a new addition to the song

Posted by: Sarah Trost in Being Mommy, Family No Comments »

My girls have added a few verses to the song Old McDonald you probably haven’t heard before, and I blogged about them previously.  Well, here’s a new one! Background on it- one of the chemo side effects is diarrhea and gas, so consider yourself forewarned!

Old McDonld had a farm E I E I O.  And on his farm he had a Daddy.  E I E I O.  With a fart fart here and a fart fart there, here a fart, there a fart, everywhere a fart fart.  Old McDonald had a farm E I E I O.

why it’s not the same thing

Posted by: Sarah Trost in autism/asperger's, Family, health, Today in the News No Comments »

A good friend of mine suggested that it’s a good thing for AS/ASD to be not so widely diagnosed because the extremely wide spread diagnosis of ADD/ADHD and other disorders and over medication has become an overwhelming concern and problem to many (I have read that most children in foster care are taking at least three psychiatric medications for PRIMARILY ADD.)

I completely agree that this is a problem that needs to be addressed and a solution found. However, AS/ASD is more likely to be under-diagnosed, and typically unmediated. Here is the reply I sent to her.

AS and ASD have no common medications prescribed because there is nothing recommended specifically for AS/ASD. Children and adults on the autism spectrum may be given something for anxiety, OCD, PTSD, insomnia, ect but those are independent of the autism diagnosis, considered to be comorbid syndromes. Medical insurance does not typically pay for anything related to AS/ASD such as speech therapy, occupational therapy, or behavioral therapy because it’s not considered a curable disorder. However, with a diagnosis, children and adults may qualify for special services through the schools and colleges (such as speech and OT, ABA or other therapies) and accommodations (like a quiet place to test with extra time, a special aid, ect.) They may also qualify for Medicaid and SSI, which helps the parents as well as the children with therapies and medical bills. Most on the spectrum are unable to support themselves, so SSI is very helpful for that. ASDs come with all kinds of health issues as it is strongly linked to auto immune disorders. The body begins to attack itself. Candida, food sensitivities ect can be very costly. As it is a neurological disorder, epilepsy and other disorders may also affect the person. A child or adult with autism who gets SSI will get also Medicaid. There’s also respite care for parents to get a babysitter to help care for their child with special needs while they get a much needed break.

There are DAN! doctors (Defeat Autism Now) who understand nutrition and all the ins and outs of ASDs and while there aren’t very many of them, there are a lot of people helped by them. Early intervention and nutritional help ect is out there for those who get a diagnosis. Also, without a diagnosis those on the autism spectrum are very badly treated because they are just ‘difficult’ or ‘morons’ or ‘lazy’ instead of people with a disability who may need extra help. Imagine if a child is never diagnosed as deaf. What would his parents think of him? How would others around him treat him? How would he feel? He would certainly never be taught sign language, so he would be unable to express himself. It also leaves parents helpless to know what to do with their child. In the course of ASDs, a diagnosis is definitely very helpful. In fact, if we didn’t know that Kailey and I have AS our lives would be much worse now. I wouldn’t even have them on a gluten free diet and it’s very possible that Bethany and Taryn wouldn’t be talking. I may have continued vaccinating Kaitlyn, and who knows what she would be like now. But with the new diagnostic criteria, I don’t think we’d be diagnosed. We don’t actually have the official diagnoses as although we could have received it easily enough I chose not to because I thought that could come later if need be. Now, with the new diagnostic criteria, that might not be possible.

An excellent blog on a child with AS that was not diagnosed until later is here (if you can view it through mamapedia, if not let me know and I can copy it.) http://www.mamapedia.com/voices/bright-child-with-asperger-tick-s I’m sure there are plenty of responses of similar stories there.

Change is not always good

Posted by: Sarah Trost in Aspies, health No Comments »

http://news.yahoo.com/s/ap/20100210/ap_on_he_me/us_med_mental_disorders

Changes proposed in how psychiatrists diagnose

WASHINGTON – Don’t say “mental retardation” — the new term is “intellectual disability.” No more diagnoses of Asperger’s syndrome — call it a mild version of autism instead. And while “behavioral addictions” will be new to doctors’ dictionaries, “Internet addiction” didn’t make the cut.

The American Psychiatric Association is proposing major changes Wednesday to its diagnostic bible, the manual that doctors, insurers and scientists use in deciding what’s officially a mental disorder and what symptoms to treat. In a new twist, it is seeking feedback via the Internet from both psychiatrists and the general public about whether the changes will be helpful before finalizing them.

