One year

December 11th, 2009

Hello family and friends,

As I sit and look at our new two month old son, I can’t help but see a spark of our Princess Isabelle. It’s been one year and there are still so many reminders of what happened to us not long ago…

You know the story and you know how it ended. What you should know is that we could not have survived with our sanity if it wasn’t for the support of all of you. As the day went by today I remembered every single thing that you did for us:

Caring for Elorah on the weekends, visiting us at the hospital, eating dinnner with one of us, bringing Isabelle balloons, flowers, books and gifts, the wonderful posts on our guest book, helping us sell bracelets to raise money for the transplant, the kind words exchanged, the thought and care into those words, running a silent auction and helping us raise money, volunteering your skills to help us join COTA, giving us extra time off, allowing us to focus on Isabelle’s care, the cards, helping us make through each day, coming to see us in St Louis, listening to our updates each day over the phone, sending us txt messages, sharing our story with friends and family, donating money to our transplant fund, helping us get in the newspaper and on TV, telling your church to add us to the prayer chain, the hugs, being there for us in the end, helping us setup all the decorations at the funeral, fighting the cold and snow to see Isabelle one last time, the tears, the understanding…

You’ve all done so much for us and you keep doing so much. We’ve forged so many close relationships through our experiences. We’ve met new families who have had their own tragedies. We’ve learned to pick up and carry on. We’ve learned how to mourn and we’ve learned how to celebrate Isabelle’s life.

I woke up a few times in the night remembering each hour that led up to Dec 11th. I remembered the calls that Tangela made to me with updates “her blood pressure has been unstable all night”. I remember thinking “we’ll get through this, it’s just another bump in the road”. I remember that morning, I had no idea what was to come. It’s like you’re a warrior and you’ve done battle every day for 108 days straight and you get up, put on your armor and shield and you go to work. Why was this day any different? I think Isabelle’s spirit knew. It was the first night in a long time that Amanda and I were not in the room with Isabelle. We had our guardian Angel watching over our precious, sweet Isabelle. Numb may be a word I’d choose. We were somewhat numb from being in the ICU so long. Well, the numbness would turn to shock and disbelief very quickly. As I walked to the hospital, I got a call “you need to come here quickly”. So I ran. When I got there, the Dr’s were doing compressions. It’s as if Isabelle’s spirit was saying “I don’t want Mommy and Daddy to go through this anymore”. By the time we got there they had just barely stablized her pulse, but it was too late. Still we held on and we clung to the belief that Isabelle could pull through this. It would have to be a true miracle for sure. As the hours went by the Dr’s told us that she was not going to recover. It was too late. I struggle to find reason about all this, but these things I know as fact:

1. If I didn’t have faith; I wouldn’t have my sanity.

2. Isabelle possessed strength and wisdom beyond her years.

3. We couldn’t have done so well if we didn’t have the support from you.

4. Elorah & Ben have helped us more than I can explain.

5. Isabelle is in Heaven and yet her Spirit visits us often.

Someday I hope to explain to you how I know all these things, but for now you just have to trust me. That day we said goodbye to our Warrior Princess, our little Tiger, but it’s only a short departure. I know she’s being well taken care of by family and friends. Gracie, Connor, Scott, Jason K, Uncle Jim, Thadd, Grandma’s and Grandpa’s just to name a few. I am positive that they are all having a great time together and that Isabelle is making them laugh like she made us laugh.

For now, we will carry on with her Memorial and we’re making new plans for 2010. We’ll be working with Gift of Life of Kansas City to help raise awareness about the importance of organ donation. We’ll be making changes to the website, selling things to raise money and giving hope to others.

At 8:03 pm tonight, please stop what you are doing, hug someone you love and think about our sweet little Princess Isabelle. Remember her as your friend, your ballerina, your Princess, your darling, your inspiration, your source for humor, your artist and your hope. She’s definitely thinking about you.

Thank you so much for all the love and support.

Thanks to Pastor Michael at the Eudora Methodist Church for his guidance.

