Update from Brody

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Hi Heart Family,

I asked my big brother, O-Dawg if I could write on his website and he said everyone would be happy to hear from me. Mommy and Daddy went to the doctor today and got some really great news.

I’m doing REALLY Great! I’m average with every measurement and right on my due date for everything they checked! I weigh about 5 lbs 7 oz and the doctor said he thinks I’ll be about 7-8 lbs! I’m a healthy growing boy! Mommy and Daddy are thrilled!

I love you all and thank you for loving my family back! I sure am glad that God and Owen picked me to be my mommy and daddy’s second son and get to know all of you!

Love,

Brody

10 months without our firecracker

photo 4It’s been a while since I’ve written. All of you have stood by our side and encouraged us to continue to share our story and have allowed me to shed my heart and be raw. Thank you for continuing to show up and giving us this place to heal. Writing was once an outlet for me at the end of the long day to share our victories, thank God for the milestones and plead for prayers from all of you that our son would receive the miracle of healing. Friday marked 10 months since Owen went Home to Heaven and I find myself in an emotional turmoil. As I feel the weight of 10 very long months without Owen I also feel the anticipation, fear and joy of 40 days until we hold our second son in our arms. As I’ve stated before it’s a lot to carry especially when you’re just trying to function in society with a barrage of third trimester hormones! God bless my husband for riding this roller coaster and laughing with me. He has encouraged me to start writing again so, here I am showing up with all of you… Broken, tired, huge, and kind of like a Fourth of July firework display!

 

Fourth of July 2013, my Dad (PeePaw) and Stepmom (Nan) were traveling from the east coast to meet their grandson for the first time. Owen was on the road to extubation and I was thrilled that they would get to see him without all of that tape all over his face. Jeff had gone back to work for a few short days at the beginning of that week and was desperately missing his wife and son but was thrilled at the prospect that Owen was on the upswing and we were headed toward the “h” word (home). photo 1I spent the days with Owen in my arms, studying every angle of his precious self and “planning” our first Fourth of July together. I couldn’t wait to celebrate this holiday with him. After all he had been my biggest surprise firework yet. Owen was fast asleep napping so I took the opportunity to race to Party City to get all the things one would need to give their son the best first Fourth of July celebration ever! I quickly returned and started planning out every detail, of course, when I wasn’t lost in awe staring at my tiny miracle. Then it was time to decorate! At one point I thought I may get in trouble with the nurses due to all of his lines and the oxygen I was carefully relocating for my decorations, but they allowed all of my antics. I may have gone a little rogue because Owen may or may not have gotten lost in my “Macy’s day parade” float! However, when it was done it was a hit and I felt like the crafty Mom I love to be! I will never forget the look on the Attending’s face when she came in to check vitals to start rounds. For a moment in those ICU walls we all celebrated our freedom, prayed for Owen’s freedom and forgot about milestones needing to be reached and obstacles needing to be overcame. We celebrated the day and most of all we celebrated another day with Owen.

IMG_6820Not surprisingly Nan and PeePaw fell head over heels for their grandson the second they met him and they enjoyed an incredible time visiting and getting to know him. Owen had an instant bond with his PeePaw and reached up to grab his finger out of a deep sleep. My heart melted at how many times they would hold hands together in the future. Working on his old car, discovering things in the woods in Vermont, chopping down firewood, and I’m sure my dad would have been the one to give him his first beer! They chuckled at the grand Fourth of July display I had created but were also thrilled that I did not let the hospital walls stop me from being me and giving our son an “outside” perspective.

photo 2Unfortunately, I think Owen was too excited to meet his Nan and PeePaw and he did not get extubated until they had left and their plane took off to take them back to Vermont. That was the first and last time they would see their first grandson alive. Typing those words shatter my heart and I think about how much was taken from each member of our family when Owen went to live in Heaven. We are all thankful that he is no longer here in pain and fighting a body that failed him from the second it started to grow but in the same breath we miss every second with him and witnessing the tiny miracles that God graced us with by giving us Owen for 112 days.