The manual suggests some new diagnoses. Gambling so far is the lone identified behavioral addiction, but in the new category of learning disabilities are problems with both reading and math. Also new is binge eating, distinct from bulimia because the binge eaters don’t purge.

Sure to generate debate, the draft also proposes diagnosing people as being at high risk of developing some serious mental disorders — such as dementia or schizophrenia — based on early symptoms, even though there’s no way to know who will worsen into full-blown illness. It’s a category the psychiatrist group’s own leaders say must be used with caution, as scientists don’t yet have treatments to lower that risk but also don’t want to miss people on the cusp of needing care.

Another change: The draft sets scales to estimate both adults and teens most at risk of suicide, stressing that suicide occurs with numerous mental illnesses, not just depression.

But overall the manual’s biggest changes eliminate diagnoses that it contends are essentially subtypes of broader illnesses — and urge doctors to concentrate more on the severity of their patients’ symptoms. Thus the draft sets “autism spectrum disorders” as the diagnosis that encompasses a full range of autistic brain conditions — from mild social impairment to more severe autism’s lack of eye contact, repetitive behavior and poor communication — instead of differentiating between the terms autism, Asperger’s or “pervasive developmental disorder” as doctors do today.

The psychiatric group expects that overarching change could actually lower the numbers of people thought to suffer from mental disorders.

“Is someone really a patient, or just meets some criteria like trouble sleeping?” APA President Dr. Alan Schatzberg, a Stanford University psychiatry professor, told The Associated Press. “It’s really important for us as a field to try not to overdiagnose.”

Psychiatry has been accused of overdiagnosis in recent years as prescriptions for antidepressants, stimulants and other medications have soared. So the update of this manual called the DSM-5 — the Diagnostic and Statistical Manual of Mental Disorders, fifth edition — has been anxiously awaited. It’s the first update since 1994, and brain research during that time period has soared. That work is key to give scientists new insight into mental disorders with underlying causes that often are a mystery and that cannot be diagnosed with, say, a blood test or X-ray.

“The field is still trying to organize valid diagnostic categories. It’s honest to re-look at what the science says and doesn’t say periodically,” said Ken Duckworth, medical director for the National Alliance for the Mentally Ill, which was gearing up to evaluate the draft.

The draft manual, posted at http://www.DSM5.org, is up for public debate through April, and it’s expected to be lively. Among the autism community especially, terminology is considered key to describing a set of poorly understood conditions. People with Asperger’s syndrome, for instance, tend to function poorly socially but be high-achieving academically and verbally, while verbal problems are often a feature of other forms of autism.

“It’s really important to recognize that diagnostic labels very much can be a part of one’s identity,” said Geri Dawson of the advocacy group Autism Speaks, which plans to take no stand on the autism revisions. “People will have an emotional reaction to this.”

Liane Holliday Willey, an author of books about Asperger’s who also has the condition, said in an e-mail that school autism services often are geared to help lower-functioning children.

“I cannot fathom how anyone could even imagine they are one and the same,” she wrote. “If I had put my daughter who has a high IQ and solid verbal skills in the autism program, her self-esteem, intelligence and academic progress would have shut down.”

Terminology also reflects cultural sensitivities. Most patient-advocacy groups already have adopted the term “intellectual disability” in place of “mental retardation.” Just this month, the White House chief of staff, Rahm Emanuel, drew criticism from former GOP vice presidential nominee Sarah Palin and others for using the word “retarded” to describe some activists whose tactics he questioned. He later apologized.

___

AP Medical Writer Lindsey Tanner in Chicago contributed to this report.

Act Now!!

Posted by: Sarah Trost in Aspies, Being Mommy, health, Today in the News No Comments »

As many of you may know, they have been working on updating the DSM-IV, and had talked of putting Asperger Syndrome and PDD under the ASD umbrella diagnosis. Well, that had a good possibility of helping more aspies and those diagnosed with PDD, although perhaps confusing the lay people who really don’t know much about ASDs.

They are definitely doing such, but I’m now afraid that the change is actually going to hurt those with AS and PDD and perhaps even those who have classic ASD tremendously. The reason is because the diagnostic criteria is possibly being narrowed so much that the number of those diagnosed in the future will be much fewer and those currently diagnosed may loose their diagnosis. Fewer diagnosed means fewer will receive help that they may desperately need in school, with health and psychiatric care, and other services provided through private and state programs.

In the DSM-IV the diagnostic criteria for AS currently says

Asperger’s Disorder

A. Qualitative impairment in social interaction, as manifested by at least two of the following:

(1) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

(2) failure to develop peer relationships appropriate to developmental level

(3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)

(4) lack of social or emotional reciprocity

B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

(2) apparently inflexible adherence to specific, nonfunctional routines or rituals

(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)

(4) persistent preoccupation with parts of objects

C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.

