Just a few more days!

20131228-182715.jpgI was just telling Owen how incredible our heart family is and even though he lives in heaven he still has so many people who think of him everyday! I told him that his heart family loves him and all the other kiddos that are still here fighting for their lives so much they have purchased 2,000 books in his name!!!! Can you believe it? TWO THOUSAND?!?!?! We have a few more days to reach our goal of 5,000. Think we can do it?!?! Owen does!

Click here to purchase a book for the kiddos at CHLA! Make a difference and spread love and joy this holiday season. Every book counts!

http://www.amazon.com/registry/baby/OLSS7PL28PJ6

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We are proud of our heart family

20131220-075444.jpgWe had so much fun last night shopping for the LionHeart Owen holiday book drive. Literally Healing Library contacted us yesterday and told us it was time to cash in on all the gift cards they received through the drive and make our numbers grow! I’m a strong believer in retail therapy so I jumped at the opportunity. We had a great time and put some serious thought into putting all those generous gift cards to use. We had $920 to spend and purchased 101 new books for the kiddos at CHLA!!! Thank you for all of your generous book donations and gift cards. We have raised 1,710 books. If each books averages $6.00 we have raised $10,260 for the library!!!!! Wow! That is incredible! I am PROUD of our heart family and I KNOW Owen is proud of all of us too! He’s doing the happy dance in heaven as I type this!

There is still time to purchase books for the kids. Because of the energy, incredible response and excitement we have received we will be extending the book drive through New Years Eve! Please share the link, purchase a book, and always pray for the super hero’s at CHLA fighting their battles every day!!!

Click here to spread joy this holiday season
http://www.amazon.com/registry/baby/OLSS7PL28PJ6

1,500 Books For 15 Weeks

20131218-163900.jpgToday marks 15 weeks without Owen. Hard to believe that next week will be 16 weeks since we held him in our arms. At 5:06pm on Christmas Day our precious Owen will be gone from this earth longer than he was here. My heart breaks at this realization. I am thankful for all of you that continue to walk this journey with us and continue to tell his story and carry on his legacy. I am thankful that our tiny son, who never said a word, was and IS heard round the world. He was so small but his roar and his legacy are moving mountains from his new home in heaven.

In memory of Owen and the 15 weeks we have spent without him, let’s see if we can reach 1,500 books! We only need 60 more books to make it happen. Help us spread the word and spread joy as the books are delivered in the hands of patients and their siblings at CHLA!

Purchase a book today and help us get to 1,500 books for 15 weeks!

Click here to buy a book today! Every book counts!

http://www.amazon.com/registry/baby/OLSS7PL28PJ6

Changing Lives One Book At A Time

20131216-192058.jpgThis is what it looks like every day at The Literally Healing Library at CHLA because of your incredibly generous donations. Help us reach our goal of 5,000 books and lets keep the mailman busy!

We have currently raised 1,326 books and $600 in Amazon gift cards. We are so excited for the response we have received and with your help know we can reach our goal of 5,000 books by Christmas Day. If you are unable to purchase a book or already have please consider forwarding this on to 5 people. Imagine how many people we can reach and how many books can be delivered into the hands of patients and their siblings at CHLA!

If you can purchase a book and haven’t yet… What are you waiting for?!?! CLICK HERE and spread love this holiday season!

Thank you again for all of your support!

If the link does not work, copy and paste the following link in your browser http://www.amazon.com/registry/baby/OLSS7PL28PJ6

On our way to 5,000

faces of CHDThis morning I woke up and was so excited to count the book donations and see if we hit 500… Well, Heart Family you did it again! We hit 550 as of 5am! I think this is a sign from Owen telling us to keep up the great work! He LOVES his 5’s!

Today is GIVING TUESDAY! Yes, it’s a real thing. We have Black Friday, Cyber Monday and Giving Tuesday. Only in America, right?!?! I personally think this is the best of the 3 days and encourage you to give back by purchasing a book for the children at CHLA. Make a difference in a child’s life. Empower a tiny superhero with the gift of knowledge. Give a child a way to explore their imagination and for a moment get lost in a book and be free from the hospital walls. Your donation today can make that possible.  Thank you for your continued support!

Click here to purchase your book today!

