Saturday, July 3, 2010

It always hits me at the weirdest times.

I feel like I'm doing pretty well with all of this heart stuff. I've been stressed over the past week, but that wasn't necessarily directly related to the diagnosis, it was more just about trying to get my ducks in a row with the rest of the madness that is going on in my life. It's all the same stuff I would be stressing about if I were just going to have a baby without the heart defect.

However, I have my few random moments that hit me, and I have to tell myself to stop it! Today we were at the waterpark. It was a beautiful day, warm and sunny, and we were surrounded by tons of people. Shane and his brother had the kids at a picnic table right behind me, and I was sitting in one of the deck chairs just watching as people went by. I LOVE watching people- trying to figure them out, understand their lives, listening to their conversations, and trying to figure out their relationships. (I know, kinda stalkerish right?!) Anyways, a little boy about 9 years old walked by me with his friend. They were just normal looking (slightly awkward) boys. Nothing striking about them, nothing that resembled either one of my kids. No weird scars, tatoos, or haircuts. Just a kid, enjoying the beautiful weather at the waterpark with his friend.

That's when it hit me. The thoughts started flooding my mind and my heart. Will Joshua make it to be this old? How many surgeries will he have to go through before this age? How much pain will he have experienced in this short amount of time? Will he be in heart failure? Will he be on the transplant list? Will he be healthy and able to just be a kid? Will he be self conscious about his scars? Will his friends understand and love him despite his physcial differences? Can I truly teach him to be thankful for each day? Will I be able to help him understand that God created him perfectly and whole even if it's not to our standards?

Instinctively and protectively my hand went over my belly and my chin started quivering. My eyes started welling up, and I had to will myself to snap out of it.

The truth of the matter is, is that I feel guilty. I feel guilty that my baby doesn't know what's coming- that I can't protect him from what his life may or may not hold. I feel guilty that there is nothing I can do for him but to love him, fight for his little life, and give him up to the hands of Jesus. I feel guilty that my body didn't help him to form his little heart like it should have. I feel guilty that his older brother and sister will live normal lives not worrying about their hearts, and he will always have to deal with his. I feel guilty that the first few days and months of his life will be nothing but poking, prodding, cutting, monitoring, and pain- not snuggling, nursing, pure joy, and love.

I finally pulled it together and was able to come up with some stupid excuse as to why my face was red and splotchy when my husband asked me what was wrong. I hate for those moments to ruin a perfectly good day.

To think, all that from watching a little boy and his friend walk across the patio at the waterpark. Sometimes I wonder if I'm going nuts!

3 comments:

Mommy K said...

Found some other friends you might want to read about. =) Praying for you!!

http://babysamson.com/blog/

http://www.foltzfamily.com/page/Hypoplastic-Left-Heart-Syndrome-%28HLHS%29.aspx

http://ethanscottmiles.blogspot.com/

http://childrenshospitalblog.org/one-patients-story-my-babys-congenital-heart-defect/

http://ourwyattfamily.wordpress.com/tag/hlhs/

http://gavinparker.blogspot.com/

kirsten michelle said...

Oh, I relate to so much of this. I've had all these thoughts too. I could just as easily have written this:

I feel guilty that my baby doesn't know what's coming- that I can't protect him from what his life may or may not hold. I feel guilty that there is nothing I can do for him but to love him, fight for his little life, and give him up to the hands of Jesus. I feel guilty that my body didn't help him to form his little heart like it should have. I feel guilty that his older brother and sister will live normal lives not worrying about their hearts, and he will always have to deal with his. I feel guilty that the first few days and months of his life will be nothing but poking, prodding, cutting, monitoring, and pain- not snuggling, nursing, pure joy, and love.

This baby is our first, and I keep wondering if all our planning is for nothing. And then I feel so guilty for feeling that way. I hope we have as much cause to hope as so many people thing we do. I wish I could give him a whole heart, and at times I wonder if my body betrayed him in not giving him the heart he needs. I hate that there is only so much I can do to fight for him, to love him for however long he's with us. I have to cherish every kick and roll and nudge and punch -- I have to cherish this life.

I don't think you're going nuts -- it seems like all of these are normal emotions to be experiencing for those of us who know our babies are going to have a much rougher start to life than so many others.

I'm so glad your little Joshua is so loved already. I know Ewan is loved like crazy too. ;o)

Hoping and praying for the best with you, asking Jesus to help us face everything we must.

Stefenie said...

You are not going nuts. If you have read my blog lately you will realize that. It is 100% NORMAL to feel that way and to think about those things. You are a mom that wants to protect her child and wants a full life for her child as well. It is hard because this is the ONE thing that we have absolutely no control over. We can't see what lies ahead nor can wee anticipate what the outcome will be. We just have to keep relying on our faith and believing that there is always hope.

Praying for you!!

 
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