Monday, February 8, 2010

Congenital Heart Defects Awareness Week

This is hard for me to do.

Mostly because I feel as though I do not have enough time to write a post the way I want to. Also, I want to add pictures and all my pictures are all tied up on my home computer. There is never enough time in my little world anymore.

Time is something you lose when you have a child with CHD.

There is a constant battle with time. We spend so much time worrying about doctors appointments, when to be where, who is taking her this time, who will stay with the boys. Is it time for her medicine. Is she suppossed to eat again. How much time will she spend in the hospital this visit. Will she have to go back. How much time do we have with her. Will her heart fail today, tomorrow, next week, next month, next year. Will her eating get better. Will we always have to fight her. Will she get a tube. How long will she have the tube. When can she be a normal baby, toddler, child. Will she ever have a somewhat normal life. Will we?

We live in a constant state of flux, never knowing what will be waiting for us the next day. We are exhausted and frustrated but we push through no matter what because that is what parents do. Keep going, mostly with a smile, so that the children feel safe and secure. That their world remains a constant. Bills are paid on time. Laundry is done. House is clean. There is good, healthy food in the house. Lunches get made. School projects are done. School events are attended. T-ball for Todd. Go-karting for Kyle. C is happy as she can be.

Parents...we do without. Without sleep, without eating, without worry-free nights, without couple time, without intimacy, without showers, without "me" time, without relaxation. It is what it is. Having a baby is difficult, having a baby with CHD is a thousand times more difficult. The constant state of not knowing is horrible.

Live for now. Live in the present. Great advice. You try it all day, everyday, and get back to me and let me know how it worked out for you. We are all human and will have bad days, and sad days, times when we just want to give up and lay in bed all day with the covers over our head because it is easier to just NOT THINK or do anything.

There is no more time.

I thought I was ready to do this. Have this special child, this angel, who would enrich our family. But I was wrong. You are never ready to have a child with CHD.


angie said...

I sure wish we lived closer together so we could help you guys out more than just offering advice from our experiences with Emma, but here we are in NC. It will get better its just a very slow process & you have to take it one day at a time. Emma's cardiologist used to tell me to look at Emma's feeding per day/week instead of each feeding to get a better idea of her progress or you will literally drive yourself crazy with the lack of food they take in. Keep those chins up & try to take naps (I'm not too good at the napping part).

Anonymous said...

Ash, wish we all lived closer so that we could help you. I know it's got to be sooooo hard! I can't even imagine living everyday not knowing if or when her heart will fail. That's grueling!!! Glad to hear in the email update that C likes babyfood! Hopefully that will help with the eating! As you mentioned, she is such a precious little baby. I sooooo enjoyed meeting her in December, even if it was in the hospital. And the blue eyes ... she's got the "true" Conway blue eyes ... they sparkle like GG Daddy's. I am still praying for you all ... God has given you the strength you've needed so far and he will continue to do so. And as hard as it might be, find some time for yourself! It would be the best thing you could do for your family! You've got to find a way to keep your sanity through all of this and if you don't take care of you (physically, emotionally and MENTALLY), you won't be able to take care of anyone else. So, listen to your old Aunt Janny and find a way! If I need to, I can be on a plane back down there to help you do that! I MEAN IT!!!

Love you much,

Aunt J

(Love the Exotic! Thanx so much for sending that to me and your sweet note!)

bluemoxie said...

whenever I get frustrated with everything I think of those mommas who have lost their sweet babies and how they would give anything to be as frustrated as I am, to have that hassle back. It's good to vent too! Get it all out and then hug your sweet children and make every precious moment count. When your friends and family offer to help, let them. It will get easier, it just has to.

you are so right: "You are never ready to have a child with CHD."

big love from me to you <3