There are many ways to get involved:

1) Attend a monthly meeting and meet other MLH members

2) Request one-on-one support

3) Give back

We want you to know that we are here.  For you.  We’ve been there!

Learn more today!!

Join us Wednesday, September 8, 2010: 5-7:30pm at the American Family Children’s Hospital.

The cornerstone of Mended Little Hearts is our visiting program.  As experienced parents, we have the unique ability to connect with families while they are in crisis.  Mended Little Hearts is working closely with the American Family Children’s Hospital to ensure that our visiting program is a quality experience for all.

Mended Little Hearts requires all visitors to be certified in order to participate.  The first step in this process is to comply with the hospital volunteer requirements.  Join our new team of visitors on Wednesday, Sept. 8th, 5-7:30 pm as we participate in the hospital volunteer training program.  If you are in need of childcare, please contact amybasken@gmail.com to make arrangements.

You must register to participate by contacting AFCH Volunteer Services at (608) 263-6046 or e-mail volunteer.services@uwhealth.org. Please let them know your name and phone number and that you would like to attend the Sept 8th orientation.

We will follow this training with a brief Mended Little Hearts orientation to be scheduled at a later date.

American Heart Walk

Join us on Saturday, October 23, 2010

Mended Little Hearts of Southern Wisconsin works closely with the American Heart Association to raise awareness and advocate for “the littlest heart patients of all.”  The Heart Walk is another great opportunity to raise awareness among family and friends, but also among the heart community.

Whether you want to raise funds, or simply raise awareness, join us in your red MLH t-shirt on Saturday morning for a quick stroll through the park.  There will be kids activities, and lots of smiles!  (Don’t have an MLH t-shirt?  We’ll get one for you at 1/2 off if you are participating in the walk, we have kids sizes, too!)

Once again, Mended Little Hearts is listed not as a team, but as an organization. If you are creating a team for the Heart Walk this year, consider registering under the company name of Mended Little Hearts.  You get all the benefits of participating as a team, while Mended Little Hearts gets the recognition as an organization. Already registered your team?  You can still move under the MLH company name if you would like.  Ask how: madisonwi@mendedlittlehearts.org.

You can register as a team or an individual – Here’s How

1. Go to:  www.madisonwiheartwalk.org
2. Select Register and agree to the waiver
3. Select Start a Team. If you are coming as a family or a group of friends, it helps to start a family team, so you can register each member under your team.  If you are coming by yourself, consider joining an existing team or create your own to benefit from participating under the Mended Little Hearts Company status.
4. Choose – New Team under Company Name: Mended Little Hearts
5. Complete the application – note that for the team captain, half way through it switches from Team registration to Personal registration.  This can be confusing.
6. To add more individuals to your team, log-out, go to register and have them Join at team.

Again, this is a fund-raiser for the American Heart Association who has shown great generosity to Mended Little Hearts of Southern Wisconsin.  However, it is also an excellent awareness activity – You DO NOT have to raise any funds to participate.

Teen Night Out

Calling all teens and their families… as a teenager with a congenital heart defect we understand there are unique circumstances you are dealing with.  Come hang out with other teens with CHD and learn that you are not alone!

Stay tuned as we work out the details of time and date.

4^th Annual CHD Symposium

July 16 & 17, 2010, Madison, WI

Register Today!

Parents and Caregivers, come learn and network with other families of children with Congenital Heart Defects. Learn the latest in medical advances, how to navigate the insurance maze, growing-up with CHD and much more…

Friday, July 16, 6:30 p.m. – 8:30 p.m., Ice Cream Social, American Family Children’s Hospital

Saturday, July 17, 2010, 8 a.m. – 4:30 p.m., Conference, Monona Terrace and Convention Center

Presented by:

Mended Little Hearts and Saving Little Hearts

American Family Children’s Hospital and the UW Department of Pediatrics

With Additional Sponsorship from:

Kohl’s, St. Jude Medical and the American Heart Association

Speakers and topics include:

• “New Hope for Families,” J. Carter Ralphe, MD, Pediatric Cardiologist, American Family Children’s Hospital,

Dr. Ralphe will share a general perspective on new trends in treating CHD and an update about incorporating these advances at AFCH.
• “Imaging and Beyond,” John S. Hokanson, MD, Pediatric Cardiologist, American Family Children’s Hospital,
• “Neurocognitive development of children with CHD,” Peter Ferrazzano, MD, American Family Children’s Hospital
• “Moving On… Transitioning from the Pediatric to the Adult Care Team,” Darcy Pfiel, NP, Craig Becker, Senior Clinical Social Worker, UW Hospital & Clinics, This session will discuss the philosophy regarding transition, as well as provide a checklist for patients and families to prepare for transition from pediatric to adult care.
• “What Health Care Reform Means for Families with Chronic Illness,” Jessica Gilkison, JD, Patient Advocate, UW Center for Patient Partnerships
• “Communicating with the Schools” Rachel Gallagher, MS, CPNP, NCSN, DPI School Nurse Consultant Ms. Gallagher will briefly describe the educational accommodations available to students in the public school system, school nursing services, Section 504 of the Rehabilitation Act and Individual with Disability Education Act.
• “Advocating for your child, a parent’s point of view,” Jodi Lemacks, JD, National Program Coordinator, Mended Little Hearts
• “Congenital Heart Defects – A Life-long Disease,” Amy Verstappen, CEO, Adult Congenital Heart Association
• “Sending your child to school,” Deb Gerrits, mother of child with congenital heart defect, Mended Little Hearts
• “Coping with the Stress of Child with Chronic Illness, Guided Meditation,”  Karen Allaire, American Family Children’s Hospital This presentation will provide an introduction to Mindfulness Based Stress Reduction with a short interactive lecture and guided experience of one of the techniques.

