Trick or Treat

20131031-063937.jpgAt 57 days our courageous lil’ lion was extubated! He took his first unassisted breath and let out the greatest roar! It was the biggest treat for us!!!

Today is 57 days without Owen. We’re pretty sure he is dressed up in Heaven like the cutest darn lion and running around giggling with all of his friends! We love you lil’ Lionheart and miss you like crazy!

Wishing all of you a Happy and Safe Halloween! Go to one extra house, let your kids eat one extra piece of candy, and stay up late! Treasure these moments! Life is but a blink!

Trick or Treat Heart Family!!!

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Kid you’ll move Mountains

20130710-094415.jpgToday I find myself face to face with Wednesday, AGAIN! I petitioned God for a lifetime without Wednesdays but he clearly has shown me that all the Hump Day lovers out there over ruled me! And since I can’t get rid of them I have tried something new and I think I may be on to something. I was praying the last few days for God to show me he is here and show me that he is taking care of our sweet baby boy. Sometimes in the midst of all of the chaos and “life” we have been living I find myself caught somewhere between faith and doubt. When I am on Team Doubt Wednesdays flat out stink! God apparently was not too thrilled with the amount of time I have been spending on Team Doubt and has been shouting from the rooftops “I AM HERE AND I GOT HIM!!! STOP WORRYING!!! CHECK OUT JEREMIAH 29:11, AGAIN! SHEESH!” Ok, maybe he hasn’t been that loud but short of sending carrier pigeons, I can say THANK YOU God for answering this prayer exactly the way I needed it.  The incredible angels disguised as friends, fellow heart moms and clients have boldly told us that you are here. This Wednesday, I woke up on Team Faith!

Today is 8 weeks since Owen passed away. You would think that it would be tough for us. But, the truth of the matter is EVERY day is tough for us. Every day is like the first 24 hours after he went to Heaven. I switched gears and instead of thinking what life is like without Owen, I reflected on what life was like WITH Owen at 8 weeks. You will all remember this day vividly (if you’re new around here click here for the post), Owen’s heart brutha, Evan was one day post heart transplant and Owen was geared up for extubation. This would be one weekaversary for the books! Our son was climbing a huge mountain and victory was about to be his! Evan was extubated and was doing well and Owen was supposed to share in this victory with his heart brutha. But, we all know Owen and he was not about to share this milestone. He did things his own way and still does! We spent all that day in prayer and hope that our son would take his first unassisted breath and we would hear him cry for the first time.  I think of the strength and the faith the three of us had in that room that day. I dig deep for this strength again and it empowers me to fight for Wednesdays. Owen climbed mountains everyday of his life. Now he is MOVING Mountains and we’re here on earth to help him!

20130709-123619.jpgWhen we were in the hospital we got Owen, “Oh the Places You’ll Go” by Dr. Suess. We would read it to him every week on Wednesday. When he was ready to be transferred to CVAcute and onward and upward to home we asked his attendings, fellows, nurses, respiratory therapists, and any professional that helped heal our son to write to him about his time in the hospital. We were concerned that when Owen grew up he would think of his first few months of life as sad, dark, and dreary stuck in the hospital. We wanted him to get a glimpse of some of the amazing people that he spent time with everyday. It became his CHLA Heart Institute yearbook. The book continued to be filled with heartfelt messages as we spent time in CVAcute, went back to the CTICU, returned to CVAcute, back to CTICU, and so on. There were several medical personnel that signed the book after Owen had passed. This book has become the most treasured keepsake of our son. The book contains firsthand how our tiny miracle changed the lives of staff at CHLA while changing lives around the world. Our favorite line from the book is “And will you succeed? Yes! You will, indeed! (98 and ¾ percent guaranteed) Kid, you’ll move mountains!” It’s nice to know he was listening to us at such a young age!

Grief has given me a heart of gratitude. I am grateful that Owen was diagnosed inutero. I am thankful that the staff at CHLA welcomed us with open arms. I am thankful for the cardiothoracic surgical genius that Dr. Starnes is. I am thankful that the team was ready when Owen was born and supported him when he was born not breathing. I am thankful for the nurses, doctors and specialists that tirelessly took care of our son. I am thankful for our Mother and Father intuition and the times it saved Owen. I am thankful for our family for sticking by our side. I am thankful for the heart mom’s that cried with us, laughed with us and were raw with us. I am thankful for our heart family and the tremendous support and love you have all shown our family! I am thankful that we got Owen on this earth for 16 weeks. I am thankful for the way his life and death has forever changed me.

