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| Our last hours with David |
The last few weeks I have found my self growing ever more agitated by my online support community. I realized today that some of it is jealousy. I am jealous of mothers who still have their child alive with them and in their arms. I also realized that some of it is anger. I am angry that a parent who still has their CHD child can complain. Not just general "Oh she is so fussy today!" complaining, but medical complaints. Those who are upset about being in the hospital, going to constant doctors appointments, always giving meds etc. The things that come along with having a child with CHD or any medically fragile condition. I know its just every day complaining.I know its just their frustration.
To me though, being able to do these things again would be a blessing. I'm guilty of complaining when David was here. I didn't realize how much I would miss that mundane routine. I would have loved to have spent the holidays in the hospital with David. I would have been with him. I would love to be giving him meds around the clock, checking SATs, suctioning his trach, running his feeds, going to constant appointments, not sleeping because I cant stop fearing the worst for him, etc. I would love to be caring for my CHD/trach/vent child. Even with all the frustrating demands.
Would I consider these things a blessing if David was still here? No. Id be complaining. I would do it through any frustration, and love him no matter what. How ever any parent who claims to never complain, is in all honesty, being very dishonest. We all get frustrated and complain. Even parents of healthy children. Its being a parent.
I cannot complain about them though. I don't get to care for him any more, and that hurts more than words can describe.I think that is what I'm so angry about lately. The fact that I cant and they can. I don't want to look back at how I took all the monotony for granted. I want to complain. I want to get upset when he gets sick and has to be admitted to the hospital. I want to feel scared when he has a heart appointment or an upcoming surgery. I want to whine because he is not progressing developmentally like he should. Like all parents.
I also want to praise. I want to talk about how well my medically fragile child is doing. I want to brag about his latest achievement at his last therapy session. I want to gloat about his perfect heart check up.
The day we let David go was the most difficult day of my life. I felt like my entire body was in a vice. I ached all over. As that day drug on, and family came to be with us, I knew that at some point I was going to have to tell the doctors when to let my son die. That would be the last decision I would make for him while he was alive. I couldn't be his mom anymore. I'm still his mother, but I was no longer "in control" and that is hard to swallow.
All of these things make me angry, and they make me over react to very simple things. The fact is I'm grieving. Ive never lost someone close to me. Ever before David. How unfair that my first loss would be my first born son?
Currently I am irrational. I am an angry, questioning mother grieving the death of a child.
I want to apologize to any one who I may have hurt over the last few weeks. I do not intend on being mean. I take what people say and put my anger in it. It then turns into something that offends the memory of my child, not that it is the intention, but thats how I perceive it.
I'm not sure how to grieve, but I'm learning. I'm trying to let it just come. Currently anger is my most frequently felt emotion. So, I am taking a social network hiatus of sorts. I will be around, but not like I normally am. I will be restricting how much I share my thoughts and feelings. I will not be as prone to offer support and advise. This is for my own self preservation.
I hope this all makes sense. I felt like this explanation was something I really needed to share.
Lots of love, Heather