God continues to grace us with Owen even though he is not physically here. I remind myself to see him in each and everything. In sunrises and sunsets, tiny butterflies that visit me each day, lions that I find randomly in my travels and some that I had walked passed a million times have so much more meaning now. Most of all, I see him each time I feel his brother kick and grow inside my belly. Brody is truly a gift from God and he has brought us a healing that I do not know would have been possible without him.

imageI have struggled with sharing about Brody because this blog was created and centered around Owen, his CHDs, childhood cancer, and grieving the loss of a child. The blog and website were designed to educate, draw awareness, and assist other families as they embarked on this journey. Jeff and I have talked a lot about allowing Brody to have his own identity and finding that balance. Just like we never wanted Owen’s conditions to define him, we don’t want Owen’s conditions to define Brody either. But at the end of the day, Brody was gifted to us by his brother and Brody will know his brother! And we want all of you to know Brody too! It is part of our grieving process and I know sharing the journey of welcoming our “rainbow baby” (the term that is often used for the baby following an infant loss) can help many families. As John Lennon said, “we were busy making plans when life got in the way”. So, hang on… we are all about to embark in another wild adventure!

And you don’t want to miss out on the fun things coming from LionHeart Owen this fall! Owen’s one year celebration in Heaven is happening September 4, 2014, which is also the launching date of the 2nd Annual LionHeart Owen Book Drive, October 4, 2014 we will be walking again with 2014 OC Walk to Remember, a Forever Footprints event honoring and remembering all of our babies who have left us too soon, and in November will be hosting the 2nd Annual LionHeart Owen Bunco Night! We will be updating the website and the blog in the coming months and making it much more user friendly! Stay tuned for details and feel free to email us should you want any more information or would like to participate in any of the above events.

A HUGE Thank You…

20140525-175240-64360401.jpgThank you for joining us today at the First Annual LionHeart Owen Foundation birthday Blood Drive! It was a great success! Atleast 200 people celebrated with us in person and rooted on the incredible lifesavers! We had a total of 78 donors register and 51 units donated! Each unit can be broken into 2 which totals102 products donated!! That’s a lot of lives saved!!! Our oldest donor was 87 years young! Due to an incredibly overwhelming response about 40 people were turned away from donating. If you would still like to donate and were unable to join us today, you can visit http://www.desertbloodservices.org and use the LionHeart Owen code: 9058.

The Desert Sun and KESQ were in attendance today and Owen’s birthday will be airing on channel 3 Local News at 6pm and CBS2 local at 6:30 tonight!

A special thank you to the tireless work of the LionHeart Owen blood drive committee, the incredible staff of Desert Blood services, and of course our precious Owen for inspiring all of us to pay it forward and never give up! And lastly we would like to thank our heart family, your support and love is what continues to fuel us and keep Owen alive here on earth! We are forever grateful to all of you!

A Message from Owen

10269261_701959179868284_8741352427504461224_oHi Heart Family,

O-Dawg here! It’s been awhile since I have stopped by. My Mommy and Daddy sure do miss me and I thank all of you for reminding them how loved they are by our heavenly father and how many of you are there for them when missing me just hurts so bad!

I have been very busy welcoming new friends to Heaven and there have been lots of fun parties! My friends Weston, Ethan, Katherine, and I were busy making mud pies for Mommy’s birthday recently and then got in a big mud fight. We laughed and giggled and have so much fun together being kids in healed bodies! We were filthy and I wish my Mommy had been here to give me a bath but we had my grandma and other family to help out until she is with us up here.

Speaking of parties, my birthday is only a few weeks away! How cool is it that YOU will get to save a life in honor of my short life on earth! There are so many people that aren’t ready to join us in Heaven and God still has big plans for them down there with you! Please schedule your appointment and party with my Mommy and Daddy at my first birthday party! I know it will be a VERY hard day for them and all of your love and generosity will keep smiles on their faces.

You can schedule your appointment by visiting www.desertbloodservices.org or calling 800.879.4484. The party is from 10-2 at Sacred Heart School on the corner of Deep Canyon and Fred Waring in Palm Desert.

Mommy and her friends have been planning lots of things for this special day! Get ready for treats, crafts, face painting and more. And keep an eye out… I will be there too in every beautiful thing you see!

I love you all so much!

Smooches – Baby O

WHAT TYPE OF HERO ARE YOU!?

Don’t miss this incredible opportunity to save a life in honor of our precious LionHeart!

May 25th from 10am-2pm at Sacred Heart Church/School in Palm Desert!

Appointment scheduling information attached!

If you are unable to attend locally please WEAR RED on May 25th! Tell everyone you know about CHDs and Childhood Cancer! DONATE IN YOUR TOWN AND SEND US PICTURES!

Visit http://www.redcross.org to find a donor location in your area.

