family. Both of our sons were high-school athletes. So I shouldn’t have been surprised when Lauren announced she was going out for the girls’ basketball team. But I was. At just five feet, one inch tall, our daughter’s lack of height wasn’t my worry.

                She Has Down syndrome.

                My wife and I never told Lauren that she was different. We treated her like our other children. Same school. Same church camp. Same chores around the house. We didn’t want her to feel disabled or different because she had Down syndrome.

                “I’m gonna play basketball Daddy” Lauren ran to meet me when I came on from work. She flew into my arms and lingered long in my embrace, her brown curls tickling my chin. Unlike some sixteen-year-olds, Lauren was outwardly affectionate.

                “That’s nice, honey,” I replied automatically, and patted her shoulder. I figured she meant outside-on the driveway.

                Walking into the kitchen, I kissed my wife Laura on the cheek. She looked up from slicing tomatoes and studied me hard. We’d been married more than twenty years, so I usually could tell what she was thinking, but her furrowed brow indicated I’d missed something. Laura spoke slowly, her tine steady. “What Lauren’s trying to tell you is that she’s joining the girls’ high-school basketball team.”

                Just as my wife’s words sunk in, I heard Lauren behind me.

                “I’m gonna be a Lady Tiger,” she whooped, skipping into the room and throwing her arms in the air. She raced out of the kitchen to one of her favourite activities, watching cartoons on television.

                Everything that could happen flashed through my mind. Lauren’s reflexes were slow. What if she got injured during practice or trying to keep up with the other players? What if the other girls on the team failed to accept her? What if an insensitive spectator made fun of her? Or what if Lauren’s feelings got hurt because she spent most of her time on the bench?

                I was eager to discuss Lauren’s announcement with my wife that evening, but with four kids popping in and out, the time was never right. What should we do? Parenting seldom had clear-cut answers, and bringing up a child with a disability was an additional challenge.

                Hours later, with the kids in bed, I shanghaied Laura at the bathroom sink. “Maybe she won’t make the team,” I offered.

                “Everybody makes the team, Johnny,” she whispered, patting her face with a towel. “It’s Verden. There are only eleven sophomore girls, and not all of them want to play.”

                The next afternoon, I parked in from tog the school gymnasium. What would I say to the coach? I jingled change in my pocket as I walked through the double doors.

                Ponytails flopped as teenaged girls clad in T-shirts and shorts ran across the hardwood floor. Coach Forsythe stood on the other side of the gym.

                “Hey, Johnny,” Coach called. Before I could speak, he continued, “We’re glad Lauren came out for the team.”

                Whew. “Well, you know we don’t expect you to play her in a game, just include her when you can.”

                I was thankful for the coach’s sportsmanlike attitude, but worry rebounded in my stomach. I moved up into the bleachers. Lauren stood alone at the other end of the court, shooting free throws. Short legs and a stout torso hampered her running and jumping ability. And where was her competitive drive? No other girl on the court grinned like Lauren did during a layup. After every shot, Lauren approvingly hollered, “Woo hoo!” She didn’t seem to care if she made the basket or not.

                Mid-November, the season’s first basketball game arrived. I settled into a seat on the second row with the rest of my family.

                “Nervous?” Laura whispered as she quieted my fingers from drumming beside her on the bench.

                Just then, a low roar erupted. Cheerleaders sprinted on the court, rooting, jumping and flipping. Their excitement wafted up into the stands. I stood along with the crows and clapped. Moments later, a train of girls wearing white uniforms with burgundy and gold accents chugged out of the locker room. Last in line was Lauren. Following her teammates, she grabbed a practice ball. Serious game faces seemed determined to conquer this new season as the Lady Tigers passed balls from player to player. But before Lauren took her warm-up shot, she searched the strands. Spotting is, she tucked the ball under her arm and waved broadly.

