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.