Thanks to our mother’s and father’s and our family for helping us bear this pain.

Thanks to our friends for carrying us through this.

Thank you Tangela, we love you.

We love you all,

Chris, Amanda, ^Isabelle^, Elorah and Benjamin.

Oct park cleaning date moved

October 9th, 2009

Hello friends and family,

We will NOT be cleaning South Park tomorrow (Oct 10). Instead we are moving the October date for the South Park cleaning to October 17th at 10am. I (Chris) will be out of town attending the funeral for our friend Gracie who passed away on 10/1 and (not to mention) it will be freezing cold tomorrow morning.

Hopefully the weather will be nicer on October 17th (or we’ll have to move the date again).

Thank you for your support!

Also, Isabelle and Elorah’s little brother Benjamin is doing great. He’s been home for several days now and he’s doing very well (as is his Mommy). Elorah has been taking good care of him and is very excited (except when he cries).

Lots of love and hugs to all,

Chris, Amanda, ^Isabelle^, Elorah and Ben

Lots of updates: some good, some sad

October 2nd, 2009

Hello friends,

We wanted to share some important updates to you today. We’ll jump right in. First of all, we send a big ‘thank you‘ for those that were able to attend the graveside memorial services. We really wanted to bring everyone together during the good weather and share some time of reflection. The headstone looks amazing and everyone enjoyed the balloon release, butterfly release, decorations, cookies and apple juice.

It was so nice to see such a great show of support, lot’s of warm faces. We leaned heavily on friends, family and the community and we are so grateful to be surrounded by such good people.

We understand that some could not make it due to the long distance so we’ll be posting some pictures soon.

The Good News:

Ben:

We have a son! Baby Benjamin was born on 10/1 in Lawrence. Both he and mother are doing great. It’s the beginning of a new chapter in our lives.

The Sad News:

Gracie:

Dear friends of ours lost their daughter Gracie to heart failure on 10/1. Gracie was waiting for transplant and had her Fontan Procedure (she had HLHS like Isabelle) in April. Gracie was in and out of the hospital over the summer and she went in for a valve repair in August, which did not give her the relief she needed. She was listed for transplant, but struggled with complications of heart failure. Her parents took her home on Tuesday and she passed away peacefully just after midnight on 10/1. Her story can be read here: http://www.caringbridge.org/visit/gogracie/journal This loss really struck home with us because we went through it as well. We were not able to take Isabelle home and we are so glad Gracie got to spend some time at home before her passing.

Rainy:

Also, some friends of ours who have a girl who is struggling with a rare type of brain disorder. Her name is Rainbow (Rainy) and she has a website at: http://pray4rainy.com. She recently suffered a major health scare when she was found in her room, having suffered a seizure.  It’s very hard to read about the constant pain this little angel goes through each day. Her parents are veterans at Children’s Mercy and the future is uncertain as to when relief will come - because treatment is not easy with brain disorders.

Conner:

A couple (Sarah and Jared) we met through Rainy’s parents have been struggling with the loss of their son in February. They are selling bracelets to help raise funds to cover the funeral costs. His Mommy setup a Facebook group to help sell the bracelets. Go to: http://www.facebook.com/reqs.php#/event.php?eid=152410816188 and read more. Natually, if you contact us we’ll get your however many bracelets you want. Please consider this and please consider passing this on.

Thanks again for helping us, supporting us and sharing time with us. We sincerely appreciate everything you’ve done for us. It is our goal to turn our loss into hope for others. The Isabelle Ellis HOPE Memorial Fund does just that. We are so happy to keep Isabelle’s spirit alive through this charity and we thank you for your support.

Warm regards, Chris, Amanda, ^Isabelle^, Elorah and Ben.

Memorial Services Planned

September 11th, 2009

Hello everyone,

We wanted to share with you that we’ll be having memorial services for Isabelle, graveside, on Sunday, September 20th at 4 PM. Services will be 30-60 minutes (depending on how many stories we all share).

