I guess I should write about Christmas.

You know, people who have been there, done that, will tell you things. Like people telling me that the holidays would be hard. And since we have a heads up, we think we will be prepared. We are never prepared.

I used to sometimes wonder how I would react if Marissa died before me. I knew it would be awful, horrible, difficult to deal with. It is actually horrendous, horrific, and unspeakable. Those are the closest words I can think of. There truly are no words.

So I was expecting a somewhat difficult Christmas. What I got was utter chaos, with me yelling much more than I wanted to or probably should have; children screaming and hitting and fighting and thinking of nothing more than getting to the next present. My MIL even threw a small fit via email when we failed to call her within the time window she expected. So I was very angry about that~ angry that I am supposed to fluff up people's egos when I am trying to get through my first Christmas without my daughter.

Two days before Christmas (I think, or was it three?) the van was sideswiped. Then dh called from a pay phone at 12:30am to tell me the car broke down as he was getting off the freeway and he forgot his cell phone. He told me not to go get him because all the kids would have to get up, so he would walk. An hour later he called again and asked me to call him a cab because he was getting blisters on his feet. So the next day was spent using money that doesn't exist for us to get the stupid car off the road before it got impounded. This is why the MIL phone call didn't happen "on time". I replied very sweetly to her email~ we love you a lot, we aren't blowing you off, etc. Puke. WHY would I have to do that? This makes me very angry. Yes, I do love her, if you are wondering, but give me a freaking break.

Not everything was bad. There were nice and wonderful things. I guess I need to wallow in my anger for now. Cause I am pissed. My daughter is not supposed to be dead. You are not supposed to die when you are eight years old. Period.

What happened?

This morning, shortly before 9:00, I was standing at the kitchen sink, doing dishes. I had to play catch up because I (once again) did not get the previous night's dinner dishes done. I was looking out the window and saw my neighbor across the street backing out in her new SUV. I then saw her drive back and forth past my house a few times. I started to wonder if there was something wrong with my house, or perhaps a body in the yard. She parked and came to the door.

I am of course still in my pajamas, as I always am at 9:00. Give me a break, I have five little children running around, the oldest of whom is seven. I normally get dressed around noon and yes, I'm OK with that.

The neighbor begins with small talk about how we never see each other and isn't it funny that it is raining in December and by the way, I sideswiped your van. She tells me the damage is minimal~ "A small dent and a bit of paint". She wants to write me a check instead of having me go through her insurance. I told her I would talk to dh and see what he had to say about it. I felt bad because she was very apologetic and obviously truly felt awful. And I like her, generally, even though I could do without the parties she has when her parents are out of state.

Neighbor left to run errands and I called dh. He had his phone off or something, so it took me a couple hours to get through. While I was waiting on him I went and looked at the van. Minimal damage, my ass. The whole panel in front of the gas tank was pushed in and a healthy amount of white paint from her SUV was left behind.

When dh called, he was extremely irritated about the whole thing, but I think felt better about the fact that Neighbor felt so bad. At any rate, he wanted me to call the police, so I did. I also called Neighbor so she would be aware that they were coming and wouldn't be taken by surprise.

The police showed up about a half an hour later. Two young guys. Much younger than me. When did that happen? How did all the cops get younger than me all the sudden? They told me in order to write an accident report, the damage has to be over $1,000. I stood there with them looking at the damage and remarked that yup, I believe that would be over $1,000. They then went to Neighbor's house and spoke to her at length. When they came back to my house, I was told that they were not going to write an accident report nor issue a citation because she was so terribly sorry. Gee, are you sure it's not because she's a 21 year old with long blond hair and big boobs? I'm suddenly feeling like the frumpy housewife. I wanted to tell them ~My boobs are bigger than hers, and I don't always look like this (probably I do), and I used to model (looong time ago), and.........oh crap, never mind. I might as well resign myself to being the frumpy housewife.

I remember being 21 and able to talk myself out of stuff I REALLY should have gotten in big huge trouble for. Now I know how it feels to be on the other end. Girl bats eyelashes and frumpy housewife has to fight with insurance. Oh well. I didn't really want to see her get in trouble, it's just that there's a huge dent in my van.

