Showing posts with label Charity. Show all posts
Showing posts with label Charity. Show all posts

May 31, 2012

It Might Be Hope

We have walked these halls many times and are so thankful for the amazing staff at Primary Children's Medical Center. Mercy River and KSL recently teamed up to make this new video. It was so close to my heart... 

It Might Be Hope
by Mercy River

You do your work the best that you can
you put one foot in front of the other
life comes in waves and makes its demands
you hold on as well as you’re able

You’ve been here for a long long time

Hope has a way of turning its face to you
just when you least expect it
you walk in a room
you look out a window
and something there leaves you breathless
you say to yourself
it’s been a while since I felt this
but it feels like it might be hope

It’s hard to recall what blew out the flame
it’s been dark since you can remember
you talk it all through to find it a name
as days go on by without number

You’ve been here for a long long time

Hope has a way of turning its face to you
just when you least expect it
you walk in a room
you look out a window
and something there leaves you breathless
you say to yourself
it’s been a while since I felt this
but it feels like it might be hope

Mar 20, 2012

Team Kellan

Meet Kellan:


Isn't he cute?! His parents are helping raise awareness and fighting for a cure for Angelman Syndrome. Please support them in their walk if you can. Information can be found here.


Mar 13, 2012

Profile Proposition

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I have a proposition. Let's revolutionize facebook and blog profiles to be more useful to those who love us  if the time ever comes that we need a helping hand. This is not my idea, but a genius one from my dear friend, JeriDawn, a mother of 5 little princesses, incuding Mialee. I'll let her explain:

One night as I was laying in bed, saying my prayers, contemplating life, not sleeping...I considered quite a few people. Some need lots of help and others a little and some I'm not sure what they need. I like to help people, but I have issues with how to help. So, it is my proposal that blogger profiles and facebook profiles should be useful. Really, who cares what kind of music you like? Or movies for that matter? I need useful information...

Here is a little of what I think profiles should be about...

1. What are some of your go-to snacks for kids? What are their favorite things, the ones you always go back to, the ones that are always in your cupboards? How about special treats?

2. If you have had "one of those days" what is your choice way of winding down? What are your favorite comfort foods?

3. Name 3 meals that your family will always eat...pizza? Lasagna? What fruits and veggies will your kids consume?

4. What is your idea of a night on the town? By yourself? With friends? Hubby? Where would you go? Restaurants?

5. Name 3-5 things that are considered "extras" for yourself. Things that you always want, but feel like they aren't a necessity and tend to get swept under the rug when your kids go through a growth spurt and suddenly need 5 new pairs of pants.

6. If you could have a fairy-god-mother, what would she do for you?
Isn't this a wonderful idea?! We do all sorts of preparedness like fire drills, storm shelters, food storage, etc. Why not have information available to people for day-to-day emotional emergencies, those days when we are just down in the dumps, or more importantly if we have something major come up and really need some help. Wouldn't you love if all your facebook friends had this information available so you would know what to do for them instead of feeling helpless? And let's be honest, as a special needs parent the potential for needing a helping hand is a little higher than most. There is no shame in helping others know how to help you.

Okay, who's with me!?
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Feb 27, 2012

Love That Binds

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Love Quilts is a great organization that creates quilts for critically ill children. All that is required is a page such as a blog or Caring Bridge that keeps the association or quilt maker updated on child's progress. Here is a little more about how it started.


Hi!

I am Cathy, I run the online group Love Quilts. If you have been a part of Love Quilts for a while I know what you are thinking, "Wow, I now have a face with all the emails!". I know how nice it is to finally see a picture of someone I have been corresponding with for a while, but they never look like I thought... I am sure it is the same with me! :-)
I am creating this page because so many have asked about me and how Love Quilts began. I thought this would be a good way for everyone to get to know me a little better.
First I will start with a bit about me. My name is Cathy, I am 41 and I have been married for 20 years to Jeff. We have two children, Curt is 19 and Kayte is 16. We live in Michigan and for 3 1/2 years we lived in the house my husband grew up in, we bought the house in October 1999. We moved into our brand
new home in June 2003 and we just love it! Both my husband and I are Christians and have been since we were children. We attend a wonderful church in our area and we just love it! I am a stay at home mom and the full time coordinator for Love Quilts. I enjoy cross stitch (obviously! LOL), crocheting, genealogy, history, lighthouses, my computer, cats, camping and more! We also enjoying having exchange students. In 2007 we had Marlene from Mexico and Jenny (Eun-A) from S. Korea. Marlene was with us for 10 months, Jenny for 5. In August 2007 we were joined by Pia from Norway, but she only stayed 2 months and moved back home. This year we had Tabea from Germany for 4 months and we had a welcome student, Sophie from Belgium. Sophie was with us for 2 weeks before she went to her permanent home. This past summer (2008) Marlene came back for a visit for 5 weeks and it was wonderful!! We miss her so much! The organization we used for our exchange students is PAX - http://www.pax.org/. We have enjoyed going through this organization.
Well, lots of people want to know how and why Love Quilts began. LQ began in February 1999 and was started because of some things that had happened in my family. In April of 1998 my first cousin's daughter, Kelsey, was diagnosed with a massive brain tumor. She was a very sick little girl and they didn't know if she would live through the operation. The sad thing is her mom had been taking her to her family doctor since she was about 3 (she was 5 by then) with complaints of headaches that made her throw up. The doctor said she had allergies at first and then said she was faking it! Finally her mom had had enough and took her to another doctor and was immediately diagnosed with a massive brain tumor that was wrapped around her optic nerve. They did the surgery in the middle of April (1998) and she had another surgery in July of the same year to remove the remaining tumor missed in the first surgery. These surgery's left her with a number of problems including the fact she has lost all of the hormone part of her brain. Your hormones control so much, including your sleep, the hormones tell you to go to sleep and when to wake up and she couldn't do that. There was the risk that she would go to sleep and never wake up because her brain wouldn't tell her too. She is now 16 years old and she is doing ok, but the effects of the tumor will last her a lifetime.

