Category Archives: Parenting

Climbing Out On the Crashing Waves

A little boy sits crying because he can’t be in the sack race. Tears create streaks down his dirty little cheeks as the wash away the dust from a hot summer day. “Why can’t I be in the race?” he sobs.

“Buddy, you just can’t be in the race,” his mother answers.

“But why can’t I Momma? I can do it! Just watch me! I’ll show you I can do it!”

“It’s too hard. You just can’t do it. You have to be able to jump to play that game.”

“I CAN jump! Let me show you that I can,” he pleads.

“I wish that you could but you just can’t. You have CP. Your body just won’t do that.”

Through sobs he manages to say, “I wish CP didn’t exist! I wish I hadn’t been born with CP!”

I’ve dreaded hearing those words for over 10 years. I knew that someday I’d hear them. It was inevitable. The surprising part is that they haven’t been said before. Most kids realize their limitations much younger but Sweet G is different. There is nothing average about my Sweet G. He looks at life through a different window than most of us. His spirit is strong and true. He is kind and good. Anything is possible in his eyes.

As a small baby his favorite song was Dream Big by Ryan Shupe and the Rubberband. I remember thinking how cool it was that he loved that song so much because with his disability he was going to need to be able to Dream Big. I began to think of the words as a prayer for him.

When you cry be sure to dry your eyes
‘Cause better days are sure to come
And when you smile be sure to smile wide
Don’t let them know that they have won
And when you walk, walk with pride
Don’t show the hurt inside
Because the pain will soon be gone

And when you dream, dream big
As big as the ocean blue
‘Cause when you dream it might come true
When you dream, dream big

When you laugh be sure to laugh out loud
‘Cause it will carry all your cares away
And when you see, see the beauty all around and in yourself
And it’ll help you feel okay
And when you pray, pray for strength
To help you carry on
When the troubles come your way

And when you dream, dream big
As big as the ocean blue
‘Cause when you dream it might come true
When you dream, dream big

As he got a little older his favorite song changed to The Voice of Truth by Casting Crowns. That song gave me so much hope and peace and again I prayed those words as we sang them together.

Oh what I would do to have
The kind of faith it takes to climb out of this boat I’m in
Onto the crashing waves

To step out of my comfort zone
To the realm of the unknown where Jesus is
And He’s holding out his hand

But the waves are calling out my name and they laugh at me
Reminding me of all the times I’ve tried before and failed
The waves they keep on telling me
Time and time again. ‘Boy, you’ll never win!’
“You’ll never win”

But the voice of truth tells me a different story
And the voice of truth says “Do not be afraid!”
And the voice of truth says “This is for My glory”
Out of all the voices calling out to me
I will choose to listen and believe the voice of truth

Oh what I would do to have
The kind of strength it takes to stand before a giant
With just a Sling and a stone
Surrounded by the sound of a thousand warriors
Shaking in their armor
Wishing they’d have had the strength to stand

But the giant’s calling out my name and he laughs at me
Reminding me of all the times I’ve tried before and failed
The giant keeps on telling me
Time and time again “boy, you’ll never win!
“You’ll never win”

But the stone was just the right size
To put the giant on the ground
And the waves they don’t seem so high
From on top of them looking down
I will soar with the wings of eagles
When I stop and listen to the sound of Jesus
Singing over me

I will choose to listen and believe the voice of truth

For the most part we have Dreamed Big and listened to the Voice of Truth but every now and then I have forgotten to have big dreams and sometimes I’ve listened as the giant says, “He’ll never win.” But not Sweet G, that is, not until today. Today he realized that dreams aren’t always enough and in his weakness he took his eyes off of Jesus, focused on the waves crashing all around him, and listened as the giant laughed and said, “Boy, you’ll never win.”

One thing I know is that although Sweet G had a moment of weakness tonight, tomorrow will be a different story. Tomorrow we will stop and listen to the sound of Jesus singing over G as He says, “Do not be afraid. This is for My glory,” and out of all the voices calling out we will choose to listen and believe the Voice of Truth!