The journey

Grief is described as a journey. And no matter how much support you have, it is a journey you must make alone. No one else can feel your pain, or think your thoughts, or catch your breath for you.

I discovered yet another level to this grieving journey I am on. The feeling of betrayal. When those you love and care for so much decide that the way you are dealing with grief is not the correct way to do it. When they suddenly become uncomfortable with hearing your thoughts and feelings and even with being in your presence. When this happened to me, I felt as though my skin had been ripped away. I could feel the pain coursing through my bloodstream. Sounds odd, but it was a true, sharp, physical sensation. I wanted to escape it but I couldn't. It has moderated now, and left an ache in it's wake. I can deal with the ache. The urgent need to get away from it is gone. I wondered for a while if that is how people who are suicidal feel~ as if they must escape. I am not suicidal because I know that I am here for a reason~ one that is beyond my understanding. I value beyond measure anyone who has been willing to hear the depths of my pain. When I have to choke back mentioning my daughter I feel sick. My company today was not comfortable with the mention of Marissa's name. So I didn't say it. And I felt like I would throw up. I need to stop that. I want my living children to remember her and talk about her all the time, and I know they will take their cues from me.

I am not the same person I was on June 10, 2006. I will never be that person again. In a split second while holding my dying daughter I understood what truly matters in life. What most of us merely pay lip service to, suddenly made sense on the most basic level. I still feel that, but the question is, can I stay true to myself? It's proving to be harder than I thought it would be.

I don't write these things to make people feel uncomfortable or guilty or anything else. I write for myself and for those who unfortunately find themselves on a similar path. When I went looking for information such as this, I found very little. Grief is already very isolating. I want to make it OK to dive into the depths of emotion so that people can heal rather than suppress or ignore something so fundamentally important. Maybe I'll write a book (In my free time! Haha)

I have been doing some research into grieving customs and it seems that a year is generally the bare minimum for intense grief. I hereby claim my year. After that perhaps I will consider the claims that I need to start to feel better. How can I ever feel better if I only suppress the indescribable pain and don't feel it?

Is it Christmas yet?

In this year that I have worried about Christmas for my children, my house is overflowing with presents for them. While I was busy feeling resentful of the family we adopted and took donations for so "they" could have a good Christmas, other wonderful people were busy making sure my children would have one, too. We have received many many boxes of goodies from MDC mamas. Then a RL friend handed me an armful of presents for my children out of the blue. As I was bringing them in from the van, my neighbor stopped to talk to me and let me know she had presents for each one of my children. One of my dh's coworkers called yesterday to ask when he could bring gifts for us.

So I am reminded of Karma. What goes around comes around, you reap what you sow; and all that. I am quite honestly surprised, considering the negative attitude I had about our adopted Christmas family. I do seem to be over that now, thank goodness. We managed to find brand new bikes for each of their children, and did very well getting almost everything they needed and asked for. This Tuesday we will be delivering the presents and I am so excited to do that. We will need to make two trips because with all the presents and food, it will not fit into our full-size van!

It has been a struggle to do for others in the midst of intense grief. But it has been healing as well. I think as our angel Marissa watches over us, she approves.

Memories

We ended up with a Christmas tree. I did not want one. I was frankly hoping that if I ignored Christmas it would go away. We have the tree because dh wanted one so badly. Putting it up wasn't too bad. It's pre-lit, so that helps. And we don't have to deal with that horrible tinsel we had at my house when I was a child. My parents would coach us to put it on one strand at a time. Ugh! Let's see how slow we can make time go. The cat loved to eat it, which invariably caused her to puke everywhere, which was not pleasant either.

My mother in law brought ornaments she made in honor of each of my children yesterday. There were five of them. I said "There are only five". She said "Yes". That was the end of the conversation. I was thinking "What about my oldest daughter? How is it possible that you forgot to include her?". I didn't say any of that because my MIL is easily offended and it is often easier to not get into things like that.

I do understand that people no longer know what to do or say around me. I try to help them by bringing up Marissa occasionally. This is the hint to go ahead and talk about her. Not many people get the idea, but some do. Mostly those who have experienced the death of someone close to them.