In May/June of 1998, 2 months after Kelsey's diagnosis, my nephew Justin (my oldest sisters second child) was diagnosed with bone cancer in his left leg at the age of 16. He had been doing cross country racing in high school and during a race his calf area of his left leg began to hurt. It hurt for a couple of weeks and they finally took him in to a walk in clinic and they did x-rays. The determined that he had broken the small non weight bearing bone in his leg. Because there wasn't any major trauma and he was young and healthy they looked into it more. The cancer in the bone had weakened the bone causing it to break and allowing the cancer to spread out. He started chemo right away but the leg grew bigger and bigger and he could no longer walk on it. Chemo was hard on Justin and he suffered a lot because of it. Just 2 months after he turned 17, on September 30, 1998, they removed his left leg above the knee. They tried to continue chemo, he was scheduled for about 2 years more, but his bone marrow was failing and they felt the chemo was killing him. He is continually checked and scanned for cancer, but so far is doing great and he married his long time girlfriend Becky on March 4, 2005!
When Kelsey was first diagnosed I started a prayer page for her to keep everyone updated on her progress. An online cross stitch group got in contact with me and they wanted to make a quilt for her. She received her quilt in July of 1998, see this link to view her beautiful quilt - Kelsey's Quilt - isn't it great?! When this group found out about Justin as well they decided to make a quilt for him too (our grandfather/greatgrandfather also had cancer at the time, sadly my grandfather passed away on April 30, 2003). Click here to see his wonderful quilt - Justin's Quilt - I know you will love his as well! My aunt Sharon was diagnosed with cancer in the fall of 2004 and sadly, she passed away on September 10, 2005. This is the daughter of my grandfather that passed in 2003. She was the youngest sister of my father Harlin, Justin's grandfather, and of my uncle Don who is Kelsey's grandfather.
After Justin received his quilt I decided I wanted to give back to another child what these wonderful stitchers had given to the children in my family. I decided to coordinate a quilt for a child from the Make A Child Smile page, Kelsey had been featured on this site and I knew how thoroughly Alex (the founder of MACS) checks to make sure the child is legit and really sick. That is so sad, but these days you can never be too sure. I picked Katy, a child she had featured the month I began, February 1999. It was the only time I went to the Cross Stitch Pals for help, I posted all over their message board that I was looking for stitchers, it was the only way I knew to get stitchers. Well, stitchers I did get, more than I needed. So, I decided to do a second quilt with the extra stitchers, Emily's quilt and they kept coming and coming. By the end of 1999 we had made 8 quilts for the MACS kids! I was stunned and happy it was going so well, but a bit overwhelmed too.
In 1999 a really great stitcher, Vicki, approached me with help. She and I had been corresponding a lot and she knew I was very stressed with all that was going on, we were moving at the time too. She offered to help and continues to finish off many of the quilts for Love Quilts. She was receiving the finished tops (and in 2001 she even helped make every other quilt top too!) from me and she would put the batting and backing on, what a help that was! Love Quilts now has 10 finishers all over the US helping finish the quilts for our beautiful children!
The squares are first sent to Joan and she posts the scans on a site called Fotki. Joan then distributes the squares to where they need to go to be finished. Click on Fotki to see these squares!
Love Quilts has been published in two newspapers, one in Georgia and one in South Carolina and it was also listed in the Crafts 'N Things November 2001 issue and The Cross Stitcher February 2002 issue and in an article in the June 25, 2002 issue of Women's Day and in the cross stitch magazine Stoney Creek Collections in December 2005!

