I have no idea how consistent I’ll be, just so you all know, but I am back to blogging here!

I’m off the haldol (It caused some scary shit that is mostly cleared up now and wasn’t all in the paperwork they give you, I’ll go into more detail when I can get to my journal), and on Abilify.
Not sure it’s doing anything for me yet, what I’m feeling may just be the result of going off the haldol.

Side effects from the abilify have included nausea/vomiting, sleep problems (which are clearing up now) and restlessness.

If it works for my bipolar I can deal with it!

—————–

On the lupus front – not so good. I’ve got to get a rheumatologist again. Nothing new, just lots of pain from the weather, and a need for more aggressive treatment so it doesn’t get worse. In the same boat with fibro.

—————-

Endo – my ovary is waking back up from it’s 2 to 3 month nap due to the haldol (I didn’t ovulate while on it) and is making me hurt pretty badly.

—————-

Grief – here’s the big one. I’ve acheived peace most days. I’m still sad, I still miss her, I always will, but there is a calmness about it all..

I didn’t expect Halloween to hit me as hard as it has this year….

Yes I was excited to dress Lily up in her first costume and take her trick or treating (health allowing for both of us of course), but….. I didn’t think it was as big a deal as my grief is making it. 😦

This is just ripping my heart out all over again.

October is Infant/Pregnancy Loss Awareness Month..Please take a moment to think of all the little ones lost too soon..It is a pain that never goes away..Noone should ever lose their child! If you know someone who has lost a child/miscarriage, just let them know you are thinking of them..That’s all we need to hear sometimes..You have no idea how much a simple “thinking of you” means ♥ Lilith Faith (12/23/10-1/5/11) and 4 miscarriages.

Some experiences lately have left me with thoughts that I want to share.

For me (and it seems for most parents who’ve lost their children) talking about my child who isn’t with me anymore is just as special as talking about my living children. I love to talk about Lily. I will change the subject for people who seem uncomfortable with it after I mention that she died, but if given the chance to continue the conversation past that point, I will talk as long as I can. Yes her death, and talking about it, is extremely painful, but her life…. she brought so much joy in the 36 weeks I was pregnant (and so many other feelings and thoughts) and so much joy during the 13 days from her birth to her death, that I want to share her.
Right after she died it was hard to remember those times without breaking down and crying because I missed (and still miss) her so much. Time, even though it’s only been a few months, has done an incredible job healing me already, and letting me start to remember those days much more happily, as I realize that life is continuing, and it hurts, but there are also happy moments again.

Religion – A child’s death seems to have a bigger impact on people’s faith (especially the parents and siblings) than any other death….. not that other deaths aren’t hard, but children’s deaths are something that in our culture we work hard to keep children from becoming ill, let alone what we do to keep them from dying…. death of children, and unexpected deaths seem to be the hardest for faith. Saying that God took their child to a better place may be seen as insulting as far as their care of the child, and saying that the child is in a happier place than they were with loving parents may be seen as rude. Saying “God has a purpose” is also extremely hard to swallow… what reason could there be for my baby to be gone?
In our case that last one was even worse because why were we able to carry her nearly to full term, have her come out so healthy and able to go home sooner than some full term babies (we were in the hospital for less than 18 hours total counting labor and everything) only to have her taken? For Johnny and I… we didn’t want to hear anything religious at all… and some parents are like us. Others may find religion even more comforting. Know your audience, and also be aware of the fact that they are probably really struggling with whatever their beliefs are, so even things that they’d normally agree with won’t necessarily get the reactions you expect.

With SIDS parents (and I would guess all Babylost parents), suggestions of what could have been done different, or what you think they did wrong aren’t healthy. I know that Johnny and I (especially me) have gone over our decisions and everything that happened multiple times. And with a SIDS … I suppose diagnosis is the best word… nobody, not the police, not the hospital, not the ME could figure out what happened. There are no answers in that case, but you can be sure that the house and room have been gone through, that the parents have been investigated to one level or another, that there was a full autopsy done, etc. to reach that conclusion. It wasn’t just “oh, I’m tired of doing this, we’ll call it SIDS”…. Johnny and I waited for over 8 weeks to find out why Lily died, only to be given that non-answer, after EVERYTHING was gone over. Pictures were taken of our room, interviews done with us and our house mates, and family members, the police looked through our things, the emergency responders and staff worked hard (for over an hour by the time we told them to stop) to revive her, and when they couldn’t a thorough investigation of her blood, organs, tissue, brain and everything else was completed. And with having donated her heart for the valves, I went through blood work and did even more answering of questions. There weren’t any stones left unturned to try to figure out what happened. And beyond the police, medical staff, etc. looking hard at us and at her, we had our own scrutiny to face, looking at decisions during the pregnancy, and between her birth and death. To suggest we haven’t thought of something, or that the coroner, ME, emergency room staff, sheriff’s office, paramedics, fire fighters, etc. didn’t find something and you know what it was that wasn’t found, that’s just plain insulting, rude and condescending.

An additional thought from Johnny (his other thoughts are already in the post with mine, this is one he just gave me when I asked if he had any)…. Angel Baby is not necessarily comforting. For him it’s not comforting at all, for me…. I don’t believe, even if there is a heaven, that after we die we become angels. We *may* change forms, but that doesn’t mean we are angels. Johnny also says – Just because someone else believes something, that doesn’t mean the person they are talking to believes the same, or finds it comforting in any way. Also (going from the angel thing) – angels aren’t the cute little babies that we’ve made them in our minds….. if you want to know what angels actually look like, provided the Bible is true, there are descriptions in there…. I know I’d rather not picture my baby like that, and I know Johnny doesn’t like that image either……

Spirit babies or something of that sort may be more appropriate and accurate, if there is something after death.
For Johnny and I it’s more comforting to believe there is nothing to come after, that it all just ends. The thought of a heaven where you spend eternity living and praising someone is just as disturbing (if not more so) than hell for us……
Also, this isn’t an open invitation to talk about religion, it’s just us putting words to things that have upset us since Lily died.

“If you know someone who has lost a child, and you’re afraid to mention them because you think you might make them sad by reminding them that they died–you’re not reminding them. They didn’t forget they died. What you’re reminding them of is that you remembered that they lived, and that is a great gift.”
-Elizabeth Edwards