#lifewithbrooke: Brooke’s annual Cardiology appointment.

Today is Brooke’s Cardiology appointment. Brooke has a congenital heart defect called tetralogy of fallot. (What Jimmy Kimmel’s son has) it’s a heart defect that simple put means she was born with 4 major defects of the heart and has require several heart surgeries and countless visits to the hospital…by the time this photo was taken  my child had been on a bypass machine, had her chest cracked open, closed with metal at the sternum and had 2 stints places in her pulmonary valves

 

96CEEEC2-4F1E-4334-ABB3-0E9D3C786FF2I used to say I wished that babies were see thru so I could see her heart. I like to fix things and solve problems but I couldn’t fix Brooke. I used to blame myself and wonder, was there something I did? I mean I was on anti-depressants…did I do this? What if she can’t have kids of her own because of her heart? What if she doesn’t make it? When she was first born I used to watch her sleep because I was so scared she was going to die. I was 21, a single mom and I had a baby with a heart defect I couldn’t even properly say.  I still remember the Dr… Dr Brian Winters telling me “You baby is very sick” from there it sounded like water filling my head and I don’t remember much else but asking “is she going to die?” He said “I’m not a cardiologist but this baby needs to be seen she has an appointment at Rady’s children’s hospital” that night I stared at my baby and cried to my nana and said “I don’t want to love her nana…everyone I love dies. My mom died, my died and now God’s taking my baby too and maybe if I don’t love her she won’t die” my nana said something I never forgot

”This baby night out live all of us..you don’t control who lives or dies all you can do is pray and you already love her or you wouldn’t be so upset”

I think asked “Nana why does God hate me? I just want someone to love me I feel like God has me on a hit list, why would he do this to my baby? Why my baby?”

My nana prayed for me and dried my tears tucked me and my baby in bed and drove us to the hospital the next day.

My nana, Brooke and I have made this journey so many times it’s ridiculous. I used to live at the Ronald McDonald house at one point, I would got to school, go to work then go see my baby in the hospital. It was the hardest time of my life. I went to class one day and came back and my baby was gone. I came out the room frantic looking for my child. A nurse said “Brooklyn is right here” My little baby was in the nurses station in a wagon smiling and playing. Those nurses took care of my baby and that’s the day I changed my career and became nurse. I wanted to help other moms that babies like mine. Just to know someone loved her while I was away helped so much.

I’ve always been in awe of Brooke, she’s sleeping now and just like when she was a baby sometimes I still check to see if she’s breathing. Brooke has never let her heart stop her from doing anything she wants to do.  Most people that know Brooke never know she had any issues. She doesn’t talk about, she’s in middle school now and being different is frowned upon. Every once in awhile I’ll catch her adjusting her shirt so her scar doesn’t show. This year I watched my child cry out of anger because she couldn’t run the mile fast enough to get a physical fitness’s T-shirt (scared me to death! She was trying to run a 9 minute mile for an awful Cotten blend t-shirt…she got her mile time to 1025 from 1330 but she still wasn’t satisfied…but I was terrified so I just offered to buy her any shirt she wanted 😂) I hate these damn appointments I find myself still wishing get she was see through so I could  know her heart. We still have one more open heart surgery to face when she reaches her teens…she’s 12 and grew 3 inches in a year so I’m scared shitless about today (excuse my language i’m just flustered…this child is my whole world)

 

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Brooke is my best friend…( No not like I’m trying to be friends with my child…it’s been me and Brooke since day one.. I used  to take her to college classes with me she would sit in the back and pretend she’s was in the class too. I took her to work with me, she would sit in my office and pretend she was a boss. I’ve done everything for this beautiful, intelligent gift from God but I can’t fix her heart. I know it’s not possible but as parent you feel so helpless. I can’t comfort her, I don’t know what she’s going through. I can’t imagine the pain she’s been in from healing. The discomfort and chest pains. I don’t know what she’s feels.. she’s the kind of person if you didn’t know she had a problem she’s never going to tell you what’s wrong, she just want to live her life. She lives to crack jokes and ironically enough her celebrity crush is jimmy kimmel…since she was two so know how weird it is to have a kid have jimmy kümmel on there walls🤣🤣🤣 I learn more from Brooke than she does from me. She taught me to live my best life regardless of what I’m going through. This girl has an upcoming open heart surgery but you’ll never catch her without a smile AEF5CEC0-1D2D-4182-B93F-C876AC0E0E05

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