D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

The new proposed revision/criteria for DSM-V will say

Autism Spectrum Disorder

Must meet criteria 1, 2, and 3:

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:

a. Marked deficits in nonverbal and verbal communication used for social interaction: (and what determines that something IS a ‘marked deficit?” People can be very flexible and learn, even those on the autism spectrum.)

b. Lack of social reciprocity; (so, if you can take turns in a game or conversation, you aren’t autistic?)

c. Failure to develop and maintain peer relationships appropriate to developmental level (does that mean that if you have a friend you aren’t autistic?)

2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors

b. Excessive adherence to routines and ritualized patterns of behavior

c. Restricted, fixated interests
3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

Condensing the criteria may make things simpler, but it certainly excludes many who are on the spectrum. This is horrible! Something should be done! And something can be done, they are asking for comments on the proposals. I know of no other time when health care professionals have actually asked for the public to give such input, so I’m hoping that people will do so in the droves.

If you have the time and inclination, please do say that while including AS and PDD under ASDs, limiting the diagnostic criteria so severely will seriously harm those on the spectrum who may be undiagnosed and possibly even those who have already been diagnosed and limit the amount of help they will receive. You will need to register but it was simple and then you can comment here

“Raise your hand for chocolate milk”

Posted by: Sarah Trost in health No Comments »

Although I’m allergic to milk, I do loooove chocolate milk. But the fact is that unless you make it yourself, it’s really bad for you. Sugar is very bad for your health, and many of them have high fructose corn syrup, which is even worse! Well, there is a new campaign sweeping the nations most popular online mommy groups, in hand magazines ect. Pediatricians, dietitians and celebrities are getting involved in the possible ban of chocolate milk from schools and presenting the argument that if we don’t flavor the milk, the children won’t drink it and will have poorer nutrician.

Of course, the fact that you are adding an additional 70 calories per 236 ml and the fact that they often are sweetened with HFCS (doubling the sugar content in the process) is something completely embraced as an acceptable risk due to the ‘health benefits’ of chocolate milk.

The ‘science’ behind it states that we should add sugar to nutrient rich foods such as milk and cereal to make them more palatable as well as other skewed facts and ideas. This is atrocious! It’s like putting on the Cocoa Krispies box that it improves immunity (they actually did that too!!) There are plenty of people out there uncomfortable with the health claims made in sly marketing techniques.

So why are they doing this? Perhaps it has something to do with milk sales going down if they ban chocolate milk in the schools. Some think that it’s a conspiracy to make Americans unhealthy so they can make more money in the healthcare system or for population control. I don’t know…maybe it’s because people are typically stupid, especially in large groups. The fact is that this campaign needs to be crushed! It gives the very wrong impression that chocolate milk is actually good for children, when there’s already serious doubts wither regularly processed nonorganic white milk is suitable for consumption! Surely adding chocolate (often artificial) and sugar (often high fructose corn syrup) is NOT a good thing. True, children who drink flavored milk will drink more of it, but is this beneficial? I don’t think so. Those nutrients can be consumed by eating fruits and vegetables and cheese and yogurt rather then encouraging children to guzzle chocolate milk because it is ‘good’ for them. Of course, children don’t want to eat things that are good for them, which is why chocolate milk is the ‘easy way’ for them to be ‘healthy.’ Really, if there was an easy way to be healthy, our nation would have a low BMI and good muscle tone.

My kids love fruits and veggies, but they were raised with them. Processed foods and…chocolate milk…are a special treat. I think that if children grow up with a good diet you don’t have to buy sugared up cereals and chocolate milk to get them to eat well, and at the risk of repeating myself yet again, sugar has been proven to be bad for you! How can adding something bad for you to mechanically processed ‘nutrients’ be considered good for you??!!

STILL

Posted by: Sarah Trost in stillbirth/pregnancy loss, Uncategorized No Comments »
www.ourstage.com

STILL
music & lyrics: Gerrit Hofsink

I’ve been waiting for you
For such a long time
You’re always on my mind

And I’m lying awake
Most of the night
Waiting to hold you tight

Now that I do
And look at you
My heart is breaking
This can’t be true

Chorus:
Lost you before I found you
Gone before you came
But I love you just the same
Missed you before I met you
On earth we never can
But in heaven we’ll meet again

Close to my soul
Close to my heart
Right from the start

Lost in time
Lost in space
Can’t wait to see your face

Now that I do
And look at you
My heart is breaking
I know it’s true

Chorus:
Lost you . . .