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Our Unexpected Blessing

10254008_690050067725862_406937011180057086_nMany of you have been asking about our precious Brody… Yesterday we had an incredible appointment. In fact, it was the best appointment we’ve had since I was 6 weeks pregnant with Owen. It’s been a long road for our family and yesterday was the reason we don’t give up! Our baby boy is HEALTHY! He’s perfect on all charts and our incredible Dr’s smile was solid proof of all of this! We have had so much support from everyone and we want to thank you. It’s been hard for us to celebrate and believe that this boy is going to come into this world healthy and without complications. While we still don’t know for sure, as things can always happen, doubt was the furthest thing from our mind yesterday! We miss Owen will every passing moment and ache that he is not here to celebrate and grow with his brother. We know that our time here is short and the 3 of us, plus Jax, will be living together with Owen in eternity before we know it! For now, we find peace and full hearts that our second son, Brody is healthy and will be in our arms in just 16 weeks!!! Thank you for celebrating these milestones. While to some of you it seems routine and waaaay too long, to this heart family, not having an ultrasound or check up for another 6 weeks is music to our ears!!!

Save the Date

♥♥ SAVE THE DATE ♥♥

Owen’s FIRST birthday is just 45 days away and it’s FINALLY time to tell you all about the celebration!

Join us MAY 25th in Palm Desert and give the GIFT OF LIFE by donating blood in honor of our precious Owen. If you are unable to join us we will have links to donation centers in your area. …

Blood Donation appointment scheduling and more details to follow!

We can’t wait to celebrate our precious son and save lives in his honor!

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A new beginning

When your a parent of a child with a special heart your life is never the same. The things you see fighting by your child’s side change your own heart and change your perspective on every experience going forward. When you’re child’s life is cut short because of CHDs you live in fear for every other child diagnosed with a heart condition and every child that will be born into the heart club that is 1 in 100. We feel so blessed and privileged to have gotten 16 weeks with Owen and have prayed that God would gift us with just 16 weeks and 1 day with his brother. If he chooses more, than we will praise him and thank him for every moment we get.

Jeff and I feel very strongly when it comes to naming our children. Owen’s name meant strong fighter and his middle name is Thomas after his grandfather. Owen’s name could not have been more perfect for him. We took the same care when it came to naming his brother. His baby brother’s name is Brody Aaron. Brody means second son and we feel it honors his brother in so many ways. To the outside world Brody will look like our first born, he will look like our only child. To our family and those that know and love us he is our second son and a perfect little brother to Owen. Aaron means strong mountain and our second son has already become our pillar of strength as we continue to mourn his big brother.

Today we visited CHLA… It wasn’t a visit for an open heart surgery or procedure, or dropping off a donation in honor of Owen. It wasn’t to visit with another heart family or to celebrate the great works of our heart family with 2600 in book donations. Today was the day we learned what was in store for our future with our second son. We have been very prayerful about this appointment and were prepared with whatever we would be told. We have had many appointments with our Perinatologist and he has no reason to believe that Brody is not developing “normally”. However, when you’re a heart parent you want concrete and in the medical world that is something you’ll never get.

We stepped into the same room we visited several times when I was pregnant with Owen and again met with one of Owen’s incredible cardiologist teams to look at Brody’s heart. Our appointment was much different then the one we walked into about 18 months ago. The language was different. The emotion was different. The conversation was different. We spoke about God, heaven and how Owen is free from CHDs and how incredible it will be when we are living in eternity together. We spoke about how lucky Owen is to have made it there before us and not struggling to survive in a body that was failing him. We spoke about hope and faith and most of all about why God chose us to be Owen’s parents. Then we looked at Brody’s heart and gave ours over to God.

The appointment went much like this:

Dr: Well, it’s not Truncus (one of the conditions Owen had)
Us: exhale
Dr: I see 4 chambers so its not half a heart.
Us: exhale
Dr: Nice strong heart beat with no arrythmias, strong aortic valve and hear that click of the mitral valve. Oh and there are some beautiful veins.
Us: exhale
Dr: hmmmm….
Us: holding breath
Dr: Well, Jeff and Alissa I keep looking and I just can’t find anything. Brody has a healthy heart and I really so no reason to have to come back!
Us: EXHALE!!!!!!

It’s surreal to be told that your son is heart healthy and that now as a second time parent you will get the experience of being first time parents at home without surgeries, scars, therapy, procedures, medicine, exclusively pumping, lines and feeding tubes, nurse checks 24/7, confinements of a hospital, visiting hours, and many more restrictions. Sure some of those things may play out at home but not with the same intensity. There will be a different kind of fear and a deeper appreciation. There will be a love that we can’t put to words and a mixture of joy and sadness that will come with each moment spent with Brody. There will be a balance of new “normal” holding our healthy son and missing our son with the special heart. We will find a way to mix all of these feelings and ride the roller coaster as it comes. All while hoping not to screw up Brody too bad. We may have to put away an equal amount of money in a therapist account as we do in his college fund! Because although we heard today that he is heart healthy this heart mama may make him see a cardiologist every year till he’s 30 just for confirmation.