Being Raw in “Real Life”

20130730-180022.jpgI apologize it’s taken me so long to actually write. The truth is life has been hard and it has been even harder to be raw and real with everyone because now we are forced to live in “real” life. When we lived in the hospital we were all protected. I was too busy with Owen and doctors and could rarely answer the phone. We also rarely had visitors because we were so afraid of Owen getting sick causing us to stay there a little longer and causing him any additional pain. I could hide in the hospital, behind my writing and could read everyone’s comments and nightly get encouragement without having to speak to anyone. No one had to see the tears or the occasional laughter. I didn’t have to worry about making anyone uncomfortable or hurting any feelings. I could just be and that was ok.

Now we are home fighting an entirely new battle out in the open. We are fighting for the children and families that are battling CHDs. We are fighting our grief and learning how to live back in society with all the things that we have seen and all the things we had to endure alongside Owen. We are fighting so no other family has to hear the helpless and definitive words of “there is nothing else we can do” and then watch their son slip away. In our eyes that sentence is simply unacceptable and it is what harbors sleepless nights and the myriad of questions.

I was recently watching a 60 minutes or 20/20 piece on Post Traumatic Stress Disorder (PTSD). The piece was about individuals who have fought in Iraq, some for multiple stays and are now back in the states trying to assimilate back into their ordinary life. They were asked about their time there and many of them cried or became speechless. Those who did speak often times said that there are very few that can truly understand. When asked if they would return to war all of the individuals raised their hands and said yes. When asked why. They said that it is the only place that people can relate to what they saw and endured. I found myself watching this piece and feeling like I could relate to all of those feelings in our 16 weeks at CHLA. (Disclaimer… I have never been to war and no members of my family are or have been in active duty in Iraq. If my ignorance on what “war” is like offends anyone I greatly apologize. I only know what I know from the tv/movies and after being in the hospital and seeing hospital scenes in the tv/movies I can only imagine they are VERY VERY different! But please bear with me.) The hospital and the people at CHLA are amazing and it absolutely is not war conditions. The staff knows and witnessed what it was like for us. They know Owen’s condition forward and back. 20130731-085119.jpgThey were there to witness us as hands-on parents and they were there when at just 16 weeks old we told him it was okay to go be in the arms of Jesus. Very few people outside of CHLA can share our story. Very few people fought every day their child was in their belly and it only intensified when he entered this world. Very few people mark milestones of their child’s life with the day he came off the ventilator, the day of his first and then his second open heart surgery, the day we discovered he had a neuroblastoma tumor, the day he gained his angel wings and was gone from our arms forever. Our view of what it is like to be first time parents is skewed. Very few can relate and we would never ask anyone to try. It is much like those military warriors, they fight with everything they have for our country and then come back to live in it and feel lost and confused. We fought with everything we had for a life to live here and he was asked to go home. Now we have to learn to live in this life that we fought for him to stay in, without him in it.

This is why we are spending so much time carrying on Owen’s legacy through the LionHeart Owen Foundation. This is why everyday I go through pictures of our son and never allow him to leave my mind. There are so many families like ours that feel alone in their grief or feel alone battling each day and celebrating their “new” and foreign milestones. Grief is not only with those of us whose babies are in Heaven, grief is also with each mom and dad whose child has a special heart and each and every day is a gift. Grief is in the hearts of moms and dads whose child is on the countdown to the next heart surgery, whose child is having difficulty breathing due to the common cold and that could mean a trip to the ICU, grief is in the hearts of moms and dads whose vision of parenting is being played out much different with doctors and nurses as their “best supporting actors”. I recently spoke to a heart mom whose baby finally went an entire day without throwing up. She is tube fed and this has always been a struggle for her. This is huge and such a great accomplishment for her family. However, she was in tears because she spent the day with a friend who unintentionally spent their entire visit asking why her daughter hadn’t rolled over yet and why she isn’t progressing on baby food, etc. She was heartbroken that her precious angel was being compared to a typical developing baby achieving milestones that would take her little one some time to catch up to.

20130606-181023.jpgThis world of being a heart mom makes life different forever. I am just barely scratching the surface on it and thank you for being with us as it grows. We will be making some big changes to the website and launching many exciting things with the Foundation in 2014. We always envisioned having resources and support for families on this journey and also resources for family and friends that are trying their best to understand. Thank you for being with us as we navigate them and celebrate Owen’s milestones in this way. If you are looking for support or know someone that is please private message me and we will connect them to people in their area that can help. Together we can make a difference.

Be kind for everyone you meet is fighting a hard battle…