                The game got off to a good start, but soon Verden was behind. Even after a rally in the second half, I knew the Lady Tigers were destined to lose. O gazed at Lauren’s profile from her seat on the bench. She intently followed the movement on the court and reacted to every play. By far the most animated on the team, she slapped her knee when the opponents scored. Her arms flailed in the air each time Verden Shot. I even recognized her voice shout “No way!” when a referee made a call against a teammate. Even though she wasn’t playing, she looked as if she were having the time of her life.

                As the father of a child with special needs, I’d experience many emotions. But now, I felt admiration for my daughter. Some players might sulk or react negatively to sitting on the sidelines, but not Lauren. Plus, her team was getting beat, yet she still enjoyed the action.

Just less than two minutes were left, and Verden was down by seventeen points. Coach called a time-out. I bent over to ask if the kids wanted anything from the concessions. The announcer’s voice boomed over the public address system. “Number thirty-three, Lauren Wray, in for the Lady Tigers.”

                I quickly looked to the last seat on the bench. Lauren wasn’t there. She stood next to Coach Forsythe at the scorer’s table. With a slap on her back, he sent Lauren running onto the court. My heart quadrupled its beat, and I watched wide-eyed. Lauren was in the game.

                My wife tugged at my sleeve. “Get up Johnny.”

                As i stood, I noticed what was happening. All across the stands, fans were on their feet clapping for Lauren. Our Lauren!

                Play resumed. Lauren kept pace with the others fairly well. The visitors scored again. With less than a minute left, the Lady Tigers were near their goal. I saw the point guard shout and flash a signal to her teammates. Then something I consider sacred happened on the hardwood. They passed Lauren the ball. She caught it and dribbled towards the goal. Lauren went in for a layup. Amazingly, the opposing team did not black her. She shot. She scored!

                Applause exploded, and the thunderous sounds reverberated off the metal walls of the building. “Laur-en, Laur-en, Laur-en,” chanted the cheerleaders.

                Instead of reacting to the noisy crowd, my daughter kept her head in the game. The final buzzer sounded. Verden lost by seventeen points.

                A few minutes later, Lauren joined us in the stands.

                “Did you see? I scored!” Her brown eyes shone as she wiped a bead of sweat from her forehead. “I made a basket!”

                For sixteen years, I’d tried hard to shield Lauren and prevent her from feeling like she was different. But watching Lauren in the game, I saw that she really was different- not physically or emotionally, but spiritually. I, nor probably anyone else in that gymnasium, had ever seen a player with so much heart.

                My daughter wasn’t like everyone else. I wrapped my arms around her and hugged her tight. Lauren was different. And I was glad.

                                Reverend Johnny Wray, As told to Stephanie Welcher Thompson

The Miracle of Jay-Jay

"He doesn't look like the other boys," Grandpa said as he viewed the blanketed bundle I held in my arms. He was right. James Ryan, whom we called Jay-Jay, with his skinny little legs, almost bald head, and tiny, slanted eyes, bore little resemblance to my other chubby babies with their full heads of hair. But I knew the comment went far beyond looks. Grandpa couldn't accept the fact that Jay-Jay had Down syndrome and had mental retardation.

On subsequent visits, Pa-Pa, the name the other children used for their grandpa, ignored Jay-Jay. He picked him up once at a family reunion when it seemed to be expected for a family picture. Other than that, he never touched him, and looked upon him with something between pity and displeasure.

Then, one day, a miracle began. We were once again at a family reunion, and Jay-Jay, being the outgoing little boy he was at three years old, walked over to his grandpa and crawled onto his lap. Pa-Pa was a little shocked, but what could he do in front of all these people? This was his grandson. How could they understand that he hardly knew Jay-Jay?

Jay-Jay took his grandpa's glasses out of his shirt pocket and placed them on his own face, upside-down, precariously perched on his short, pudgy nose. He looked at Pa-Pa and giggled, making Pa-Pa laugh, too. Soon, they were walking around the room, Jay-Jay leading Pa-Pa, a little smile on the older one's face.

