Labels: in the news, maria sue chapman, steven curtis chapman

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!!


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."

Labels: erma bombeck, mother's day, the special mother

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

Labels: brain injuries, elephants, elvin the elephant who forgets, heather snyder, pediatric brain injuries, susan beebe

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!!

Labels: dragonfly heart camp, heart camp, pediatric heart camps, pediatric heart disease, pediatric pulmonary hypertension

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!

Labels: ATRT, Caleb Milligan, Cassidy

Thanks to all these fine Entrecard folks who have been consistently coming by for a visit! These are the top seven droppers.

Easy Share ---Connie's going to be seeing Gregory H. Johnson (Major, USAF) soon!
LloydLopez.com ---tons of techy stuff here, folks!
Cheaper by the Half Dozen ---read a neat story about her son
The Sewing Mom ---read about a IRL meet-up!
Old Bitty ---see a hilarious IRS sign!
Nessa's Place ---read about Nannito Bandito
Struggling Parents ---find out about natural remedies for ADHD


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Labels: entrecard droppers

As summer is quickly approaching, I thought I would share some camps I've come across lately.

This week's featured camp is Trails Edge Camp. This camp is for children ages 5-18 who are ventilator-dependent. It's a great opportunity for these kids to meet other kids like themselves and also a time where parents can take a break and know that their child is in good hands.

Of course, like any other camp, there are tons of activities planned like horse back riding and fishing along with all the other typical camp activities! I think it's great that camps like this give children the opportunity to be children...to be able to do things that other kids at camp are doing. They just have to do them a little differently! One thing I think is incredibly neat about this camp is that there is a tree house that the kids can go up into. They get hoisted up in a sling and harness!! Very clever!!

If you have a child who is ventilator-dependent you should check into this camp. It's located in Mayville, MI and is absolutely FREE to children and parents. See what generous donations can do!!

Let me know if you go!!

Labels: camps for medically fragile children, trails edge camp, treehouses, ventilator-dependent children

One of the resources I found early after being told that Gus would need to be tube-fed for awhile was the Oley Foundation. I did a search for tube-fed children and support groups and this foundation is what came up on the results page. I'm thankful that I discovered this resource because there is tons of info and tips. I encourage you to check it out if you have tube fed child!

I noticed too that there is a section on Omegaven now. This is the new drug that has had incredible results in repairing the liver. This is huge for those people who are on long-term TPN because the lipids in the TPN basically kill the liver. I found out about it a month after Gus died. It's not an easy medication to get, but there is info at the Oley Foundation site that tells you how to actually go about it. At the time I found out about the med, it was only being administered in one hospital...now there are at least 25 hospitals who are giving it. I can't even begin to tell you how happy this makes me. TPN induced liver disease kills infants...the adults seem to do better but not by much...so to know that this med is becoming more available to small ones with short bowel syndrome really makes me happy.

I still get the newsletter because I want to stay on top of the information. Hopefully, we'll be adopting medically fragile children in the near future and I'm sure most of them will have a g-tube, ng-tube or central line. I'll be a better caregiver if I stay informed!

Labels: central line, g-tube, liver failure, ng-tube, oley foundation, omegaven, tpn, tube-fed children

Thank you, thank you, thank you!

1. Mom is Just a Nickname
2. Healthy Lifestyle Blogzine
3. Momma Muse
4. Reap Money Online
5. Dance of Motherhood
6. Treasure Nature
7. Sue Doe-Nim

Labels: entrecard, entrecard droppers, link love

Some of you all remember me writing about Betty Refour and her sister Rose who is an autistic adult. Well, I recently heard from Betty that there is a new blog(Etsy for Autism) that is being written by a team of artists who support and encourage Autism Awareness. I love to buy handmade items and I think it's wonderful to know that there are people out there who are using their talents to draw attention to things like autism, organ donation, etc. So head on over there to see some really beautiful art...and be inspired by these kind souls!

This is a piece created by Rose. Betty says that Rose has always been artistic and that she loves to go shopping immediately after she sells one of her masterpieces! Click on the artwork to go to the Etsy shop...

Labels: artists with autism, austism awareness, autisitc adults, betty refour, etsy for autism, rose refour

There are a lot of books out there to read. Some books are entertaining…some are boring…some are down-right awful…and then you come across a book that is just…well…beautiful! That’s exactly what I discovered when a church friend loaned me her copy of the Room of Marvels by James Bryan Smith.

This is a story about the author’s loss of joy after the death of his best friend, his two year old daughter and then his mother. Well, let me rephrase that: it is a story about the hope of Heaven and regaining joy! This is such a moving book, and I could so closely relate to the author, that I read it in one sitting. Yes, everything else was pushed aside so I could read this book and take from it the message God wanted me to hear.