Love Quilts continues to grow. We have had stitchers from 33 different countries! (want to see the list? See the bottom of this page). We are now approaching 300 quilts made, amazing!! But I couldn't have done all of this without all of you out there and I will always be thankful for the wonderful stitchers who take their time to stitch for these children, you are all wonderful!

Well, on to other things about me, since this is an "about me" page :-) Thank you all for taking the time to read this long post about me and Love Quilts!

Cathy ~ Love Quilts Founder/Coordinator

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Jan 30, 2012

Traveling Bears



Do you know a child who would love a visit from a cute and cuddly teddybear who just so happens to have the same disability as they do? These friendly bears are on a very special journey spreading awareness, encouragement and love by visiting families all over the world. This mission was brought to life by a very young 7 year old boy named Elijah and his mom. They wanted to raise awareness for his diagnosis Pediatric Stroke, and thus the Traveling Awareness Bears were born.


The effort took off and was even more successful than they could have ever imagined, bringing along the conception of multiple bears with varying diagnosis’s known as the Bearowicz family. The bears are allowed to visit the home of a very special little girl or boy for 1 week, and for individual circumstances up to 2 weeks.They arrive with a journal and a passport in tow. Each child gets to stamp the passport and marvel at how far and wide their bear has traveled to be with them. (pretty awesome huh)?The bears hate that they have to leave after just 1 week but they are mindful that their job is very important and they have friends around the world that need them too.The bear is allowed to go almost everywhere, to schools, Dr.s appointments, surgeries and even while they are attending horseback therapy lessons. The organization is to taking suggestions on other disorders, diseases,syndromes, and disabilities but for now the bears that are making the rounds are...Pediatric Stroke, Autism, Congenital Heart Defect and Rare Chromosome Disorders, lymphatic malformation, Chiari malformation, cerebral cavernous malformation, EA/TEF and they are also working on diabetes, epilepsy, leukemia, hearing impairment, ADHD/ADD.. Their goal is to eventually have bears for all of the things that affect our children. If you would like a member of the Bearowicz family to come visit your home for a week Click Here .The organization is currently in the process of becoming a non-profit 501c3 but in the meantime has a WISH LIST Please take a moment to see if you can help out with any of the items on their wishlist. They are not expensive items and some of you may have things around the house that would be helpful to them.Traveling Awareness BearsP.O. Box 1513O’fallon, MO 63366

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Dec 1, 2011

Now I Can Photographic Documentary Book





This time of year it seems like everyone around the world opens their hearts and their wallets to help those around them. It's actually quite a beautiful thing. Part of me doesn't care that it's only during this time of year that people seem more charitable. It seems appropriate, really, that if there is only 1 time of year when we all open our hearts to more giving of our time, talents, and physical means...it would be now. It makes me happy. If you happen to be looking for a good cause in which to help or donate to, I have an opportunity for you here.


Many of you know that Samantha attended therapy at Now I Can this past Fall. It was fantastic and we will return in March 2012. While we were there, I met a photographer, Michael Ririe, who became attached to these children. He has devoted his time and talents to spreading the word, through is talent, about Now I Can ~ and our children. Most recently, he has put a book together filled with pictures and written contributions from families. It is beautiful. He's waiting to gather the funds for publication. Maybe it's 'cause my baby girl in it a few times and I actually wrote in the book...I mean, that is kind of cool...but I want this book published. I really do believe this book will make a difference. His previous work to draw attention to Now I Can was a success, but he's turned it up a notch with this book. In creating a book of professional photographs that showcase these children...their beauty, spirit, and drive...as well as what is written about them, we are hoping to bring more awareness and raise funds for the center -- allowing more financial assistance to families like us. We were recipients of a grant that helped cover some of the expense. That extra money made a big difference to us and insured Samantha's return to Now I Can. What if every family in need could send their child to Now I Can with some kind of financial assistance? What is the potential of this small book? It will raise awareness. It will tell the real story to future possible donors. And ALL proceeds generated will go back to Now I Can therapy grant fund. 100%. That money will go towards Sammy. It could go to your child. $1? $5? $12.75? $25. More? We have 348 "registered" followers on Kidz. What if we all donated $5? That's $1,740. Pretty cool. Anyway. Check out the link to Kickstarter -- Now I Can -- A Photographic Documentary Book and watch the video. And decide. If enough people don't support it and the book doesn't happen, your donation won't be charged. You won't "lose" a thing. We have until December 31. But if there are enough of us, and this book does happen, you could be one of the many helping families just like ours.


The video, alone, is worth a look.