So in honor of Christmas and my daughter, here is a little bit about her life:

Marissa did not care about the vast majority of presents. What she cared about was the wrapping paper. She waited patiently for whoever was opening their present to finish so she could grab for the paper. We could have kept her happy just wrapping a box full of paper for her. Or that crinkly shiny paper; that was even better.

Marissa had a very few favorite toys. Her favorite of all now sits on the shelf beside her ashes. It is a simple plastic toy which requires you to push the button on the top of it in order to make the colorful balls go around. She LOVED that toy. She could make it go really fast by banging on it repeatedly.

Marissa loved to pull things onto the floor. Her favorite crashing objects were plates with food on them and glasses full of liquid. We learned that she needed to sit a bit farther away from the table than the rest of us. We also learned that she had an extremely long reach!

Marissa did not like too much sun. She wrinkled up her cute little nose. It must have hurt her eyes. She also didn't like the cold, which comes as no surprise considering it must be easy to get cold when you are non-mobile.

Marissa was my angel in life and now in death. There was always something wondrous about those brilliant blue eyes she had. She knew things the rest of us can only guess. My baby. I miss her so much.

Done with the Flea

This will be only my third post regarding this ridiculous debate over my daughter. I do not know how one becomes a "mega blogstar", but I have neither the desire nor the time to attempt to become one or to argue with one. I have 5 small children still living and who need my care and attention.

Last I read on his blog, Flea claims to have read his post nearly a dozen times. His errors have been brought to his attention. The things he purports to be in Marissa's story are simply not there. He refuses to or is incapable of understanding the printed word when it is not in line with his own thought process. Arguing with irrational people is always pointless. He appears to have quite a following of young medical students and residents, so I will leave them all to their fun and brainwashing after this.

To deny that adverse reactions exist is to deny evidence which has been proven by the medical community itself. The Vaccine Injury Compensation Program exists for a reason. The CDC itself discusses the potential for seizures following vaccination. Pulling up some random PubMed article proves nothing to anyone. The fact is that vaccines can and do cause serious, potentially life threatening complications. For everyone's information, no where in recorded history does the slightest inclination toward seizures exist on either side of Marissa's family.

Obviously not every child reacts to the vaccines as my daughter did. So there is some predisposition there. But it was not known until she received the shots. There is no way of knowing what will happen to an individual child until then. In my family, we have decided that our children stand a better chance against any one of the vaccine preventable diseases than the vaccines. I am not willing to chance this happening to another one of my children. How dare anyone intimate that my daughter was an acceptable loss. She was not. I'm fairly certain no one who loves their children would hold them up for sacrifice for some perceived betterment of society.

Marissa's neurologist is considered one of the top pediatric neuros in the world. He is also a very understanding and compassionate human being. His mind has opened a bit after so many years of dealing with worst-case senerios. He never found a diagnosis for Marissa in the year and years spent looking. He has stated that vaccines can and do cause reactions such as we saw in Marissa. Of course, he believes in the vaccines despite this, because he is still a doctor after all.

Every person MUST educate themselves in all areas affecting their health and their child's health. No, doctors don't like it when you walk into their office with the attitude that you might actually know something about your own health, your own body, your own child. So what? Your doctor does not have to live with the results of what happens in his or her office. So they bad mouth you to friends and colleagues~ oh well! We need to all get over that, and fast. These are serious decisions with serious consequences~ from whether you need heart medication to whether or not you decide to vaccinate your children. We forget time and again that our money is paying their salary. We are their employers. Ignore the doctors with the god-complexes. Refuse to pay their salaries. Use that money toward a decent doctor or other health care provider.

I may come back later and post some relevant links. Right now I must go so I can take my children to a friend's birthday party. Hey~ look at that~ I guess my children aren't alone and isolated despite my crazy homeschooling ways.