You join the author on a journey through Heaven. As the journey progresses, the author meets acquaintances and loved ones from his past and yes, he does see his best friend, mother and his daughter. And yes, you will cry! Of course, the book is fiction because none of us know such details about Heaven, however, I do believe that God does reveal things like this to us and I do feel that God did just that with Mr. Smith!

If you have experienced the searing pain of losing a loved one, especially a child, then you certainly need to read this book! I was moved, inspired and filled with hope and joy for what is to come. I am thankful that Mr. Smith has shared his dream with us and I’m tickled to think that my children know his child in Heaven…I just know they do!!

Labels: book reports, books about heaven, christian fiction, good books, grief, james bryan smith, joy, room of marvels

I was thrilled and honored to find our Gus' Gang button in the sidebar of a blog I came across today! It really touched my heart... Please be sure to visit Cheaper by the Half Dozen. You'll be sure to find a neat blog chocked full of good stories and lots of lovely goodness. And of course, Jo from Life with Heathens, has had our button in her sidebar for awhile now...thank you, friend!

Entrecard Top Droppers:

Parenting Squad
Sense to Save
Mommies Home
Momma Muse

A big "Thank You" to these fine folks who ran our Gus' Gang button on their blogs:

Comfort Joy Designs
Grammology
Parenting Diva
Mo Mhile Gra

Labels: entrecard, linky love

Just wanted to let you all know about a cool giveway happening over at Doodlebug Designs! To celebrate the Grand Opening of her business, Judi (Grayson's mom!) has decided to give away a template...well, actually she's giving away several prizes! Here's the list:

• 1st Place Prize ~ FREE completely customized blog design for a blogger blog!
• 2nd Place Prize ~ FREE completely customized header for a blogger blog!
• 3rd Place Prize ~ 10% off any service!

Judi does great work...she designed my Up the Hill Gang blog and I absolutely love it! Make sure you head on over there to get all the details! Neato Mosquito!

Labels: blogger templates, Doodlebug designs, template giveaway

Hat tip to Karen from A Deaf Mom Shares Her World for sharing the link to the interview with Darren, the passenger in the commercial! Neat!

Labels: bob's house, deaf, deaf awareness, deaf culture, hard of hearing, superbowl commercials

As I was visiting Corey today, I read about the Dales Walk being pursued to raise funds for the Joseph Salmon Trust. This trust has been established in memory of 3 year old Joseph Salmon who died in his sleep. The money in this trust goes to help with the expenses when a child dies. I think this is a wonderful cause. Funeral expenses are so high and sometimes it is years before money can be saved in order to purchase a headstone for the grave. One of the best ways to help families who have lost children is to help with these kinds of expenses. We had someone donate money when Gus died and we were able to purchase his marker quickly....there are some graves around his that still have the little metal pokes used to id the graves that do not have markers yet. It would make me very sad if we had not been able to mark Gus' grave....


So...if you feel led, please consider helping this group raise some money to help these grieving families. Every donation makes a difference.

Labels: charity, grieving the loss of a child, the dales walk

Henry Larsen Doriot

“Gus”

January 18, 2005 - May 31, 2006

I am happy!

I am happy that I got to meet Gus. I’m happy that I got to see his precious smile and his flirtatious ways. I’m happy that I was able to capture very expressive moments with my camera so I can continue to share Gus with others. I’m happy that we got to bring him home where he could interact with his siblings in a normal atmosphere. I’m happy that he would wiggle to get out of the arms of whoever was holding him when he saw me come in the room. I’m happy when I remember his fascination with a new plaything. I’m happy when I think about the special kind of communication we had since he was deaf. I’m happy when I think about how much he loved to get his central line dressing changed because of the smell of the chloraprep. I’m happy because he was such a complete joy to take care of and I’m so happy that he is mine!

Labels: Gus

I have decided to put together an album of our Gus' Gang kids so I can show our "locals"...mainly because I can't get any of them to visit the blog! lol! This is Leah Rose...isn't this an absolutely adorable photo of her?? I love it!

Anyway...be looking for more layouts...I'm kinda addicted! I've got Rhett's done and am looking for the perfect "paper" for Noah...

Labels: becky smith, digital scrapbooking, digital scrapbooking freebie, french kiss qp, leah rose

I first read about Tadhg over at Noah's blog. I was so moved by something that Tadhg's Uncle Chris wrote that I wanted to share it with you all. Having experienced the death of a child myself, these words really touched my heart. As I approach Gus' birthday, I want to remember these words...

