Archive for February, 2009

Happy Valentine’s Day

Saturday, February 14th, 2009

Happy Valentine’s Day! We would also like to recognize this day as end to the Congenital Heart Defect Awareness Week (see here). This past week has been proclaimed such in many cities and states. This day is definitely a special day for many, but it’s always very special for families with children who have CHD’s.

This day is very special for Isabelle and us. Although it was only 10 days after her birthday, it was like a special 2nd birthday because of the proclaimations and symbolisms. It was a holiday that Isabelle loved because it allowed her to really show her best characteristic: her expressions of love for everyone and all animals.

We hope you use this opportunity to reach out to someone special in your life and let them know how much you love them. Everyday should be Valentine’s Day but since it’s not always that way, we hope you don’t hesitate to share your love and heart with someone else.

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

Thank You

Wednesday, February 11th, 2009

Hello everyone,

We wanted to say a special ‘thank you’ to all those who left birthday wishes on the guestbook (on either the caringbridge guestbook or the heartofaprincess.net guestbook). If you saw us and told us that you were thinking of Isabelle, we thank you so much. Thank you for the emails and the prayers. We continue to see how Isabelle touched your life/lives.

Isabelle showed us that it’s ok to be a girly girl, it’s good to believe in Princesses and Fairies, it’s perfectly fine to dance and sing to your own tune, and it’s highly recommended to indulge yourself in chocolate. She showed some of you how precious and delicate life can be. She taught many of you about strength and courage. She gave all of us hope.

We wanted to say a special thank you to all the staff at the KU Edna A. Hill Child Development Center (the Sunnyside and Educare daycare centers). Isabelle was a student at Educare I, but she started at Sunnyside’s Infant room in the fall of 2005. She LOVED everyone there and she got the best care I’ve ever seen there. She made so many friends and she was frequently the teacher’s pet. She learned so many great things and we have a huge box full of art that she made there. We also have a report card for every day of school. It’s fun looking back over those and seeing all the fun and cute things Isabelle did each day. Isabelle would frequently come home and tell about her day or sing a song that she learned. Educare became her world. She just loved her friends there, which included the teachers and administrative staff. At home she would go on and on about her friends there.

Her classmates and teachers are heart-broken at the loss of Isabelle. Last week on Isabelle’s birthday the entire staff at the center decided to do something special for Isabelle: the teachers wore pink. Teri made cupcakes with pink frosting, too. It was such a great treat to see all the love for our Isabelle. When I say “our” I mean you, me and everyone else, because she truly was everyone’s Princess. We cannot thank the teachers, staff and families at Sunnyside/Educare enough. They are all such amazing people…a family that cared for our little girl. A family that we trust and love.

Thank you.

With love, Chris & Amanda

Happy Birthday Sweet Isabelle

Wednesday, February 4th, 2009

Happy Birthday Sweet Isabelle

 

Four years ago, around 1:30 pm, at a hospital in Topeka we welcomed Isabelle into this world. Today she would be four years old and I shouldn’t have to tell you that we had big, big plans for this birthday. Cake, ice cream, a mountain of presents, a piñata full of candy, friends and family, balloons, decorations, dancing and movies would have been on the agenda. Isabelle absolutely loved birthday parties and opening presents. She loved all the people focused on her – quite the Princess. She could tear into presents with great ferocity and enthusiasm and would employ her little sister to help with the tearing up of wrapping paper. It was so much fun to watch. Isabelle’s joyful spirit was contagious and could fill the room.

 

I know we all wanted to see this birthday party. There’s nothing we wanted more. We would have given anything to see it. Giving Isabelle a new heart would have been the greatest gift of all: a new lease on life. The words that my cousin Tangela wrote to me say it all: Isabelle has given the world, what the world could not give to her: a heart, a very special heart, filled with unconditional love, the love of God. We see every day how much Isabelle has impacted your lives. We’ve read it in the cards you’ve sent and in the posts on the guestbook. We’ve seen it on your face when we meet you and we hear it in your voice. We hear it through the stories of our friends and families about how someone out there who was influenced by Isabelle’s struggle. We see it on your wrists (we see you continuously wearing one of Isabelle’s “Warrior Princess” or “Heart of a Princess” reminder bracelets.

 

We’ve been told by so many of you that Isabelle is a symbol of hope. Isabelle’s courage through 108 days of hospitalization is a testament to her strength, endurance and spirit. She never gave up, she fought to live and she always put on her best show for the nurses and doctors. We all were so hopeful that she’d get a donor in time and get to come home. Isabelle, like all the other children in intensive care, did not ask to be there. They do not deserve to be there either. They deserve to live life to the fullest and they deserve to be children. They deserve to be healthy all the time, but sometimes they are not. When challenged by health, they don’t give up. Kids like Isabelle fight for life and demonstrate true optimism, but they cannot do it alone. Their parents must have the same spirit and they, too, must never give up. If you give up for one moment, your child will see it on your face and feel it in your emotions. You must fight every day and you must have HOPE. Whether you are religious or not, you should pray for your child and ask for help from God. Lean on God, we did. We owe so much to our faith in God’s power. For those of you that know me well, you know that I don’t usually ask for help, but when Isabelle started getting really sick, I asked for help every hour of every day. I asked you for help and I asked God and we got a lot of help.