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Silent Movies

Sweet G has a new favorite activity. It all started a couple of days ago when someone, who isn’t me, let him watch the beginning of an episode of the World’s Dumbest Criminals. After a short viewing and several curse words it was decided that the show might not be appropriate. I, however, did not witness this event and I was coerced into watching said episode under the guise, “Daddy watched it with me yesterday.”

After a short viewing and several curse words Mommy decided that  this show is definitely not appropriate. I told G that it makes Jesus sad when we hear things that are not nice. The language was the only offensive part and Sweet G wanted to watch it so badly that I told him he could watch it if he muted the sound. I did this thinking he would not enjoy watching anything without sound. Once again he surprised me. He watched it all afternoon.

Today he started asking if he could watch stand up comedy on his iPod if he watched it without sound. I assured G that stand up comedy is not funny without sound but I could not convince him. I figured he would try it and come to the conclusion that Mommy is right. Wrong! He watched it all afternoon “buetid” (muted in G talk). I mean really, how much fun can it be to watch a person stand on stage not hearing a word they say?

Later in the afternoon G discovered the closed captioning button on some of the videos he was watching. “Look Momma, what is my iPod doing? I like watching it like this! It makes Jesus happy when we watch stand up comedy ‘buetid’.”

“That isn’t exactly what I said, G. I said it makes him sad when we watch things that are bad. It also makes Him sad when we read the closed captioning of bad shows. Do not turn the closed captioning back on. It is wrong to hear bad things and it is wrong to read bad things.”

He can’t read well enough to read everything they were saying as fast as it appeared on the screen but you never can tell with that boy. I just wonder, what will he come up with next?

Autumn Memories

Fall is here and it brought along with it memories of years gone by. Years of running and playing with T underneath trees adorned in beautiful jewel colored dresses. Soft breezes nipping at our noses causing them to turn red and become as cold as ice. The absence of summer’s birdsongs make it almost too eerie to stay outside but we have hide and seek to keep us busy. I am content to be outside until darkness begins to close in around us because I have the king of the hill by my side.

The memory of another fall day comes into focus. I see a tow-haired boy about two years old running through a pile of leaves. His giggles rising above the sound of an approaching train. He is dressed in red overalls and a white turtle neck. His speech is filled with the sounds of y as he excitedly tells me to, “do it yike dis.” Suddenly he is transformed into a cowboy and takes off “yiding a buwll” with his arm flailing wildly as his head nods back and forth bucking to the rhythm of the imaginary bull. Slowly the sun begins to set and my heart starts to break as we have to let this day end.

Memories of hayrides with fellow homeschoolers push themselves the the center of my attention. Bowls of warm spicy chili lend us their heat as they fill our stomachs. The sounds of children laughing float down to parent’s ears as the adventurous children climb higher into the rafters of the barn over mounds of fresh bails of hay. Sweet songs and giggles dance into the night as a tractor pulls a wagon loaded with families nestled in sweet fresh hay. All too soon this day is over and reluctant children are shooed toward cars and home.

Six years ago we started hosting a Halloween party in our home. We have several special families that have come to our home year after year to celebrate fall with us. A traditional supper of chili and hot dogs is served before we all set out in my neighborhood for a fun night of trick-or-treating. There are special memories being made for adults as well as children. Each year is a little different as one by one our children grow too old to dress up and participate in the ritual of going from house to house gathering candy. This year our kids sat in the floor, sorted their candy, and began trading with each other. I sat and soaked in their energetic giggles and silly comments, knowing that there will never be another Halloween quite like this one.

The last memory comes into my mind in a rush. It is a cool fall evening after dark. Children begin to explore a haunted forest filled with witches and monsters and their screams fill the night. They play hide and seek until one by one parents arrive to retrieve them. This will be the last Halloween of their childhood. The next time Halloween will hold the same excitement will be years in the future when they take their own children trick or treating.

Life has a way of slipping by you if you’re not careful. I find that it’s the little spontaneous moments that keep returning to my mind. As I go through life I pray that I don’t forget to stop and enjoy the simple pleasures a day can bring. They are always there waiting for us to seek them out, if only we will try. Ready or not, here I come!