At this event we plan to unveil Isabelle’s headstone, share stories and talk about our Warrior Princess. The services will be a time for us to gather, remember and celebrate Isabelle’s life. Our Pastor (Michael Tomson-DeGreeff), who presided over Isabelle’s funeral services, will be there to preside over the services.

Everyone is welcome to attend.

We are planning to have a butterfly release, share some sugar cookies and apple juice (Isabelle’s favorite) as well as a balloon release.

The rain out date for this event will be September 27th.

Please join us.

If you would like to share a story about your experiences with Isabelle or you would to share a story about Isabelle’s spirit after her passing, please do so. At this event we’d love to hear your stories.

Thank you for all your support!

With love,

Chris, Amanda, ^Isabelle^, Elorah and Jr to be (due 10/1)

P.S. We’ll be at Lawrence’s South Park (11th & Mass St) tomorrow morning (Sept 12) at 9 AM for our monthly park clean-up. If it is raining, we’ll cancel. Cleanup usually takes us about 1 hour. It’s great exercise, there a huge place for kids to play and it’s nice to get out and enjoy the park.

Prayers for a Friend

September 3rd, 2009

Hello friends, family and kindred spirits,

We write tonight to ask for special prayers for a friend of ours who is going through a difficult time right now. Her name is Gracie and she’s currently experiencing heart failure and is waiting for heart transplant.

The story of Gracie’s family is extremely familiar to us. Her parents Ross and Shannon have our deepest sympathy and strongest support. Our hearts broke when we got word that Gracie would need a transplant, but we were joyful to hear that she was successfully listed.

Gracie was born with a complex heart defect, like Isabelle, that carries with it a series of operations and complications. In Gracie’s case, she had her Fontan in April and she got to go home, but she’s been in/out of the hospital all summer and her family is needing to be surrounded with love, thoughts and prayers.

Gracie recently underwent a procedure to repair a heart valve that did seem to offer the level of support that we all had hoped. Her situation has become more serious and she’s going to need a new heart.

I know there are some sleeping giants out there who can really call in some big prayers, please do so for Gracie. She deserves to have that chance at life and she deserves to go home, healthy and happy.

You can keep up with Gracie and her family at by clicking here. They belong to Caring Bridge - like we do.

Please share her story with friends, family, prayer groups, etc.

Thank you very much. You’re awesome.

With lots of love, Chris, Amanda, ^Isabelle^ and Elorah

Give Life, Be An Organ Donor

One year later…

August 25th, 2009

Hello dear friends,

Today is a special day. We all wish we were celebrating the 1 year anniversary of Isabelle’s Fontan with jubilee, however, that’s not the case. It was one year ago that we took Isabelle to Children’s Mercy for her Fontan. Amanda and I were talking yesterday about it and we remember the days leading up and the day itself - just like it was yesterday. Then the tears came. A year ago Isabelle had been riding her bike which she got from the tooth fairy, she had made a big batch of sugar cookies (you’ve seen the video), learned to climb a tree, went on her last park visit and spent time in the garden with Mommy and Sissy. We built our first fort and played in it. We celebrated Elorah’s b-day early so Isabelle could participate (I am so glad we did that). We were just ready to get the Fontan over with so we could get on with our lives. We felt in our hearts that Isabelle would just be in the hospital for 3 weeks max. We wanted to cross this bridge and not look back. Little did we know.

I remember taking Isabelle in. She packed a suitcase with a dress, her Tiggy and she put on her favorite summer dress. She was very calm and serene the entire morning. Surely she saw the fear on our faces, but she kept strong. She never questioned or stopped to ask “Why I am doing this? Where are we going?” or never put up a fight about it. It was as if her spirit was calmed. We met with the nurses, then the anethesiologist, then the surgeon. We asked a few questions, but we knew the drill. At this point, we were scared to death and we were now leaning on Isabelle’s strength. We watched her confidence and it gave us confidence.