Sometimes I find myself wondering what to do
With this pain that I’m going through
But I know one day, God will take me away
And I’m coming home to you

And when I do
And look at you
My heart is healing
I know it’s true

Chorus:
Lost you . . .

Bet ya didn’t know I like to break!

Posted by: Sarah Trost in Uncategorized No Comments »

Peace I leave thee, peace I give unto thee

Posted by: Sarah Trost in Uncategorized No Comments »


It is so hard making small choices sometimes.  Do I buy that dress?  A new pair of shoes?  Chicken or beef or tofu?  Big decisions about much more important options can be almost impossible, sometimes, especially when you are leaning in a direction that those around you may disagree with.

Perfect love drives out fear, and  if you seek His face He will give you peace about the path He wants you to take.  Sometimes, there is a God given healthy concern about an issue, but even in those times when there is a Godly urgency about something, there will be a level of peace there with you, you should never be overtaken with fear.

For instance, it’s only when I’m being selfish that I feel panic/fear over the idea of getting pregnant this month.  When I’m wanting to be on the computer or read or do something else that my children are taking me away from and requiring extra attention from me then I really want to give, that’s when I start thinking I’m crazy for wanting more children or the ‘burden’ of pregnancy woes and surgical delivery.  But when I have faith and trust in my Maker, I have joy in looking forward to another.

This is a good pattern to live your life by- notice why you feel fear and if it’s because you are not being Christ-like, then you need to look inward for a heartchange and reach further inward and ask our Helper to change it.  Jesus knew that fear and sinful selfish desires would rule the hearts of His followers, that’s why He told them before He left Earth that He would send a Helper, the Holy Spirit.  And as we change we find ourselves reaching outward towards others in Christ’s love.  When our hands are open to give and to receive we can’t make fists to fight or to hold onto our fear and selfishness.  This is something that I have really been learning a lot about these last couple of years of trials.

So as I am in the midst of the cancer pit and the chemo horrors and the pregnancy losses, do I have fear, or faith? I find that I have faith and peace. But it’s not easy, even with faith. I am not appreciating this time of my life. I don’t embrace it with the kind of joy that some say we should have while facing trials. I just want it to be over. But…there is still peace and faith.  Well, most of the time!  Admittedly there are times that I take my eyes off Jesus and begin to sink into the raging sea.

What about you? What has God taught you about faith, fear, peace and doubt? When have you felt the most peace and how has God used fear to bring about good things in your life? I’m willing to bet that true fear has never brought about good things.

CDC website: H1N1 mild?! A dud, claims chief medical officer/Oversold, claims Harvard study

Posted by: Sarah Trost in health No Comments »

Straight from the government, yes, the same one who declared the ‘swine flu’ a pandemic and declared a national state of emergency!  ” Most people with 2009 H1N1 have had mild illness and have not needed medical care or antiviral drugs and the same is true of seasonal flu.”

Yes, H1N1 has been problematic for those with other underlying conditions, but the same is true for the regular flu.

Another article of interest “It’s really not causing — and is not going to cause and nowhere has caused — significant levels of illness or death,” said Dr. Richard Schabas, Ontario’s former chief medical officer of health.  “But governments moved ahead regardless. They ramped up their response, spent a huge amount of money on vaccines and other things (Canada spent $1.5 billion on their vaccine campaign.)  The huge investment that’s been put into planning for what has ultimately turned out to be, from a pandemic perspective, a dud.”

ABC news said “A new analysis, using H1N1 deaths in the United States in the spring and projecting likely outcomes for this fall, shows that a typical — or possibly even milder then average flu season should have been expected.

The finding begs the question: Has swine flu been oversold?

The new study, done by researchers at Harvard University and the Medical Research Council Biostatistics Unit in the U.K., says swine flu cases in the spring indicated a flu season that might be, at worst, slightly worse than normal.

“It would have been great to have that back in June,” said Philip Alcabes, an associate professor in the program in urban public health at Hunter College’s School of Health Sciences. “There would have been one more bit of evidence behind my assertion six months ago” that people were overreacting to H1N1.”

Mercola says “in Britain, health authorities’ original worst-case scenario — which said as many as 65,000 could die from H1N1 — has twice been revised down and the prediction is now for around 1,000 deaths, way below the average annual toll of 4,000 to 8,000 deaths from seasonal winter flu.”

And “Now it looks as though the H1N1 scare of 2009 will go down as one of the biggest government and pharmaceutical scams ever, renewing a healthy, and necessary, skepticism about government fear-mongering, the swine flu vaccine and the dubious dealings behind the implementation of worldwide mass-vaccination programs.”