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Oct 17, 2011

Sparkle Effect

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I saw this article on the ams vans blog. It made me smile, so I had to share it!



Sarah Cronk, the creator of the Sparkle Effect, a non-profit organization that helps high schools around the world create inclusive cheerleading programs, was awarded the $100,000 as part of VH1′s Do Something Award. The award recognizes teens who promote social change, and Sarah’s organization aims to help teens learn that individuals with disabilities are capable of great things. Just 18-years-old and cheerleader herself, Sarah created and coached the first inclusive cheerleading team that includes both students with disabilities and without disabilities when she was just 15-years-old!



Sarah started an inclusive cheerleading squad—the Spartan Sparkles—at her high school after noticing the struggles of her brother, who has autism, to fit in and find social outlets. Her brother was befriended by the school’s swim team captain, and Sarah saw how this simple act of inclusion changed her brother’s life for the better. A cheerleader herself, she wanted to help other kids with disabilities like her brother’s have a better high school experience and enjoy sports and other extracurricular activities that they had not been able to enjoy.



The Spartan Sparkles cheerleading squad, which performed at sports games along with the regular squad, was a huge success. In 2009, the program reached capacity, and instead of congratulating herself on a job well done, Sarah wanted to expand the program. She then created the Sparkle Effect with the goal of helping other high schools create similar inclusive sports programs for teens with developmental and physical disabilities. The Sparkle Effect provides mentors, support, training, grants for uniforms, as well as a free starter kit for schools and organizations who want to start inclusive sports programs.



Map of Sparkles Cheer Teams Across the USA



“Students at all the schools have reported that cheerleaders who are on the squads who have disabilities are being included outside of the squad,” Sarah said in a video that aired during the VH1 show. “People are more willing to talk to them at school. It puts the spotlight on their abilities rather than their disabilities.”






The Sparkle Effect now helps over 50,000 students with and without disabilities understand the importance of inclusion. The Do Something Award will help the program expand and reach even more teens, so that a new generation of people will be able to understand that abilities are more important than disabilities.

Three cheers for Sarah!


Sources:
http://www.disabilityscoop.com/2011/08/23/teen-inclusive-cheerleading/13790/
http://www.huffingtonpost.com/sarah-cronk/the-sparkle-effect-when-e_b_929193.html
http://www.dosomething.org/
http://www.thesparkleeffect.org/index.php?pg=18

Oct 12, 2011

A Dance For Hailey

Recently a good friend of Natalie’s opened a dance studio Impact Dance Co.

Meghan and Natalie have been best friends for years. Ever since Hailey was born Meghan wanted to choreograph a dance and dedicate it to Hailey.

In June, Meghan had applied for a residency program, unfortunately she was denied. I thought I would post her good intentions anyway. As a way of thanking Meghan for her efforts and hoping that someone who reads this may be able to support such a beautiful effort.



Thank you to Miss Chloe for the cutest ballet feet I've ever seen :)



IMPACT Dance company is a contemporary based dance company that strives for captivating audiences through emotion. The sole purpose of IMPACT is to initiate a change by bringing dance to the forefront and raising awareness. We want to raise awareness by magnifying what is not stereotypically accepted or touched upon as frequently as it should be. IMPACT Dance company wants to make a difference in our society by utilizing our art as a statement to educate and inspire.


What is your overall mission or dance philosophy?
Impact Dance company wants to truly make a difference by utilizing dance in every possible way we can. A few ideas the company has is to host motivational seminars and dance classes for elementary, middle and high school students, put on benefit performances, support local charities, and create pieces dedicated or inspired by certain topics, causes or diseases.

How would this program affect your company? What would this residency mean to you?
This program would give the company the opportunity to truly experience a life changing event personally, mentally and physically. This residency will give us the opportunity to fully commit and focus on the creation of a new piece. Personally this residency means I will finally have the freedom to create a piece that I have been wanting to create for the past five years. This piece is very personal and I did not want to commit to it unless I knew I could focus on it whole heartily and could train my dancers mentally and emotionally for the subject.

This piece has been a dream of mine since the birth of one of my closest friend’s daughter, Hailey. Due to complications at birth, Hailey was diagnosed with Cerebral Palsy. There are many emotions surrounding this topic from the outside point of view, but I want to travel deeper and showcase the story of Hailey, her family, and her parents. I want to live the emotional roller coaster their journey has brought them to, celebrate their triumphs, their failures, and their happiness all through what I know best, dance. Their story is truly inspirational and it needs to be told.