We took Isabelle down that fateful corridor and before the sedatives kicked in, we said our goodbyes. We gave her lots of hugs and kisses and gave her over to the nurse. How I wish I would have just grabbed her back and ran…

We quietly walked back to the waiting room and we decided to go to the Ronald McDonald house. Our first update came in that they’ve started the anesthesia, then another update about the clearing of scar tissue, then another about the placement of the pacemaker, then another about the surgery, then another about her being out of surgery. It was long and hard for us. Very hard. At this point, I just wanted her to be out of there, I wanted her back.

When she was taken to the ICU we got our first look and it gave me flashbacks of when we saw her after her other surgeries. It’s a scary sight, lots of monitors, IV’s, equipment and staff buzzing around. It was hard to stay calm and focus, but we did it for Isabelle.

For the rest of my life I’ll always have the memories of Isabelle before surgery, for the rest of my life I’ll always wish it was August 24th, 2008. It’s one of those days you wish you could go back to and change things. For the next 108 days Isabelle would fight through complication after complication, procedure after procedure, and she’d prevail every time. She never quit fighting, even until her poor, tired heart truly failed. She exhibited the strength of a tiger and the grace of a Princess and so she became the Warrior Princess.

Isabelle, my Isabella-boo, Mommy and Daddy miss you so much…we miss you so much.

We love you Isabelle, forever and ever, you are our Princess, our Warrior Princess.

Mommy, Daddy, Elorah and your soon-to-be baby brother (due in a month)

P.S. If you have time, please listen to this song: http://www.youtube.com/watch?v=v0NoHN1TU5I (we played 1000’s of hours of Enya while in the hospital, this song included)

Here are the lyrics

Only Time by Enya

Who can say where the road goes, Where the day flows?
Only time…

And who can say if your love grows, As your heart chose?
Only time…

Who can say why your heart sighs, As your love flies?
Only time…

And who can say why your heart cries, When your love lies?
Only time…

(interlude)

Who can say when the roads meet, That love might be,
In your heart.

And who can say when the day sleeps, If the night keeps all your heart?
Night keeps all your heart…

(long interlude)

Who can say if your love grows, As your heart chose?
Only time…

And who can say where the road goes, Where the day flows?
Only time…

Who knows?
Only time…

Who knows?
Only time…

Quick Update

July 31st, 2009

Hello friends, family, support and fellow Isabelle-inspired folk,

We thank you for the kind hand you’ve leant over the past 7 months as we’ve grieved. Losing Isabelle was a huge emotional toll on all of us. The love, support, prayers and kindness you’ve shown us made a huge impact and helped us tremendously.

We wanted to give you an update on a few things. First, Isabelle’s memorial stone (headstone) is almost ready. It should be installed in late-August. We plan to have a memorial ceremony, graveside, once it’s in place. We’d love it if we could get a great showing there at that time.

Isabelle’s surgery date is nearing us. August 25th was the day we took her in for surgery. It was a day that we will never forget, ever. Isabelle was optimistic, happy and in good spirits that day. She was so strong in that regard. She trusted everyone and that was such a comfort. She went into surgery with the courage of a Tiger (her favoriate animal).

A new bracelet order is being processed so we’ll be posting about more bracelet sales soon. The funds obtained will go towards Isabelle’s HOPE Memorial Fund, which supports various endeavors, including helping others.

Isabelle’s park benches are almost ready. The one in Lawrence’s South Park just needs it’s placard now. Once that’s ready we’ll be having a dedication ceremony there. More to come on that. The one in Eudora is nearing installation and it will have a placard, too. Both will represent Isabelle’s love of parks and nature.

For those of you who are familiar with Isabelle’s Baby (aka My New Baby aka Sissy aka Elorah), you know that she’s growing up fast. She still talks a lot about Isabelle. If she’s drawing she’ll pick up a pink marker and say “this color is for Isabelle”. When drawing the family she remembers Isabelle. When she talks about Isabelle she says “Isabelle isn’t sick anymore, she’s in Heaven now”. Last week she said “Isabelle’s coming back and she’s driving a pink car”. Tears of sadness, tears of joy. Here’s a slideshow of some pictures Rebecca took of Elorah last month: http://www.rpetersphotography.com/slideshow/Elora_Family/

See if you notice something special about Amanda’s belly in the picture. :)

More to come on that.