Their next encounter came months later when Pa-Pa decided to visit. Jay-Jay played the clown, making his grandpa laugh, and pick him up and throw him into the air.

Pa-Pa turned to my husband and said, "Why, he's just like any other kid."

We had tried to tell him, but Pa-Pa's preconceived ideas and fears of the disabled had kept him out of his grandson's life. But Jay-Jay, being an effervescent little boy, would not let him remain in darkness. With his love and actions, he showed Pa-Pa and others that they were missing out on some of God's greatest blessings by not loving and caring for him.

After that day, a strong bond began to form. Pa-Pa found that Jay-Jay loved balloons and would have one waiting for him each time we came to visit--visits he now welcomed. Then he discovered that Jay-Jay was not only sweet, but ornery, and he loved pillow fights. So each visit would end up with pillows flying across the room. I never figured out which of the two enjoyed it most. Soon Pa-Pa began to telephone--supposedly to talk to my husband, who was now glowing in the new relationship between his father and son--but always insisting on speaking to his youngest grandson.

Although Jay-Jay has a severe speech articulation disorder, he can understand most of what is said to him. Yet he finds it difficult to form the words he wants to say, making communication difficult. Nevertheless, Pa-Pa always wanted to speak to him by phone, and Jay-Jay would laugh and talk in words that neither his dad nor I understood. Pa-Pa swore he understood every word.

The phone chats became a weekly ritual. Every Saturday morning, Jay-Jay knew it was the day to talk to Pa-Pa. Since it was long distance, they took turns calling. One week, Pa-Pa would call. The next week, all excited, Jay-Jay would make the call and talk until we made him hang up.

Through the years, Jay, as he is called today, and Pa-Pa continued those weekly phone calls, along with letters, cards, fishing trips, and frequent trips to Wal-Mart. They became "best buddies."

When Jay was nineteen, his beloved Pa-Pa died unexpectedly. One of the hardest days of my life was watching Jay stand at his Pa-Pa's graveside as he was presented the American flag that draped the casket. But one of the things I cherish most is knowing that Jay's unconditional love built a bridge to his grandfather's heart and changed both of their worlds forever.

Story Author Louise Tucker Jones

Life is Christmas

Our son Ted, who is non-verbal, was diagnosed with PDD-NOS at the age of 4, in the summer. It was a diagnosis made harder by my husband's job. He is out of town for months at a time, and wasn't there for the diagnosis. I didn't know what it meant, we were in a new city, and I didn't have any close friends yet.

He was home for the holidays though, and now I had a walking partner for what we call our son's "Epic Walks." That kid LOVES to take walks. Anywhere - for hours on end!  So, now we could go as a family, enjoy the stroll and the snowy weather.

It was getting darker and all of the houses had Christmas lights on and decorations; everything was so festive! When my son was around 2, he had once called snow "Missmas" so I was hoping to hear some sort of acknowledgement of the changing of the seasons from him that year—any sign that this was special. That on one day, at least, there would be joy, family, presents, and lights—that all this pretty stuff on our walk pointed to one thing.

But nothing. All he knew, as far as we could tell, was that it was colder, there was this cool white stuff everywhere, and Dad was home that month. The lights were just some kind of bonus. On Christmas Day, he'd just be getting gifts for some random, unknown reason—If he even cared about them, if he could even open them. Maybe he would like the box. Playing wasn't a huge thing of his, really. I shared my concerns with my husband. I was very upset about not being able to share the holiday cheer with Ted. "But Danny," I cried, face wet in the falling snow, "Ted isn't going to know it is Christmas!"

And then Ted ran ahead, laughing, and found a particularly wonderful spot to jump in and roll around in, making a tiny snowman of himself. "Ann Marie, EVERY DAY is Christmas for Ted!" Danny said.

And then I realized for all the pity I felt for Ted, for how I mourned the life that would not be, I hadn't noticed the amazing life that was. Ted has a life that is different, and filled with wonder, joy, fun, family, and love. For Ted, every single day of his life IS Christmas.

