This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Monday, November 23, 2009

Appearances Can Be Deceiving

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? 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.


  1. I know all too well how you feel. I put on a happy face every day in hopes it will disguise all the anxiety and stress I feel. I, however, would like to try some 'happy pills'. My sister is on them and she says they really help her. You put into writing exactly how I feel and for that I say 'THANK YOU'.

  2. I couldn't have said it better myself.. you are not alone..


  3. When we thought Taylor was on the verge of surgery and not eating and stressing me out to my breaking point, I went to a counselor. I unintentionally only went one time (it was jsut one mroe thing to try to schedule in). But it was comforting to just get to throw all of your emotions out there to someone who didnt try to "solve" anything and wasnt also emotionally tied to the situation or feel the need to comfort you. Just there to listen. Some people may have more of a family support group for that, but I always feel guarded in some way or another with people I know- so to have someone on the outside listen seemed to help. The only real tip that he gave me- other than telling me that im anxiety was 100% normal and he's be more worried about me if i wasnt a basketcase- was that every day I HAD to take a few minutes for myself, to relax, meditate, process the day/my emotions etc. I was pumping at the time so I wasnt even leaving work at lunch- every single moment was filled with things that werent for rejuvinating myself. He said even if I just walked outside and stood there taking some breathes of fresh air, it would help. Looking back, I guess it did. But really just unloading all of the emotions was the best part. I definitely think you should do it. Let me know if you get any great advice. Maybe I'll schedule another appt someday :-)

  4. Just glanced back over that and saw the number of typos...but too bad- I'm sure you can read it :-)

  5. Not to be mean, but glad to hear it! I am not the only one. I am all over the place. One day someone asked me how I was doing at church and I lost it. Uncontrollable. Then the next week I saw someone at the gas station. From across the way she said "how is your baby doing?" I casually kept walking by and said "oh, he died",like it was no big deal. Her jaw dropped.
    You are so strong. . . don't doubt that. Not many could balance everything you do while walking around that fun place where babies skirt life and death. One thing that helps is just getting it out. The tears, the thoughts, etc... and during our battle I felt proud the days I could just put one foot in front of the other. You do sooooo much more than that. Not to mention other stressors like a dying grandfather. Take care of yourself! Do whatever you need to!