Conference Registration Fee Payment

2020 Family Conference on Holoprosencephaly

Great Wolf Lodge & Conference Center – Mason, Ohio
June 14-18, 2020
Roxanne Steele and Becky Wilson, Conference Chairpersons

Check-in is on Sunday, June 14, 2020. Check-out is on June 18, 2020.

Registration Fee: $845 per family

Registration includes:
• 1 Family Suite for the nights of June 14, 15, 16 and 17. A Family Suite sleeps a maximum of 6 people with 2 queen beds and a sofa sleeper.
• Indoor waterpark passes for your family
• Childcare (if needed)
• Activities for moms, dads, teens, bereaved
• Exclusive admission to the waterpark one hour earlier than other GWL guests on Wednesday, June 17
• Welcome reception on June 14
• Lunch buffets on June 15 and 16
• Buffet dinner and entertainment on June 17

Families for HoPE will coordinate the hotel reservations for you, so you do not need to contact Great Wolf Lodge for reservations. (Families that require a larger suite or a second suite will incur additional charges based upon the room type needed. Check with the conference chair-persons for details.)

Please download the 2020 registration form to register for the 2020 conference. You may return the completed form by scanning and emailing to or via mail to:

Families for HoPE, Inc.
c/o Roxanne Steele
401 SW H Street
Richmond, IN  47374

We strive to make our conferences affordable for our HPE families to attend, and we will again offer the option to make online payments monthly toward your conference registration fee. Please see the following fee schedule for monthly payments. (All registration fees must be paid in full by April 30, 2020.)

For your convenience, you may pay your registration fees below. If you are choosing to make monthly payments, please check the box “Show my support by making this a recurring donation” so that your payment will be processed automatically each month. Also, please include the name of your child with HPE in the “Comments” box.

NOTE: Please access this from a laptop or PC. The screen orientation on a mobile device may prevent you from completing the transaction.


In December 2008, when my Zoé was born and I found out a few days later she had semi-lobar holoprosencephaly, as soon as I could, I jumped on my cell (this was before smart phones, just think looking something up in a 1″x1″ little screen) to try to find anything I could…shortly after that, I had found out there were 3 types and that was pretty much all I could find.

No Facebook group I could find, just a little girl in Europe. For about a year, that is all I could find. Hospital stays were long and very lonely (I’m a single mom).

Eventually I found Families for HoPE. Finally there were others. People to bounce ideas with and would support me when I needed to vent after Doctors would tell us something hard to swallow.


Then one day in 2010, popped a bunch of pictures of a conference that had just ended. I was crushed. Especially when I found out the next one was 2 years away.

But little did I know that the first one I could attend would only be 8 years later…



I was lucky because I found a local special needs community where I got support in finding solutions for daily life and friends I could actually meet in person (we’re from Montréal, Canada)… Zoe met Owen here and these two are just too sweet to see together (he always tries to hold her hand and when he does, they just coo together, it’s the most adorable thing to see and hear but anytime a camera comes out, they stop, so sorry, no picture of that). And sure, it’s nice to have people who understand what it is to be a special parent, but issues can be so different that it’s not the same as meeting other HoPE families.

The feeling I had walking in the conference center that Sunday night in 2018, seeing all those kiddos, some I recognized, many I didn’t but, it felt like I was home with “my people”. I could barely hold in the tears. Happy tears.

And when I heard someone call my name and I saw a mom I had been chatting with and her girl, I just broke up in tears, barely had time to catch my breath that I heard my name again and there was another mom and her girl. Those were two I’ve been talking with for a long time and seeing them, hugging them, getting to finally meet them, I cannot put it into words. It felt like being reunited with long lost family. I just love this picture of the 3 of us and our girls, this is just real, our reality at least… and a year later… it still brings me so much joy to see and remember…

You can’t fathom how it is to be with people that truly get it until you sit in a conference room and you see blankets popping out and suddenly kids being laid on the floor or you hear the sound of suction machines and no one looks or if they do, it’s with a smile, because everyone just accepts your child as they are.

You see yourself in all those parents and you just know that here and now, you are the norm. Here and now, there are no special needs.