Ann Marie





 

Something to think about...

 

At a fundraising dinner for a school that serves children with learning disabilities, the father of one of the students delivered a speech that would never be forgotten by all who attended.  After extolling the school and its dedicated staff, he offered a question:

 

'When not interfered with by outside influences, everything nature does is done with perfection. Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is the natural order of things in my son?'

The audience was stilled by the query.

The father continued. 'I believe that when a child like Shay, who was mentally and physically disabled comes into the world, an opportunity to realize true human nature presents itself, and it comes in the way other people treat that child.'

Then he told the following story:

Shay and I had walked past a park where some boys Shay knew were playing baseball. Shay asked, 'Do you think they'll let me play?' I knew that most of the boys would not want someone like Shay on their team, but as a father I also understood that if my son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps.

I approached one of the boys on the field and asked (not expecting much) if Shay could play. The boy looked around for guidance and said, 'We're losing by six runs and the game is in the eighth inning. I guess he can be on our team and we'll try to put him in to bat in the ninth inning.'

Shay struggled over to the team's bench and, with a broad smile, put on a team shirt. I watched with a small tear in my eye and warmth in my heart. The boys saw my joy at my son being accepted.

In the bottom of the eighth inning, Shay's team scored a few runs but was still behind by three.

In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the game and on the field, grinning from ear to ear as I waved to him from the stands.

In the bottom of the ninth inning, Shay's team scored again.

Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat.

At this juncture, do they let Shay bat and give away their chance to win the game?

Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible because Shay didn't even know how to hold the bat properly, much less connect with the ball.

However, as Shay stepped up to the plate, the pitcher, recognizing that the other team was putting winning aside for this moment in Shay's life, moved in a few steps to lob the ball in softly so Shay could at least make contact.

The first pitch came and Shay swung clumsily and missed.

The pitcher again took a few steps forward to toss the ball softly towards Shay.

As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher.

The game would now be over.

The pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman.

Shay would have been out and that would have been the end of the game.

Instead, the pitcher threw the ball right over the first baseman's head, out of reach of all team mates.

Everyone from the stands and both teams started yelling, 'Shay, run to first!
Run to first!'

Never in his life had Shay ever run that far, but he made it to first base.

He scampered down the baseline, wide-eyed and startled.

Everyone yelled, 'Run to second, run to second!'

Catching his breath, Shay awkwardly ran towards second, gleaming and struggling to make it to the base.

B y the time Shay rounded towards second base, the right fielder had the ball, the smallest guy on their team who now had his first chance to be the hero for his team.

He could have thrown the ball to the second-baseman for the tag, but he understood the pitcher's intentions so he, too, intentionally threw the ball high and far over the third-baseman's head.

Shay ran toward third base deliriously as the runners ahead of him circled the bases toward home.

All were screaming, 'Shay, Shay, Shay, all the Way Shay'

Shay reached third base because the opposing shortstop ran to help him by turning him in the direction of third base, and shouted, 'Run to third!

Shay, run to third!'

As Shay rounded third, the boys from both teams, and the spectators, were on their feet screaming, 'Shay, run home! Run home!'

Shay ran to home, stepped on the plate, and was cheered as the hero who hit the grand slam and won the game for his team

'That day', said the father softly with tears now rolling down his face, 'the boys from both teams helped bring a piece of true love and humanity into this world'.

Shay didn't make it to another summer. He died that winter, having never forgotten being the hero and making me so happy and coming home and seeing his Mother tearfully embrace her little hero of the day!

We all have thousands of opportunities every single day to help realize the 'natural order of things.'

So many seemingly trivial interactions between two people present us with a choice:  Do we pass along a little spark of love and humanity or do we pass up those opportunities and leave the world a little bit colder in the process?  

A wise man once said every society is judged by how it treats it's least fortunate amongst them.

 

 

 

 

 

 

 

 

 

T'keyah To The Moon and Back

 

Kerry, a homeschooling mum of six, tells the story of her fifth child, T'keyah, born with Dandy Walker syndrome.