 

Our hope is now for the future. We hope that the treatments for HLHS get better and that a cause of HLHS can be found. We hope that the lives of children with critical illnesses can be improved by better treatments and care. Cures for cancer, heart and lung diseases, abnormalities and genetic diseases will be decades away, but we hope that the treatment process continues to get better and that hope comes easier for parents who are hopeless. We were hopeless in the days after Isabelle was born, but the doctors at KU Med and Children’s Mercy gave us hope. They never gave any guarantees, but they helped us find hope for Isabelle. Isabelle’s incredible health during her first 3 years is a testament to the possibilities of these treatments. Without those surgical treatments she would have not made it out of intensive care after being born. Our hope is in you to make the decision to become an organ donor and to spread the word about organ donation. We know it’s a very difficult decision, but we ask that you consider it for Isabelle and for all those people out there who are holding on to hope. Our hope is with Elorah. She is our beacon of hope and love. Isabelle’s spirit is so strong in her, we see it every day. She has so much of her sister in her and yet she’s her own little person. Isabelle was a Disney Princess and Elorah is a Disney Fairy, full of energy, zest and joy. Elorah is a living reminder of the strength and courage of children, too. Elorah misses her sister so much, but she stays strong. Elorah has seen the pain on our faces and she recognizes it. She’ll say “It’s ok Mommy/Daddy, I’ll go fix you some ice cream” or “It’s ok, I give you a kiss”. She gives us big hugs and kisses all the time.

 

I would like to tell you about Isabelle’s Memorial. Your gifts and donations for Isabelle’s Transplant Fund we’re transferred to Isabelle’s Memorial Fund. We have named it: Isabelle’s Heart Of a Princess Eternally Fund, or HOPE. Our mission will be to memorialize Isabelle through various efforts, including raising the awareness of Congenital Heart Defects and the importance of Giving the Gift of Life through Organ Donation. We want to raise awareness and help families struggling in the same situation we were in. We plan to partner with local groups to help raise funds to help these families and coordinate community events. We will share all this information on Isabelle’s “How to help” (http://www.heartofaprincess.net/help.htm) page and we promise to keep you in the loop on every step of the way.

 

We thank you SO MUCH for your support and prayers. Feel free to post B-Day wishes for Isabelle on the Guestbook. Isabelle’s Spirit lives on and she is with us everyday.

 

May God bless you with much happiness and safe travels on this special day,

Love, Chris, Amanda, ^Isabelle^ and Elorah

Groundhog Day

Monday, February 2nd, 2009

Happy Groundhog Day (Feb 2). Four years ago at this time we were in a hospital trying to induce labor to deliver Isabelle. At that time we had no idea what the future held for our little baby nor did we even know she was going to be a girl.

I happened to catch the movie “Groundhog Day” on TV last night. If you haven’t seen the movie I highly recommend that you watch it sometime. It’s about a guy “Bill Murray” who is stuck in time on Groundhog Day. He relives the day over and over. Some days are good and some are bad. He uses the time to get to know people, help them and he uses the excess time learn new skills/talents. For a while he uses them to do mishieveous things. He learns that no matter what he does he still wakes up the next morning back in bed. I won’t spoil the movie, but I will tell you about a part that brought me to tears. At a point in the movie when Bill starts to care for others he notices an old man in an alley who is weak and stumbling. He stops to help the man to a hospital where the man dies. The nurse then comes to tell him that the old man just died. Bill insists on seeing the old man and says “I want to see his chart”. He says “This could not have happened.” The next day he repeats the endeavor and this time he feeds the old man food, but the old man later dies in the alley while Bill tries to give him CPR. It becomes obvious to Bill and the viewer that, sometimes, there’s nothing you can do to change the course of events. Some things will happen. Some things happen and you don’t know why - and you may never know. You have to see the movie to know what I am talking about, but that scene hit me hard. It also made me think to myself “if I could pick a day to relive over and over, what day would I pick?” You have to be careful on such a choice. I would pick the Sunday before surgery (August 24th, 8/24). I think I could relive that day a thousand times. Amanda, the girls and I played all day: we played games, played outside, made cookies, had fun bathtime, read stories, watched our favorite shows and laughed. We lived more in that day that in a thousand days. I could live that day a million times over again. I wish that day was my “Groundhog Day.”

The movie has a very happy ending, too.

I have another analogy to share. If you’ve used MapQuest, Yahoo Maps, Google Maps, etc then you are familiar with zoom-in and zoom-out. You’ll notice that as you zoom out of a certain area you get “the bigger picture”. Streets become cities, which become counties, which become states, etc. I feel that in time, we’ll learn to zoom out (of this situation), slowly. I hope and pray that I’ll eventually learn “the big picture” and find the wisdom of this entire journey. In the stories that you’ve shared with us about how much Isabelle has touched your lives, your children and your communities we feel like you/we are getting to the “county/state” perspective level. You are helping us complete a bigger picture. We hope to continue out “zoom out” journey and we hope to learn more about how Isabelle’s Story has influence your life or the life of another. We may never know the “biggest picture” and we don’t need to. We know very well the absolute beauty of Isabelle at the closest pespectives that the map will allow and we’re learning how beautiful she is to all of you at the larger perspectives, too…

Thank you for sharing with us.

Sincerely, Amanda, Chris, ^Isabelle^ and Elorah