I’m so excited to repeat the experience that I think I was the first one to register for 2020. I can’t wait to go see my friends, my people and meet new ones…maybe you?


Not Broken

She is not broken

She does not need fixing

She is no more different or wrong than

you and I are the same or right.

She is not broken

She does not need fixing

Your advice might come from a good place, but

Do you see this exhaustion on my face?

I’m not just tired from lack of sleep

I am weary. I am weary with worry and over thinking.

So unless you are offering help,

please take your pity somewhere else.

She is not broken

She does not need fixing

As she screams through his haircut at the salon,

you say to your child, “you NEVER acted that bad.” And YOU stare at ME like I am the worst.,,

But keep in mind which one of us is judging a child right now.

She is not broken

She does not need fixing.

You look at him like a puzzle piece that does not fit into your puzzle.

I look at her and see a puzzle piece being forced to fit into a different puzzle.

She is not broken

She does not need fixing

No, I was not chosen to be her mom because I am special.

I am special because I was chosen to be HER mom

SHE is NOT broken

SHE does NOT need fixing

By JoLea Kendall

HoPE Walk ‘N’ Roll

First Annual HoPE Walk ‘N’ Roll festival

Families for HoPE, Inc. is a 501(c)(3) nonprofit organization formed to address the needs of families and children diagnosed with holoprosencephaly (HPE) and related brain malformations.

Deeply committed to raising awareness of holoprosencephaly, a group of HPE families in Arizona are joining together to host an awareness event and fundraising walk on November 9th 2019. The event will be held at Power Ranch Park 4546 E Haven Crest Dr Gilbert, AZ 85297

Our grass-roots efforts to raise awareness of holoprosencephaly among the general public begins with the efforts we make right here in our own community to create a ripple effect that will grow across the US. That’s where you come in!

Join our HoPE Walk ‘N’ Roll 1/2 mile route.

Or become a vendor of at the craft fair.

There will be craft vendors, food vendors, face painting, DJ, clown, bounce house and lots of cool stuff being raffled off!

A great time for a little exercise, holiday shopping and get some lunch!

Click here to register for the HoPE Walk ‘N’ Roll

Vendor Application

Grandparents View

While I’m preparing to complete the 2020 conference registration for Dorothy and I, we were talking about last years event.  2018 was my second conference.  The first was in 2008 when Chloe was a baby and I learned so much about HPE and about my granddaughter (pictured).  
Like a lot of families, when we got her diagnosis, even though the doctor told us not to go home and google it, we did.  It was scary seeing “the worst” online.  Then we went to the conference and learned, it’s not all gloom and doom.  I met a young lady that at, I believe, 6 years old told her doctor her name and said I have Holoprosencephaly.  I was just learning how to say it and still need to look it up to spell it.

In 2018 Dorothy and I had the opportunity to attend the conference again.  This time it was at Great Wolf Lodge in Mason Ohio as it will be in 2020.  The chance to see families I met in 2008 and to meet new HoPE families was too much to miss out on so we loaded up and headed north.  I’m sure some of the families got tired of me and my camera.  I took hundreds of pictures during the conference.  Some of the kids became favorite subjects of mine and if you see the pictures you know why.  I think it is the eyes.  Many of our HoPE children cannot speak, like our granddaughter, Chloe, but that doesn’t mean they cannot express themselves.

  This little doll was one of my favorite picture subjects.  I probably have more pictures of her than even my own granddaughter.  Getting the chance to watch these families (mostly the kids) interact was worth more than any registration fee.  I got to meet some great people from as far away as Holland.  Miss Kate and her family became friends who we still stay in touch with.  Unfortunately, Kate and the crew will not be able to attend the 2020 conference, but we look forward to seeing them again in 2022.  Last years conference gave us the chance again to learn more about these amazing kids (I guess I should say people as some are adults now).  The speakers that come are some of the most knowledgeable in the field and give families HoPE instead of just telling parents how short their life will be.  
As I look back through these pictures again, I see children interacting with their siblings and other kids.  (This is my oldest granddaughter having an in-depth conversation with Big T).   I see wonderful smiles on faces that can light up a room and make you smile on your worse day.   Our HoPE children are full of life and have purpose.  At the 2018 conference I also attended as a vendor.  I make vinyl decals and through my decal booth, I met even more of the families and learned some of their stories.  While designing decals to fit a specific family we would talk, and I got the chance to learn about them and their child.  I wouldn’t give up that opportunity for anything.  On top of the invited speakers, the moms had an evening just for them to go, relax and get to know each other more.  The guys, well we had an evening to go and see one of the best collections of classic cars I have ever seen and to bond and get to know each other better as well.  