Kerry and husband Robert faced the greatest challenge of their lives. At the 20-week ultrasound of their fifth baby, they were told that this tiny life had a condition called Dandy Walker Syndrome. If she survived, she might never walk, talk, eat or be able to function normally.

T'keyah (meaning “strong one”) is now a delightful three year old. Although she has severe health issues, she is a happy, engaging member of the family. She melts her parents? hearts by telling them,  “I lub you to the moon and back”.

Kerry and Robert have six children, with all being homeschooled. They have found that another of their children has a Dandy Walker variant (a less severe form), and an inoperable brain tumor.

In between homeschooling, frequent trips to specialists in Sydney and caring for her children - Kerry finds time to assist an elderly neighbor with her housework, and holds a craft afternoon with the folk at a local nursing home one day each week. Kerry is one very busy mum and active community member. We were pregnant with our fifth baby and everything was going great. We had a scan done at 13 weeks to check the Nuchal Translucency and it came back a bit high - so I got sent for blood work. But the results were fine. So we just sat back to enjoy the pregnancy.

Our 18-week ultrasound came up, but a couple of our kids were sick, so we had to change the date. At the 20-week ultrasound, we had our two youngest with us - Kye, nearly five, and Charlize, eight months.

The sonographer had been scanning for a bit and chatting to us. Then she went quiet and said she had to get someone to check something. I knew straight away that something was wrong and started crying. Robert told me to wait and not get too upset, but I just knew.

"Please tell me what’s wrong!? I pleaded as she returned with another sonographer.  
She repeated that they just needed to do some checking. After a few minutes they asked Robert to take the kids out as they had to do an internal ultrasound.

When they called Robert back in, they informed us that they had trouble finding part of the baby’s brain. We had to come back in an hour to see the obstetrician. Walking into the obstetrician’s office, I was so scared. He told us that the baby had Dandy Walker Syndrome. We had no idea what that was.

He said that he couldn't tell us if our baby was going to live or not. He’d already made an appointment for us to see a fetal specialist in Sydney for that that Thursday. We were told we could have an amniocentesis - and if we wanted to terminate then it was still just within the time frame. I cried for hours. My baby was starting to move and I didn't want to lose her. We decided not to go through with the amino - we were going to try to make it as far as we could for our little girl.

The doctors in Sydney were great. They did offer termination, but due to the fact that there were such a range of degrees as to how the DWS (Dandy Walker Syndrome) could affect my baby, I couldn't live with the 'what ifs'.

At 26 weeks they found heart problems and asked again about having an amino done. But for me, the risk of going into premature labor was too great, and my baby had enough battles to face without me adding to them. The doctors were worried about it being a chromosome problem - namely Trisomy 13 and 18 - and they weren't good outcomes.

She was battling on, and although she had heart and brain problems, she was so active at times that I would forget that she was so sick. From the 26-week mark, there were weekly trips to Sydney for ultrasounds by the obstetrician and the heart specialist. At 33 weeks we went for our normal weekly scan, when they found out she had developed hydrocephalus. Up until that point she had been small for dates, but her head had been the normal size. In the matter of a week her head grew from the size of a 30-weeker to the size of a full term baby.

They sent us to see the neurosurgeon to get his idea on when they should deliver her. The NICU doctors came and saw us and they were worried that she wouldn't cope if she was not born soon.

The neurosurgeon sent me for a MRI so he could get an idea of what was happening. Thankfully, he said she was coping fine and he would check her when she was born. We went back at 35 weeks and again her head had grown. They decided to give her one more week - and then we would meet our precious little girl.

At 36 weeks I had a caesarean section. All the doctors had told us to expect her to be rushed off for surgery straight away. But we got to have a quick hold before they whisked her away to the NICU. When they were taking me to my room they took me into the NICU first for another look at her. I wasn't able to hold her then, but she didn't need heart surgery straight away. Her heart wasn’t as bad as it appeared in the scans.

