Kayla I. Shown-Dean's Blog, page 65

Answers for Alex: Update 12/26/14

Right now, I have two contracted pieces to write which are due in less than a week. That’s something I’ve waited for, for three years or more. Yet, the only thing I think about is Alex and his story. Someone…somewhere has got to give a voice to him, and with the help of his mother, I hope to do just that.

 

This is how I remember Alex.

I know, I know; he’s a lot bigger than this now. Yet most of the time I spent with him was when he was about this age. Alex was curious about everything, and this often got him into trouble. He was also very loving and creative. Our favorite game to play with him was house. My friend, Jessica, and I would hide in the playhouse, and he would come knock on the door to “dom ober for a beesit”[come over for a visit]. As I mentioned in a previous post, he had difficultly pronouncing words, like most preschoolers do. He couldn’t say my name very well, but he had a an aunt, Makayla, so he often called me Ma-taya.

I got to visit Alex today. He’s changed so much from the little boy I knew. He’s tall and handsome. He dreams of being a wrestler someday, and I honestly believe he has a shot because this young man is a fighter. Alex is down to 70lbs now, and he continues to shake. He has seizures hourly, and still this family has no diagnosis–no answers. But he’s still fighting–even though his opponent is nameless, Alex is still fighting. He’s finally out of PICU, and in a room. While he still has fluid in his lungs, his oxygen levels are improving. Melissa says that his doctors are hoping to get him into pulmonary soon and eventually into rehab. Still, she understands and explains that this will be a long, difficult, and slow road to recovery.

Today was day 42. Alex still hasn’t eaten anything since November 13, and he had to spend Christmas away from his family this year as the floor on which he is doesn’t allow visitors under the age of 16. His younger sister, Amelia, has had a difficult time with this as she tries to understand why she didn’t get her Christmas wish of having her big brother home.

I can’t imagine what this family is going through, to feel so helpless to only rely on faith and hope. I’m no doctor; I can’t diagnose or treat Alex. But I can pray, and I can write. I will do all I can to raise awareness about this kind, funny, loveable young man and to help his family during his recovery.

Please click here to donate to Answers for Alex.

 

I Celebrate the Day

For two or three years now, my dad and I have sang Relient K’s song, “I Celebrate the Day” at church for Christmas. This song packs the entire meaning of Christmas into simple and beautiful verse. I simply cannot stress how much I love this song.

However, every year when we sing it I can’t help but feel that not everyone  fully understands it. Whether the message is convoluted by poetics or the meaning just flies over their heads, I’m not sure, but the message of this song is just too powerful to dismiss or fail to understand. Therefore, as my Christmas gift to you, I have deconstructed the lyrics and re-wrote them with the meaning I see in them. I hope that they touch your heart as much as they have mine, and we never truly forget the reason for this season.

Merry Christmas!

I Celebrate the Day

With my Christmas wish, I missed the point–the whole point that I’m supposed to be sharing with others.

I’m speechless, but I want to tell You [God] how much You’ve touched my life.

Unfortunately, I’m in the same place as I was last year, and it’s because of me–because I didn’t pursue You–that we aren’t as close, not even half as close, as we should be.

When You were only a baby and You first opened Your eyes, did You know that You would save me? With the first breath You took on this earth, did You know that You would change the world?

This Christmas I’ll remember all the Christmases before and how they made me feel. I’ll compare these memories and feelings to the realization that You cam from Heaven to meet me where I am, just as I am.

It’s amazing to look back and think that this tiny baby would one day save me. You came in the hopes that through Your death, I might truly live. I’m astonished in looking back with the knowledge that this baby would one day save me.

When You were only a baby and You first opened Your eyes, did You know that You would save me? With the first breath You took on this earth, did You know that You would change the world?

I celebrate the day that You chose to be born in this world only to die, so I could one day pray for You to save my life.

 

 

And Strands of Hope.

Merry Christmas!!!

This is my all-time favorite Christmas song, and it was made for Mariah Carey!

Homemade Christmas Ornaments

My little crafty fellow and I came across this Christmas ornament craft on Pinterest. Now, with him only being three, most of the work did fall on my shoulders; however, it was a fun craft, and it will be a treasured memento of my little boy. After all his hands won’t stay this small forever.

We began crafting the ornament by tracing my little one’s hand on a blank sheet of paper. I highly advise using pencil to trace a three-year-old’s hand: they tend to squirm, so if you use marker, odds are your child will be wearing it. I just traced my son’s hand with pencil and then went over it with a black magic marker. Then I transferred it (by tracing) to a sheet of white craft felt.

You can find this craft felt at Wal-Mart or any other craft store. While it still allows for some movement, it is more stiff than cutting a yard or two of felt from your local fabric store, and at 24 cents a sheet, it’s cheaper as well.

The next step is to gather your supplies. For this craft, you will need: red, white, and peach craft felt (if you desire the American traditional Santa Clause); Fabric Fusion glue; buttons, and scissors. Next, use the scissors to cut the tiny hands out of the felt.

Hands all cut out, supplies on the side

After all the tiny hands are cut out, cut out circles (for a fatter Clause) or ovals (for a thinner one) to make Santa’s face.

Then, fold over a small section at the top of the hand and make a small oval-shaped cut; this hole will be Santa’s mouth, allowing for Santa to have both a beard and a mustache. However, you should not discard the cut out piece. This will be re-purposed as we fashion it into a ball for the end of Santa’s stocking cap.

At this point, you should match up all your Santa faces and glue on the beards. While the glue from the beards is drying, begin cutting the stocking caps out of the red felt.