The facility has a great pool area where the families got the chance to go and spend time relaxing and be with old and new friends.   It’s also right next door to Kings Island.  Some of the families and a lot of the older kids made a day of it on the rides there. 

Overall, the conferences are great experiences for HoPE families.  There is no better way to learn about Holoprosencephaly than to be in a building with a group of families who are going through the same thing as you.  I am so looking forward to attending in 2020.  While I’m thinking about it, I want to say thank you to everyone who had a part in all the past conferences and for those who are working so hard already for the 2020 event.  For those who didn’t attend in 2018, this picture will give you an idea of how many were in the last conference.  Hope to see everyone in April.

2019 HoPE Moms Retreat

Registration is open for the 2019 HoPE Moms Retreat to be held in New Orleans, Louisiana on June 28, 29 and 30, 2019! This retreat is limited to only 30 moms, so don’t delay in registering!

Vision:  To bring HPE mothers together for a weekend retreat for the purpose of finding and sharing hope through activities for learning, growing, bonding, laughing, and playing.

Registration fee: $200 – The registration fee includes the following:

  • 3 nights lodging
  • Continental breakfast each morning
  • An evening meal on Friday
  • A lunchtime meal on Saturday
  • Bottled water, soft drinks, chips and snacks at the house throughout the weekend
  • Tour of the facility where Mardi Gras parade floats are designed and built
  • French Quarter scavenger hunt
  • T-shirt

Join us for other activities including live music, fireworks, a day at the beach and more. To receive a copy of the full itinerary or to learn more, please contact Monica Finch at or Leslie Harley at

We hope to see you in New Orleans!


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.

For the mom who is so tired that she feels she can’t continue, that she would give anything for a moment of peace.

For the mom who cries in her room for having scolded the kids for a nonsense that makes her feel guilty.

For the mom who desperately battles when wearing denim pants because she wants to look pretty and wear them to feel better.

For the mom who asks for dinner pizza because she didn’t reach the time to make dinner again as she expected.

For the mom who feels alone, even when she’s accompanied.

You’re worth a lot.

You are important.

You are enough.

This is a stage, a crazy and challenging stage for all moms.

But in the end everything will be worth it. For now it’s hard. Difficult in many and different ways for each of us. We don’t always talk, but we all fight, you’re not alone.

You are enough.

You give the best of you.

Those little eyes that observe you think you’re perfect, they think you’re more than perfect.

Those little hands that ask for your arms, they think you’re the strongest and you can conquer the world.

Those little mouths eating what you cook, they think you’re the best

Those little hearts looking for yours, they want nothing but you.

Because you are enough for them, you are more than enough, mom.

You are wonderful…

– unknown author


By: Kelli Aardal Goin

Words she never got to say,
However communicated in a big way.

Let you know when something was wrong,
Loved to listen to her favorite song.

Her twin sister was her very best friend,
The one who with her time would spend.

She never got to go to school,
But learned to love the swimming pool.

Proved doctors wrong with each passing year,
Brought joy and laughter to those she was near.

Making it hard to say goodbye,
Trying not to question God on why.

Trusting that she’s in a better place,
Knowing one day we’ll once again see her sweet face.



A Wish With Wings

By: Kelli Aardal Goin

The news that no parent wants to hear,

Their child has a terminal illness and isn’t guaranteed a year.

The hospital visits become a common affair,

Their child’s story they are often asked to share.

Stress begins to take its toll,

Each family member having to play a different role.

Prayers go out each and every night,

That their child’s future would look more bright.

A Wish With Wings learns of the child,

Ask for their dreams to be compiled.

Puts together a magical trip,

With the help of some sponsorship.

Makes sure it’s perfect in every way,

So they’ll always be able to reflect upon this day.