Thank you for all your Love, Prayers and Support. Isabelle’s Spirit is still strong around all of us. When you feel the warm of the Sun on your shoulder, feel a cool summer breeze, pick some fresh strawberries, see a butterfly flying around or walk through a field of flowers, remember our Princess Isabelle.

Love, Chris, Amanda, ^Isabelle^ and Elorah

Thank you

July 17th, 2009

To all who have supported us so much,

We wanted to tell you “thank you” with all our hearts. We received so much support in all forms and we continue to get wonderful support. It’s a testament to how big your hearts are and how much Isabelle meant to you. Her spirit lives on.

Thank you to all those who came to help us clean South Park last weekend. You volunteered your precious time to help us do something nice for the community in Isabelle’s name. Isabelle loved playing in the park and she would ask to go every day. She just loved having fun in the open air. She’d play until she wore herself completely out.

Cleaning the park is our way of remembering Isabelle. It’s our way to keep her spirit alive and ensure that South Park gets some much needed attention (tender loving care). I have to share a funny story about this. Back in May we got started on cleaning the park and there was a homeless person sleeping on a bench (don’t tell the parks and rec please). We came across this person, who was an older man, and he said “you know they have people that get paid to clean up this park” and Amanda said “we’re cleaning the park to help remember our daughter” to which he said “you could do that at a pizza restaurant”. That’s such a poignant moment that I reflect upon often. We didn’t go into an explanation with this person about why we were doing this and why Isabelle was so wonderful and why we are trying to give back to the community in her name.

I think all of you know “why” (hopefully). When we go to the park we feel like Isabelle comes with us. She was such a warm and wonderful person and her spirit of sharing and giving is easily spread to you when we do these things together.

We definitely don’t get paid to clean the park, but to us, it’s one of the most important things we’ve done. It’s something that is so close to Isabelle’s heart that we just love sharing it. Now, if the weather would continue to cooperate (not too hot and not too wet) then we can definitely have an awesome time there.

Again, thank you so much to those who have come to the park to help us. On average it’s taken us a around an hour to do it (with your help). Without help, it was taking around two hours!

To stay in touch with the events that we’ll be participating in, please be sure to bookmark this page:

http://www.heartofaprincess.net/events

Thank you for being there for us!!

With lots of love, Chris, Amanda, ^Isabelle^ and Elorah

Six Months

June 11th, 2009

Hello friends,

It’s been six months since we lost Isabelle. Emotionally, it feels like 6 years. It’s been far from easy and every day there are many reminders of our loss. We miss Isabelle so much. There are times, although brief, that we forget that we lost Isabelle. For a second or two reality is suspended and we imagine that we’re going to Educare to pick up both girls, or that we’re going into the room to wake up both girls or that Elorah is in the other room watching Noggin with her sister. Then reality sets in and the painful memories of what we went through…of what she went through.

Last year at this time, Amanda was enjoying summer break and taking the girls to the park (every day if Isabelle wanted). They would play outside in the pre-summer weather and enjoy sleeping in (and long naps). By now (a year ago) Isabelle had planted dozens of flowers around the yard and she was enjoying going to the garden every night to pick strawberries. She just loved picking strawberries. She also loved picking flowers and she insisted on having her own pair of scissors and doing the cuts herself. She was so proud of her flowers and garden. We had just finished our May photoshoot with Rebecca and we were loving the pictures in Antioch park. It was a perfect day captured on film for all eternity.

By now we thought we’d be enrolling Isabelle into Educare II. When she was in the ICU we thought we’d have her home by January or February and we’d have her rehabilitated enough to go back to daycare. By now, Isabelle would have been back to swimming lessons and (definitely) some dance lessons at Amanda’s Dance. Isabelle would be sporting around the house that beautiful polka-dotted Princess dress that she so dearly wanted before she went in for surgery. By now she could have been healthy enough to jump on our neighbors trampoline and enjoy playing in their sandbox. By now, we should have had our Princess home…happy, healthy and loving life.

