Music Within

I watched a really good movie the other night called "Music Within". I just kind of stumbled on it while looking for something....anything....to watch on tv. It was kind of a scary time for me because if I couldn't find anything it meant I would have to clean the kitchen! Anyway...I did find a good one...it's rated R so there's your warning.

Here's a photo I found of the real Richard Pimentel and Art Honeyman. I hope you all will get a chance to watch this movie!

Meet Aidan!

I just found out about this little guy today. His name is Aidan and he's a complete cutie! Aidan has been diagnosed with Eagle-Barrett Syndrome (also known as Prune Belly Syndrome) and End Stage Renal Disease and, needless to say, he really needs our prayers. Recently, he has suffered a stroke which has left him without activity in the top portion of his brain. This has been heartbreaking news to his family. I encourage you to visit Aidan's Fight and let his family know you are praying for them...words of encouragement are so powerful!!

What I Want to Be When I Grow Up

I've been away for awhile because I've been getting ready for nursing school (BSN at ETSU). Applications and other necessary paperwork has been turned in and all I have to do now is wait...for something like two months! Ack!! While I've been away, I have remembered all of our little Gus' Gang kiddos and families. I haven't kept up with all the blogs and updates though so I will be taking some time to catch up. I can't wait to hear about all the exciting things everyone is doing!!!

Also, I am looking for organizations and sites that offer encouragement to families who are suffering the loss of a child through miscarriage. I want to update my sidebar and there are a bazillion of these sites out there. I was hoping that one of my readers had a suggestion...

As always, if you have specific prayer requests let me know...if you know of child you would like for me to add to Gus' Gang then let me know! It's an honor to pray for and offer encouragement to these kids and their families!!

Urgent Prayers for Chloe and Family

UPDATE: Chloe died Tuesday night at 10:51. Please continue to join with me in prayer for her mom, dad and little sister...


I just read this over at Chloe's carepage:

Chloe’s internal functions are slowing down and starting to not work as efficiently as they should be, and we have been given a possible time-frame of 2-3 days or maybe a week at the most. I really, in my heart, don’t think we have a week. We have all of our family coming tomorrow to visit.

Let's all remember to be prayer warriors for this family during this time. This news breaks my heart...not for Chloe because I know she will be fine...but for Mom and Dad. It's tough, folks. It's tough to have to let your child go...on one hand you want them to no longer suffer, but on the other hand you know you will miss them so profusely. At the same time, as parents, you hold out hope that God will miraculously heal your child...and He can if it is His will. There are tons of emotions, but in the midst there can also be God's peace and that's what I pray for them.....

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Chloe's Journey

Nessa asked me to add Chloe to our blog and prayer list...it my honor and privilege to do so! Chloe is a 7 year old little gal who was diagnosed with Stage IV Neuroblastoma awhile back. She received several different treatments, including a bone marrow transplant. Scans have been done on a regular basis and all have come back clear...until recently. Unfortunately, the last scan result was not what was expected and her parents received that much dreaded news...the cancer is back and has spread to her liver and back into her bone marrow. My heart just breaks for her and her family...I don't understand these things...can't even wrap my mind around it. God is the only thing that brings any kind of comfort during times like this. A friend had updated the Carepage with this:

I am so grateful to KNOW without a shadow of a doubt that GOD IS ON THE THRONE and nothing surprises Him. He has prepared Michele, Nathan, Chloe and Trinity for a time such as this. We, those who love and support them, can offer the greatest gift by lifting them up to The Father.

And that is what I am asking all of you Gus' Gang readers to do...pray for Chloe and her family.

I just love the photo above! Those bright eyes are just captivating...makes me think about what little warriors these kids are to endure all the hardships they face. Seriously, they seem to always be smiling...I think there is a lesson in that for all of us.....

You can visit Chloe's Carepage for regular updates and to leave encouraging comments for her and her family.

Sad Update

It was my plan to post an update about Isaac Bowers...he is the little fellow I wrote about here. He and his family were awaiting heart surgery at Vanderbilt when he caught some type of infection. Pete received a call just a bit ago letting us know that Isaac had died. As many of you who have had sick children know, being in the hospital is both good and bad: good because our children are given medicines and therapies that give them a chance, but then on the other hand it's a place where germs thrive.