One would not say that a short story is incomplete because it isn't a novel. It takes all kinds and some stories by their brevity make their point all the finer.
----Tadhg's Uncle Chris Kilgore

Please join with me in prayer for this family and please visit Tadhg's blog and read his courageous story. Also be sure to read The Poet...it's beautiful and I'm thankful that the family has shared it....

Labels: healed in heaven

Samuel Finn Doriot

January 9, 2004

born sleeping at 19 weeks

A Dream

A dream is a wish your heart makes,
When you are fast a sleep.
In dreams you will lose your heartaches,
Whatever you wish for, you keep!
Have faith in your dreams and someday
Your rainbow will come smiling through!
No matter how your heart is breaking
If you keep on believing
The dreams that you wish for,
will come true!

from Walt Disney’s Cinderella

Labels: samuel finn

I've just finished a book that I thought some of you would enjoy reading. It's called One Small Sparrow by Jeff Leeland and you can read my quick review over at my main blog, Up the Hill Gang. I have a hardback copy that I found in the free bin at our local book exchange place and I would love to pass it along to one of you! It's first come first serve...just make sure you leave me your e-mail or blog address so I can get in touch with you to get your mailing address!

Labels: books, encouragement, giveaway, one small sparrow

Labels: Gus, Wordless Wednesday

Meet Leah Rose! She is a spunky 4 year old we are going to be praying for here at Gus' Gang. A geneticist at Shands Hospital in Florida has diagnosed her with Freeman Sheldon Syndrome. Her mom has put together a ton of information for us at her blog so instead of explaining the syndrome here, I'm going to send you over there!

I look forward to getting to know Leah Rose and her mom and I also look forward to praying for them. Please join me!

Labels: freeman sheldon syndrome, shands hospital

We've been reading a good little story by Hans Christian Andersen called What the Moon Saw. As I was doing some research about this author, I came across this poem that really touched me....and yes, made me cry. It's the last stanza...the image of an angel kissing my sweet Gus just brings tears to me...good tears though. He is sorely missed....

The Dying Child

By Hans Christian Andersen.

Mother, I'm tired, and I would fain be sleeping;
Let me repose upon thy bosom sick;
But promise me that thou wilt leave off weeping,
Because thy tears fall hot upon my cheek.

Here it is cold: the tempest raveth madly;
But in my dreams all is so wondrous bright;
I see the angel-children smiling gladly,
When from my weary eyes I shut out light.

Mother, one stands beside me now! and, listen!
Dost thou not hear the music's sweet accord?
See how his white wings beautifully glisten?
Surely those wings were given him by the Lord!

Green, gold, and red, are floating all around me;
They are the flowers the angel scattereth.
Should I have also wings while life has bound me?
Or, mother, are they given alone in death?

Why dost thou clasp me as if I were going?
Why dost thou press thy cheek so unto mine?
Thy cheek is hot, and yet thy tears are flowing!
I will, dear mother, will be always thine!

Do not sigh thus – it marreth my reposing;
But if thou weep, then I must weep with thee!
Ah, I am tired – my weary eyes are closing –
Look, mother, look! the angel kisseth me!

Labels: grief, grieving the loss of a child, hans christian andersen, the dying child

As I was out and about visiting other blogs today, I came across a post over at The Not Quite Crunchy Parent blog which reminded me of all the words of encouragement we received and still do receive on Gus' Caringbridge site. MC Milker has written a post called "Caring Through CarePages" about how she has been lurking around one that has been set up for a child who has leukemia. This little guy goes to preschool with her child.

I can't even begin to tell you all how encouraging it was to us to find out that we had received comments. Some were short and to the point and others were long...all were refreshing and gave us so much love. Just that fact that someone had checked in on us was encouraging.

So, if you are ever at a CarePage or Caringbridge page, please be sure to leave a comment. It doesn't matter if you actually know the person or not. In fact, that is exactly how I met Judi, Grayson's mom...she had commented on Gus' page after he had died and we started corresponding. So, see...you don't have to really know the family to spread God's love and encourage one another.

I challenge you this week to find a Caringbridge or CarePage site and just leave a comment. Some pages are private, but there are plenty of ones out there that are not. Of course, you can always visit some of the kids we have listed in the sidebar.

You really can make a difference....

Labels: carepages, caringbridge, encouragement

I just got an update from Jon's caringbridge site with the information that he has died. Folks, we need to really just bathe this family in prayers right now because I can't think of a harder thing to go through than the loss of your child. I also know that the presence of the Lord during a time like this can be very evident and can give great peace. Though saying goodbye to Gus was the hardest thing I have ever had to do, I did feel that peace that goes beyond understanding and that is exactly what I want for this family...for Jon's mom, dad, well, his whole family because I know that they are all feeling his absence right now. I have included a photo from a family vacation...these are a few of the people that need our prayers right now. Of course, you can see Jon right there in the front.

