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, October 11, 2010


I have to apologize for my last post. I was venting on a public forum, and I did not mean to offend any other heartmoms or other mothers of sick/ill children. I was merely trying to express my dislike concerning mother’s of healthy children who complain and grumble about trivial things such as household chores for the baby (cleaning high chairs, doing laundry, changing diapers etc), planning birthday parties, or taking your child to the doctor for regular checkups/vaccinations.

 If these mothers only knew what they had [if they appreciated the gift they had] they wouldn’t complain so much. Because there are mothers out there who wish their child was alive to change their diapers, or to fold their laundry, or take them for their shots. It infuriates me that they could gripe about something so pointless and petty when they don’t realize how happy and thankful they should be that they have a healthy child (colds, infections and normal childhood illnesses aside).


I, in no way, meant that any heartmom’s journey is easy. And if I implied that, then I apologize profusely. No heartmom’s journey is easy by any stretch of the imagination. CHD is a lifelong process. And requires lifelong follow-up and care with a cardiologist for something they (the child) had no control over.


As a heartmom, yes, I do get jealous of other heartmoms whose children are fully repaired, but my jealousy is immediately quashed when I think what that baby had to endure to become fully repaired. I only say that I’m jealous, because I wish I had what they have (the meaning of jealousy)… a quasi-sense of normalcy. In other words, I wish my child only had to go in for echocardiograms/cardiologist check-ups quarterly instead of monthly.

 But I don’t think anyone has it better or easier than I do.

 Going in for cardiologist check-ups and not knowing if they will require another surgery is agonizing. Being a heartmom is extremely difficult. The day they tell you that your child has a CHD is one of the worst days in your entire life. We all know the feeling, of helplessness, hopelessness, confusion, fear, guilt, and sorrow.


And I try to live with an attitude of gratitude.

 I am happy and thankful for each and every minute I get to spend with Scarlett. I know that every day with her is a gift... so even when the pressures of everyday life get to me, I remember that it could be so much worse… she could be taken away from me… she could be a CHD angel.


So again, if I made anyone upset or mad with my last post please accept my sincere apology. I didn’t mean to be negative, and I certainly didn’t mean to disrespect, insult, affront or slight in any way any heartmoms, or mothers of children with true medical afflictions.


  1. Hey Melodie, I get what you are saying. I remember those frustrations back before I had Lily. Thinking life was crazy and complicated and it was super stressful. Granted life before Lily wasn't a piece of cake for me seeing my eldest is mildly Autistic and my second son has Chronic breathing problems, but I too use to look down my nose at others and think that they had no idea what it was like to worry and stress over the little things when things could be so much worse. Little did I know that I was going to be blessed with Lily and her heart. She taught me that yes, life can get worse, stress can get worse, but even though it was bad, it could get even more so. I stopped looking at others as if our problems were worse then theirs and they needed to be thankful for it. I looked at them and was reminded of myself before Lily and how I use to think a runny nose or back up house work was the end of me.

    I also understand your jealousy because even though Lily may not have to have another surgery, she will never be fully repaired. She will go to the doctors twice a week for the rest of her life to check her levels to make sure her clotting factor is where it needs to be. She will also be monitored for her residual ASD and to watch her CoArc seeing her artificial valve has been put into Aortic valve. Normality in the heart world is different to all. Not to long ago I accept our fate of surgeries every 3-5 years, knowing that was going to be our "new" normal, but then Dr.Cleavland being the wonderful surgeon he is gave us a different option, which we took, and now we are stuck with doctors apt instead. Granted I wouldn't change my decision, but this is our "new" normal.

    You will reach that point here soon with Scarlet, I use to think with Lily we were never going to get there, that is was a light at the end of the tunnel that I wasn't going to see. But we have found it....we may not be out of it yet...but almost there...hang in there, you will reach it soon, and you will look back on all of this and smile, cry, and shudder at all of it. Knowing how much she has over come, how much you have over come, and be proud of both of you for it.

    Sending you Heart Hugs....I know exactly what you mean...


  2. I do understand your feelings of jealously. I can't help to feel sometimes that I'm alone in this journey with my daughter. And there isn't anyone out there that quite understands.

    I am blessed to have a beautiful, happy, "healthy" daughter who has a severe single ventricle heart. Yes, I worry about her everyday... but, what mom doesn't!?

    I don't feel in anyway that I am better than any other mom. I don't mean to sound like a "heart mom traitor" ;) But, I don't consider my daughter a heart baby anymore. She is a thriving, fun-loving, little girl! When I watch her sing and laugh, I don't think about her heart. Her heart defect will not define her and hold her back in this life.

    Everybody in this life has challenges and trials. Everyone is suffering from something. I have friends who are unable to have children; friends that have lost their babies; friends that are battling cancer; friends that have lost close family members... I don't dare complain about my daughter's heart issues around my friends who have lost children, or who are not able to have any babies. You are not alone in your trials. Your trials are different than others. They will only make you stronger.

  3. You know what...give yourself a break! How can you not get angry and rant and rave sometimes, at people, at the world, at God! It is hard and it sucks and there is NOTHING worse in the world than the unknown and I can see it is taking its toll on you. I am so sorry for your feelings. I have been there. I have a son who had transposition of the great arteries and coarc of the aorta and a vsd and asd and he is fully repaired and I am so thankful for that but we spent five long months in the CICU while everyone else came and went. They would have surgeries far more extensive than my son's and then be home in two weeks and I was so angry at them, I couldn't help the way I felt and you can't help it either. I appreciate that you are honest and share those feelings. It will help you to work through them. I pray that your little fighter continues to do well and as far as your crystal ball.....all I ever wanted was a time machine back then! If only we really could have those things! Hang in there girl and don't be so rough on yourself! We all have the right to grief, whether it be a loss of life or a loss of lost dreams or life plans that just won't ever happen. If it makes any difference I might just add that your daughter is so cute, I just want to eat her up!!!! Hold her tight and love her and don't think twice about your posts. We are always here to listen!!! :)

  4. Heart mom

    I know how you feel. Even tho Santi had a VSD and he is fixed by no means is it any easier.. I fear everyday of loseing my sweet boy. I think that ur last post was VERY true you made good strong points.. How I would give anything to have Santi live a "normal" life with no PIC lines no more hospital stays and NO MORE doctors telling me what few time i have with him.. And then I look at him and I tell him "I would do it ALL again" I love you heartmom you have been a huge supportter of mine and I pray for ur princess everyday along with the rest of our CHD family xoxoxox <3