How long of a Residency would you need and why?
We would need four weeks to accomplish the tasks I am setting up with this piece. For the first couple of rehearsals I would invite Hailey and her family to come interact with the dancers. First, I would ask the parents to prepare what they would want to share about their journey. Explaining their day to day life, hospital visits, school trips and activities they do as a family. Secondly I would arrange an informative meeting where the dancers can ask in depth questions regarding emotions so they can find a way to connect while they begin movement with the piece. Lastly I want to have the opportunity to watch Hailey. By teaching her dance moves, and observing her and her mechanisms we would be using the way she crawls, sits, smiles, laughs, and plays to inspire movement we would incorporate into the piece.

How would you utilize the studio space?
The studio space sole purpose would be to create and establish the choreography inspired by Hailey. The first week will be dedicated to the process of meeting the family. The second week of rehearsal we will incorporate movement from Hailey, finding a medium between what our bodies can accomplish while showcasing what we learned or were inspired by. The last two weeks would be used to finalize choreography and finish the piece.

Do you have access to discounted rehearsal space elsewhere?
Currently we do have access to discounted rehearsal space. However the only setback is that the space is very small. I would be willing to utilize the space to save money, but I know myself and my dancers would love to be able to use a bigger space for the last week of the residency.

How do you plan to participate in the Community event? How does this connect with your company mission or experience?
For the community event Impact would like to host a movement workshop for children with Cerebral Palsy and other forms of debilitating sicknesses followed by a performance of the piece created with the residency. The community event would convey Impact Dance company’s mission statement perfectly. This would give us an opportunity to reach out and connect to the Cerebral Palsy community, raise awareness about Cerebral Palsy and perform with the intent to inspire and show support to the families of not just Cerebral Palsy children but also the families that have children with other debilitating sicknesses such as Multiple Sclerosis and cancer.
Meghan thank you from the bottom of my heart for being passionate about Hailey’s Dance. Good luck with your dance company and to all of your future endeavers.


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Oct 10, 2011

Full Heart

I was asked to write a letter to the donors at Now I Can, explaining our experience.


To Whom it May Concern:


When we stumbled across Now I Can, it felt right. I frequently follow my feelings -- but this feeling required more money than I usually spend, so I did my research. And our decision was made. We weren't sure how, but we were getting our Samantha to Utah.


After we decided, we scheduled her session, and miracles began to happen. The finances appeared little by little. A place to stay opened up for us (we are from California). And everything just fell into place.


Upon arriving and beginning therapy at Now I Can, those tiny miracles continued. Samantha is 5 years old with extremely tight muscles (high muscle tone). In just 3 weeks, I've seen more improvement in her body and body control than I've seen in over a year! She stands with increased stability now, flat on her feet a majority of the time. She stands straight up instead of with her back hunched over. And she extends her arms out further than she once could.



Since being here, I've seen many physical changes in her, but I also see a proverbial door opening up for her as she gains control and learns to master her body. What an incredible gift of increased quality of life. With each stretch and movement here, her future opportunities are increasing. She gains better knowledge of the world around her as she gains the proper mobility that enables her to explore it. Again, what a gift.


Please take it most sincerely when I say Thank You. Thank you for supporting Now I Can -- a seemingly small facility that brings about incredible change.


Sincerely,
Jeanette G.

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Oct 1, 2011

Tiny Light

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The Tiny Light Foundation is a non profit organization that provides professional photography for children and families in Canada that have been faced with a life altering diagnosis. They provide families with the lasting memories through the amazing art of photography.



This is their song.





Tiny Light

The tiny light that shines from your heart
It shines with love like it has from the start
My precious child you are so pure
The fight you fight is more than one man can endure

The tiny light that shines from your heart
Just like the sun it will never lose it's spark
My precious child I have etched you in my arms
To not forget just how far you have come

This world can be unclear
When young hearts fill with fear
All life's tough moments they will always pass
And those tiny little hearts will grow up so fast

The tiny light that shines from your heart
It guides the way down a path of hope and love
My precious child on the day you were born
A love was made that will never be torn




credits from Tiny Light, track released 10 May 2011
Cory Woodward - Vocals, Ukelele, Synth,
Available for purchase here.

Her Very Own Song

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The Songs of Love Foundation is a nonprofit organization dedicated to providing personalized songs for children and teens currently facing tough medical, physical or emotional challenges, free of charge.

(Songs of Love Foundation was featured on 60 Minutes with Dan Rather. Watch Here!)

I had known about the foundation for quite awhile, but wanted to wait until Chloe got a little older and we could understand her personality better so she could be better captured in a song. Then it suddenly hit me -- it was time for Chloe to have her song. So we sent in an application. I was shocked when we got it in the mail! It came so quickly AND it is perfect! It is SO Chloe!!! Enjoy....



Most of the lyrics are very Chloe-specific, but I thought the last verse could apply to any special kiddo!....



You're amazing just the way you are
Zip-a-dee-doo-dah!
Never, ever, ever give up
Our little girl with big dreams
Celebrating little things
Chloe Gayle, remember - we love you.
We love you!




