Just a brief update on Meggie, she has been doctoring for scoliosis for a number of years, getting x-rays and seeing Dr. Thometz at Children's Hospital. She also has Osteoporosis and low muscle tone, which is not helpful to her more recent increase with her spinal curves. Instead of having one curve, Meggie has two, so she is kind of like an S shape. one curve starts up at the neck and the other in the lumbar area in the back. More recently Meggie's curve progressed to a 102 degrees in a sitting x-ray film. Not the direction we were hoping, but the doctor has been saying surgery would be inevitable, despite of our attempts to stabilize the scoliosis with a brace, therapy,and positioning, we even did massage and chiropractic care for comfort for a while. So even though Meggie was a little younger than they would have liked her to be for this surgery, the curve was starting to progress to fast, and she was at a point where the scoliosis will not allow her spine to grow anymore, therefore surgery was scheduled at this point. Many of you already know doing surgery on these children with multiple issues is not always rushed into or desirable, but often times necessary. In preparation all the exams and lab work were done prior to surgery, and then one more unexpected call on Meggie's lab results indicated she had a low or abnormal PT, PTT and INR, in other words, her blood was not clotting fast enough. So one more appointment, we were off to the Hematologist for a consult, and she confirmed Meggie does have what is called Von Wildebrands Disease, she will have easy bruising and bleeding, but the treatment was very doable and could start with an IV treatment one hour before her surgery, and then once each day for three days thereafter.
Surgery Day
Monday, October 24, the morning of surgery we arrived at Children's Hospital at 6:10am, and went straight to Day Surgery to check in. After doing some paperwork, and a short wait, we were off to a pre surgical room to start preping Meggie for surgery. We answered questions for the nurses, they did Meggie's vitals and the next nurse came in to do her IVs. The only bad thing is that Meggie is not so easy to draw blood on or get IVs started, which the first nurse was about to experience. The first attempt she managed to get the vein, but unfortunately it collapsed, as did the second attempt. The nurses came back with some medication to relax Meggie (which worked great) and then the next attempt would be by a doctor in the Anesthesiology Dept. Dr. Santose, she was kind and compassionate, and also got Meggie's IV started on the first attempt.
After a short time she was off to the OR, where we spoke with the physicians, and staff before we had to leave her (which always is a difficult thing) and she would be brought to the OR room for the final prep.
Brad and I then found our way to the parent waiting area, where we would spend much of our day, other than going to get a meal. I will admit I needed to do some sighing and some deep breathing in the beginning to relax and stay calm, that's where so many of you praying just kept us going. This last week before surgery was the most challenging just knowing how close the surgery was coming, there were times my legs felt weak and I would just breath deep, and say a prayer, remembering when I am weak, he is strong. Every 2 hours the nurse would call out from the OR to the parent waiting area and let us know how Meggie was doing. The first call was at 11:00am saying they were just getting a good start in surgery and it was a little latter than anticipated due to having to start 2 additional IVs and the difficulties in doing so. The second call was at 1:15pm stating Meggie is doing well, and her vitals are good, so I asked the nurse approximately what time she thought they may be done, and she said about 5:00pm. During the day we were watching parents coming in and out of the waiting area and all of the initial families that had either come in with us or even those who came after us were all leaving after consulting with their child's physicians, the families would then leave with a smile on their faces even if they were looking distraught upon coming to the waiting area. My hope was that we would be leaving with a smile too, and hear those reassuring word that everything is alright.
We were just waiting for the third call when the doctor came walking into the waiting area and I think the color just ran right out of my face, all I could think of was why is he in here, he should be in with Meggie, dose he have bad news? Is there anything wrong? Just then I watched the surgeon's expression and he cracked a smile... now after bring Meggie to see him for many years, I knew him well enough to know he would not crack a smile if all was not ok......at that time the air just released out of my lungs like a balloon. "The surgery went well" Dr. Thometz said, why don't you follow me to the conference room. He explained things to us in more detail, how one rod was placed on either side of the spine and fused together with grafted bone, a transfusion was given due to her bleeding, but nothing foreign to them. Then he asked us to have a seat in the waiting room until the OR was finished getting her ready to move to the ICU. Though it seemed like we were waiting an eternityy to see her, we were just so relieved things went well
When the nurses and anesthesiologist rolled Meggie out of the OR, they said now she is going to look swollen they said, and she reacted to the foam pillow her face was laying on so she had abrasion looking sores on her face.and she reacted to bandaids, tape, which they seemed to use alot of, so that left many sore areas in different places. All these major sensitivity issues, where did this come from? this was new to us other than the bandaids, she is allergic to latex and and non latex bandaids, so bandaids are now a bad word to us, (just a little humor).
