888-533-4443 Info@FamiliesforHoPE.org 1219 N. Wittfield Street, Indianapolis, IN 46229

Exhausted

For the exhausted mom who hides a few minutes to cry in the bathroom…

For the mom hidden in the bathroom, because she needs a few minutes of tranquility while slipping tears from her eyes.

Walk Around The World

Join HPE families for a Walk Around the World!

Did you know that Families for HoPE has had contact with HPE families from over 50 countries around the globe? A universal refrain we hear repeatedly is the need to raise awareness about holoprosencephaly and help others find HoPE.  As HPE families, what can we do to share our HoPE and holoprosencephaly with the world?

Families for HoPE invites all HPE families to host a Walk Around the World in your local community to raise awareness of holoprosencephaly and to raise funds for the mission of Families for HoPE. (You can also run, bike, swim, dance, roller skate, ride a horse—whatever you enjoy doing with family and friends.)

1. Set a date. We suggest that your walk take place between the dates of April 15 and June 15.

2. Set a location. Walk or hike in a local park, walk in a gymnasium or around the track at your local school. Be sure you have permission to walk in that location prior to your event.

3. Set a goal. Determine how much money you would like to raise and how far you are willing to walk.

4. Recruit walkers. Ask your family and friends to walk with you, and ask them to invite their family and friends to join the fun and support HPE awareness. (Invite scout troops, classmates, co-workers; hang a flyer at the gym, at school, at work, at church, at Weight Watchers.)

5. Use Facebook. If you use Facebook, create an Event on Facebook to help advertise your walk. You and your walkers may also create a Fundraiser to collect donations at: https://www.facebook.com/fund/holoprosencephaly/

6. Inform Families for HoPE. We can help promote your event on our website and social media accounts. Also, Families for HoPE can search our database and reach out to other HPE families in your area and inform any of our donors who are in your area as well.

7. Share your story. Contact your local newspaper or television news channels who may be interested in covering your walk as a human-interest story.

8. Take photos at your walk. Share them on social media, and be sure to tag the city and state, or country where you are walking. Let’s flood Facebook, Twitter, Instagram with all of our walkers and let’s see how far and wide our HoPE can reach around the world! Use hashtag #HoPEwalk2019

9. Collect and submit donations. In addition to a Facebook fundraiser mentioned in #5 above, donations from your walk may be submitted to Families for HoPE via online donation at www.FamiliesforHoPE.org. Checks may be payable to “Families for HoPE, Inc.” and mailed to Families for HoPE, Inc., 1219 N. Wittfield Street, Indianapolis, IN
46229, USA. Please convert all cash to a check or money order.

Funds raised helps Families for HoPE continue its mission to serve our HPE families through the following:
1. Distribution of information and educational materials about holoprosencephaly
2. Conduct Family Conferences on Holoprosencephaly
3. Networking and support through social media platforms
4. Medical information collaborations with The Carter Centers for Brain Research in Holoprosencephaly
5. Parent-to-parent support program
6. Sponsor special events
7. Medical outreach

For questions, please contact Becky Wilson (Jack’s mom) at Becky.Wilson@FamiliesforHoPE.org or Families for HoPE at
info@FamiliesforHoPE.org

Click the links below to download this information and a pledge form you can use to help collect donations.

Walk Around the World Announcement
Pledge Sheet for Walk Around the World

What HoPE means to us

What is it really…this HOPE? And why is it so important?

Hope is something we can feel, but hope is also an intentional choice.

Definition;
hope  /hōp/
a feeling of expectation and desire for a certain thing to happen.”he looked through her belongings in the hope of coming across some information”

synonyms:  aspiration, desire, wish, expectation, ambition, aim, plan, dream, daydream, pipe dream

My Amazing life, at least it is to me!

By Heather Rinard

The blades of the grass softly whispered their song in my ear, as I laid sprawled out on the checkered cloth, enjoying our teddy bear picnic. Momma made our childhood magical. From tea parties in the garden, family night games of drawing in the dark and Red hots in our hot cocoa while we stared through the skylights waiting to see a glimpse of Santa’s slay.

Daddy read every book series out there in the 80’s to my baby sister and I. You see Little House on the Prairie was my favorite. My momma fixed My sis’ hair like Laura Ingalls and I always looked liked Nellie Olson. I guess that could be why it was recommended that I revisit kindergarten for the second time. To learn better social skills. Apparently I thought I was the teacher.

That same year my older sister Christie was married in March. I was dripping in cream lace and peach flowers. It snowed that morning.

Now there is only 3 of us siblings at home. By the time I was 10 my brother moved on and I became the oldest.

I debated my way through jr high. Danced on the hearts of many in drill team and in my senior year was captain of the cheerleadering squad.

