Sometimes You Just Gotta Plow the Corn

I have to admit that I've been in a rut lately. Not a huge, you need to be put on medication kind of rut but, a rut nonetheless. I think that it might be due to the extremely cold weather here in Texas this year. We've had several snow days and a couple of days with almost a foot of snow. Wait a minute! We live in Fort Worth, it doesn't snow like this in Fort Worth. Well, below is a picture to prove it.




Maybe I've been in a funk because I sprained my back or maybe because we have all just been a little under-the-weather in our house or maybe it is because I'm turning 39 tomorrow. I don't truly know the root cause or causes. I can just tell you that I've been a little melancholy for the past few weeks.

Every time that I've thought about sitting down to write a blog post, I've simply found an excuse not to do it...the dishes need to be done, the clothes need to be washed, I need to take a shower, I need to make a list of all the sh*t that I need to do, etc. So as I proceed to do all the other things in my life and ignore my blog, I've been thinking of a phrase that a relatively new friend said a couple of weeks ago...'sometimes you just gotta plow the corn.' She is obviously from Nebraska and that kind of phrase is part of her normal language. As for me, I had to think about it a little bit. Heck, I'm from Arkansas and we don't plant corn -- we marry our cousins but, don't plow corn (sorry if I just offended anyone from Arkansas with this comment).

So, I've been thinking about it and the entire concept of planting a field for harvest. It made me think of our little man. While I sometimes struggle with all the appointments, school trips, and therapy here at home, I must realize that I'm preparing his field for harvest. His harvest is listening and speaking. So, I plant my corn...my corn for Thomas.

Thomas has put on his planting boots, is digging and placing his seeds, and is ready for his field to grow (I'm calling these crazy green boots his planting boots).



Now all I have to do is suck it up, put on my overalls and my planting boots, and get to back to work on his corn field because...sometimes you just gotta plow the corn.

Give Him Some Credit

So, I wonder sometimes if I'm too tough on Thomas. Do I not give him enough credit for the things that he's doing, choosing only to focus on what he isn't doing? Always comparing him to the mythical normal child or to superhero CI child that goes for initial stimulation, only to start talking in multiple word utterances within months. Needless to say, Thomas has taught me two things in the past couple of days.

First, he taught me that he can say more than I give him credit for. As a part of our agreement to participate in a Med-El study of newly activated babies/toddlers, I had to complete a receptive and expressive diary listing all the words, approximations, and learning to listen sounds that Thomas knows and/or says. I won't take you through all the statistics, because it would probably bore anyone that isn't his parent. However I will say that, I was shocked by the results. No, shocked doesn't do it justice...I was you've got to be freakin' kidding me, pick my jaw up off the floor, get me a doctor to restart my heart...kind of shocked. He knows and says WAY more than I was giving him credit for. While he isn't a "normal" child nor is he a CI superhero, he is making some really great progress. We wouldn't be where we are today without his A-FREAKIN'-MAZING cert AVT, Ms. Becky, his wonderful teachers at the Hearing School of the Southwest and his 7-year old sister, Sidney. Can I get a "yahoo" or "maa-woo" (as Thomas says it) for these women -- they are the rock stars in Thomas' life.

The second thing that I learned from Thomas in the past couple of days is that he's not a mama's boy anymore. Gone are the days of tearful good-byes, well on Thomas' part at least. On Thursday of last week, I walked Thomas to his class at the Hearing School. Previously, this activity meant that Thomas would be clutching my leg and whining for me not to leave him. However, this time was different. He walked into the classroom and sat down with the other children. He took the play dough out, waved to me, blew me kisses and said, "bye-bye." So, I started to tear up a little and stopped to talk with his teacher by the door. Thomas heard me talking and got up out of his chair. He walked over to the door, waved to me again and proceeded to shut it on my face. That little stinker!

He showed me again that he's much more comfortable with leaving his mama when we went for our first swimming lesson. Okay, I have got to stop hear and give a BIG THANK YOU to Lucas' mom, Jennifer, for posting about their swimming lessons -- Lucas has LVAS just like Thomas and swimming lessons can help with balance challenges and for Thomas swimming will help to build his core muscles. Jennifer lit a fire under my rear and I signed Thomas up for lessons, too.

