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)
Dr: I see 4 chambers so its not half a heart.
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: 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!
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.