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Sep 30, 2011

Walk Now for Autism Speaks


5k's are going on around the country to raise funds, awareness, and support for Autism. I know that many of our children fall in the spectrum. If you'd like to support an event near you, go here to find out the details!

Sep 14, 2011

4P Aussie Kidz

I was so impressed to hear that Ellie's mom, Melissa, started an organization to help others. I had to share a little about the organization as well as a touching video.....



4P Aussie Kidz is the only Australian organization that exists to provide financial assistance and support to families with children who have Wolf Hirschhorn Syndrome (WHS)

Wolf Hirschhorn Syndrome refers to a condition that is the result of a genetic error on chromosome 4. It is caused by a deletion of genetic material near the end of the short (p) arm of chromosome 4. This chromosomal change is sometimes written as 4p-.







If you are in the area and can support their October 22 event, go here to purchase tickets.

Jul 18, 2011

Inspiring Room Makeovers

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by John Kaiser of Guideposts

I am a huge fan of the TV show Extreme Makeover: Home Edition. Partly because I’m a commercial interior designer.

The show, which provides remarkable free home renovations to families in need, tugs at my heart. Four years ago an episode did more than that. It gave me extreme inspiration. It featured a boy who used a wheelchair. His house, once a minefield of obstacles, was made safe and accessible, and his room was transformed into a fantasy land. “For me?” he squealed. My wife, Susan, and I got choked up. I wish this show had been around for Lauren and John, I thought.

Lauren and John, the children of two sets of our friends, were adults now. But as kids, Lauren battled kidney failure and John suffered a traumatic brain injury in a car accident. They spent months stuck in their rooms, recovering. Rooms that felt like hospital wards.

I pictured a team of people from right here in town making over rooms for children like them, helping them feel less like patients and more like, well, kids! And we could redo their siblings’ rooms so they wouldn’t feel left out.

I didn’t tell anyone about my idea. I mean, it was pretty far-fetched. Sure, I’m an interior designer, but it’s not like I have the resources of a hit TV show — or its budget! Still, that night I prayed, Lord, show me what I need to do.

A few months later Susan and I went to our church study group. “I have an idea that I’ve prayed about and I need your help,” I blurted out. What are you doing? I thought. You haven’t even told Susan yet. Before I knew it I’d told them the idea. I looked over at Susan and she smiled.
Story continues below ad

I called Lauren’s and John’s parents. They were delighted to advise us. I told everyone I knew about the idea. A few said they’d volunteer, but not enough to get things off the ground. One morning I said another prayer, Lord, thank you for clearing the way, but we’re going to need more help. Almost immediately my phone rang off the hook, as if everyone decided to help all at once: interior designers, architects, and social workers and pediatricians who would help us find the children most in need. In February 2008 we became a registered nonprofit called Welcome Home Angel, Inc. Of the 12 members of our church group, four joined the board of directors and the rest volunteered their help.



Since then we’ve redone 10 rooms for local kids. Kids like Gage, an 11-year-old with muscular dystrophy who loves motorcycles. “Holy Moly!” he shouted when he saw his Harley-Davidson-themed room.

His hospital bed had Harley logo sheets. Flames streaked across the walls. His bathroom had a wide space under the sink to fit his wheelchair, and grab bars so he could lower himself into a shower seat. On his nightstand stood a framed photo — Gage in the sidecar of a Harley taken during a ride we’d set up with a motorcycle club, the Carolina Coast Hogs. And for Gage’s younger brother, Drake, we made a football-themed room.

Gage spun his wheelchair around and grinned. “It’s awesome!” he said. I choked up again.

Even more awesome than on TV.

Jul 11, 2011

HopeLights

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American Express OPEN is teaming up with Facebook to give five small businesses a Big Break -- a Facebook business makeover and $20K to grow their business with social media. Over 11,000 entered and now it's down to 10 finalists.

Meet Big Break Finalist HOPELights from Plano, TX.

HOPELights prints customized magazines for kids with special needs and builds communities for their families. The goal is building confidence in young readers by making complex messages simpler. Think HOPELight Media deserves to win the Big Break? Vote now at http://www.facebook.com/ShopSmall.

Jun 15, 2011

The House That Love Built







“The House that Love Built”

The Ronald McDonald House of Western Michigan
Their mission is to provide a “home away from home” for families of children and youth
seeking medical treatment.

As I write this post I am sitting on the front porch of The Ronald McDonald House. It’s a beautiful warm summer night in Michigan, I am feeling extremely relaxed and blessed that I am able to spend the last week of Hailey’s Conductive Education session with her. Thank you to everyone who helped to make this trip a reality. We are very proud of Hailey for all of the hard work that she is doing, and the progress she is making.