ICU
Meggie was quickly taken to the ICU, and Brad and I were then on to the parent lounge to wait till we could get into Meggie's room, during that time I was able to make a couple of quick calls and give friends and family updates. When we finally got to Meggie's room, it seemed as though she was hooked up to every machine in the room, though there may have been more machines than I was aware of in that room. Through the evening Meggie received excellent nursing care, they were right on top of things, Meggie's oxygen levels would drop often and her pulse would climb higher and higher. And though the nursing care was excellent and I did get some sleep, I was still waking about every hour and at one point I may have gotten two hours of sleep in a row, I tried to take advantage, knowing that when we change to a medical bed area she would not have the availability of the nursing staff as in the ICU. Tuesday morning I was told by the doctor she would be transferred in the afternoon around 3:00 - 4:00pm, so I got some lunch, and when I came back they were ready to transfer her early, because they felt she was stable, and ready for the healing care.
Tuesday, Oct. 25th
Meggie was doing well at the time of transfer, but unfortunately about a half hour to 45 minutes after her oxygen was dropping, and her pulse started rising, and some Honorable, nasty congestion set in, (now this is a child who is unable to handle even small amounts of congestion) during the afternoon, she needed to be suctioned about 3, 4, 5 plus, plus times by the nursing staff whom would just come in and suction, and with in 10 minutes or a little more I would be pushing the nurse call button for them to come back and suction some more. An RT had to be called in for suction and breathing treatments, and this was a great help, but still had congestion despite all efforts. During the evening the pediatrician doctor ordered a chest x-ray and blood work, after reviewing the x-ray they decided she may have pneumonia, adalexsis (not sure of the spelling), where the sacs in the lungs collapse, or both. I am just saying after 10 years of caring for this little girl, doctor mom says there is definitely some pneumonia going on, which is more confirmed to me on Thurs. afternoon. IV antibiotics were started right away and we were told there was a possibilityy we would have to return to the ICU if things got to much for the care that is given on this floor or if she would need the ET tube place back in. At that time the tears started to well up in my eyes and I had all I could do to hang on, it is never easy to regress! Thank the Lord we made it through the night and did not end up back in the ICU, Meggie was now starting to show a little more signs of responsiveness by Wed. especially when the pain meds were changed., she had much better pain control.
Wednesday, Oct. 26th
Making some progress today had some fever off and on, but things are seemingly turning for the better, the antibiotics seem to be helping and they want to start some tube feedings with her formula. We actually had Meggie sit in her chair today, 3 times, and she did tolerate it ok, with pain getting in and out of bed, so the nurses could adjust her meds so she would be able to have lesser pain at those times. Still having some congestion, the fever was low grade, and we had a great night of sleep. There are so many doctors, nurses and specialist in different departments coming in and out, it keeps me busy.
Thursday, Oct 27th
We had a good evening on Wed. I think Meggie was able to sleep well and then Thurs. morning and early afternoon went well, we were able to keep on top of the congestion issues, and we even had some visitors on Thursday afternoon. Unfortunately as we got later into the afternoon, Meggie was overwhelmed with congestion, had vomiting episode, and fever. Not at all what we want after a surgery like this, more pedialyte and less formula for feeding for now. On a good note we did get to remove the Foley catheter today hooray! Little by little, and step at a time, I just keep reminding myself God is in control!
Laura Story wrote the song "Blessings" And the words are so beautiful and meaningful, and I often listen to this song, it says: What if our blessings come through raindrops, what if our healing comes through tears, what if a thousands sleepless nights is what it takes to know your near,....what if trials in this life are your mercies in discize.
Thank you all for your prayers you are blessings in our lives, ~ please continue to pray for continued health and healing for Meggie. Have a good night everyone!
Thursday, October 27, 2011
Wednesday, September 14, 2011
Kindness (hessed) for the Special Needs Children
I have to admit for many years in the beginning of Meggie's life I was not sure of God's purpose or plan for myself or my family, but in time, God would reveal just what he would have us do. Now I know he was preparing me to speak, to blog, to write, and to raise my family to honor him. Raising a child with special needs is a learning experience to say the least, one that will bring tears and laughter, hopes and fears, inclusion or rejection, hardship or wealth, joy and sorrow,...... and yes, maybe even Kindness and Blessings from some of the most unlikely places.
