Wednesday, May 18, 2011

What is the hardest part about being a heart parent? (Part 2)

Even 9.5yrs into this and watching my girl live like the rest of her friends it is sitting here waiting for the other shoe to drop, without not really waiting. Make sense?

There are 2 things that are really hard for me. First one is not knowing his future, knowing that the oldest HLHSer is really not all that old, knowing that we could lose him at anytime. Second is knowing there is nothing I can do to take his pain away or to make him better, I can only be there to comfort him.

The constant fear that Jace might die. I have horrific nightmares on a regular basis. It's constant anxiety for me bc of it. He is my everything and my purpose for living. The thought of losing him is gut wrenching

Not knowing what to expect. And not being able to take her place whenever she is in pain or has to go thru something rough
Besides the obvious of not knowing what will happen and how long he will be with me. The hardest part is watching him go through the pain, stress, and anxiety and not being able to make it stop for him.

The unknown!

Watching your child grow up and not knowing how long you have them.

Worrying if anything will happen when he's at school and I not make it in time, his impending surgeries.. going thru the wait and signing papers with complications that may or may not happen..I hate the signing part..I do want to thank God that he's almost 11 on the 25th!!

knowing when it's time to say goodbye and trying to live after saying goodbye

Fear of the future, the unknown.

all of the above...

For me it seems to be harder when he is doing well because you start taking it for granted that he is doing well. This really hit me when he was fine at 9 am on April 20th and by 3 pm he had had 3 strokes. When the look sick or act sick its ...easy to make the most you have with them cause you know you could lose them anytime. But when they are doing good its easy to forget they are sick and you think well I at least have a while left losing him isn't an immediate threat when it is always an immediate threat

After dealing with this for almost 22 never gets easier...every hospitalization, every illness, everything just weighs on you. Just enjoy every moment they're here.

Wondering what else can happen...the "WHAT IF" or "WHAT NEXT"

Saying goodbye.

Knowing that you can't do anything to help.

Not being able to take it for them.....watching them in pain.....seeing a cry but not hearing anything.....watching a monitor fearing the next minute....not having any control over the situation......It is a long hard road and when it is bad it is awful but I will walk with him every step of the way because the good helps to ease the fear of those bad days!!!!

The unknown but knowing the possiblilities...

Not knowing what the futures holds...and knowing that even though my Olivia looks perfectly fine on the outside...but she's working ten times harder than all of us healthly folks on the inside.

And watching my husband be so afraid to get close or even feel the baby move cause he didn't want it to be too hard if our little guy didn't make it.

There are a lot for me...Not knowing what the future holds for him, worrying every night at bedtime or everyday at nap time...Watching him go through so much with the iv's, labs, x-rays, etc,etc,etc...It's extremely hard right now for me knowing he just had surgery 2 months ago & he isn't progressing as well as they hoped right now...

Thinking I might lose another baby, and being helpless to help him even though I would have given my life for him to never feel an ounce of pain.

The uncertainess... The fear of him not having a tomorrow. Having to smile and be happy sometimes when my heart is breaking. There are many happy moments too, however with an instant everything changes!

In a nutshell, being a heart parent. Never expected to be one but if wishes were horses, it'd be me with the uncertain future & trials, not my wholly innocent baby. Just one of those burdens you can't truly care for those you love, proof you can't be a supermom & protect them from everything. It is terribly humbling. And I don't do humble well. ;)

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