• Cost: Because of the generosity of our sponsors, there is no cost to attend this conference.
• Meals: Some light snacks will be offered at the conference, however meals will be on your own. You are welcome to purchase a boxed lunch on site at the conference or go out for lunch at one of the many restaurants that are within walking distance of Monona Terrace. We apologize, but no outside food is allowed at the Monona Terrace Convention Center.
• Childcare: Complimentary childcare will be provided on site. Please be sure to let us know in advance if your child has any special needs, food allergies, etc.
  
• Overnight Accommodations: Stay over night on Friday, July 16 or Saturday, July 17 at the new Hyatt Place in Downtown Madison.   Book online at: http://hyattplace.lodgeworks.com/?id=MEN Please see below for details.
• Conference Parking: Complimentary parking will be available in the Monona Terrace Ramp. There are many events happening in downtown Madison on Saturday morning, July 17 so please allow for plenty of time to park. For those staying overnight at the Hyatt Place, parking is available at the hotel and there will be a complimentary shuttle to the event.
• Register on-line by Wednesday, June 30.
  
• For more information, email or call: Amy Basken at madisonwi@mendedlittlehearts.org or (608) 370-3739

Click Here to Register Today!

Ice Cream Social

Friday, July 16, 2010

6:30-8:30 p.m.

American Family Children’s Hospital Lobby

1675 Highland Ave.
Madison, WI 53792

Map & Directions

Complimentary parking will available in the American Family Children’s Hospital Parking Ramp

Conference

Saturday, July 17, 2010

Monona Terrace Community and Convention Center

One John Nolen Drive
Madison, WI 53703

Map & Directions

Schedule

8 a.m. Registration & Networking

8:45-11:15 a.m.     Medical & Health Care Focused Educational Sessions

Noon – 1:30 p.m. Lunch (pre-paid box lunch or on your own)

1:30-4:30 p.m. Personal & Family Focused Educational Sessions

Accommodations

Hyatt Place Madison/Downtown

333 West Washington Avenue
Madison, WI 53703, USA
Phone: +1 608 257 2700 Fax: +1 608 257 1660

www.hyattplacemadisondowntown.com

To book your reservations at the hotel

• The room rate is $99 per night, and in order to book the hotel at this rate, you must make your reservations by June 16, 2010.
• Please call 1-888-492-8847 or 608-257-2700, or to book directly online visit http://hyattplace.lodgeworks.com/?id=MEN
• Make sure to register mentioning that you are a participant in the Mended Little Hearts Conference.
• Maps & Directions to Hyatt Place Madison/Downtown Ideally situated in the heart of downtown, the Hyatt Place Madison/Downtown is surrounded by museums, theatres, restaurants and shopping.

Hotel Amenities:

• The Madison hotel is within walking distance to the Monona Terrace Convention Center.
• There will be a shuttle available in the morning for conference participants to assist with transportation to Monona Terrace.
• Complimentary Wi-Fi available throughout the hotel.
• Complimentary continental breakfast daily.
• $10/day covered parking available.
• All Hyatt Place hotels are smoke-free.

Driving Directions To Hyatt Place

• Directions from Dane County Regional Airport (MSN): Head north on International Lane and follow toward Terminal. Turn left on Packers Avenue/ WI-113 South. Continue to follow WI-113 S. Turn left on North 1st Street (WI-113 S). Turn right on East Washington Avenue/US-151 South. Continue to follow E Washington Ave and turn right on North Webster Street. Turn left on East Dayton Street. Turn left on North Fairchild Street. Turn right on West Washington Avenue. Hyatt Place Madison/Downtown is on the right.

• Directions from I-94/I-90 (Chicago/Milwaukee): From I-94/I-90, keep left to take WI-30 West toward Madison. Merge onto East Washington Avenue toward State Capitol. Turn right on North Webster Street. Turn left on East Dayton Street. Turn left on North Fairchild Street. Turn right on West Washington Avenue. Hyatt Place Madison/Downtown is on the left.
• Directions from I-94/I-90 (Minneapolis/Wisconsin Dells): From I-94/I-90 East, merge onto US-51 South via Exit 132. Turn right on East Washington Avenue/US-151 South. Continue to follow East Washington Ave and turn right on North Webster Street. Turn left on East Dayton Street. Turn left on North Fairchild Street. Turn right on West Washington Avenue. Hyatt Place Madison/Downtown is on the left.