The downside to blogging

When I decided I would do this, one of my concerns was that certain people would leave comments like this:

<<
Non crazy Mother has left a new comment on your post "What happened to My Marissa":

You are very misguided. I think you are abusing your children by not taking care of them. And if you think that vaccines made your daughter sick then you must be very sick yourself. It sounds like she had a brain tumor and you were too stupid to go to the doctor and see if you could help her. Shame on you for hurting your child. You are to blame. Shame, shame, shame. I suppose you breastfed all your kids until they were 5 years old. Freak! >>


Fortunately, it's the only one I've gotten so far. I chose not to publish it in comments since it's not really a "comment" persey, it's really just a very very sad person. Or maybe it's a 13 year old with nothing to do. That's what happens on the internet. It's like writing a book. Except when you write a book people take it into their homes and they talk about it and maybe discuss it with their friends. Here, we get to read the reviews instantly, and people can say whatever they want because we will never know for certain who they are.

Another hazard would be someone getting a hold of your blog and holding it up for ridicule and misrepresentation. That happened to me yesterday. drfleablog.blogspot.com/
(my mac doesn't seem to respond to the ctl cues given by blogger, if anyone knows how to make those work, please let me know!)

On the upside, I am reminded of why I avoid doctors once again. If you will notice, he did not even read Marissa's story correctly. He had a preconceived idea of what happened and then just skimmed the story. He claims that Marissa had febrile seizures and that is why her initial postical phase was so mild. Marissa never had febrile seizures, and no where in her story does it say that. He also claims she died during status epilepticus. Although she suffered through that time and again throughout her life, she in fact was not seizing when she died. So I am reminded that when I am speaking to a doctor, in most every case, THEY DO NOT EVEN HEAR ME. Even when I corrected the information in his comments, he ignored me. This is all aside from the fact that he put a bottle of some sort of cleaner at the top to represent the name of my blog~ Lavender Essence, which was chosen because when Marissa died, her dress was lavender, as was the beautiful sunset.

Good doctors are few and far between. I know a few myself, but we had to search long and hard to find them. My sister is one. Marissa's neurologist is another.

Would you want this guy to care for your children? I would have to wonder if my child was getting the appropriate treatment based on the fact that he could not even correctly read my blog. Maybe he's just trying to get me to shut up? Who knows.

Oh, and "non crazy mother", please refer back to my post in order to see the involvement of the medical profession. Also, no, I do not nurse my children until they are 5, only until they are 3 or 4;o)

What happened to My Marissa

This is what happened, for those who are wondering. It is posted at MDC. Some people have asked to spread it around the internet, which is a very good thing, so I thought it should be on my blog as well.

Marissa's story
Marissa was my first baby. She was the only one of my six who was born in the hospital. At the time, I was a very mainstream person who was just starting to realize that there were other options out there. Unfortunately, I didn't figure it out fast enough.

She was perfectly healthy despite the eye ointment which I was told I could not refuse and the Hep B shot, which they had just started giving babies at birth. I questioned a nurse about the shot. She was flabbergasted that I would even think to question it. I can't remember what she said, but I immediately shut up and signed the paperwork.

We took Marissa home and for 3 1/2 months she was perfectly, wonderfully normal. The pediatrician proclaimed her to be very healthy. She slept well at night, nursed well, interacted, babbled, etc. Normal baby. At 3 1/2 months she got her first DTP. That night she got a fever, for which I called the doctor and was told that I should give her alternating doses of Tylenol and Motrin every two hours to keep the fever down. I do not remember how high it was off the top of my head. The fever was gone by the next night and I remember thinking she seemed a little different, a little off. The day after that I was lying next to her in bed and trying to fall asleep when she had a seizure. I had never seen a seizure before and was very confused. I picked up the phone and dialed 911, but as soon as the operator answered, Marissa smiled and cooed at me, so I said never mind and called the ped instead. I brought her in right away and was told she did not have a seizure because she would not have recovered like that. So I took her home where she had another seizure. Then several more as the days went on. We finally got an EEG after several visits to the hospital. It was completely normal. Lots of bloodwork was done~ all normal. Every single test was normal. A CT scan was normal; however, this test was done a month after her initial injury; I think it may have shown the injury had it been done right away.

I asked the doctors if there was any way the shots were causing my daughter's seizures and I was told (quote) "No. That NEVER happens." So like a complete idiot, I continued to follow the recommended vax schedule, with my daughter on Phenobarbital to control the seizures. Her development slowed slightly. I believe this was due to the medicine. She was still within the range of normal. The doctors gave her DTaP to finish up that particular vax series. Obviously they must not have been quite so sure there was no problem with the vaccines, or we would have stayed with the DTP. But that is in hindsight. I had nothing but a feeling of foreboding at the time with absolutely no information to back it up.