The van was bulging at the seems. My Nellie belle, a 71 VW bug, was in tow behind. Off we went to Southern California from suburbia, conservative Idaho. Nothing could have prepared me for that eye opening experience into the world. I graduated co-valedictorian with a degree in Interior design.

I tempered with fate, falling for business in front and party in the back, criminal boy.

4 months later pregnant and married. Then 4 years later contemplating suicide and drowning in depression. I tidied up and threw away the debris. My little boy, Gavin and I had a vibrant new beginning.

My heart flutters, swooning over the freckled faced red head. Was it Love at first sight? Matt and I met on June 9th, a month later at minor league baseball game I was wrangled into playing a game on the field. Guess what’s in the box! The last box was a ring, Matt was on bended knee in front of a crowd of thousands professing his never ending love to me. A month later we were married in a funeral home. We drove away hearing the clanging of tin cans behind the hearse.

Shortly after Samis 2nd birthday the Economy tanked and we moved half way across the states to Texas. The next to come was my Izzy bug. Now there’s 3. We were happy and fulfilled. Life was planned out, little did I know that God had other plans. After a failed vasectomy, we were expecting our 4th child.

I stood there knowing that was the last time I would see my daddy. His raspy voice said I love you and drive safely. 26 hours later we pulled into the driveway. At 11pm the call came in, daddy was no longer in pain. We honored daddy by naming our 4th child after him, Charliedawn.

Early Wednesday morning my husband and I were crammed on a small bench in the NICU. The sun filtered in warming the ice cold room.

The room became a blur, my head was spinning and the tears stung my cheeks. Words were spewing out of their mouths like lava hitting the ocean; vegetable, no quality of life, will NEVER know who you are and won’t live past 6 months. Our world fell apart.

The phone rang, on the other end was the PICU Hospitalist. My breathing quickened, my heart sank and the words “nothing more we can do” echoed in my ears. However by the end of the day Charliedawn starred death in the face and screamed I’m not done yet! It’s my birthday and I made it to 1.

Shortly after Charliedawns trach surgery, the 3 kids and I crammed into the mini van and ventured out to the next chapter in our lives.

Cactus and rocks as far as you could see was our landscape of our future.

Maybe the journey isn’t so much about becoming anything. Maybe it’s about unbecoming everything that isn’t really you, so you can be who you were meant to be in the first place.

 

Fun on St Patty’s Day

Every March 17, St. Patrick’s Day is celebrated with parades, parties, and a lot of green. This date marks the death of Saint Patrick, the Patron Saint of Ireland. … Today, the holiday has evolved to become a secular celebration of Irish culture. Green garb, leprechauns, pinching, drinking, partying, parades, more drinking.

With all this celebrating how can we include our children?

Eat all things green

Celebrate the day by feasting on all things green. For breakfast, try some green eggs and ham while reading the Dr. Seuss book to your kids or dye your pancakes green just for fun. For lunch, try serving up a buffet of green foods – broccoli, celery, salad, guacamole, and grapes. Wash it all down with some green juice. Who knows? Maybe your child will try some new foods trying to get good luck on St. Patty’s Day.

Set a leprechaun trap

The night of the 16th, have your kids set a leprechaun trap using a box or laundry basket. Put gold coins inside to attract your leprechaun, but remember, leprechauns are very sneaky and do not like to be seen. In the morning, your child may awake to see that the leprechaun has taken their gold coins and left them a small gift or treat.

Make slime

Have you heard? Slime is all the rage. This borax-free recipe is great to squish and stretch. Get the instructions: littlebinsforlittlehands.com

St. Patrick’s Day Math

Don’t let your brain turn to green mush. Play this fun St. Patty’s math game with the kids. Play it here: coolmath-games.com

Prepare Irish Potato Candy

Despite not containing potatoes or being from Ireland, this simple, no-bake confectionery treat was developed in Philadelphia by Irish immigrants, and it remains a St. Patrick’s Day tradition in the City of Brotherly Love. 

These delicious cinnamon-coated sweets resembles miniature potatoes and are often rolled into potato shapes and served in a “potato sack” (a brown paper bag).

You’ll need

  • ¼ cup butter, softened
  • 4 ounces cream cheese, softened
  • 1 teaspoon vanilla extract
  • 4 cups powdered sugar
  • 2 ½ cups sweetened flaked coconut
  • 1 ½ teaspoons cinnamon

Here’s what to do:

1. Beat butter, cream cheese and vanilla together. 

2. Slowly add the powdered sugar. 

3. Then, mix in coconut and stir until well-blended.

4. Form tablespoon-sized balls, roll in cinnamon and roll each one into a potato shape. 

5. Place the pieces onto a foil-lined cookie sheet and chill until set. Keep them in the refrigerator until serving time.