So, I take Thomas to lessons, get him changed into his swim suit, and we wait for Ms. Katherine to come and get us. As you can see from the picture below, Thomas really wanted to open the door to the pool and jump right in...alas, we talked a lot about waiting our turn...my talking to him really didn't help -- he wanted in that swimming pool!



When Ms. Katherine came to get Thomas, he waved good-bye to me (no words this time because I'm not brave enough yet to let him swim with his CI on) and off he went with a complete and total stranger. Yes, I cried as I watched him get into the water and not give me a second thought. He swam for 30 minutes, jumping in the water, going under while holding Ms. Katherine's hands, learning to kick, etc. He had a complete blast as you can see from the pictures below.




Ms. Katherine was awesome. She is a certified swim instructor for special needs children and has taught many deaf and HoH kids and adults to swim. She will use the tied noodle under his arms for a portion of each lesson until Thomas understands what to do without visual cues. Thanks to Alyssa for finding this teacher for me!

So, Thomas is definitely teaching me some lessons...I'm not the only teacher in this relationship. He is doing well in life, not the mythical normal child, no. And I wonder, who really wants the normal child anyway? I'm happy with what I've got...a child that is deaf in one ear, HoH in the other, who has sensory integration issues, a child that is completely crazy, a child that is amazing to me and one that I should give more credit.

The Dawn of a New Day

Since the dawn of time, or at least it feels that way, Thomas has hated to do flashcards with me. I tried everything to get him to "play" flashcards, body part cards, transportation cards, clothing cards, any type of cards -- you name it and I've tried it. He refused to play them with me.

Well, Ms. Sarah at school turned me on to a new approach. The approach is using the Chipper Chat. This toy is essentially a magnetic wand and magnetic chips. We take our flashcard decks out. I take about 5-6 cards at a time, usually all within a specific theme. I hold up the card and ask Thomas what is on the card. If it is something that he already knows, like a train, he says the word. Then I say the word back to him and describe the picture in more detail. If he doesn't know the word, I say the learning to listen sound or the word, and then he says it back to me. I then hand him a chip and he places the chip on the card. We go through the cards and then I give Thomas the magnetic wand. I then ask him to pick out each object by using the wand and allow him to pick up the chip. This gives me the opportunity to test his receptive language and gives him the opportunity to again express the word.

Here are a few quick videos of Thomas playing this with his sister, Sidney, and me:

Car


Puh-Puh, Boat


Whee-Whee, Slide


As I view these videos, I catch myself not doing all the things that Ms. Becky, Thomas' prize-winning AVT at Cooks, has told me to do during our training sessions each Friday. However, I can't kick myself too much because Thomas is making progress. I'm not a trained cert AVT...I'm a mom learning as best I can.

So as a close this video-packed post, I admit that I know that we will continue to take steps forward and backward. However, it is seeing videos like this of our little man that make me hopeful. They make me hopeful that continued tweaks to his CI map will make him speak with a more opened-mouth (thank you, Ms. Bari!). They make me hopeful that the lack clarity in Thomas' hearing world may be slowly disappearing and thus giving way to the bright light of talking. Whatever happens, I'm ready for the dawn of a new day with my little man!

The Kindness of Strangers

Our family is enjoying a long weekend together filled with lots of playtime for the kids. We went to breakfast at Sidney's favorite place, Ol' South Pancake House, this morning. As we sat at a booth by the front door, Thomas was standing up on the seat and greeting virtually all the people with a wave and his version of "Hi -- ii-ee."

Yes, we got the typical stares and looks of pity. However, one older woman stopped by to talk with Thomas. She leaned over the half wall and began to tell us about her grandson who also has a CI. This is how the short conversation went:

She said, "Oh, my grandson has one of those."

I said, "Awesome, do you mean a cochlear implant or hearing aid."

She said, "An implant. He was born deaf and is now older."

I said, "That's great."

She said, "These kids just have to work harder than everyone else."

I said, "You're right. They do work harder & Thomas is working very hard, too."

She said, "Don't worry, he'll be just fine (referring to Thomas)."

I then smiled & she was on her way to have a huge southern breakfast. I thought to myself...you know, Thomas is going to be just fine. Yes, he will work harder than other kids to listen and speak, but he'll make it. I then smiled inwardly and felt a sense of calm all due to the kindness of this one particular stranger.