My heart just breaks for Isaac's family because I know how they feel and I know what lies ahead. As we have been praying for little Isaac's healing (which, by the way, our prayers have been answered!), let's now shift gears and pray specifically for the healing of his parents and the rest of his family. Pete and I will be dropping off a GUS Box when we go to the service. If you want to leave a message of condolence or of encouragement, please do so here and I'll make sure it gets to Isaac's family.

Prayers Needed for Kari

Ok, Prayer Warriors...I've got a little gal that needs your prayers! Her name is Kari...she is just a few days old and she has an incomplete aorta, an aortic valve that is too small and she has a hole between the bottom 2 chambers of her heart. Needless to say, this little chick has some serious medical issues and she and her family need our ongoing prayers.

Kari was airlifted to CHOP (Children's Hospital of Philadelphia) last night. The docs there at CHOP are very familiar with the type of surgery she will need and are better equipped to handle it all. Friends of the family made sure that Kari's mom made it to Philadephia in a timely manner...they provided her a charter flight! Seriously, I think that is soooo nice....I was so pleased to hear that mom was able to get to her quickly.

Kari also has two sibling, I believe, so say some extra prayers for them also.

If you have a desire to send an e-card to Kari through CHOP, please e-mail me and I'll pass along the info.

Minkee-liscious Quilts

I just wanted to share with you all these wonderful quilts that have been donated to Gus' Gang! They were made by my friend, Joy Smelser, and they are WONDERFUL....anyone who knows what Minkee is knows that I am not fibbing here! lol!! Joy has backed these quilts with Minkee and has even added a few squares to the front of some of the quilts....Minkee is soooo soft and I think the kids at the hospital will love to feel these quilts and will certainly want to snuggle up with them! Folks, these photos don't do these quilts justice...my design wall is falling down and I just am not a photographer...









Joy also made some little bitty quilts that I've been calling "Stim Quilts" which is short for stimulation quilts. These little quilts have lots of different textures on them which makes them great for the little NICU babies who are a little older and need the stimulation...there's the soft minkee, a waffle texture and satin. Just perfect!!


I am so thankful for Joy and I can't wait to share her wonderful quilts with the Child Life department at our soon-to-be open children's hospital in Johnson City. Pete and I are going tomorrow to the ER Open House and I'll be taking these with us.

Prayers for Baby Bowers

Pete and I have recently taken over one of the local blood drives. While Pete was calling one of our regular donors, he found out about Baby Bowers.

Baby Bowers was born last night to Sam Bowers and wife (Sam is the donor we were trying to reach). He had to be airlifted to Vanderbilt because he needed emergency surgery to repair his heart. We don't have the details, but we do know how scary this all is to the family. Pete talked to the Grandmother who gave as many details as she could....as we get the info (I'd like his name!), I'll pass it along. Until then, just pray.

Needing More Help!

Our son, Gus, who passed away at 16 months, was profoundly and bilaterally deaf. Most insurance companies DO NOT pay for hearing aids...ours was one of those that did not. We were fortunate enough to get help from a local group that flat out paid for Gus' hearing aids which were $10,000 a pair. A lot of people are not in the same situation that we were and they are having to pay for their child's hearing aids out of pocket. If that had been our case, Gus would not have had the hearing aids. I think it is very important for any child who has been diagnosed as hard-of-hearing or deaf, to have the equipment he/she needs.

The organization I blogged for this past Saturday is one that advocates for these kids....they too feel that deaf children should have the equipment they need. Seriously, it makes me sad that we even have to have an organization to do this....it should be an automatic thing that we do...take care of our children. I'm simple though...I guess it's much deeper than that....

Anyway, I know that money is really tight for all of us right now and that's why I am thrilled that Nessa has set up a way for you all to donate to Blogathon 2008 without spending a dime!! Please head over to her blog and read all the details...it takes less than a minute, won't cost you a single cent, and she's giving away prizes!! Woohoo!!

Of course, if you want to donate more you certainly can. All you need to do is click here and then send me an email at pdoriot(at)chartertn(dot) net or leave a comment and tell me the amount you've donated. I will post your name...unless you wish to remain anonymous. I only ask you to send me the amount so I can keep track goal-wise!

CURRENT DONATIONS: $155 only $345 more to go!!

Thanks:

Kidd Dynamite

Nessa and Gang in memory of Serena who recently passed away.

Crazy Tanya

Anonymous

Blogathon 2008

For more information and instructions on donating, please click HERE!