At almost 13 months old, Marissa had some words. She said daddy, mama, ba-ba-ba (wanting to nurse), fishy, I hot, among others things. She stood while hanging on to the couch and was starting to cruise along it. She got the MMR at this time. 13 days later she was in my arms seizing uncontrollably. She was taken by ambulance to the ER many times in the next couple weeks. All they would do was up her meds and observe her overnight. At this point she was no longer able to say her words or even sit up, but this was blamed on the medication being pushed higher and higher. We lived in a small town at the time and no one was willing to refer her anywhere else until on our last trip to the ER at that hospital, with my daughter in status (seizures that won't stop) once again, I told the doctor I refused to leave until they sent us somewhere where they knew what they were doing. He refused so I called my father, who drove an hour and a half to explain in his very persuasive manner why they were in fact going to send us somewhere else. We were sent to DeVos Children's, where they immediately admitted her.

Marissa then fell into a pattern of status seizures every fourth day. She had an MRI, artery pokes, more EEGs, etc. Everything said normal. Eventually they gave up and sent us to Detroit Children's. The neuro we found there said to me, when I questioned him about the vaccines, that it was certainly possible. Of course, that was followed by "But vaccines are important". More tests in Detroit. A PET scan that showed she was in fact suffering from subclinical seizures ALL the time. More blood work, a spinal tap; nothing showed anything at all. Except for the film of the MRI we brought with us from Grand Rapids, which our neuro looked at and thought he saw a possible area of injury, but he wasn't sure.

This time was pure hell for my baby. She was a "hard poke" and I was a young mom who didn't know any better. There were several times she was stuck with needles repeatedly for HOURS because they said they simply had to get a line. She screamed and cried for me and all I could do was hold her hand. I started to find my voice in Detroit, though, and before long doctors and nurses were actually listening to me, or pretending to really well.

We finally left with Marissa on three different meds and still having seizures. The rest of her life was spent living with them. I hate them. HATE them. It was like some unseen force grabbed her and contorted her face and body. Just awful. And there were the garden variety partials, too, along with myoclonic seizures added in the mix. She had good periods and bad ones. I had good luck with the ketogenic diet for a while, but then it stopped working. We took her off all meds when her liver started shutting down and the docs were all freaking out (they opposed me stopping the meds, but it worked). At 3 years old she refused to take water orally, so we ended up putting in a g-tube. A year later she refused all oral food. For the previous years, I fed her pureed food by the spoonful, after the g-tube I just pureed it finer and pushed it through her tube.

I had the most success with homeopathy. She had many months without seizures because of it. She would make developmental strides during these periods and then lose them again when the seizures started. They would normally last 1 to 4 months. Every day, all day, and all night much of the time~ not starting out that bad, but working up to that eventually.

Marissa threw up a lot. That was something else that started after the first DPT. It was always cyclical. I never worried about it except when she became dehydrated, at which point we would head to the hospital to get rehydrated. She also had very low iron, but it didn't show up on regular hemoglobin tests, only on a full panel. My belief is that the aluminum in the shots was causing chronic anemia that was extremely difficult to treat. She needed a blood transfusion the year before due to this and I wanted to avoid that. So for those two reasons we were in the hospital when she died. We had no clue it was going to happen. She had been having seizures and throwing up, but she was no where near as sick as she had been many times before. I left at 3am because I was very pregnant and had my 17 month old with me. My dh stayed. He called me at 10am, just as his mother was arriving to watch the kids so I could be with Marissa in the hospital and told me she coded and get there quickly.

I won't belabor that day, because it's not really relevant here. Basically, her brain stem swelled. It happened in her sleep. I missed it. She was dead when I arrived, although her body was being kept alive, which I am grateful for because I got to hold her and love her and say goodbye.

So that's what happened to my Marissa. I MISS her so much. I believe if I would have stopped the shots after those first seizures, or even before getting the MMR she would be here and she would be basically healthy and happy. Instead she had a life full of struggle and heartache and she died at 8 1/2 years old. That should never, never happen. I hope her story can help someone who needs to hear it.

