i remember when we first received otto’s diagnosis this group of “heart moms” reached out to me and offered me this overwhelming amount of support. however my mind was closed. i was not a “heart mom” i was not having a “heart baby” this was going to be a simple blip in our radar, be fixed and move on with our lives. if i would have known how much the roller coaster of emotions we would have the next 6 months or the fears, the realities and the hopes… i think i would have worn that badge of “heart mom” honor a little sooner and leaned on their help.
having a baby with anything less than stellar health is fricken hard. i can’t speak to anyone else’s situation because i only know the depths of my own. but i can tell you there are so many similar stories floating out there and thank you to social media for helping us see that there are sadly so many. last night i sat at a stop sign out in the country letting my brain digest a few things. i wasn’t ready to walk into the house and i just needed a moment. i was in deep down into the caverns of instagram looking at another mothers photos who has a little boy with a CHD. the photos could be my photos. the shitty see you later door, the chest tubes, the feeding tubes the teeny tiny hospital gowns. they could all be my photos too. looking at those photos the smells of that day came back. the sterile hospital, the latex gloves, the gross lingering smell of yesterdays pizza from the cafeteria at 9am. sitting in the waiting room, being moved to a smaller room. literally having your own heart in your throat and your stomach about to fall out your feet it has sunk so low. so many families have known this fear, pain and hope and i think that is what gets you an awareness month.
i’m so so guilty of being a surface level giver. i’ve given to breast cancer, autism, MS you name it. i’m not bragging here because i’ve done so out of “it’s the right thing to do” without getting to the depths of all the families, the stories, the survivors and those who left us too soon. there is, i am quickly learning is SO much more behind the lapel ribbon pins and colors. there are hearts. there are babies. there are families with so much hope. there are incredible doctors who have dedicated their lives to helping our sons and daughters survive. i see our surgeon and doctors from time to time around town and i stop and gawk like they are celebrities because to me they are. i see our surgeon from time to time and i just look at him and his hands and know that those are the hands that guided my sons open heart surgery. he directed the team and made the calls that saved our little boys life. there are not enough ribbons, donations, prayers and salaries big enough for this man and his team. any parent who has had to hand their child over for surgery knows this desperate feeling of gratitude for their dedication and discernment.
i’ve pictured my life a hundred different ways growing up. and many things have happened that i never saw coming. Otto my dear sweet boy, you are the biggest impact i’ve never saw coming. having a child with a CHD forces you kicking and screaming to take things day by day. it forces you to control your brain from wandering, soaking up every last drop of good moments, treasure your time at home, grateful for support (and having to accept it as independent as you might be), learning to have compassion and grace you didn’t think you had in you. it also has forced me to turn my eyes back to God. twist my arm into forfeiting my own will to his.
here is my challenge to you. before you give to an awareness month charity or cause, get to know someones story. get to know the impact of these diseases and challenges. understand it at a deeper level. know that these donations are going to help these people you’ve followed and gotten to know. know the impact you are making. and know that we are so so grateful for you.
much love,
abby joe and otto
ps the link to otto’s heart warrior pants can be purchased here. They were designed by my talented friends Wildship Studio and Alpine Baby Co a portion of the proceeds supports the Hudson Heart Project.