From the most clinical health professional to the conspiracy theorists alike, all can agree that this most certainly was NOT the flu pandemic of 2009.

The Flu Pandemic

Copyright 1999 Topmast Productions and the Flying Fish Sailors

Chorus: It was the Flu pandemic
And it swept the whole world wide
It caught soldiers and civilians
And they died, died, died!
Whether they’re lying in the trenches
Or lying in their beds
Twenty million of them got it
And they’re dead, dead, dead!

There was a soldier on the battleground in 1917
He turned there to his buddy with his face a ghastly green
He said “We made it both through Passchendaele, the Somme, and Flanders too
But now my number’s up my lad for I’ve gone and caught the flu”

chorus

Well a nurse was in the hospital when Tommy was brought in
When he sneezed she caught a face full that was flying in the wind
She wrote a letter home to England to tell them of her plight
But the letter never got there ’cause the postman too had died

chorus

From the meadow-lands of Somerset and o’er the bounding main
To the shores of old Americay they sung the same refrain
Mothers, fathers, uncles and aunts as well as the odd nephew
Brothers and sisters and bosses and lovers were all got by the flu

chorus

Well a farmer out in China watched his family dropping down
And a businessman in Cairo hit the street without a sound
And an eager little Bolshevik in old Sevastopol couldn’t keep up his grinnin’ at Lenin as Comrade Virus took its toll

Time is short

Posted by: Sarah Trost in Being Mommy, Family, stillbirth/pregnancy loss, Uncategorized No Comments »

I dream of Benjamin sometimes.  Soon after his death I had a very healing dream where I was in a pretty cabin room with double doors that opened onto a patio.  Gauzy white curtains blew with the wind and soft white sheets with fluffy pillows surrounded me on the bed.  I was holding Benjamin and his eyes were open, he was alive!  He heart beat within his chest and he breathed rhythmically.  The midwife in my dream (different then my RL midwife) was there and a little confused why I thought that Benjamin had died.

I usually don’t remember my other Benjamin dreams when I wake, only that I had dreamed of him.  This morning I had another dream, though.  I did not realize I was dreaming, or it would have been very different.  I had things I wanted to do, an agenda for the week.  My mom was watching him, giving him a bottle.  I kept thinking that it was ok, I would see him soon.  I did see him for a brief moment here and there, and even nursed him, although I didn’t pay much attention to him.  It was just something I did, not a precious experience between mother and son.

When I woke I mourned that I didn’t cherish the time I had with him.  If only I had remembered that he was dead and I was dreaming and enjoyed him, instead of off doing my own thing.  But isn’t that the way our lives often go?  We are busy doing our own thing and although it may not mean leaving our children with someone else, we have our minds on the cooking and cleaning and other things…and neglect to cherish each moment with our loved ones because we think they will be there when we are ready.  But then sometimes they aren’t…things have changed and they are gone and our lives are full of missed opportunities that can never be retrieved.

“The Days we are given are gifts from above,today we  remember to live and to love…” Superchick.

You get what you get

Posted by: Sarah Trost in Uncategorized No Comments »

In our house we have a few phrases that you hear every day. Here are two:

“You don’t get seconds until everybody has had firsts. ”

“You get what you get and you don’t whine about it! “

The second one is a particular favorite of our two year old and can be heard frequently (particularly when someone is whining.) When someone says it inevitably another child (or several) chorus “AMEN!”

It is so funny.

yummy

Posted by: Sarah Trost in health No Comments »

the joys of soda

Now, before I get a bunch of emails, I know that some sodas do not have HFCS.  In fact, there’s a popular line that has Splenda, although some believe that Splenda is worse then sugar.  When I have a hankering for soda I try to drink something with sugar or a new stevia sweetened, carbonated, flavored green tea.  Ultimately, I just try to stay away from it alltogether.  That’s a great ‘New Years Resolution.”  One soda a month?  None at all?   Carbonation dehydrates and has a strong link to tooth decay, so limiting all carbonated beverages is a good idea.

My sister’s dream

Posted by: Sarah Trost in Sovereignty of God, stillbirth/pregnancy loss No Comments »

We are dreamers, always have been. She doesn’t know it, but I’ve been working on a book, a book without a name. Names are hard to decide on- you want something simple and self explanatory but memorable in a very nice way. She also doesn’t know that I have felt very strongly for years that I would be a public speaker. God has gifted me in this area, and I knew one day He would use it for His glory.