20130711-102209.jpgOur hearts swell with pride each time we receive a story from one of our heart family members on how Owen has touched their lives. Currently LionHeart Owen has over 4,300 followers on Facebook and our blog is followed in 81 countries! We pray that as time moves forward, Owen’s love and joy for life will be remembered as vividly as it is today and our heart family will continue to grow. The Foundation has been great therapy for Jeff and me as we grieve the loss of our courageous lion. Lionheart Owen Foundation (LHO) is being established in Owen’s name to continue the fight against CHDs and carry on his legacy. Upon Owen’s diagnosis we were left in the dark and sent out blind to fight a fight we knew nothing about. But now armed with knowledge and a lifetime of experience, we can’t sit back and allow other families to navigate the waters or feel like they are raising their special miracles alone.  LHO pledges to raise awareness, develop and disseminate educational material to the public relating to CHDs and support children, families, caregivers, and medical personnel impacted by CHDs.

When we first started this journey, we told everyone, “We are not sure how this all will play out but we’re going to do our best to take it one day at a time” and that is what we have done. None of us could have imagined that this would be God’s plan for our son and our family. We do not feel blessed for our circumstances but we feel incredibly blessed for knowing Owen and knowing all of you! We feel blessed that a tiny boy, without a voice, has changed so many hearts all around the world. That little man had the power to inspire and move people in a way that you and I could only dream of doing. He is our miracle and we feel blessed to share him with you and share our story. You have all ridden the ride with us and have held our hearts for every high and every low. For that we are forever grateful and that knowledge makes each day… even Wednesday… just a little easier!

1st Annual LionHeart Owen Bunco Night

Bunco EVite
Something exciting is happening over at LionHeart Owen… On November 8th it’s Ladie’s Night at the 1st Annual LionHeart Owen Bunco Night! Join us and enjoy Raffles, Prizes, Snacks, and of course BUNCO!!! But wait…. Ladie’s Night would not be complete with out SHOPPING!!! We have some great vendors like Mary Kay, Stampin’ Up, Three Peas Creations Stamped Jewelry, Thirty-One, Scentsy, Velata, and many more showcasing their holiday lines! Proceeds from the event will benefit LionHeart Owen. Please email lionheartowen@gmail.com with your email address to be added to this great event!

Grief Dance

20130703-102122.jpgToday as I was leaving work, I started to reflect on my new normal. The routine is settling in and I am slowly learning how to balance missing Owen and living life. Work feels as if I never left and it is glaringly obvious that while our lives stood still at CHLA everyone else moved on. We spent every day with Owen, as members of the heart family club learning the choreography to the “heart dance”. While the world outside was spinning, we sat by his side and learned to be content in the two steps forward one step back. We saw beauty and found hope in each move. Every step forward was a huge victory. Every step back we held his hand and savored every second.

We now find ourselves in a new club trying to learn all new moves. We do not wish this club on anyone and our hearts break with every new added member. The “grief dance” is not a series of two steps forward and two steps back. Grief is so far from linear. It rarely comes in waves, never consistent, but rather crashes on you like a tidal wave and wipes you out. And sometimes it silently sneaks up on you when you least expect it and without any warning. The grief dance looks less like the “heart dance” cha-cha and more like a drunken man trying to do the YMCA while having to pee!

My heart has been heavy with many questions. Much like the grief dance, these questions flood my mind without warning. Did I tell him “I love you” enough? Did he know that we were trying to save his life? Does he know all we ever did was try to protect him? Does he know that we would have traded places with him in a heartbeat if we could? Does he know that forever would not have been long enough and does he know that we will see him again? Does he know how proud I am of him? And many more. I know that these questions will never be answered but I try to find peace in believing that the answer to all of these questions is “yes”.

But, there are deeper questions that can’t be silenced that easily. They are not past tense questions but rather the forward thinking questions; the dreaming questions. What would I do if we had more time? What things would I have told him or taught him? What would he look like? What would he grow up to become?

Last night, I sat dreaming of his last days and how they would have looked if we would have known that he was dying. I pictured him dressed up in an outfit for each holiday. Jaxon was there and we took the best photo ops. We captured a memory with every breath. We celebrated each and everyone and danced with no abandon. He was smiling, we were all laughing, and we were living like the moments would never end. I was left happy with a picture and a memory for every holiday, not just an outfit hanging in his closet waiting for a baby and a celebration that will never come. As the highs and lows came and I got lost in this “what would I” half dream-half nightmare land a thought came to me… If we would have known he was dying could we have lived with as much hope and joy as we did every day? Could we have lived as optimistic and ended each day feeling as victorious as we did? I don’t think that I could answer those questions with a “yes”.