Runts, Nipples, and Nourishment for Babies

Tonight I started reading Charlotte’s Web to Sweet G. It is one of the classics I feel needs to be included in every child’s education. I wasn’t sure how attentive G would be since it is the longest book I have ever read to him added to the fact he really had his heart set on watching tv instead of reading anything.

As I started reading he was sulking. I read using lots of expression and try to capture the spirit of the characters by creating a voice I use for each individual in the book. I came to the line where Fern is pleading for the newborn pig’s life and staying true to my typical style I raised my voice as I read. G was caught completely by surprise because he was so intent on not enjoying the book. He jumped and looked like he was about to cry as he said, “Why did you scream, Momma?”

“I raised my voice because that is what Fern did. She is upset that her Father is going to kill the piglet and I read it like I think she would have said it.”

I now have his full attention. He begins to ask questions about the characters and is concerned and slightly amused that Fern’s 10 year old brother has a gun (air rifle). We continue the story and I get to the part when Mrs. Arable is fixing a bottle for the baby piglet. The story says she put a rubber nipple on the bottle filled with milk. As I read that part I hear little giggles erupting from beside me. G is very amused and snorts, “Huh, rubber nipples? Who ever heard of rubber nipples?”

I begin to explain about baby bottles and the reason they call the tops nipples. G is shocked by knowing where babies get there milk. I explain that some animals as well as human mommys feed there babies from their breasts. He is relieved to find out he and Trey were not breast fed as babies. When I tell him the milk he drinks comes from a cow he is a little disgusted.

We watched a video showing a cow being milked on YouTube so he could see for himself where milk comes from. Now I am unsure if he will eat his typical breakfast of cereal and milk. I personally don’t blame him if he doesn’t because frankly the whole cow thing seems kind of gross to me too! Who knows what tomorrow morning will bring and just FYI if you see Sweet G and he starts talking about nipples you know what he’s talking about and where it came from; complements of E.B. White.

Baby Got a New Pair of Legs

The day we have been anxiously awaiting arrived full of sunshine and promise. Birds sang at the windows like those in the Disney films of my childhood as I dressed for our trip to have Sweet G’s casts removed. My sweet husband took the day off in order to accompany us to the doctor’s appointment in Atlanta.

We packed up the van and started out our adventurous day that we had so perfectly planned. Stop at the bank, go to the doctor, head to the farmer’s market for a fun day of shopping, and then return home. It never ceases to amaze me how the best laid plans can so quickly fly out the window but I am learning to take each day for what it is and not what it could have been.

Our stop at the bank was the first small glitch of the day. J pulled in, parked, and walked up to the door to discover it locked. No big deal-we were there 15 minutes before they opened. The drive-thru window quickly solved the first glitch for the day.

The drive down to Atlanta went well and we arrived nearly 30 minutes before our appointment. We began questioning which building we needed to go to as we took our exit but quickly agreed on the one we needed and headed for the parking deck. First, J passed the entrance to the parking deck and we had to turn around at the patient drop off. After pulling into the parking deck J asked me where the handicapped parking was. I had been engrossed in my iPad and hadn’t been paying full attention until that point. When I looked up I said, “you have to pull around and go out the other side of the parking deck to get to the handicapped parking for this building.” When he attempted to do that we realized that we were at the wrong building. We pulled out of the lot after explaining our mistake to the attendant and drove across the street to the second building. We immediately recognized the garage and quickly parked and unloaded G’s enormous adult wheelchair and loaded the boy with the full leg casts separated by a 26″ bar into the chair putting his walker on the back in case the doctor wanted to see him walk. Into the building we head armed with my humongous camera bag.

When trying to decide which floor we needed I discovered that G’s doctor wasn’t listed on the directory and there wasn’t a pediatric orthopedic group. Houston we have a problem. We were at the correct building earlier and left it because we were sure it was the wrong place only this time we had unloaded all our junk and our Sweet G before making the discovery. We are no longer 30 minutes early but have five minutes to load everything and backtrack to the office we went to in the beginning.