Now, while many of you may think that stocking caps should be triangle-shaped, you actually should cut the red felt into more of a kite-shape. This way you have the extra fabric on which to apply the glue, and since you will have to glue the hat behind Santa’s head, it will make the ornament thicker and a bit less flimsy.

The back of the ornament should look something like the photograph below.

For the next step, you should return to your scrap pile and cut out the fur brim for the hat and round off the oval piece that was cut from the beard. These pieces should be attached to the stocking cap as seen in the photo.

Santa with rim on hat, cut from scraps

The last step is to apply the eyes. Use your Fabric Fusion glue and apply a small dot of glue to the back of the button; then, place it on the ornament.

Fabric Fusion used to glue all pieces and the eyes

This is what your finalized product should look like. If you are worried about the durability of the glue, you can always go back over the ornament with a needle and thread. If you choose to do this, I recommend going over the beard and mustache area, going over the rim of the hat with some white thread, and reenforcing the buttons. Afterwards, all you have to do is attach an ornament hook by making a small hole in the back of the ornament, and hang it on the tree.

This is a wonderful and easy project for your Christmas tree. Not only will it capture your child’s hand-print forever, but they are something you can get out and reuse every Christmas, and you never have to worry about little hands breaking them or getting cut on them. Plus, they make great Christmas gifts.

Free for the Holidays!

I’m so excited to be able to offer you, my readers, a copy of my first book. For a limited time you can download an ebook copy of Muted for free! Muted will be available through Barnes and Noble, iBooks, kobo, and Scribd for free until January 22–my birthday! Click any of the links above or click on the photo below to get your copy instantly. Also, if you download a free ebook before Christmas, you may purchase a signed paperback copy at a discounted price of $7.00 (plus shipping and handling). That’s 30% off my store‘s price and 56.7% off Amazon’s price.

Thank you for your readership! Merry Christmas!

 

Update on Alex 12/18/2014

I spoke with Alex’s mother, Melissa yesterday. She and the kids have been preparing to spend Christmas in Arkansas Children’s Hospital. They’ve even decorated with their very own Christmas tree, complete with Alex’s elf, Ruby.

Alex was scheduled to enter the Step Down Unit and begin Pulmonary and Physical Rehabilitation which would move him down slowly from PICU to ICU and eventually to a regular hospital room. However, after they met with the pulmonary doctor, they were told that Alex’s lungs were too weak for him to begin the Step Down Program. The doctor also ordered another x-ray, and depending upon the results, they should start working with Alex to begin strengthening his lungs.

Either way, Alex’s doctors all agree that getting this young man back on his feet will be a prolonged process.

With no end in sight, I can’t imagine the strain on this family. Please contribute to Answers for Alex to help this family in their time of need.

To donate to Answers for Alex, click here.

With Strings of Blue…

Answers for Alex

I grew up in an in-home daycare. When I was 12 years old, my mom took in a new little boy named Alex.

Alex was an adorable, sweet, and slightly hyper-active three-year old with charming brown eyes, puffy cheeks, and the inability to pronounce my name–which was absolutely adorable. Yet only two years later, he drastically changed.

Alex began having seizures and was soon diagnosed with complex partial seizures. While his doctors were able to keep him stabilized for many years, this fall his arm began shaking uncontrollably. After several visits to his doctor and readjusting his meds, Alex’s mother, Melissa, decided it was time to take him to Arkansas Children’s Hospital, where he was immediately admitted in the PICU, and he’s been there ever since.

Alex has been in the PICU for 32 days (as of 12-16-2014), and still, his doctors do not know what is wrong with him.

Since November 13, 2014, Alex hasn’t had anything to eat or drink; he’s been purely on a ketogenic diet, which is often used in weight loss diets and to help control episodes of epilepsy. As a result, he’s lost a lot of weight. He currently weighs in at 96lbs, which we all know is not a healthy weight for an eighteen-year-old boy.

 

In only 32 days, Alex has gone from an uncontrollable shaking in his arm to not being able to stand up, sit up, or even lift his own head. He barely even has the strength to raise his arms. The twitching that brought them to Children’s has moved to his right side now, and his left side is almost paralyzed, with little to no movement.

At this point, Alex’s doctors are testing for Batten Disease and pushing for genome sequencing testing. While Melissa hasn’t yet decided how she feels about the testing, which I can imagine is quite expensive, she refuses to believe that it could be Batten Disease, which she describes as “something purely evil.” I, myself, am not familiar with Batten Disease, but a quick Google search turns up a horrifying description: “a rare, fatal autosomal recessive neurodegenerative disorder that begins in childhood.”

While I can’t imagine what Alex has been through in the last month, I can, as a mother, somewhat relate to Melissa. The emotional and physical toll alone must be exhausting, and the feeling of helplessness as she watches her eighteen-year-old son lie nearly motionless in a bed would be taxing to say the least. However, Melissa is a single mom and has another child as well, and with the extent of their stay at Children’s, I can only imagine the financial burden she will bear…alone.

This is where we need to step in. We need to find Answers for Alex. We need to relieve some of the stress placed upon his mother, so she can look at his doctors and say what all mothers should be able to say, “Do whatever it takes, and never give up.”

Alex is only 18; he loves wrestling and even got to meet John Cena this year. He’s a young man with this entire life ahead of him. He wants to go to college and to be a professional wrestler, and I’m sure, just as Cena’s shirt reads, that Alex will Never Give Up.

 

To Donate to Answers for Alex, click here.

 

 

A 90’s Classic Christmas Tune

When I hear this song, I’m immediately transported back in time. I’m fourteen again, at my Chariti’s house for a sleepover and we’re belting out Justin’s high notes into our hairbrush microphones. Who’s there with me?