Praising the news we heard today and trying our best to love in the joy for the moment.

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6 Months Later

20140304-171155.jpgSix months ago today, I woke up after a few hours of sleep on a tiny make shift bed in the arms of my husband after endless hours of rocking our restless son. Room 34 had a stillness and a fear wash over it. I remember waking up in a panic, thinking I had slept too long. I pulled my hair back in a ponytail and assembled some type of outfit. I raced down to the first floor cafeteria in my filthy slippers and grabbed a cup of coffee. I needed something to knock me out of the half asleep half awake state I was in. I needed to focus. I remember waving to the same friendly security guard and faking a smile as I raced back up to the second floor to take on the day. Jeff and I saw it the night before. Owen told us he wanted to go. He told us he was tired. It was time for us to tell him it was ok. We were not ready but this was not about us. It was time for us to step up and BE parents. To do what parents are asked to do. ALWAYS put your children first. This morning there wouldn’t be rounds. There wouldn’t be checks by the nurses. There would be a tremendous change in our routine. A meeting with a small palliative care team and Owen’s main doctor in a windowless conference room. Words would be exchanged and questions would be asked that no parent should have to consider… Decisions on DNR and who would be saying goodbye. HUGE life altering decisions made by weary broken parents that could never be reversed. Everything was decided and we went back to room 34 to hold on to our boy and savor every last breath, every last moment, every smell, every sound, every millimeter of his tiny perfect body. We were saying goodbye to our greatest gift. We were being asked to do the impossible.

Six months later, I still wake up with the same panic, the same desperation to have one more breath. The same aching and longing to have one more second, one more minute. The same desperation in my heart to feel his embrace to hear the sweet coo of his voice, to touch his skin. Six months later our hearts still break every time our feet hit the floor in the morning and our heads hit the pillow at night with the realization that our son is living in Heaven and not in our arms. Six months later feels like a lifetime and every 24 hours feels further away from him.

The biggest thing that was taken from us 6 months ago was time. Time to make memories, to watch our son grow, to gain a bigger understanding and develop ourselves as parents, as his parents. We packed a lifetime into 16 weeks and it wasn’t enough time. Time goes on and no matter how hard we try it is the one thing we cannot control. One of the biggest things we learned 6 months ago is, while we can’t control time we can control what we do with it.

Jeff and I learned more and changed more in 16 weeks than most are faced with in a lifetime. The time we spend with each other, the time we spend remembering Owen, the time we spend loving and dreaming of our future with his baby brother, the time we spend every moment of every day is now treasured and decided with so much more care. We value each minute and value each breath because we watched our son take his last. We know how quickly it can end and how permanent it is when a moment has passed. Each day I wake up thinking what if today is the day I take my last breath and I am told it is time to join Owen in Heaven? The days that I get lost in routine and lost in life’s drama are the hardest. They are the days that I feel furthest from Owen. For that reason, we desperately try each day to focus on what a blessing our time is, a blessing each encounter is, and a blessing each breath is that we take while we are here.

Today I encourage you all to stop and smell the roses, ask a stranger how their day is and take the time to listen to the answer, compliment someone and mean it, help a coworker, spend a little extra time with your children during your nighttime routine, talk at the dinner table and don’t rush through it, ask your spouse how you can help to make their day better and follow through with it, do something valuable with your time and know you are making a difference with someone else’s.

Thank you for remembering our son. Thank you for continuing to spread his joy. Thank you for helping us carry on his legacy here on earth so that his legacy did not stop at his 16 weeks but has continued on during the 6 months that he has been gone from it. Thank you for never letting his mighty roar fade!

Swings Are Here

20140228-195922.jpgThey’re here!!!! We’re so excited to share that the swings have arrived at CHLA! They are going to give our CHD warriors some freedom and give them a new perspective of the world around them! It will also allow the parents to feel like their child is getting the same experiences a heart healthy kiddo growing at home would get! Thank you for allowing us to treat our CHD Super Hero’s like kids and NOT their conditions! These swings stand for so much more and YOU made it possible!!!

Kids, together we’re moving mountains!!!!

Much Love,

Jeff and Alissa
Owen’s Daddy and Mommy

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