Well, my sister called me a little while ago with her dream from last night (which was Benjamin’s 9 month birthday.) I was standing on a stage speaking, and I had written a book. She remembers details, like my new hair cut, clothes and glasses. Beside me was a sign that had a pretty water color painting of a woman in a rockingchair looking through a window. The sign read “Loss and Gain: A Mother’s Story.”  Sitting in front of her was a man (She didn’t notice if it was Paul) and our 4 girls (older) and a little girl about 4-5 and a little boy about 2-3.  He had platinum blond hair and brown eyes (my husband did when he was young.) He wore long light blue shorts and a matching vest and white dress shirt.

So, now I have a title for my book.  🙂  She said I can use it so here’s my official claim to it.  Copyright 12/9/2009.

The Circle

Posted by: Sarah Trost in book reviews, Uncategorized No Comments »

I have been reading a series of books over the last couple of years.  It’s now totaled to 15 books, but they are grouped in smaller series divisions.  Here’s a ‘trailor’ for ‘Book Zero” Green , it somewhat describes the other books as well.  I wouldn’t read Green first, though.  Read the Circle Trilogy Black, Red, White (I think that’s the order, there is one big book that has all three together.) The end of Green is the beginning of the trilogy, that is true, but it would be confusing and give too much away if you read Green first.  You can likely get them from the library, too (I did, although I had to get some of them from other libraries but they send them to your chosen library.)

Basically it’s a fantasy series kind of like LOTR and C of N.  Thomas Hunter wakes up in a beautiful world where the animals speak and the people follow the Great Romance as they woo each other and swim in Elyon’s waters at the Gathering, celebrating life and love in Elyon.  They are friends of the Roush, fluffy white bat like creatures who are as cuddly as they are noble and courageous.  The humans’ leader, Tanis, is deceived by the Shataiki- the black and evil counterparts to the Roush.  Their world falls into Black as the Shataiki are released from the Dark Forest to ravage the Colored Forests.  Tanis and those who follow him now worship Telah, the ruler of the Shataiki, instead of Elyon. Their flesh is eaten by the Disease making them Scabs, creating a new race called the Horde who make it their mission to destroy all those who love Elyon and bathe in the lakes to fight the disease which tries to overtake their flesh as well.

Meanwhile Present Earth is under threat of the Raison Strain, a virus that began as a vaccine and mutated into something that was sure to destroy all human kind.  Thomas Hunter races the clock as he tries to save both worlds, jumping back and forth between them each time he goes to sleep.

As I said there’s also The Lost Books  and the Paradise Novels.   The Lost Books are about the characters in the future Earth and the Paradise novels are about the characters in the present Earth and how they affected Future Earth. Definitely read the Circle Trilogy first.

When I read Ted Dekker’s books in this series I feel like a hole opens up and I drop into this other world.  The characters are so rich and as realistic as one can get in a fantasy realm.

Birthing From Within

Posted by: Sarah Trost in Being Mommy, book reviews, health, stillbirth/pregnancy loss 1 Comment »

When I was pregnant with Benjamin I borrowed our local ICAN library’s “Birthing From Within.” It looked interesting, although I had never heard of it before. Actually, natural birth books were entirely new to me as I didn’t know anyone who was pregnant or had children when I got pregnant the first time and then went into labor at 26 weeks, again at 28 weeks, again at 30 weeks, and had a c-section at 32 weeks for fetal decels (and of course was railroaded into more c-sections later.)

For those of you who don’t know, it’s not just a book about natural birthing. It is more so a book about discovering one’s self, your inner most thoughts and feelings about birth. I found that largely, it was a therapeutic book on acknowledging one’s fears and pain from previous deliveries or other traumatic experiences and healing in those areas, so one can embrace a new pregnancy and delivery with fresh excitement and peace. A journey untainted by previous experiences, only aided by them.

I certainly found the book a healing BEGINNING. I was still planning my VBA4C and read so many other books as well and was really doing well emotionally/mentally. But then tragedy struck and I was once again in need of healing. I ordered Birthing From Within when I ordered some books for my girls on stillbirth. Then before I started it, my sister was faced with some pretty serious issues with her OB so I loaned her Birthing From Within in hopes that she would avoid a c-section with her third pregnancy. She gave it back to me last night and I skimmed the first chapter.

The first activity has you journal your thoughts on pregnancy and delivery. These were the first thoughts that came to me- Death. Pain. Empty Arms. Tears. Grief.

Wow. OK. So I guess it’s time to re-read it. Hopefully by the time I finish it (along with the journaling and other birth art that will come through reading it) my first thoughts will have transformed. Certainly I cannot be a doula/midwife while I have such feelings predominating my feelings of pregnancy and birth. It’s time for a rebirthing of myself, so when (if) I do have another baby it will come from a place of wholeness and light, as truly all births begin from within, wither one acknowledges it or not.