This past month I had the honor and the privilege to be interviewed by our Pastor, Dr. Gary Hylander, as he spoke on "The Special Needs Child". This was one message out of a profound series that was presented to our Church family. This message was taken from 2 Samuel 9:1-13, I highly recommend you read it, you won't be sorry. I was amazed by the kindness (hesed) of David. When you are done reading this, you can hear the message by following this link: www.sheboyganefc.org then click on the listen online box, scroll down to "The Special Needs Child" August 28, 11 message and click on the arrow to play. There is 5 main highlights in this message to listen for:
~ The initiative the caregiver takes
~The assurance the caregiver provides
~The arrangements the caregiver makes
~The dignity the caregiver instills
~The promise/responsibility the caregiver fulfills.
I hope this will inform, inspire, encourage, and bless many of you, and may you show some kindness (Hesed) to someone who may least expect it. For God told us in his word that what we do for others, (the least of these) is like doing it to him. Enjoy the message!
Blessings,
Wendy
This past month I had the honor and the privilege to be interviewed by our Pastor, Dr. Gary Hylander, as he spoke on "The Special Needs Child". This was one message out of a profound series that was presented to our Church family. This message was taken from 2 Samuel 9:1-13, I highly recommend you read it, you won't be sorry. I was amazed by the kindness (hesed) of David. When you are done reading this, you can hear the message by following this link: www.sheboyganefc.org then click on the listen online box, scroll down to "The Special Needs Child" August 28, 11 message and click on the arrow to play. There is 5 main highlights in this message to listen for:
~ The initiative the caregiver takes
~The assurance the caregiver provides
~The arrangements the caregiver makes
~The dignity the caregiver instills
~The promise/responsibility the caregiver fulfills.
I hope this will inform, inspire, encourage, and bless many of you, and may you show some kindness (Hesed) to someone who may least expect it. For God told us in his word that what we do for others, (the least of these) is like doing it to him. Enjoy the message!
Blessings,
Wendy
Tuesday, August 2, 2011
Meggie's Water Therapy
Summer is sooo glorious! The warm weather, the warm water, and the sunshine that just seems to dance and sparkle on the water's rippling waves, that in and of itself is therapy for everyone, wouldn't you agree? Last weekend we took a drive and ended up along the lakefront (Lake Michigan) when Meggie was just starting to fuss a bit and really get noisy, so we parked and opened up the doors and windows of the van, and just sat and listened to the waves and the seagulls while we soaked up alittle sunshine. Needless to say, Meggie quieted down almost immediately. She started relaxing as she listened with us, we explained to her what she was hearing, since she does not have the vision to see all the beauty around her. And I have to wonder if what she hears is similar to what we hear, or is it very different, and when the sound enters her ears and the message travels to the brain, does it give her the same information we get, or is it different due to missing the part of the brain that transfers information from one side of the brain to the other. This part of the brain is called the Corpus Callosum, and Meggie's is totally absent. Whatever she was hearing relaxed her for quite some time, and the rest of the family also! How I wish at times Meggie could run through the sand, and be able to know what it feels like to have the sand between her toes, the warmth of the sun on her hair, and the gentle lake breeze on her face. Tho Meggie's experiences are not quite like ours, we continually learn day by day as a family how to share as many experiences with descriptive picture words so she can enjoy this world around her. At times I think of those who worked so intently with Helen Keller to teach her everything they possibly could to make her life as enriching as could be came before me to be an example. And what they did and the passion they had is an inspiration to me!
Now to provide some meaningful experiences for Meggie, humm,.......Water, W-A-T-E-R, when Annie Sullivan would take Helen out to the water pump, and run water over her hands, she would say it and then sign W-A-T-E-R in the palm of her hand. Let's start with water, let's get Meggie's hands in the water!!!
How great it would be to be able to walk out our back yard and have the lake front in your back yard, but, is not the case for all of us so we try to think of other ways to add water into our lives as therapy or relaxation. A shower or a bath is great, some people go to a pool to swim or exercise if their able, and Meggie, well, we decided to play in the fountain one day, excuse me, not totally submersed, just our hands. The fountain was purchased years ago, and we never set it up or found a spot for it, so we got it out of storage, cleaned it up, (thanks to my older daughter ~ you get honorable mention), installed the pump, filled with water and.........
WaLa....water therapy!!!
Little by little, new unfamiliar things take some time.
Reaching on your own Meggie, good job! She became more sure of herself the longer she explored the water. I loved it when she was initiating the reaching on her own, it made me feel like we had accomplished a new goal.
