People always tell me: “You can’t even tell she’s had surgery”… or “She looks so great, you can’t even tell”…. Or “She looks just like a ‘normal’ baby”. I get comments like this all the time.
I have pictures of Scarlett posted all over my cube at work, so basically anyone who passes by my desk can see her. Also, by now, everyone at my work (300+ employees) knows about Scarlett’s heart condition because I mentioned it in an open forum during 'employee recognition'…(well, I had someone read what I wrote the day of Scarlett’s surgery). So, it often happens that people stop by my cube look at her picture(s) and say: “She looks great/normal/healthy, etc.”
I never really know how to take this. How should a CHD baby look? Obviously CHD babies on oxygen or feeding tubes physically look different, but what are these people expecting? Blue babies? Pale, sickly looking babies? It makes me wonder…Would I say something like that to a heartmom if I wasn’t a heartmom myself?? Then I think, yeah, I probably would. I don’t take offense, but I don’t know what to say… so I just say “yeah, she’s doing amazing, I’m really lucky”.
I always make sure to say “I’m one of the lucky ones”, because I think of the moms of babies who are no longer with us [all the Heart Friends labeled “Angel” on the right side of my blog]. But despite Scarlett ~looking~ fantastic…she’s been through hell and back, and all I can say is looks can be deceiving.
Along those aspects, let’s talk about the façade that I put up on a daily basis. Everyday, I get up, I get dressed, I go to work, I seemingly function and get my job done, I come home, take care of my babies, I pump, I Facebook, I blog, I email… just like a “normal” mother. But looks can be deceiving. . . I am not okay. I am not strong. I am an emotional wreck inside.
This past Friday at Scarlett’s 9-month pediatrician appointment, the doctor walked in to the exam room and said “Hi mom!”, and I said “Hi”, and she said “So, miss Scarlet just had her surgery, how is she doing?”, and I said “Great”, and she said “How are u holding up, mom?..how are you balancing work, home, hospital and everything?”….then from out of nowhere, I got a huge lump in my throat and I was choking back tears. I said “I don’t know… I’m sorry, I think I’m gonna cry”…and the doctor said “Oh no!, why?”, and I said (with tears streaming down my cheeks): “Because I honestly don’t know how I do it… it’s very stressful… and it’s HARD”. I may appear to be strong, but I'm a weak, fragile, sensitive little sissy.
I am definitely not as strong as people think I am. I fall to pieces at the drop of a hat (whatever that means). Inside, I am an emotional wreck. Outside, I can keep it together pretty well. I can crack jokes, I can smile, I can cook, clean, work, and schedule all of Scarlett’s appointments. I can refill her prescriptions, pump my breastmilk, make her fortified/thickened bottles, update my blog, attend Eller Heart Family Council meetings…but when it comes to my emotional health, I’m a walking time-bomb. Ready to detonate at simple questions like “How are you holding up?”. For this reason, I’ve made the decision to get myself into some therapy. I don’t need ‘happy pills’ as my sister calls them, but I could probably benefit from talking to a professional about my emotional instability. Or maybe this is all a normal part of being a heartmom? I guess I’ll find out.
For now, I'll just say that when you look at Scarlett, or when you look at me.... appearances can be deceiving.