The Roller Coaster

When you hear about someone's experience with a sick infant or child, your heart breaks and all you think is, "I don't know what I would do."  I remember when I heard the doctor say, "Your baby has something called Hypoplastic Left Heart Syndrome."  I thought, "What the hell is that?"  I was devastated because I understood what they were explaining about the physiology and anatomy of her heart, but I had no idea what it meant for the long term.  They began to tell me that the left side of her heart would be severely underdeveloped and that it would take 3 major open heart surgeries to repair it.  I sank, everywhere.  I was talking through the tears.  Even though I was trying to put focus toward finding answers, my brain knew that I was at the beginning of the world's longest emotional roller coaster.  I wanted to take on whatever it was that was supposed to happen to her and literally give her my heart.

There is really no way to prepare yourself for this type of thing.  You just have to know that it's going to be what it will be, no matter what you do.  Ground yourself with some positive people and hang on.  Looking back, I don't know how I got through it, but I did. Some days you feel like you can handle everything, and as soon as that thought gets out, your crying again.  I remember being a total mess for the first 48 hours after my initial sonogram.  I couldn't open my mouth without crying.  But once I accepted that this was going to happen to my baby, I just tried to figure out what everything meant; medically for the baby, for the family, for our future.  If you try to anticipate and plan for the unexpected, you'll run yourself into the ground. Just be. Live for that day. Live for the health of your baby, one day at a time. There are going to be ups and downs.  Soak up the good days and just swear at the bad.  Some days it takes the wind out of your sails and there isn't any energy to get a glass of water.  But you plow through it.  And before you know it, a year will go by and you'll feel like you blinked.  And here I am, with Rosemary, and we're all okay.

In retrospect, here's what you can try to do:

1.  Educate yourself with as much information from your doctor and reputable hospital's websites.  

2.  Take each day, moment by moment, and try to comfort your baby and yourself.

3.  Know that life always works itself out one way or another, look for the good.  

4.  Find support.  There are non-profit organizations like Little Hearts that connect you with other parents of these babies.

5.  Have faith and constant positivity.

6.  Find peace somewhere.

7.  Try not to focus on negative outcomes.  Every baby has its own destiny.  Believe in the positivity of yours.  That too has an impact on your baby.  Instead of planning on disaster, plan on what to get her for graduation.  

8.  REST!  My God, REST!  Having a baby is hard enough.  Just sit down, and let someone take care of you.  Your baby is going to need you, so go easy on yourself.  Rest.

After about 2 months, I stopped.  I stopped anticipating the day she was going to arrive because I didn't want to think about how difficult it was going to be to watch them wisk her away without getting to hold her.  I stopped worrying about what was going to happen in surgery because we hadn't even had her yet.  I stopped doing everything other than what it took to get through each day.  I have 2 other children, ages 9 and 2 and I just couldn't detach myself mentally from what they needed from their Mom and who they needed me to be.  You just can't expect yourself to hold the fort down AND deal with all of the emotional baggage that comes along with anticipating the arrival of a cardiac baby.  It's absolutely ludicrous.

 

It wasn't easy trying to be exactly what everyone needed 24/7, my fiance encouraged me to stop having such stupendous expectations of myself.  You really need to lean on the people in your life who are willing to help you out.  It does make a difference in your energy levels that are truly necessary here.  It's going to be a crazy ride at first, so take care of yourself.  It will all even out, you will be okay.  Trust in the good and hope for a beautiful baby that will look up to you someday and say, "Thanks for going on this ride with me."