The Gift of Subtle Touches

I've written before that my wonderful friend, Tammy, encouraged me to start writing about Thomas' journey some months ago. I wondered to myself, "What could I possible write about that could make a difference in the lives of people that are helping their child or children manage hearing loss?" Well, I don't believe that I've answered the question yet. However, I wonder sometimes if writing about Thomas might mean writing about all the struggles of those around our family, those people that are introduced to our world, and touch it in sometimes subtle, yet miraculous ways. These people bring joy to our lives, perspective, and yes, help our little family get further down our path while we try our best to navigate this crazy, crazy journey.

So, here is my post for today. God has given our family the gift of spiritual friends through our church. You see, my husband and I took a marriage class at our church to give our marriage a tune-up, to help us get our marriage back onto the path that God intended from the very beginning and to bring us closer together...more connected which, in turn, helps us with Thomas and his sister, Sidney.

The people in our marriage class ultimately became our small group at church. We had our first small group discussing this past Sunday. At the end of discussion, we all had the opportunity to bring forth prayer requests for the week. We had families that needed prayer for upcoming surgeries, job uncertainties, cancer treatments, and medical diagnosis. These amazing individuals made me realize something...I never prayed for a healing for Thomas. I never, even once, asked God to restore Thomas' hearing. I have prayed for a lot as our family walked down this path with Thomas. I have prayed that as parents we would have the strength, compassion, conviction, patience and love to help Thomas become all that God wanted him to be in life. I have prayed for a 'clear and direct' path to cochlear implant surgery and activation. I have prayed for God to nourish Thomas during all the difficult times we have had with his eating issues. Not once, not once, have I prayed for healing. This week, I have asked myself several times, "Kat, why have you never prayed for healing?"

When Thomas' hearing loss was initially detected and later diagnosed, I was angry...freakin' angry, beyond words. I remember hating to hear the words, "God doesn't give you more than you can handle." These words were said during our small group. For the first time, I felt a sense of calm when I heard these words, because they are true. I realize that God has given Sean and me the gift of Thomas. I realized that this unexpected gift is the reason that I never prayed for healing.

So, let me thank the following people that touched my life during this very short meeting...they didn't know that they were touching my life so deeply, but they did.

Jennifer M
Greg M
Jennifer G
Liz K

I have come to realize that subtle touches from new friends are a gift from God. Thank you!

Christmas Vacation

So, we took a two week hiatus from focused therapy here at the house for the holidays. We let Thomas relax, play and enjoy Christmas. On the 23rd, we left warm Texas and ventured to see my family for Christmas. The cold hit Arkansas with a vengeance. So, our family had its first white Christmas together.

My father is the eldest of eight children, a very large Catholic family. Ever since I was very little, Christmas Eve has always held a special place in my heart because this is the night that everyone comes together to celebrate. This year was no exception. My sister and I kind of forced my mom into hosting this year's celebration...boy was it fun for everyone. My aunt, Debbie, and a family friend, Frank, brought a keyboard and guitar to play Christmas carols. You can see Thomas in the picture below dancing to the music.



Thomas got lots of fun toys to use during therapy and several "fun only" toys, too. On Christmas day, we went to my grandmother's house on my mom's side of the family for more holiday fun. Thomas quickly found my grandfather's electric organ and started playing.



One of my biggest worries of Thomas getting a CI was that he wouldn't be able to enjoy music. As you can see by these pictures, he loves music; he gravitates to it.

When we returned home, the installers showed up to put together the wooden play set that Sean, his parents and I got for the kids this year. We got this because, when Thomas had his sensory integration evaluation, the therapist said that swings and climbing equipment could help with building his core muscles and help with his stability challenges. It has also given me the opportunity to actively use language to explain what Thomas is doing as well as reinforce language he already expresses. As you can see, Thomas loves the play set very much.



After all this craziness and taking some time off from therapy, Thomas did some great things the other day to show me that he was still learning during our AVT vacation. He is actively saying:

Open door and open box
More
Cracker
Want that
Turn on choo, choo

He has also begun to try to sing the "Clean Up Song" and is getting the words "thank you" correct occasionally. After our ENT removed a HUGE amount of wax from both ears earlier this week, he was more "chatty" (as Ms. Becky so appropriately put it) and is speaking with a more opened-mouth. He is working on the concept of choosing between toys and activities. Of course, he wants to do anything that incorporates trucks, cars, trains, balls and anything that he sees as destructive -- such the boy!