They say live like you are dying and there’s no doubt that we DID with Owen… We never believed that he would die at 16 weeks. We lived as if he would be a grown man with stories to tell. We lived each day and treasured every breath. We lived celebrating each moment we just didn’t dress him in all the goofy outfits. Which I am sure he is thankful for! There are no regrets with how we lived with Owen just heart ache that we don’t have more time.

Tomorrow is 7 weeks since Owen left this earth and I miss him more with each passing day.

Ripping off the Bandaid

hands and heartToday I experienced another first in life without Owen… I went back to work. Technically it wasn’t a first since I have worked since as far back as I can remember. –I know I am only 31 years old but when you start babysitting when you are like 10 years old and have had what feels like 4 careers since then it feels like a lifetime – On April 4, 2013 I was taken out of work and put on disability/bedrest. I had to drop everything, hand over all of my transactions, and walk out the door. It was sudden and unexpected. I freaked out and felt like everything I knew was being taken from me and all I could do was just go home and sit and grow a baby!

Since then I spent 5 weeks awaiting the arrival of Owen, experienced his amazing and terrifying birth, fought relentlessly all 112 days of his amazing little life, survived sitting in the waiting room through 2 open heart surgeries and multiple procedures and tests, held him as he took his last breath, said “good bye” and “see you soon” at his celebration of life, and have had several weeks to settle into or atleast adjust to life without Owen. You’d think I would be a pro at this stressful situation thing by now?!?! But, for some reason going back to work feels like one of the hardest things I have had to do. I have been down all weekend and have dreaded walking into the doors of my work. I feared the “I feel sorry for you” expressions that I have received from people that just don’t know what to say but their hearts are broken for us and Owen. What I have feared most of all is getting back into a routine and diving back into my career. Because while I always pictured myself as a working Mom, now being back at work fulltime means that Owen is not here. There is no dropping Owen off at Nana’s or daycare as I race to work. No rushing to get home because I missed him so bad during the hours at work. No phone calls throughout the day to see how the little man is doing. No sleepless nights because our little one has kept us up and not enough coffee in the world can keep us sitting up in your chair and focused for a full workday. None of any of it!

When you’re a Mom of a baby that lives in Heaven, there is no physical responsibility of having a baby here on earth. No runny nose that you need to stay home for and take care of, no daycare to rush to, and the only sleepless nights you have are from heart ache that your baby is not here. There also isn’t a phone number you can call to check on your little one. (God really should do something about that one! FaceTime to Heaven!) There is no Nan, Nana or Grammy loving your cutie up while you are slaving away. There are also no precious smiles and giggles to come home to and make it all worth it. (Unless of course you have a Golden Retriever at home and then there is one big smile with a lot of sloppy wet kisses awaiting you as you walk in the door!)

But what there is and always will be is my amazing husband reminding me that this is not it for us. There is God’s promise that he has plans for us to have hope and future (Jeremiah 29:11). There are gracious clients, employers and friends standing by us each step of the way. There are the incredible stories of lives changed and hearts touched by our precious little boy. There are the experiences that we are now a part of because of our little boy. There were so many people cheering me on today through phone calls, texts and emails. Our incredible social worker from Children’s Hospital of Los Angeles emailed me as I was nearing a Stage 5 meltdown this morning. She simply said, ”Anticipation is sometimes worse than the actual experience”. Ahh no truer words have been spoken. How many times in the last 6 months or the last 31 years has the anticipation been so much worse than the actual experience? And how true those words were today, when I showed up at my office and fell into the arms of my Fidelity family, wonderful women and one amazing token man that walked every step of my pregnancy with me and cheered me on daily from back home (physically and through an outpour of welcome back emails). No judging, no sad faces, just smiles and genuine joy that I was back. I am blessed! I am thankful that today when I ripped off the little bit of “going back to work” bandaid, it stung but I recovered. I am happy to be back.

On a final note… This blog post was supposed to be about another phase of grief and finding our new normal in our life without Owen. But, as I started to type it took on a life of its own. I call this phase of grief ripping of the bandaid. Each first is like yanking a bandaid just a little bit off of a really hairy arm. It stings like hell but you have to keep ripping it if you want it gone. This year is going to be full of a lot of firsts; Halloween, Thanksgiving, Christmas, Mother’s Day, his Birthday, etc. Each one of these is going to be another rip of the bandaid. Until one day we look up and all of the firsts have happened and the bandaid is off. We will be left with no more firsts, no more yanks and no more new. There will just one big deep scar showing what we have been through. It may hurt when second milestones come around, or painful memories, or what life may have been like if he was still here with us. Some may notice the scar and ask about it while others may look away as they see it as just a part of us. But eventually the bandaid will be off. Thanks for being with us as we rip off the bandaid. Sometimes it hurts worse than others but the pain is a little easier because we have each one of you holding our hand as we rip the bandaid. (Click here  to see another blogger write about ripping the bandaid. She says everything I wanted to say).