This is the house where families meet
to continue their lives, to eat and sleep.
to find their strengths and dry their tears,
to look forward with hope to better years.

Bricks and mortar seldom reflect the true nature of a house. For that transforms a house and makes it a true home, it is not the structure itself, but the love and resilience of the family who finds comfort within. The staff and volunteers here are some of the kindest people I have ever met. Their compassion is genuine and they are happy to help in any way they can. Donated goods, services and volunteer assistance help keep expenses down. The house is extremely organized. It sits on 5 beautiful acres with a walking path, picnic tables, children’s playhouses. It has 17 bedrooms, a kitchen that has four kitchenettes, it has a recreation room, laundry room, dining room indoor play room and great room. I’m sure I have missed a few things. While we were there the house had many different donations of food. The Olive Garden brought food in one night, Starbucks contributes regularly as well as random outside contributions. They offer a shuttle service that can take you to Drs. appointments, to the Conductive Learning Center etc. One of my favorite things is when they bring in therapy dogs!

Occasionally we have thought about a therapy dog for Hailey, but only time will tell if she will benefit from one. In the mean time we can still appreciate and enjoy them. When you stay at the RMDH you get free passes to some of the local Museums, fitness centers and even a zoo.

The suggested contribution is $25 dollars a night , but no one in need is ever turned away because of an inability to pay. If you are considering sending your child to the Conductive Learning Center or if you have to travel a long distance to take care of your child’s illness, I would highly recommend staying at a Ronald McDonald House, currently there are 297 houses in 30 Countries and Regions.

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May 2, 2011

Free Wheelchair Mission

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This story about the free wheelchair mission most certainly made my day. I hope it makes yours too!



Engineer Don Schoendorfer took a trip to Morocco and saw a beggar who had lost the use of her legs drag herself across the road while everyone around ignored her. The image stuck with him.

Several years later he moved his family from Boston to Orange County “which is where you go when you want to make a lot of money,” he said.

He believed in God, but religion was not a part of his daily life. After struggling with his oldest daughter’s bulimia for 3 years, the family returned to their religious faith.

In 1997, Schoendorfer sat through a sermon at his church that forever changed him. The sermon was based on a biblical parable about a rich man who spends his life building bigger grain silos but dies before he can enjoy the wealth he has stored.

He began tinkering away in his garage with plastic lawn chairs and bicycle wheels. His wife, although supportive, soon tired of his creations cluttering the home. His peers thought he had gone off the deep end.



A year later, Don now runs the Free Wheelchair Mission, a faith-based nonprofit that has given away nearly 500,000 wheelchairs in 77 developing nations. The organization has grown from a volunteer effort to a nonprofit with a staff of 18 and a $6.5-million budget.



Schoendorfer says he has relaxed and learned to trust in God.

“I used to live by goals, I used to live by plans, and very elaborate goals and backup plans,” he said. “Now I feel like I’m more reacting and keeping an open mind and keeping a strong faith.”






To learn more about the Free Wheelchair Mission, visit their website at http://www.freewheelchairmission.org.

Apr 19, 2011

Autism Resources

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I recently found out about this amazing organization, Music for Autism. I would explain it, but really, they do a better job. Here is a quote from their website.

"Autism is a complex developmental disorder that affects socialization and communication and causes repetitive and stereotyped behavior. These impairments
are also often associated with narrow interests that may lead to special abilities. Autism is a spectrum disorder that affects individuals to a varying degree. Experts estimate that autism occurs in 0.6 percent of the population and affects four times as many males as females.

"Autism was first reported in 1943 by Leo Kanner. In his classic paper, Kanner presented eleven case studies of children with autism and repeatedly mentioned musical abilities and musical interest in six of the children. Since then, researchers have systematically studied the musical processing abilities of individuals with autism, and have shown that while their language may be deficient, these individuals may process music in similar ways to typically developing individuals.

"The existence of a small number of musical savants with autism is yet another fascinating connection between autism and music.

"The goal of Music for Autism is to expose those with autism and their families to high quality, professionally performed music in an environment where individual
differences are celebrated and where no one will be embarrassed. Families are greatly challenged to find programming that is appropriate for their family members with autism who may exhibit behaviors that are unpredictable. Families say that Music for Autism's unique and interactive “autism specific” musical programming greatly enhances their quality of life. In addition, since all U.S. concerts are free for those with autism and their families, anyone affected by autism, irrespective of socioeconomic status, is able to experience Music for Autism's unique, interactive programming."


