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.

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..

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!!! ❤

“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

This morning the Funeral Home called us. We had ordered our copy of Lily’s death certificate through them, and we were being informed they finally had it, and that we could either pick it up there, or we could have them mail it to us. I told the woman to go ahead and keep it and I’d pick it up. A bit later I realized that if they had the death certificate they must have the cause of death from the coroner. I called her back and asked, and she told me that the answer the coroner came up with is “undetermined” which means that it’s SIDS.
I have so many emotions going on…. relief, grief, frustration, anger, depression and so on.
Over all, now that I’m really having it sink in (even though it’s what we expected) I’m feeling like I’m drowning.

Yet again my dreams turned to dead babies today. This has been happening more frequently than I want to think about since Lily died.
It’s destroying me.
Thankfully my dreams of Lily don’t normally involve her death, they are usually her as she was when she was alive, or as she could have been had she not died….
Yet again my dead baby dream was involving a child I was caring for. I had two babies I was caring for this time.
Now, I have no idea what normal newborns necks are like, beyond that they can’t hold up their heads and you have to support them. I’ve never held a newborn besides Lily, who was holding her head up within a short period of her birth, not perfectly, but you didn’t have to support it too much.
I had both babies in the bedroom and I was getting the bassinet (which looked as it does now… full of baby things like a car seat) ready for the newborn, who I was holding. The other baby (old enough to be rolling over) rolled himself off the bed …. I just remember thinking he’s dead as I tried to reach him before he hit the floor, at which point I woke myself up.

Sometimes we find phrases in books (or movies) that stick with us, and that we think understand, but then something happens in our lives that completely change our perspective of what we thought we understood. Of course this is true of more than just things from books or movies, but right now, and for the last few weeks, I’ve had a phrase from the The Dark Tower series by Stephen King stuck in my head, and making all too much since. “The world has/had moved on” pops in my head every time something comes up to make it obvious not everyone is hurting as deeply as we are, or thinking about as much as some of our family and friends are. For us, we’re still completely lost following Lily’s death, and in huge amounts of pain. However, life goes on (for us and all those around us) and things keep happening, no matter how much I wish the world would all just stop for a bit and everyone would think of Lily and be both so happy she lived, and so sad she died. There have been a lot of things since Lily’s death that have made me think “the world has moved on” one was earlier when I was invited to a baby shower….. I knew this friend was pregnant, and I was and am excited for her and her fiancée and their families, but to have it pushed into my face like that, it really reminded me others are feeling or remembering all of this the way Johny and I are. And there’s nothing wrong with that, all of us had different relationships with Lily, and not many people were able to meet her in person during her short life, or hold her, or anything else. However, it’s still a punch in the gut to be reminded that people are still pregnant or having babies, and excited, and their babies (whether in utero or out now) are still with them. I do go out and do errands and things, but over all (other than online) I’m avoiding people who aren’t right around us (our immediate families and our housemates), especially those who are pregnant or have small children, because it feels like a physical blow every time I see them. Not so much my friends who are childless, but those who were pregnant at the same time as me. And I still adore my friends, and am extremely happy for them and their babies, but it is just a huge reminder that I’m no longer one of them. I mean I am a mommy, several times over – twice to two lovely, living children who are with us during the summer, once to a daughter I gave birth to, and several times over to miscarried little ones. I am (and have been part of) a community everyone knows about (or should) but no one ever wants to be a part of (at least I hope)…. baby loss mamas. I’m on the outside of where I want to be again, desperately wanting people to recognize that I AM a mom, and feeling like everyone just either pities me, or doesn’t count me as one. I’m not saying that is the case, and I have several friends who don’t treat me that way, but it still feels like that’s how everyone feels and thinks of me….
I realize bringing up my grief and the losses before her doesn’t help this, but it helps me remember all I’ve come through, and all Johnny and I have come through together, and helps me remember that although it hurts now, and some part of me always will, I and we can make it through this and that this isn’t the end of the world.
It’s all so complicated, I wish the world would just stop and recognize this pain, but at the same time I wish that people would not feel sorry for us and see us as regular people who have other things happening too, and I just don’t know what to think or feel, or how to move towards the future.
I’m just so confused and hurt, by myself and by others.
And having people say things about moving on, or having things come up that remind me other people around us are having kids, and that they are where we were just a few months ago (albeit without the complications we had) just…is so hard.
I don’t want people to treat me differently than others…. I want people to keep sharing their lives with me and all, but I hope they’ll also understand if there are times I just can’t deal with it all.

We’ve been having some bad days between us…. Johnny’s had an especially bad one since we woke up Monday morning (now technically yesterday for us)….. I’ve been having worse days again since Saturday…. Saturday was the day they estimated for Lily being born based on my last period. Also, I went out to the front room with Johnny and we both played video games, then watched movies as Johnny put together some shelves and drawers for our things, since we don’t have as much room to store everything now that we are no longer on our own (and haven’t been for about two months)…. I started rocking in the chair in the front room (something I just automatically do when I’m in a chair I can rock in…. I have as long as I can remember) and it made me think of Lily and our nursing times, and how I’d rock her when she was upset and Johnny was trying to sleep, and of our times falling asleep together in the rocking recliner in our room and it all just started hurting in a way I could cry again, and I have cried every day since that point now… which is nice, as I was unable to cry for awhile, but at the same time, I wish I could stop crying and be happy at least a little again…. even if it wouldn’t last long.
Johnny and I are doing what we always do when one or both of us are hurting, pulling together, holding each other, supporting each other.
I commented to him earlier that at least we know that we can survive together through the hard times, and that we always have each other….. this is the hardest thing we’ve had happen while we’ve been together, but we’ve had a lot happen (deaths in the family, family members being ill and we couldn’t get to them for various reasons, my own health issues, his arthritis getting worse, job loss, lack of income, having to give up the home we had together for over 2 years, having to move out of state at the start of our relationship, and so on)… and we always stick together…. and so far there’s no change there… it’s how we deal with things.
Today was spent cuddling, touching, talking about how thankful we are for each other, talking about (and crying for) Lily, and just spending time together. It was still a hard day (especially for my Johnny), but we always come out of them stronger, even if we are hurting more for awhile because they are hard days, we know we can rely on each other, and how much we love each other.