Those of you without a special needs child may think anyone who can’t remember where their child’s doctor’s office is located is an incompetent idiot. Let me explain. We have been to three different specialists in the same two block area in the past three months. This was only our second time going to this particular office even though G has seen this doctor for years at the Spacticity Clinic. We were just at another new specialists office last week and his neurologist’s office a couple of months ago. All the trips start to blend together after seven years of appointments because if you’ve seen one office you’ve seen them all. We did finally make it to the right office and were only a few minutes late.

Being the perfect mommy that I am I had been preparing G for the cast removal. He hates loud noises and usually freaks out over something new and scary. The technician came in and gave G a quick explanation and started to cut. I was overjoyed when our Sweet G started laughing uncontrollably. It was the sweetest thing I’ve seen in a long time. Now right before this the doctor had come in and said that G would probably freak when the casts come off because they had been confined for so long. He tried to prepare us but there was no way I could have prepared for what came next.

G’s sweet giggles quickly turned to a look of horror as the casts were pulled away from his legs. He didn’t cry or scream out but had the most terrified look on his sweet face. It took some time and several doctors to get him to relax and keep his legs straight and still. A “sucker shot” as the doctor called it worked wonders temporarily until we could get out of the building. Having brought no meds for itching, leg spasms, or pain meant not only canceling our plan to visit the farmer’s market but also meant a long stressful ride home. We had no idea what trauma came along with taking off those casts.

We are now safe at home, had a great bath in which G was able to sit up independently in for the very first time, took our meds, had several massages with lotion, put leg immobilizers back on and cuddled for the first time in six weeks. There have been no attempts to stand and most likely won’t be for a week or so. But the casts are gone and we have two new and improved legs waiting to show us all their new tricks.

Blooming

Just when I think Sweet G’s personality has completely blossomed he takes on a whole new level of energy, imagination, and spunkiness that proves me wrong. I can’t express how much he has changed in the last year; it is truly amazing.

When he first started to school at 3 years old I would try to get him to tell me about his day while we were driving home. Most of the time he could not tell me anything or at least anything that made sense to me. He didn’t have the verbal skills necessary to tell me about his day. This was a big concern for me because T came into this world communicating. Really, T did talk early and was speaking in full sentences by 15 months old. By 18 months old he could hold his own in a debate. Seriously. There was such a huge difference and it worried me and made me feel so isolated from G’s world.

Everything has come slow for our Sweet G. He didn’t take his first steps until he was 2 years old and then it was with a walker. He has yet to take an independent step or even stand independently. I think he could stand unassisted if he weren’t such a scaredy cat. However, he is brave in so many other ways. He endures the endless stretching, being strapped into a stander, sitting happily on the sidelines watching others play sports when he would love to be out there playing. He is a fighter and a lover.

Lately he has taken to calling me Karen. No, my name isn’t Karen. He doesn’t know anyone named Karen. Except for the robotic wife of Plankton on the cartoon SpongeBob Squarepants. He sings songs to me calling me his wife, Karen. He begs me to talk to him in my “computer” voice and giggles uncontrollably when I accommodate his wishes. He pleads for me to sleep with him every night recently because “I haven’t been getting enough loving, Momma.” Yeah, we all know that one is true. That’s the problem, he is adored.

Recently we were sitting in the parking lot of one of the home improvement stores in town. We had bought him a Dr. Pepper at Wal-Mart to bribe him into sitting quietly in the car with me while J could run into the store. It isn’t that he wanted to go in the store. He didn’t want to even be in the parking lot. But the Dr. Pepper did the trick and he was sitting sipping his wonderfully delicious Dr. Pepper while I made a phone call to my sister. In the middle of my conversation with her I hear his little voice say, “Uh, oh it’s splashing, it’s splashing.” That is not what you want to hear from your child who has just started drinking a 20 ounce soft drink. I turned to see him sitting in his seat, eyes wide open in panic, trying to get a hold on the now upside down Dr. Pepper. I figure at this point there is no reason to get excited or in a hurry. So, I hang up the phone and get some paper towels that are kept in the car and get out to walk around the car to his door.