I think that my very favorite memory from Christmas vacation was this...when we arrived in Arkansas my family came out of the house to welcome us literally with open arms. We all hugged each other and my family looked down at Thomas. He walked up and gave almost everyone a hug (preferring to hug the woman over hugging the men). Funny how one can become so obsessed with wanting our HoH and deaf children to listen and speak. When a movement of love can actually render one completely speechless.

Thank you so much to our family and friends for helping us celebrate the birth of our Father. Thanks to Thomas' audiologist, cert AVT, doctors and teachers for making 2009 a year to remember, truly monumental. 2010 will begin with more audiology appointments, more verbal therapy sessions, more school days and the addition of occupational therapy. After a great Christmas vacation, Thomas and I are ready for the challenge and prepared for lots of time running from appointment to appointment.

The Christmas Guest

With all the craziness of the holiday season and a double ear infection, I want to take a quiet moment and say something to my little man...

You are learning to listen and speak. I know that you will learn everything in your own time and way. Your mom is so amazingly proud of you and all the work that you have done and will continue to do.

I hope to one day say this poem to you and have you understand its meaning not only in your ears, but in your heart. Merry Christmas, Thomas. I love you so very much!

The Story of the Christmas Guest
by Helen Steiner Rice

It happened one day at December's end
Some neighbors called on an old-time friend.

And they found his shop so meager and mean,
Made gay with a thousand boughs of green.

And old Conrad was sitting with face ashine.
When he suddenly stopped as he stitched the twine.

And he said "My friends at dawn today,
When the cock was crowing the night away,

The Lord appeared in a dream to me.
And He said, 'I'm coming your guest to be"

So I've been busy with feet astir,
Strewing my shop with branches of fir.

The table is spread and the kettle is shined,
And over the rafters the holly is twined.

And now I'll wait for my Lord to appear;
And listen closely so I will hear,

His steps as he nears my humble place.
And I'll open the door and I'll look on his face."

Then his friends went home and left Conrad alone,
For this was the happiest day he had known.

For long since his family had passed away.
And Conrad had spent many a sad Christmas Day.

But he knew with the Lord as his Christmas guest,
This Christmas would be the dearest and best.

So he listened with only joy in his heart,
And with every sound he would rise with a start,

And looked for the Lord to be at his door.
Like the vision that he had had a few hours before.

So he ran to the window after hearing a sound,
But all he could see on the snow covered ground

Was a shabby beggar whose shoes were torn.
And all his clothes were ragged and worn.

But old Conrad was touched and he went to the door
And he said, "Your feet must be cold and sore.

I have some shoes in my shop for you.
And I have a coat to keep you warmer, too."

So with grateful heart the man went away.
But Conrad notice the time of day

And he wondered what made the dear Lord so late,
And how much longer he'd have to wait.

Then he heard another knock, and he ran to the door,
But it was only a stranger once more.

A bent old lady with a shawl of black,
And a bundle of kindling piled on her back.

But she asked only for a place to rest,
a place that was reserved, for Conrad's great guest.

But her voice seemed to plead, "Don't send me away,
Let me rest for awhile this Christmas Day."

So Conrad brewed her a steaming cup
And told her to sit at the table and sup.

After she had left, he was filled with dismay
For he saw that the hours were slipping away

The Lord had not come as He said He would
And Conrad felt sure he had misunderstood.

When out of the stillness he heard a cry.
"Please help, me and tell me - Where am I?"

So again he opened his friendly door.
And stood disappointed as twice before.

It was a child who had wandered away,
And was lost from her family on Christmas Day.

Again Conrad's heart was heavy and sad,
But he knew he could make this little girl glad.

So he called her in and he wiped her tears,
And he quieted all her childish fears.

Then he led her back to her home once more.
Then as he entered his own darkened door,

He knew that the Lord was not coming today,
For the hours of Christmas, had all passed away.

So he went to his room, and he knelt down to pray.
He said, "Lord, why did you delay?

What kept You from coming to call on me?
I wanted so much Your face to see."

Then softly, in the silence, a voice he heard.
"Lift up your head - I have kept My word.

Three times my shadow crossed your floor.
Three times I came to your lowly door.

I was the beggar with bruised cold feet;
I was the woman you gave something to eat;
I was the child on the homeless street.

Three times I knocked, three times I came in,
And each time I found the warmth of a friend.

Of all the gifts, love is the best.
I was honored to be your Christmas guest.