Go here to see a calendar of upcoming events in the U.S.


~~~

I also recently found out about Book for Children with Autism, a place to find and suggest books for children with autism, and to discuss autism and reading comprehension. There are some great suggestions and resources on that site as well!

p.s. How cute is this free printable from Today's Top 20! Just leave a comment on this post and she'll give you the pdf if you want this!

Do you have any resources you'd like to share? Please leave a comment!

Apr 6, 2011

Jaxson's Blankies

Jaxson's Blankies for Babes


These blankies are for kids of all ages with life threatening illnesses. No child will be denied a blankie, so don't be afraid to fill out a request. It takes at least two weeks to find material, have it stitched, and then crochet around the edges. It may take longer if we have a lot of blankies to do.







Mar 16, 2011

An Elevating Story

by Yvonne Abraham of The Boston Globe.

Everybody was waiting for Rudy.

On Tuesday night, Patty and Rick Parker were in their cramped kitchen with their 8-year-old son Ben. Dinner was over. Bedtime was near.

Ben’s twin brother, Sammy, lay on a cot in the narrow hallway just outside the kitchen. Unable to see or speak or control his limbs, he coughed or let out a little moan every now and then. Rick and Patty took turns feeding Sammy, who has cerebral palsy, through a stomach tube. He cooed when they kissed his face or stroked his cheek, and when they cooed back, he opened his mouth into a wide, joyful O.

A few feet away was the narrow, winding stairway that is the family’s biggest burden lately.

Which is where 17-year-old Rudy’s simple, life-changing act of kindness comes in.

Until recently, Rick carried Sammy up those 14 stairs to his bedroom each night. But a few months ago, Rick had major surgery for a life-threatening heart condition, and now he can’t lift much at all, let alone a 75-pound child.

“We thought Rick was going to die, and we were terrified,’’ Patty recalled. “We knew right away he had to stop carrying Sam.’’

Patty couldn’t carry him, either. Desperate, she called her pediatrician, who put her in touch with Elizabeth Paquette, the nurse at Malden Catholic High School. Paquette said she’d take care of it. The boys at Malden Catholic are taught to embrace service: She’d find plenty of students to help.

Rudy Favard was the first kid Paquette came across after that call. At Malden Catholic on a partial scholarship from the Catholic Schools Foundation, this son of Haitian immigrants was one of Paquette’s treasures. The linebacker, cocaptain of the football team and honor roll student was always willing to lend a hand.

The nurse had barely begun telling Rudy about the Parkers before he said he’d help. Another boy would fill in for Rudy on game nights. And a third boy was on standby in case neither of the others could make it.

When Paquette brought the boys to meet the family for the first time, the Parkers cried.

“Just to see this outpouring of people,’’ Rick Parker began, his eyes welling at the memory. “To see that these people were willing to put their hands and feet to what they believed. . .’’

It is profoundly isolating to have a child as severely disabled as Sammy. It’s hard even for well-meaning friends to understand the immense strain of his all-consuming needs. Patty and Rick — who tried for 8 years to get pregnant before Ben and Sam were born — grieve for one son’s lost potential every day, even as they struggle to give the other as normal a life as possible.

“You plan for your child’s future, but it’s hard to do that for Sam,” Rick said. “You have this pathway he should have taken, and the pathway he did take, and you don’t want to look at either one.”

And over it all hangs the certainty that Sammy’s condition will never improve, even as he grows up.

Five nights a week, into this world of love and hurt comes Rudy. (A nurse assists on the other nights.) In the months the family has known him, the teenager has become not just a help with Sammy but a salve for their pain. He and Rick talk football, Patty quizzes him about girls, and Ben usually sits as close to him as possible. Often, Sammy trembles with excitement as Rudy picks him up.


“They’re like family,” said the shy senior. It goes both ways: The Parkers were on the field with Rudy’s mother the night the school honored its senior football players.

On a recent evening, a reporter watched as Rudy greeted the Parkers and went over to Sammy, gently lifting the child’s arm and sliding his hands under Sammy’s back. He held the boy close to his chest, and as Sammy made his joyful O, Rudy navigated the stairs.

The contrast was stark: the young man preparing to go out into the world carrying someone who never will. It’s a comparison lost on nobody, least of all Rudy.

“Can I ask you something? Is it okay if this article is more about Sam than me? He’s done more for me than I’ve done for him,” Rudy said later. “There are times when I don’t want to go to practice, and then I look at Sam. By God’s grace, I can do what I’m doing, so I should keep it up. I’ve never been one to complain a lot, but just seeing Sam reaffirms everything, you know?”

The Parkers won’t have Rudy for long. He’s been accepted to four colleges; his choice depends on financial aid and football. The family hopes to be in a bigger home—with no stairs—before he leaves.

Until then, Rudy will bound up to this modest house. He’ll carry Sammy up to his room. Then, for a little while, he’ll carry the Parkers somewhere better, too.

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