CHLA Heart Institute does it again

Children_s_Hospital_LAWe are incredibly honored and blessed by Dr. Jay Pruetz, Dr. Ing, and the rest of the Heart Institute at CHLA. They helped save Owen’s life and gave us 16 beautiful weeks with our precious son! Here is just a glimpse at the incredible things they are doing and the lives they are saving. The possibilities are endless if we just continue to draw awareness and support congenital heart defect research. The Vatter family loves you CTICU!!!

Click HERE to view the article

Grief is EXHAUSTING

20130619-162424.jpgMost people don’t like Mondays… As the weeks go by I realize Mondays are fine… I hate Wednesdays. If you are working or in school you celebrate Wednesday. It’s hump day. Half of the week is over and the weekend is in your horizon. There is now even a commercial with a hysterical camel reminding you that its hump day and the week is almost over (if you have never seen the commercial click here. It’s good for a chuckle). For us, Wednesday is a day that signifies our highest highs and the day of our lowest low. It’s a day I can’t avoid and a day that weekly creeps up on me and weekly brings with it a plethora of emotions that I am unable to box up and spread out among other days.

Owen was born on a Wednesday and each week I would excitedly wake up to celebrate another week conquered and another week won. I would get him dressed up in his cutest outfit and we would have a fun photo op with blocks or signs of victory. I was never sure if Owen liked them as much as I did but he never failed to give me at least one little smirk during the process which most of the time I would miss with the camera (sorry about that).Those smiles will forever be engraved in my memory and I thank God for that. Every week we would celebrate around the world and your comments would reenergize us. We would embrace the tiny miracle growing and thriving in front of us and put on our armor of strength and love to battle another week. The day would progress, Owen would go down for a nap, and we would head up to the Literally Healing Library on the 6th floor at CHLA. Our favorite volunteer Librarians, Patsy and Elaina, would always be there to greet us with the biggest smiles and even larger hugs! We would gush over Owen and the new first that he encountered for his week birthday; we would cry in their arms if he was having a tough day; and above all we would just be thankful that they were there, without fail, always constant.  The day would always end with the three of us celebrating the time together or coming united to take on the next hurdle.

We will all never forget the morning of his 16th week birthday. There were no signs, no photo ops, no morning of joy and celebration. There was a heavy weight in the room and the feeling that God would be taking our precious angel home. Rounds were concerning and there was not a clear plan for the day. Jeff and I were taken into a conference room with his entire team and we were told that there was a strong possibility Owen would not make it through the day. We walked out of the meeting lost, scared and unsure how to proceed. We did not want it to be real. This could not be his last birthday that we celebrated on earth. We called our family and looked at Owen who was peaceful and asleep. How could this be? We needed a breather to process everything that was about to happen. We rushed upstairs and fell in the arms of Patsy and Elaina. Then we raced back down to spend every breath with Owen. Doctors and nurses came in and out of the room, some to pay their respects and others to check on our son, family surrounded us, and time kept moving forward. But the three of us in each other’s arms stood still and prayed that this was not the end. We eventually gained the courage to tell Owen it was okay to go. God was ready for him and it was time for us to give him his baby back. We breathed together as a family for a little over 6 hours until Owen took his last breath in my arms at 5:05 pm on Wednesday, September 4, 2013. There was no ending of the day united, victorious, and celebratory. It was just done. Our fight was done and it was time to go home. We loaded our car with our material things, memories, and a weight of sadness that we will carry for a long time.

Today is Wednesday. They will always be here. They are constant. They will always show up. There will never be a week without a Wednesday. They will always mean one more week since the last time I held Owen; since the last time I smelled him, since the last time I whispered in his ear “I love you”. So, today marks 5 weeks since that dark Wednesday that Owen took his last breath in my arms.  I know over time they will get easier and life will have a way to distract me from the glaring reality that Wednesday is here. One day we will be in heaven and there will be no night and no day and there will be no Wednesday. And as I write to you about Owen’s last Wednesday I realize that through our feelings of sadness, loss, confusion and anger that Wednesday 5 weeks ago truly was a day of celebration. Our prayers were answered. God took away all of Owen’s pain. There was a huge victory… Owen won! He went on to eternal life, he went safely home, with Jesus free of the hospital, free of disease, with a healed heart. He entered a world of daily parties, regular celebration and days that always end well. No more fighting, no more tears, no more fear… Just joy! We will one day be united again and for that promise I can get through this Wednesday. Like every other statistic and probability we heard with Owen’s condition we will chose to look at the positive. This is not 5 weeks since being with Owen. This is 5 weeks closer to being with Owen.