As I walk around the back of our van I notice a river of golden brown liquid flowing through the parking lot. I follow it back to its source and am mortified that it is coming from our van. “It can’t be,” I said to myself. However when I opened the door to the van I only find a small trace of the sticky liquid has actually landed inside the car. Somehow, miraculously the drink had been aimed at the exact angle necessary to shoot it directly into the crack at the bottom of the door. There were only a few drips and splashes as evidence of the mishap. I was amazed. J however, wasn’t as understanding or astonished as I was. He is concerned with the liquid that ran down into the track of the door. It will be quite interesting to figure out how to remove it. Maybe I should just give Sweet G a 20 ounce bottle of water and see what happens. Who knows maybe the mess will take care of itself.

Rain Drops and Eye Doctor Adventures

Sweet G is beginning to have a fear of doctors. I can’t say that I blame him. He has had things done to him that would be considered torture if done to a prisoner of war. Exams and procedures that are very necessary have had to be done. As an adult there are times I know I should go have certain tests done and I don’t because they are embarrassing, uncomfortable or painful. I choose to take my chances that everything is okay. My Sweet G has not had the option of choosing which tests and treatments he has received. He is at our mercy. I assure you that everything that has been done to my child is only because it is absolutely imperative for his well being. He doesn’t always understand that fact though.

One of the many things that G’s CP affects has been his eye alignment. I didn’t know that eye alignment can affect the vision of a person. It actually can cause them to go blind in the weaker eye. The brain simply shuts that eye off to avoid the confusion that the incorrect eye alignment causes it.

G started seeing an eye doctor immediately after his release from the hospital. At first it was to check the health of his eyes due to his prematurity. Premature infants are at high risk of developing retinopathy of prematurity, resulting in blindness. Those eye visits were torture for him and me. They actually pry the baby’s eyes open and place a metal object designed to keep the eye wide open in so they can check the retinas and the blood vessels of the eyes. I thank God that my brother was able to go with me to those visits and helped me through them.

Thank God Sweet G didn’t develop ROP and didn’t return to the eye doctor until he was around 18-24 months. It was pretty obvious that G’s eye alignment was off and he had a lazy eye. We once again returned to the eye doctor. We started with our family eye doctor who has an eye alignment person come to his office once a month and see children with this problem. We did the whole eye patch thing for months. That was an ordeal. An ordeal that didn’t work. Surgery was required to straighten his eyes. The first time he was two years old. They did surgery on one eye and it worked for a while. Two years ago he had surgery again. This time both eyes required surgery because the way that his eyes were turning put his eyesight in jeopardy.

A couple of years ago when they put drops in G’s eyes to dilate them he began calling them rain drops. “Are they going to do the rain drops? I don’t want rain drops.” He not only said this at the eye doctor but at every doctor we have visited since. Thursday G had an eye appointment. We said there would be no rain drops. The nurse said there would be no rain drops. The doctor, however, decided that he needed the rain drops.

The nurse comes in and asks J to give Sweet G a big hug (code words for hold him down). They wrestle the poor child and pry his little eyes open as he yells, “You lied, you lied.” After giving Daddy a few minutes to make up with G I took him to try and calm him down and keep him from calling the nurse a liar again. When I picked him up I said, “You know what we need to do?” G, without missing a beat said, “Yeah, find a new doctor.” That was funny comment number one. The second hilarious thing he said was to the doctor as he was explaining his findings and his recommendations. I must tell you that G has drooled over the glasses since he started going there at 2 years old. He wants glasses and he wants them bad. The doctor was telling us that G did have a slight prescription for glasses but that “if he were my son I wouldn’t get him glasses.” Again without hesitation G says, “But I am not your son.” He didn’t mean it in a rude way. He is very literal and the comment of the doctor merely confused him. It was however very funny. But as we all know three is the charm. So, before we left he made one last hilarious comment. This time the receptionist got to witness his humor. As we were putting the sunglasses on his little face he said, “Hey, I look just like Stevie Wonder.” At the same time he said it he got excited and his tone kicked in which caused him to sway his head and upper body back and forth repeatedly. It really was a great imitation of Stevie Wonder. Oh, what money I could make if only I caught these moments on video.