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!