May the God of Peace and Love bring comfort beyond measure to this family and may this comfort last until we all are reunited with our children in Heaven.

Labels: jon m

Jon is in need of our prayers. He was in an accident after work on October 29th. According to his Caringbridge site, he fell off of a moving golf cart and hit his head. Currently he is in the ICU...today has been a hard day and there have been some changes in his condition that may mean a different treatment plan.

Not only do we need to pray for Jon, but we need to pray for his family too. Those of us who have dealt with things like this know all too well how stressful it all is. I will be praying for the Peace and Calm that only the Lord can bring....

You can keep up with Jon over at his Caringbridge site.

Labels: jon m, prayers requests

Dearest Noah,

ok..ok...I know, I know...I've been a horrible person because I've not been posting about all the wonderful new things you are doing...and well, some of the interesting things you are doing! But please...when you look at me that way, I feel so bad! I haven't forgotten you, really.

I think it's wonderful that you are rolling over and that your mom (well YOU!) dc'ed your ng tube!! That's exciting news. I know how icky those ng tubes can be for both mom and baby..not fun. And look at you gaining all that weight...You Grow Guy!!

So, I was wondering, what's the first thing you're going to do when you get to your "Home Home"??

Your Friend and Fan,
Jenny

ps...I know that you are not looking at me all sad like...it was your dad wasn't it? Bugging you while you were taking a bath...sheesh!

Labels: noah m

I was avoiding any kind of responsibilities this morning and I came across a wonderful post that Lillie had written over at her blog A Writer's Words, An Editor's Eye. It's about two people who have overcome great obstacles. Of course, I focused in one the video of Stephen Hopson because he is deaf. Gus was profoundly deaf and I found that, while he was here with us, I developed a heart for the deaf. I am amazed at these people...what heroes they are. Can you imagine for even a minute what it would be like to hear absolutely nothing?? It blows my mind...

Here's a video about Stephen. I hope you enjoy it as much as I did and I hope that you are inspired by his "can do" attitude! I also hope you catch that there was one person, his elementary school teacher, that encouraged him...and I hope that instead of just looking at people who are "different" that we all reach out and encourage and embrace these people...and appreciate them for the wonderful gifts they are! Enjoy!



Stephen Hopson links:

Obstacle Illusions
Adversity University

Labels: adversity university, deaf, encouragement, obstacle illusions

Really...I stole the post title from what the author of this neat site said because it completely cracked me up! It reminded me of how much it is necessary to have a sense of humor when you have a sick child...it's good therapy!

All that aside...if you have a blind baby or know someone else who has a blind baby, then you need to visit Wonderbaby support groups where you can meet with moms and dads who have "been there-done that"...it's . Not only will you find instructions for making your own "Little Room" but you will find a lot of resources for families with blind babies. Most importantly you can find severa moms and dads who have walked the path before...it's always comforting to know those who are farther along the path...

Labels: blindness, encouragement, wonderbaby

Absolutely squeezable....really, I would have a hard time keeping my hands off this little guy!

I was thrilled to read that Noah and his mommy will probably be heading "home-home" on October 25th!! He is eating well and making great progress....his mommy is excited and so am I!

Let's remember to continue to pray for this little trooper, his family (his big sister!). Also, Noah's mom mentioned that her Aunt has had some medical complications and needs our prayers also.

Labels: noah m

Word has it that Izzy is loving Kindergarten! And I'm sure those assisting her during school are loving her!! Lots of neat things going on with this little chick so be sure to head over to her blog and read all about all her school adventures...neat!

Labels: Izzy, school

19 pounds! Let me tell you all, this is a BIG deal! Those of us who have taken care of a child who does not thrive know that even a few ounces is reason to cheer. Heck, there were times that we were thrilled that Gus had stayed steady and not lost any weight. I know Damon's mom has had that feeling too....

I am just thrilled that Damon is becoming a Whopper! Maybe he can give some lessons to Noah!

Labels: Damon, weight gain

Ahhh....there's nothing like seeing your baby without tubes! I love his expression!!

Crystal's new chant is "Get Fat Noah!"...and that's exactly what I'm going to be praying for! Fat is good when you are medically fragile....sometimes, fat is everything. So grow big, baby, grow big!!

Labels: noah m, tube free

And – this is very important – though you and I may wish a longe