I don’t know where to start to update, so I”m going to start with the latest that’s going on.

 

Still grieving Lily (as I’m sure I always will), but I’m feeling alive again.

 

I had another echocardiogram a couple months ago to check on my murmur. When I went to get my records for social security the hospital included the cardiology report. Someone I know, who is a nurse, read it and explained it…. NOT OFFICIALLY! The understanding of it is that I have two small murmurs, and I have some enlargement of my heart. Now, whether this is lupus or not, and what level of concern this is, I’ll find out on Sept. 11. 

I’m still on prednisone because I ccan’t go below 5mg without neurological symptoms starting up. I’m pushing for a neuro work up when I see my rheumy.

I’m having a ton of foot pain…. the doctor I saw at the walk-in clinic thinks it is from my lupus, attacking the stationary joints in my foot. Xrays have been taken and I’ll find out more on the 11th. 

 

Lupus just seems to be out to get me, even when I’m on 3 meds strictly for putting it into remission 😦

 

The kids are great. Gamer started HS this year, and Duckling is in her last year of elementary school.

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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!

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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.

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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.

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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..

Earlier, on facebook and glitch (a browser MMO I play) I posted the following status.
Universe, you’ve stolen one of our daughters this year, even more of my health, and my husband’s, and caused a lot of pain to our remaining kids… please stop!

Well I went and read about half a book, played said video game (glitch) then decided to climb in bed for awhile and hopefully get some sleep.

Rather than sleeping I started thinking about my beliefs, and the need for balance and all that.

I started thinking about how my grieving, it’s just that, MY grieving. It does help me, but there comes a point where it gets to be all that I am and all that I do, and that’s not healthy. It’s also not healthy to go to the other extreme and stuff all my grief away.

Lily is gone. I believe that when we die we are just gone, that there is nothing ever. That’s one thing that has made losing Lily both easier and harder. My grief, it doesn’t bring her back, it doesn’t make her more dead, it doesn’t make anything different in the thing that matters most to me (with my grief), my daughter and her life.

Grieving can be very healthy, and I will always miss her, and I suspect I’ll always hurt, but that doesn’t mean I have to take my grieving to selfish levels, or that taking it there is healthy by any means.

So I sit here and try to find the balance, and feel thankful that at least for a few minutes, I’m now feeling peace.

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.

I know I’ve posted Lily pics in the past, probably even the ones I’m posting now, but I share them every once in awhile because I like to have her on the front of my blog (I know there are other ways to make that happen, but this is how I do it)….

I just want to show my beautiful daughter again, and remind people SIDS is a real determination of COD, and it does happen… more often than anyone wants to think of.

There was no reason to think Lily would die, let alone at 13 days of age, and there was no reason found, hence the SIDS determination.

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.

Two months since we saw or held her… that picture was taken within a couple days before she died (not sure of the exact date right now)..

We got her death certificate a couple days ago…..

My lupus is now flaring even worse….. the flare started up around the time I got the call that her death certificate was ready, and has steadily gotten worse sense. 😦

We love and miss you Littlest!!! ❤