Area Attractions for the Traveler- Plan to spend the weekend!

The Monona Terrace Convention Center and Hyatt Place are centrally located in Madison. They are in walking distance to the Capitol Square and Madison’s famous State Street – featuring over 200 unique establishments to explore. The hotel is a short distance to the beautiful University of Wisconsin-Madison campus and 5½ miles from the Dane County Regional Airport.

Weekend Events:

• State Street – Maxwell Street Days
• Farmer’s Market
• Dane County Fair
• Opera In the Park, Garner Park
• Paddle & Portage

Free Sites You May Want to Visit:

• State Street
• Wisconsin Historical Museum
• UW-Madison Union Terrace

• Henry Vilas Zoo
• Olbrich Botanical Gardens
• Overture Center for the Arts
• Wisconsin Veterans Museum
• Madison Museum of Contemporary Art
• UW-Madison Chazen Museum
• Wisconsin State Capitol Tours (Meet at the Information desk, Friday 9, 10, & 11 a.m., 1, 2, 3, & 4 p.m and Sundays at 1, 2, & 3 p.m. )

For more information about Madison visit these websites:

• Greater Madison Convention and Visitors Bureau: http://www.visitmadison.com/
• Isthmus Daily Page: http://www.thedailypage.com/
• Madison’s Central Business Improvement District: http://visitdowntownmadison.com/
• Monona Terrace: http://www.mononaterrace.com/

I wanted to share some of the writings that have been making the internet and email circuit.  “The Day I Became a Heart Mother” and “Welcome to Holland,” speak directly to many parents of children with CHD.

Let us know what inspires you!

The Day I Became a Heart Mother

By Stephanie Husted

One day my world came crashing down,
I’ll never be the same.
They told me that my child was sick.
I thought, “am I to blame”?
I don’t think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I’ll even use that feeding tube.
My child must survive!

Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child’s bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can’t know your ways….no matter how I try.

And yet, I trust you hold his life, and guide us through each day.
My mind says savor each moment he’s here,
but my heart begs, “PLEASE let him stay”!

From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, “will he be alright?”, to watching him reach out his hands.
With every smile my heart just melts, despite life’s harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It’s the door to his beautiful heart).
God must have known how much I’d love him (Just as He loved him from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day…….
When I became a “Heart Mother”.

“Welcome to Holland”

By Emily Perl Kingsley, 1987.
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”  But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very very significant loss. But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

If you haven’t already, please let us know by the end of today if you are able to join us for a rare photo opportunity with the Governor. Please RSVP to Luke Rollins as soon as possible at Luke.Rollins@heart.org. Questions? Contact Amy at madisonwi@mendedlittlehearts.org.

Choose from one of the pre-designed Heart Bundles and 20% of all purchases will go to Mended Little Hearts of Southern Wisconsin.  *Note that bundle price already includes shipping.

It’s easy to order: simply contact Susan Gardner via email stampwithmesusan@hotmail.com or by phone 608-850-6334.

Click here to view the Heart Bundle and place your order today!
If you are familiar with Stampin Up, now is a great time to re-stock your supplies, or place that order you’ve been dreaming about!  Simply check out their catalog and create your own bundle.

Heart Party

Saturday, February 13th, 3-6pm.

To recognize CHD Awareness Week, Mended Little Hearts of Southern Wisconsin is hosting a Heart Party.  Bring the entire family to the American Family Children’s Hospital and enjoy munchies, crafts and games.  This is a wonderful opportunity to catch up with old friends and meet new ones.  Please contact Amy for more information or if you’d like to attend.

What’s Happening in Wisconsin:

January 28th: Tentative Date for House vote on CHD Awareness Week resolution.  Contact madisonwi@mendedlittlehearts.org if you are interested in attending the vote.  The American Heart Association has worked with Mended Little Hearts Wisconsin to make this a reality!  Thanks, Luke!  Several Mended Little Hearts members attended last year and were recognized by there local Representative.  What an incredible way to raise awareness!

The Governor has signed a proclamation for CHD Awareness Week. You can ask for your own .pdf copy by sending an email to: donna.oconnell@wi.gov

One of our members is promoting CHD awareness at her local Jump Rope for Heart where they are featuring her son.  Way to go Kelly Lee!

February 13th: Mended Little Hearts of Southern Wisconsin will be hosting a Heart Party at the American Family Children’s Hospital from 3-6pm.  Bring the entire family for food, friends and fun!

February 14th: Another member family is holding a party to raise funds for a Playroom of Hope. Matt and Jaime Wallace are hosting a party in honor of Nevaeh Rae on February 14th, 2010, 1pm – 6pm.  Please visit their online invitation for more details:

Several others are visiting the schools and local community groups to spread awareness.  Last year, the American Heart Association worked with MLH of Southern Wisconsin to create this great awareness document. You can print it or use some of the wording to create your own.

Be sure to let us know what you are doing so we can celebrate together!

We are winning the fight against Congenital Heart Defects!

(Last updated 01/25)