Thank God for my DR

Posted by: Sarah Trost in Being Mommy, Family, health, stillbirth/pregnancy loss No Comments »

I went to my post surgical checkup today. Dr Zepeda once again said that my remaining fallopian tube and ovary looked great and my uterus healed very nicely from the rupture. He gave no concerns about another pregnancy. Paul asked about conception during chemo and he said that was just fine, although chemo may cause infertility, it will not cause birth defects in the baby! I know there’s a lot of men out there who are told to wait 2 years after chemo is OVER before trying to have another child. His oncologist ALSO said that chemo is not a concern to him during conception and my OB said he’s known that oncologist for 30 years, and he’s known to be the best in the field (which BTW my OB and our chiropractor are also well known and all three teach in medical schools.)

You could tell that Paul was very relieved, especially that my uterus looks great. There’s a lot of scar tissue around the bladder which is typical following multiple cesareans. I’ll have to remember discussing silicone film in the future to help prevent adhesions after another cesarean.

Ultimately I’m still praying that God heals me and I can have a natural delivery. I’m not sure that God will bless us with another baby, but if He does our youngest will be 3 1/2 or older. After having ‘stair step’ deliveries, that will be a very different experience!!

This has been such a hard year on all of us. I am just begging God for a fantastic 2010. We’ll see what happens.

If you Want me To

Posted by: Sarah Trost in stillbirth/pregnancy loss, Uncategorized No Comments »

The pathway is broken
And The signs are unclear
And I don’t know the reason why You brought me here
But just because You love me the way that You do
I’m gonna walk through the valley
If You want me to

Chorus:
Cause I’m not who I was
When I took my first step
And I’m clinging to the promise You’re not through with me yet
so if all of these trials bring me closer to you
Then I will walk through the fire
If You want me to

It may not be the way I would have chosen
When you lead me through a world that’s not my home
But You never said it would be easy
You only said I’d never go alone

So when the whole world turns against me
And I’m all by myself
And I can’t hear You answer my cries for help
I’ll remember the suffering that Your love put You through
And I will walk through the darkness
If You want me to

Cuz when I cross over Jordan
Gonna sing, gonna shout,
Gonna look into Your eyes and see You never let me down
So take me on the pathway that leads me home to You
And I will walk though the valley
If You want me to

Yes, I will walk through the valley
If You want me to


Raising a large family with disabilities

Posted by: Sarah Trost in Aspies, Being Mommy, doctrine and Biblical truths, health, Sovereignty of God No Comments »

I won’t fake it.  It’s not easy being a mom who is also autistic.  It’s even harder being a mom who is autistic and raising children who are on the autism spectrum.  Add to that a mom who is autistic, married to a man with cancer and undergoing chemotherapy, raising children on the autism spectrum, while undergoing miscarriages and surgeries.

Yet, I find joy in serving my family.  Not always.  I do grumble occasionally.  But I love my family immesly.

I realize that my husband would likely do better with a wife that is more self sufficient.  After all, I can’t seem to remember to brush my teeth or take my vitamins without his pokes.   But he loves me and doesn’t seem to mind (most of the time) helping me in my disabilities.  His feelings aren’t hurt when I tell him I can’t handle being touched that day.  He notices when I am overwhelmed and need some time in a quiet space (who doesn’t need that, even without a disability!)

I so desire the ability to give him a perfectly orderly and quiet environment where he can recover and heal.  I’m sure he desires that as well, yet, he recognizes that I have some limitations.

Not only do I feel that I fail my husband in certain areas, but I think I fail my children.  I can’t seem to find a way to rally them up and get them to joyfully and willingly obey.

Still, I am pleased with God’s direction and immeasurable strength and peace He has provided me.  Not that I always illuminate with peace, mind you, but it is there for the taking.

For instance, God directed us towards the gluten free diet.  Our lives are completely different thanks to this ‘simple’ change in diet!  I find that tea has helped give me some calm during the crazy parts of the day like after lunch and dinner, and seems to be helping Paul as well.  Most of all, a grasp of God’s sovereignty carries us through any trial that comes our way.  Again, not that we always react in faith!  But God is unboundingly merciful to us in such times of distress.  Ultimately, we have peace in the midst of a raging storm.

Yet another loss

Posted by: Sarah Trost in Being Mommy, Family, health, stillbirth/pregnancy loss No Comments »

I had emergency surgery for an ectopic pregnancy yesterday. It wasn’t in my liver (thankfully, as I was fearing that) but in my right fallopian tube. It was the twin to the baby I miscarried several weeks ago. The Dr said that my other ovary and tube look wonderful, my rupture has healed well, although I have a lot of scarring where the bladder is.