I have to take a pause here and thank you for continuing to travel with us through our journey. I know as of late we have had a lot of “administrative” type things on our site… Owen’s celebration, t-shirt sales, OC walk to remember, and now the LionHeart Owen walking club. This act of keeping myself VERY busy, I’m pretty sure is all part of the Denial stage of grief. As our life evolves, the Foundation takes on a new life of its own, and life without Owen hits us I will be using his website to announce a lot of this “administrative” type stuff. I will send out updates when things have been added but –please feel free to check the “Events” section of our website. Phew… Glad that all got out of the way and we still have our Heart Family bearing with us.

So, as I woke up thinking about 5 weeks in Life without Owen, I was brought to thoughts about the stages of grief. First off, I have to share with you that grief is EXHAUSTING. As you know, I have a psychology degree (that every month I am reminded of that I have through my student loan payment… UGH!). I never knew what I was going to do with it. I just wanted to have a degree. Education is something that no one can take away. I wanted to have a degree and be proud of the accomplishment. I wanted to one day sit and tell my kids the importance of going to college and look them square in the eye and be able to say “trust me… I know because I graduated”. When they ask what I did with my degree I will tell them, I survived Life! One thing I never expected was that my Psychology degree would be like the most expensive and effective counseling I would ever have. My degree gave me a text book definition of what grief would be like. There would be 5 stages. One who grieves should be prepared to go through all stages; denial and isolation, anger, bargaining, depression, and acceptance. What those text books didn’t tell me was that you can go through all of them in ONE day! Wow! It is crazy. Stages of grief can creep up on you when you least expect it. There you are having what seems to be a perfect sunshiney day and in creeps grief. Right there smack dab in the middle of it. Oh and it doesn’t call or text you to tell you it’s coming. No tweet, no #yoimabouttomessupyourday! It is just there. But, what my degree did tell me to do is be kind to myself and know that those stages will come and I should embrace every stage. Whenever it creeps up… Live in it, process it and move on from it. If you are experiencing grief or loss and you cannot move on from a stage please seek professional help. Shoot take it from me a Psych major, Psychology is awesome and an incredible tool for your mental health. Talk to someone. No one is alone in this world. Thank you again for being there for us and reminding us that we are not alone. We are in this struggle together…

Adventures of Lucky Leo and LionHeart Owen

There are many adventures and “plans” we had for our lil’ family. We know the holidays will be very hard as we have many “firsts” in our life without Owen. We do not want to miss an opportunity to celebrate him though and will continue to do those things for Owen. We decided to take his best buddy Leo for the adventures that he won’t take here on earth! Enjoy!!!

IMG_8610Leo Hanging out in his dollhouse…. Mansion!

IMG_8611Leo’s first Ponyride!

IMG_8613His first quad ride on his lucky number… 5!

IMG_8614Leo on a John Deere

IMG_8615Uh oh… Someone is stuck in the cornmaze

IMG_8616you are my sunshine

IMG_8617Leo and Owen in the pumpkin patch

IMG_8618We miss you, Owen

IMG_8620Looking for the BEST one

IMG_8621We found em’

IMG_8623Oh no!! The sheriff got him!

IMG_8624

A wonderful day at the pumpkin patch… Everything was perfect except missing our boy!!!

OC Walk to Remember Photos

Thank you for all of your support in the OC Walk to Remember. What an incredibly BEAUTIFUL and EMOTIONAL day! The OC Walk to Remember gave us a space to celebrate Owen and support other families who lost a life too soon! It was a morning of immense love, numerous tears and nonstop celebration! Owen was definitely there too! There was wind like you wouldn’t believe. Maybe I shouldn’t have brought 100 pinwheels! I think he was trying to help and make sure that they all blew!! Oh Owen!!!!
Below is an article about the walk and Owen, Leo and I made it in the paper again (It was in print in the Sunday paper too)! This kid just wants to make sure EVERYONE knows him. Thank you again for your support, sharing his story, and loving our family! Here are a few photos of this very special day! ENJOY!
IMG_8606 IMG_8626 IMG_8609IMG_8631 IMG_8607  IMG_8625  IMG_8628 IMG_8629  IMG_8634 IMG_8635 IMG_8637