It was the hardest thing for me not to have my baby next to me in the room. I cried all night. The orderly took me back down about 9.30pm so I could see her. She was sleeping, and up to that point hadn't needed any oxygen or anything.

She was much stronger than they thought she would be. The next morning I was up and showered and waiting to go see her. But they wouldn't let me go until I had been checked, and put into a wheelchair.

When we got down to her she was still sleeping but they said she had a good night and was managing on her own.

It became a daily routine to measure her head circumference. At birth it had been 40.5cms. No one had prepared us for what her head might look or feel like. The first time I picked her up I panicked at the feel of her head. I thought I would hurt her.

We saw the neurosurgeon and he was happy for her to wait for surgery. After two weeks in Sydney, we were transferred home. We spent nearly a week in the special care nursery at our local hospital, just to get her breastfeeding. Due to the hydrocephalus she was a very sleepy baby, and after a few sucks she would fall asleep.

So she was mainly nasal tube fed. When she had gone a full 24 hours on the breast we were allowed home. It was so great to come home, but we worried that her condition might worsen.

We were home for Christmas. Two weeks later we had to go for a checkup with the neurosurgeon.  We packed a lunch for everyone and went to Sydney. Her head circumference had increased and after he checked it he rang and booked theatre and sent us to emergency to be admitted.
 
So at five weeks of age, tiny T'keyah went in for her first brain surgery. She had to have a shunt put in to drain the fluid off her brain.  A subsequent MRI showed a few other problems they hadn't yet picked up on. As well as the DWS, she has Agnesis of the Corpus Callosum (ACC) and Cerebellar Vermis hypoplasia (CVH).
 
T'keyah has proved all the experts wrong. We were told if she lived past birth that she would be a complete vegetable and never walk, talk or eat. Today, she is a lovable three year old. She is walking at times, was talking, and can eat (although mostly has to be fed and can’t handle lumps a lot of the time.)

In the first six months of her life she went through five brain surgeries. She was so tiny but the most placid beautiful baby and she quickly had everyone wrapped around her little finger.

T'keyah had more surgery when she was over one, and had a hernia fixed when she was two. She has a lot of eye problems and will be facing eye surgery in the future but everything was going fine until May last year.

T'keyah developed a blocked shunt and we nearly lost her. The block wasn't obvious and the doctors didn't want to go in and operate until they were sure what was wrong. She got rushed to Sydney on the Wednesday night and by Friday her condition had worsened to the point that she had a massive seizure. Her heartbeat and oxygen levels dropped.  Robert and I were terrified of losing her.

Since then, she has lost the ability to talk, and the ability to walk without hurting herself.
Her eating is back to the stage of about a 10 month old.

When Tkeyah was one, the doctors had decided to check our son Kye, then six years old, as he was experiencing developmental problems. They found that he has similar problems with his brain. They also discovered that he has a brain tumor. This was devastating news. His tumor is inoperable so we just hope every day that it doesn't grow.
 
Life today is pretty much “normal” in our terms. There are days each week where Tkeyah cannot do anything - she even has trouble swallowing. At these times we just have to monitor her and be ready to rush her down to Sydney if she becomes worse. We have weekly appointments for therapies and just pretty much try to keep her healthy.

Both Tkeyah and our son Kye have regular meltdowns. Tkeyah gets hysterical and Kye just cries for no reason. But it’s just our life and we wouldn’t change either of them for anything. We are so proud of all our children.

We started homeschooling our older children because of Kye - he was really struggling at school but didn’t qualify for any assistance.  We are registered with the Board of Studies and they have found that our homeschooled children are doing better than their grade level.

They get together with other homeschoolers every week for sport - and different activities are organized throughout the year as a group. The eldest two have done a forensics course and loved it – it’s not something they would have the chance to do at school!

Life is certainly difficult at times, but family is everything to us. And our hearts melt when little Tkeyah climbs up onto our laps and tells us “I lub you to the moon and back”.

Kerry

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