When their child got to live their dream,

With happiness they clearly did beam.

Building memories they’ll cherish so deep in their heart,

Not even death can tear them apart.


Click here to check out Kelli Aardal Goin’s book “Abbey Grace Wants to Play” on Amazon!

If there was a cure

If there was a cure.

I would see you crawl and I would follow you all around to make sure you weren’t getting into trouble.

If there was a cure.

I would see you unsteadily walk around and grab all that’s around you.

If there was a cure.

I would see you run away from me squealing when you stole that cookie from the kitchen.

If there was a cure.

I would swing you at the park so you could feel the fresh breeze from the air and I would hear the giggles as the movement tickled your tummy.

If there was a cure.

I would take you to the pool and hold out my arms so you could jump to me.

If there was a cure.

My heart wouldn’t hurt so much thinking about all of the should’ve beens.

But since there is no cure.

I will love you endlessly and learn all there is to know about this life.

So even without a cure.

It will still be a good and beautiful time. 🐝

Where we are

By Nikki Tuma

Here is a little story about Kreighton that got us to where we are today :

Kreighton was born July 25, 2013.. when we found out we were pregnant with him, there were no abnormalities that arose with the ultrasound. July 25th came and it was my induction date (he was originally due on July 18th) , during my induction, I was complaining that i was hungry and the only thing they allowed me to eat was a red Popsicle. Everything was going great until there were some alarms sounding and a lot of nursing running in the room. I had no idea what was going on, i was just laying there eating my Popsicle. Well, i guess his heart rate dropped super fast for some unknown reason, they threw my Popsicle away, put me on my back and threw oxygen on me.. all was well after that until the Dr. came in and broke my water. When the dr broke my water there was quite a bit of meconium (this is where the baby has a bowel movement in the womb) and he was concerned that he may aspirate and talked about having a C-section. Shortly after the doctor left, Kreighton was ready to come out full force. There was no time for a C-section, and he was born … they had a NICU nurse in there to check him out, and everything was A-OK… he came out screaming!!! we got discharged 2 days later and went home to what we thought would be a “normal” life raising our now 3 beautiful kids. I tried breast feeding, but it just wasn’t going great, and he wasn’t latching very well.. When he drank out of a bottle, it leaked out of his mouth a lot, we just assumed it was the type of nipple so we tried other bottles and it still happened. As the months went on, Kreighton, was barely gaining weight. He was staying around the 1-3% on the growth chart, and at our monthly Well Baby checks, it was showing he was not meeting the milestones as he should be. at about 8 months old kreighton was still not rolling over, let alone sitting up so his doctor then referred us to a GI doctor in Omaha because he was more concerned about his weight loss than his milestone. The GI doctor had us just increase his bottle feeds and come back to recheck weight in a month. when he went back for our 1 month check, I had mentioned to the GI doctor about Kreighton not meeting milestones, so he then referred to a neurologist in the same clinic. We went and seen him that day.. . At first, the Neuro dr just said he thinks Kreighton was just going to be a “slow learner” and ordered physical therapy for 3 months and then to come back and re-check his progress. After the 3 month recheck * this was July 21st (we had a GI appointment this same day ) he said he wanted to get a MRI at some point just to see if this showed anything (he said it was no rush but just before the end of august to get this done ). We then left the neuro appointment and went to GI. At this appointment they admitted him to the hospital right away because he had lost 4lbs in 2 weeks!!! . Since he was in the hospital, they went ahead and did the MRI to get it out of the way. While at the hospital , they found that kreighton had a super high palate (the roof of your mouth) its so high arched that it almost didn’t form they told us. They said this was the reason for the lack of being able to suck on a bottle correctly. SO, we ended up having to put in an NG tube.and then eventually put in a permanent Gtube in September. This broke my heart, but it was nothing near close to how broken my heart was 2 days later the day before my little Miracle turned the big ONE . As me and my wonderful husband were sitting in the hospital room holding kreighton and playing with him, two doctors (his neurologist and the hospitalist) along with 4 nurses came into the room with papers. My heart sank as i knew this wasn’t going to be good news. This would be a time a day i will NEVER EVER forget , i still get emotional talking about this day. Dr. told us that he had some bad news, and that his MRI shows a very rare brain malformation called HOLOPROSENCEPHALY . He told us that the survival rate of a child with this condition was very very slim. The doctors gave us as much information as they could and tried to get everything together so we could go home the following day. The day my baby turned ONE, we were able to go home that afternoon. The last year and a half have been one hell of a roller coaster ride. As soon as we got home, I searched on Facebook for anything even remotely close to HOLOPROSENCEPHALY because I knew there were groups for anything on FB. I found the most amazing support group ever called Families for HoPE. When I found this group, we learned that in just 2 short months, they were hosting a conference in Dallas for families who were affected by HPE (holoprosencephaly) we wanted to go so bad to learn more about this condition and to see what we could do to better help Kreighton as well as meet other families going through the same thing. We have now attended 3 conferences and look forward to our 4th conference next summer in Ohio !! Kreighton strives everyday! He is continuing to work so hard at therapy. People think I am nuts driving a little over an hour one-way just to take him to therapy, and honestly, I DON’T CARE. His therapists are ABSOLUTELY AMAZING with him and have been there with him through this whole thing. Here we are, 2019…Kreightons legs aren’t working as well as they have been, he had surgery in late 2017 for a tendon release which has helped him not be as tight. He still seems to drag his leg but they think it’s more a neurological issue rather than an orthopedic issue … but we do what we can and he works with what he has ♡♡ He has finally reached 45lbs!!!! As you know weight has been an issue since day 1 !!! If you can believe it, he was the biggest baby coming into this world at 8lb 6oz !! And the biggest blessing of all… he will be 6 in 4 short months guys !!! SIX !!!!! and if you have made it this far reading …. We thank EACH AND EVERY ONE of you who have supported Kreighton in every way, shape, and form . If it wasn’t for all of the support from you all, I do not think we would be as strong as we are today.!!!