By now this blog would be teaming with great progress reports and thank you’s for all the prayers for continued good health.

It’s been hard and the healing has been slow. There are times when we are reminded how lucky we were to have had Isabelle for even just a short time, then there are times when we just miss her more than anything. She missed her 4th birthday, her daycare graduation ceremoy, spring dance lessons and the strawberry harvest. She never got to grow into her Disney Princess bike and won’t get to see the updates to her favorite parks.

We know Isabelle is in a better place and that she’s watching over us. We hope she’s laughing when she sees her sister do the crazy things that she does, including gymnastics, dressing up and playing jokes on Mommy and Daddy.

We are working hard to keep Hope alive, too. Isabelle’s Memorial Fund has taken root and we are gearing up to start some fund-raising efforts. Bracelet sales, family cookbook, Elorah’s art and possibly a Golf Tournament are some of the ideas we’re kicking around to raise money and awareness. The goal is to continue to build up the Heart of a Princess Eternally (HOPE) Fund so that it may support scholarships, education and partnership with sister organizations. More to come on that.

Right now, I am pleased to announce that an “Events” page has been setup and can be found at: http://www.heartofaprincess.net/events

We have a schedule of our Adopt-A-Park program as well as a listing of events that we’ve participated in (or that we plan to participate in).

If you have a suggestion about fund raising or would like to volunteer, please contact us via the methods listed on the contacts page.

Thank you so much for all the support, love, prayers, gifts, stories and tears. Thank you for praying for Isabelle during her time of need and since her passing. Your support kept us afloat and it still does. You’re the best.

With love, Chris, Amanda, ^Isabelle^, and Elorah

AHA Heart Walk 2009 Success

June 3rd, 2009

Hello friends,

I wanted to give you an update regarding the American Heart Association Heart Walk 2009 that took place in Kansas City on 5/30. It was a great event; much, much larger than I expected. We were thinking of a few hundred people, a few tables and a quick walk around the Plaza. We were breathless when we showed up! Thousands of people showed up (10,000+) and the group we partnered with (CHD Families (www.chdfamilies.org)) raised over $44,000 with over 280 participants. The event raised over $750,000 (final number still not published).

The funds raised will go towards research and education about heart disease.

My cousin Tangela showed up to walk as did our friend Matt Crawley. Elorah and Mommy stayed at the event camp and Elorah played on the Moon Walk and relaxed in the shade. On the walk we saw one of Isabelle’s ICU nurses at Children’s Mercy: Margo. It was a great treat to see her there. If you went to the event and we did not see you, please drop us a note or sign the guestbook, we’d love to hear from you.

The weather was really beautiful and the walk went really fast. We decided to take the 4 mile route and it went around the Nelson-Atkins Art Museum and around the Plaza. There were traffic cops and water stations. It was very well coordinated.

We hope to do the event again and we’ll definitely have some t-shirts made with Isabelle’s picture on it.

I like the quote found on the AHA site regarinding the event:

Create Hope
Hope that current and future generations will be healthier because participants have committed to heart health today!

Many participants are heart disease and stroke survivors; others walk in honor or memory of a friend or family member who has or had heart disease or stroke.

Isabelle’s Memorial is titled “HOPE” (Heart of a Princess, Eternally) and so knowing that this walk will create Hope for future generations realy hits home with us and our mission. Our team (Tangela, Matt and Chris [Daddy]) were able to raise almost $1000 for this event. We are so grateful for your generous contributions to this worthwhile event.

When I get the “events” page up on the website, I’ll post the pictures we took.

Thanks again for your support. If you did not get a donation made in time, consider making a contribution to Isabelle’s memorial fund or consider sponsoring us on next year’s walk.

Thank you!

With big heart hugs, Chris, Amanda, ^Isabelle^, and Elorah