My dr was completely shocked as well as the NP who did my earlier scans and the conferring OB. Everyone were totally blown away. I wasn’t, I’ve felt from the beginning I had twins and one was ectopic. They would have never caught this one but I have been terribly sick the last three weeks and have been pushing for answers to why I feel this way. I thought it was a concussion and went to the ER who released me because of a positive pregnancy test and no ultrasound. Two days later I had an ultrasound and more blood work. Nothing in the ultrasound, and blood work showed a decrease in HCG as I had expected since I had miscarried weeks earlier.

I called several times but they never got a message to the OB and A WEEK LATER my OB called very concerned about my blood work and wanted to see me ASAP in level 4 (?) ultrasound. They had no appointments available and said they could see me in a week. I insisted that it was imperative that I get seen sooner and they said I have an apt IN DECEMBER. So I finally had to settle for a week, which was Wed. I went in for the ultrasound. The tech was very concerned and didn’t say much but spent a long time doing the ultrasound. She told me
to go immediately to my DR office ( which was in the same department.)

I did and was told GO HOME. He will call me in a few days (like he did with my lab work??) I refused to go home. But he’s not here, he’ll be back in a few hours, it’s his surgery day. I insisted that they get someone to look at my ultrasound. I overheard them talking to the tech who was clearly worried and said she couldn’t see the baby. Since we weren’t looking for a baby specifically (the ultrasound order didn’t say why I was there) I knew that something was clearly wrong.

So they called my OB and read to him what the ultrasound tech wrote in the report, that there was a large mass near my right ovary. They didn’t tell me this, but came and told me that they read the report to the OB while he was in surgery and he told them to not let me leave. So I waited several hours and he came in with a conferring OB who reviewed my previous ultrasounds and records. They were astounded and as it was too late to get me into surgery scheduled me for first thing the next morning. (I left at 4:30 AM for the hospital.)

When they opened me up my tube began to rupture. I bled a lot. They almost had to give me a transfusion. My BP went very very low and my hemoglobin is low (I’m taking iron for it.)

I am so thankful that I hit my head and pursued the strange symptoms and pushed for the ultrasound and insisted on staying until someone looked at my ultrasound. Otherwise, I would have ruptured at home, 45 minutes from the nearest hospital and alone (my parents were going out of town and hubby works an hour away.) I could have died. But God is sovereign and merciful and He protected me from death.

Another set of twins with Jesus. I was thankful that there was no
heartbeat as I couldn’t make that decision to take the baby out, even if it threatened my life, if it meant directly killing the baby. It’s been several months that I felt strongly I would have an ectopic and had prayed fervently that if that were to happen that God would take the baby home to be with Him before the surgery. His peace was so strongly upon me as I was wheeled into surgery.

Today Paul has cried a lot. It’s very painful for him to cry since the chemotherapy causes tremendous pain to his face. But he is so very sad that our four living girls (ages 2,4,5,6) have experienced so much loss lately. We all are.

Sarah,mom to 4 girls on Earth Kailey Faith, Bethany Hope, Taryn Grace and Kaitlyn Joy and possibly 8 treasures in Heaven

missing Allanah Charity (Kailey’s twin lost at 9 weeks in 2002)
Thomas (Benjamin’s twin lost at 6 weeks in 2008)
Benjamin Isaiah stillborn at 40 weeks on March 8,2009
Emma Liberty miscarried at 7 weeks October 7, 2009
Emma’s twin Elizabeth Shalom ectopic pregnancy removed Nov 12, 2009
three possible (unconfirmed) miscarriages in 2006-2009

Held

Posted by: Sarah Trost in Being Mommy, QF, Sovereignty of God, stillbirth/pregnancy loss No Comments »

Held by Natalie Grant

Two months is too little
They let him go
They had no sudden healing
To think that providence
Would take a child from his mother
While she prays, is appalling
Who told us we’d be rescued
What has changed and
Why should we be saved from nightmares
We’re asking why this happens to us
Who have died to live, it’s unfair

[Chorus]
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We’d be held

This hand is bitterness
We want to taste it and
Let the hatred numb our sorrows
The wise hand opens slowly
To lilies of the valley and tomorrow

[Chorus]
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We’d be held
[Bridge]
If hope is born of suffering
If this is only the beginning
Can we not wait, for one hour
Watching for our savior
[Chorus]
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We’d be held
We’d be held

This is what it is to be loved and to know
That the promise was when everything fell
We’d be held

This is what it means to be held…..