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:

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 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 or Families for HoPE at

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.

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; More

verb – want something to happen or be the case.”he’s hoping for an offer of compensation”

synonyms:  expect, anticipate, look for, wait for, be hopeful of, pin one’s hopes on, want

Hope.  It’s a simple word and yet can mean so much to anyone going through a difficult time. It can mean the difference between hanging on and giving up. It can mean a tiny smile in the face of a devastating diagnosis. It’s one word with no true definition — hope can mean anything you want it to.

With the lens of hope, we can see right through life’s quandaries.

“HoPE means making sacrifices and finding patience I never thought I had. It means finding everything I NEVER knew I needed, everything I needed to be a better me. It means rising above average and being that unicorn in a field of horses!”  Jennifer Hull

“HoPE means never giving up, that my son is a fighter. Small, but mighty miracle.”  Nikki Tuma

“To me, HoPE means even on the darkest days I can still see some light. In a sea full of ‘no’s HoPE is the float that keeps my head above water!”  Laura Findeison

“HoPE is a glimmer of light where light is absent. It’s a fight against darkness.”  Larisa M Denney

“Miracles happen. Our kids are stronger, more resilient and stronger then many, many people will be in their lifetimes.”  Gemma-Sarah McCusker

“HoPE means living life anyway.”  Stephanie Benigno Bley

“I guess it’s kind of like faith. Without it, what do you have? And it kind of makes me think of something that we’ve always said…no matter what, everything will be okay.”  Tawnya Maxwell Skaggs

“The possibility of a better tomorrow.”  Rebecca Lou Smith McGee

“Never give up.”  Monica Finch

“HoPE is a small word with a big meaning to my family and me. Hope is seeing light despite the darkness. It means never giving up, means family and love. It’s the glue that holds us together.”  Tonja Ross

“Believing in the unbelievable.”  Jolee Krause

“HoPE is the strength and trust of knowing God is working in my child, to be who He intended him to be.”  Laura Hamilton Callaway

“A different kind of normal.  Determined. Fighter. Miracle.”  Leigh Grinter

“Believing there is more out there to find to become better.”  Pete Lawler

“Always a chance”  Dorothy Lawler

“A confident expectation despite all odds.”  Andrea Curtis

…I’ve learned that as long as I have breath, hope is available.

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:

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:

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.