AN EASY WAY TO MAKE A DONATION THAT IS ABSOLUTELY FREE TO YOU!!

Nessa, from Absolutely Moms and According to Me, has graciously offered all of her monies earned from her Lilaguide registrations!! Lilaguide is a new site with lots of different communities. Nessa has started a group for WAH or SAH moms where we can exchange tips and ideas, read product reviews and even find great blogs to read! This community is new and is growing daily...I know you don't want to miss out on this!! Even if you are not a WAH or SAH mom yet, you are still welcome...heck, even if you're not a mom yet, come on in! lol!!

Sign-up is easy-peasy. All you have to do is sign up here and when you do so, Nessa will make as bit of money which she will be sending to me as a donation for Blogathon 2008. So see, you can donate even if you have absolutely no money whatsoever...how cool is that!?

Seriously, this is so easy....just a smidge of time and you've joined a cool group AND you've helped make a difference in the life of a deaf child! So do it...ok?

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Prayers for Maddie

UPDATE: Maddie died late last night. Please continue to pray for this family....


I usually don't post information or photos without permission, but I felt led to do so this time. I think it is because Pete and I have been where this family is right at this moment and we know how the power of prayer can envelope us in peace. That is exactly what I want all of us to pray...that the family of Maddie Harrill will feel that peace of God that goes far beyond our own understanding.

Maddie has cancer and has been given a poor prognosis. I believe she is currently at East Tennessee Children's Hospital which is where we spent so much time. I know that the whole family is being cared for well by the nurses and doctors there...we were so I imagine they are too.

Her parents are hurting, yet they remain full of faith. Folks, watching your child die is so very hard so please, please, please make time to pray for this family today. I rejoice that Maddie will soon be seeing the glories of Heaven, but my heart is breaking for her mom and dad. Of course, there is always hope that Maddie will be healed her on earth, but sometimes the miracle of healing takes place not on this side of Heaven. Regardless, God has Maddie in his hands...

You can read more about Maddie...and see some great photos....over at her Carepage. Type in MaddieHarrill as one word. www.carepages.com

Johnny Jackson

I just read about a little guy named Johnny Jackson who has died due to secondary drowning. My heart is heavy for this mom right now and I think we should all remember her and the rest of the family in our prayers. It breaks my heart that such tragedy has followed what started out to be a fun time...very sad.

Letter to Gus

I am posting this letter one day early because I will not be on the computer tomorrow...it is Celebrate Gus Day! Gus died on May 31, 2006 and we will be celebrating his life this evening and all day tomorrow...

I have found it very therapeutic to write letters to Gus. The following is the letter I’ve written to mark the second anniversary of this death…or rather, his “homegoing”. I want to make it very clear that by writing this letter I am in no way trying to make contact with him. Contacting the dead is wrong and quite dangerous. (Deut. 8:9-12). There are deceitful spirits out there that yearn to make us think we are talking to our loved ones when in all actuality we are not. Besides…God has provided us with the only Spirit we need…the Holy Spirit. He will not deceive us nor misguide us. Since I’m certain that the Lord and Gus see each other daily, I have asked Him to share these letters if it is His will….I like to think it is!

Dearest Gus,

It has been two years since we said goodbye to each other. When I think about the time that has passed, I am amazed that it has been that long—yet, then again, sometimes it feels like it was just yesterday. I am still able to feel the weight of your little body in my arms. I can even still imagine nuzzling your neck and breathing in your precious baby smell. I know in time that will pass. God comforts me with these memories and I am thankful.

I still dream of you often. My hope is that I will continue to do so until we are reunited. My dreams of you are often funny. I can honestly say that I wake up from them feeling joy instead of the great dread that I could feel in knowing you are no longer here. God uses these dreams to bring me comfort and I am thankful.

Your dad is about to graduate nursing school and I’ve just started working on my three pre-requisites so I can start nursing school next summer. My time with you has shown me that I can handle the toughest things on this earth. Certainly I have not done any of these things—like holding you as your heart beat for the last time—on my own but only through the magnificent power of our Lord and Saviour, Jesus Christ. Because of this, I am praying that God will bless us with in-home opportunities to care for other medically fragile children—especially the ones that are abandoned in the hospital and have no one. This sounds crazy to a lot of people and I do understand. Who in their right mind would want to get attached to a child that may die?? Who would set themselves up for such heartache?? Well, your dad and I would…and we would be honored to have the opportunity to do so. I have been blessed and equipped with the experience of your death and as I start school, I look forward to the chances I will have to “give back”. God has empowered me to face the tough things and has given me empathy and I am thankful.