Thanks for reading.

Grief counseling

I went to a counseling appointment today. It was interesting. I chose this particular counselor because I have different beliefs than most people. I'm not Christian, I'm not Pagan, I'm not even Buddhist (although I would align myself most closely with this particular tradition). I sort of have my own thing going on. It's just me believing what I know to be true. I no longer label myself anything and in a sense, that is freeing. In another sense it is confining, because it confuses people and they don't know what box to put me in.

So because of these different beliefs, I'm very wary of discussing my grief with anyone calling themselves a professional. I have visions of me baring my soul while the counselor quietly dials the nearest mental hospital so they can come and lock me up. This woman was highly recommended by a friend who claims that she has beliefs similar to mine.

I went to see her today. She's definitely a counselor. She says what she's supposed to say and "hmmms" and "uh-huhs" in all the right places. She felt pretty phony. She felt just like the counselors I saw a decade or so ago. After those experiences, I had decided that counseling was garbage. I feel the need to be way too guarded~ not only with my spiritual beliefs, but with my mothering decisions. How would she feel about co-sleeping? How would she feel if she knew I have unassisted births? The way I am feeling now, after seeing her, she will not get to know these things, and that can only be detrimental. How can she help me heal if I can't speak the truth?

I commited to bringing my 3 year old next week to do some play therapy. She struggles more than the other kids, at least outwardly. She hides and cries and has stopped speaking to a large extent. She misses her sister and it breaks my heart. Perhaps this counselor can help her and then it will be worthwhile. I plan on being in the room the whole time. I can't see any reason for my extremely shy and traumatized 3 year old to be without me with someone she doesn't know and who I am not sure I trust.

I feel pretty screwed. It absolutely sucks to feel as if there is no safe place to turn.

I have a few very good friends and I thank the Universe for them every day. They help me trudge forward.

The Christmas Family

Last summer, on our way back from the park, where we had just honored our oldest dd's birthday, we were thinking of ways to honor her memory in other ways. My brilliant idea was to adopt a family for Christmas. It needed to be a family with a special needs child, I thought, so we could truly make a difference in a way that would be meaningful for us and for them.

Last October I contacted a local public school with the idea that they would help us find an appropriate family. I am obviously not familiar with the beaurocracy of the public schools. My phone calls were repeatedly not returned, even though when I did happen to catch someone I was assured that the "wheels are in motion". On the day I was actually planning on giving up and making some last-ditch effort to find another family through someone's church or something, I got the phone call from the social worker saying that she had found a family. She had obtained a list of the family's needs and was ready to give it to me. I was a bit annoyed only because of the length of time it took to get to this point. The SW told me that this family was very excited and grateful to be on the receiving end of our project. I was very happy to hear this. I really wanted to take the burden of providing Christmas when the financial resources are not there to be lifted.

In order to initiate this project, I solicited money from friends and family. Many people generously agreed to donate. We ended up with about $450. I think that is wonderful and more than enough to have a very merry Christmas. Well, I got the list in the mail and there were many things on it that I would love to get for them, and in fact have already purchased for them. There were also many things that made me scratch my head in confusion and a bit of disbelief. Apparently this family has called the SW a few times to add to the list. The things that are added are not cheap. Many of these things we do not own ourselves. This is resulting in a bit of an emotional struggle for me.

We do not have money ourselves. The only reason we are able to do this is because of the help of our family and friends. My own children are not receiving gifts such as what the family is asking for. When my dd died, we instantly lost her disability payments, which has resulted in difficulty buying even the most basic things, such as food. We are being helped ourselves this year, through an online community and the wonderful mamas there. We are so very grateful for that. I do not feel like this family is grateful. We have had only one direct experience with them and it was not positive.

So I need to get this figured out soon. I certainly don't want to present them with gifts with my current attitude. I want so badly to give to them out of love and good will. I think perhaps it was just too soon for a project this big. My dd has only been gone 5 1/2 months. My family is not doing Christmas with anyone else but ourselves because it is simply too painful.

There is quite obviously something important for me to learn here. Wish me luck in figuring it out.