As I am aware of the fact that a righteous man’s prayer is powerful and effective(James 5:16), and you my son are as righteous as you can be since you are now with the Lord, I am hoping you will pray for me…well, for all of us Doriots! Seriously, this world is so beautiful yet so dark—so full of sin. I strive daily to live joyfully and I look forward with great anticipation to our reunion. It is hard here though so please pray that we will not grow weary and lose sight of Home. God uses the reality of Heaven and seeing you again to comfort me…and I am thankful!

I love you, Gus!

Mommy

Make an on-line slide show at www.OneTrueMedia.com

Katerpillar Kids

The summer after Gus died, Nik and Jake attended Katerpillar Kids. This camp is held yearly for children in grades 1-12 who have lost a loved one.

Our good friend, Chaplain Sandy, sent us information about the camp and I'm so glad she did! Pete and I thought it would be good for the boys to meet others who were experiencing loss like they were. Some of the kids had also lost siblings, but some had lost parents. At the end of camp, there was a butterfly release. I missed it because I had gone on a scrapbooking retreat...in all honesty, I'm not sure I could have handled seeing the butterflies fly away. I could now, but not back then.

Katerpillar Kids will be held this September in Townsend, TN. The camp is free and fills up quickly so you need to get your application in soon!

Maria Sue

Please join me in praying for the family of little Maria Sue Chapman.

The Special Mother

I wanted to share this famous poem by Erma Bombeck. I can't help but think about all you moms out there who are daily living (and thriving!) with your wonderful special needs kids. Though Gus was only with us a short time, I was certainly plunged into that world and I know both the hardships and joys you all experience on a daily basis. My wish is for each of you to have the most wonderful Mother's Day ever!!

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger. "Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard.
He's used to profanity."
Finally he passes a name to an angel and smiles.
"Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience,
or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today. She has that sense of self and independence
so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that.
This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't seperate herself from the child occassionally,
she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."

Elvin the Elephant Who Forgets

I came across this book and I thought that some of you might like to know about it. It's about an elephant who suffers a brain injury after a tree branch falls on his head. He visits a therapist and finds out that he's not bad at all and that he just has an injury.

This sounds like a wonderful book and the illustrations are great...and not only because I love elephants! You can see for yourself by checking out some page excerpts. Very neat!

If anyone has read this, I'd love to know!!

Elvin the Elephant Who Forgets
by Heather Snyder & Susan Beebe, Illustrator 2005

Dragonfly Heart Camp

Dragonfly Heart camp is a camp where children with heart disease and pulmonary hypertension can go and experience a lot of fun and adventure! Kids will be able to use a zip line, take field trips, nature walks, and much more. Of course, there are doctors, nurses and respiratory specialists who are part of the staff so campers are well care for.

Dragonfly Heart Camp is located near Chesapeake Bay in Maryland. The camp is almost free...there is a $50 registration fee that is non-refundable. For more info, you can visit their website here. Sounds like a lot of fun!!

Two New Friends

We've got two new Gus' Gang friends to welcome!

First is a little fellow named Caleb. Right now he is hanging out at St. Judes in Memphis, TN because he is undergoing treatment for a rare cancer called ATRT. I hope to soon get permission from his family to post a photo and his carepage address. Caleb's parents live in Greeneville and take turns staying with Caleb in Memphis. Road trips are common in situations like this so we all need to be praying not only for Caleb's healing, but also for travel safety for this family.

Next, I'd like to tell you all about a gal named Cassidy. She is a nine year old girl who my parents have recently met...her uncle owns a restaurant that my parents eat at and she sometimes helps her uncle serve the food. Both of my parents have mentioned that she is just a jewel! Well, last week, she was diagnosed with Stage 4 cancer. We are still trying to find out what type of cancer and I'll let you all know when I do. She has already had her first treatment and became very, very sick. I hope that each of you will pray for this gal and her family. I hope to find out when her next treatment is so that we can just bathe her in prayer at that specific time. As with Caleb, I hope to get a photo soon.

So there you go....please don't delay in adding Caleb and Cassidy to your Prayer Lists!