And soon the warm water and the trickling sounds make you feel like your in a spa, now we are enjoying this thoroughly, we spent some time in the water that day.
Did you enjoy the fountain Meggie? Do you like the water? I think you do!!!
Does the water make you happy?!?
You like how the water sounds to don't you!?! ............... We'll do this again!
We'll be done for today, and now we just spend some time with Meggie's best friend.
Today, we are thanking God for Water!
Monday, July 4, 2011
Fun With Summer Unit Studies
Starting this Spring already we were reading a book to Meggie about Spring changes, which lead us into the changes that come with Summer. Now you maybe thinking why are they working in the Summer, when everyone else here is taking a break? Meggie is in program all year around, she is always learning, and we also like to take advantage of her healthy seasons, since she does miss out during sick season and for Doctors appointments. So moving from Spring to Summer, we had been talking about plants and trees and grass, and how everything comes alive - what a great time to follow up on how we need to care for the plants. The first thing I thought of was how Meggie could help care for the flowers we went to purchase together one beautiful afternoon, as well as a little purple watering can just the right size for a young girl, and for less than $2.00 for the watering can we were in business. This also serves as a great opportunity for her to work on using both hands together, with some hand over hand help from mom, (she also loved the sound of the water coming out of the spout on the can.) we managed to get the watering done, and some therapy in for Meggie.
One of the neat parts of having Meggie involved in caring for the flowers was she really got excited when I would tell her we were going to do the watering, who would have known this would create so much excitement for her. So, we watered, and we watered,.... and watched the flower get nice and full, and colorful,... they are beautiful! The next day I let Meggie know we would not have to water the flowers, because God sent rain to water the flowers, this day God was taking a turn to water, Meggie just smiled and responded with a yah, when I told her. The experience has been fun and rewarding for Meggie, and being able to teach her about what the plants need to grow, water, sunshine, etc has been fun for me also. Combining learning, fun, therapy and chores can be accomplished with a little assistance for our children with special needs, they like to feel useful and needed too. The question I have now is what will be the next unit study she loves as much as this one?
The amazing thing was how attentive Meggie was, she really was looking at those flowers, they can be very captivating , and she really seems to take ownership of this little chore. I am so glad when we find things that grab her interest, and hold her attention for longer and longer periods of time. This shows me she is growing and maturing also, she needs things to provide that opportunity for her just like the plants need the sunshine and water. Maybe next year she will graduate from a watering can to a hose with a sprayer handle, so she can learn another way to water and having to press the handle to get the water to spray will also provide another form of learning and therapy in using her hands. Though Meggie needs a great deal of assistance, with these tasks, we never stop striving for the goal. In the beginning getting use to the feel of the handle on her watering can and having to tip it was a foreign experience to Meggie she really started to enjoy it and had some fun with it, there was a lot of big smiles and laughter once she got the hang of things.
Even the dog had to watch all the fun!
One last check over the flowers making sure to give them enough water, Meggie takes a good look at our flowers again paying much attention to her new task. The new unit study if a great success and fun was had by all. Something involving water may have to be the next project especially to take advantage of these nice summer days, and the therapeutic aspect of working with water, I am loving it myself.
This project can go on for awhile yet, as long as the flowers last, and I have to say that I was really proud of
how Meggie did and we can continue to work on grasping that water can handle and tipping the can. The sound of the water coming out seems to intrigue her enough to keep this going for a while. The fact that she seems to do better with this two handed activity than with holding her own spoon or a cup has given me new hope for working on these goals that should be done with two hands and central. From a visual stand point some of these things can be difficult to accomplish, never give up, they will progress in their own time. If I have learned anything it is not to compare Meggie to any other child's timeline, she has her own schedule, and her agenda maybe very different that everyone Else's. Finding the things that interest Meggie seem to be a key part of getting her to move forward, and not to be ignored or taken lightly.
Good job Meggie!!!
The days work is done, and more watering will be needed later. Thank goodness the weeds are gone now, everything is starting to look great!
Summer may only last for a short time outdoors, but the Heavenly warmth we feel in our hearts from the Son's reflection will linger on and on.
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ Soaking in the joy of Summer!
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ Soaking in the joy of Summer!
Tuesday, May 10, 2011
Why Blog
This post I am sharing, captures a great reason for blogging, not because we are perfect, or because we are the only experts out there on any given subject, but rather to help people to live intentionally. Enjoy!!!
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To Love Honor and Vacuum
Why I Blog: Live Deliberately
Posted: 09 May 2011 05:31 AM PDT
Tons of blogs vie for your attention. You can find blogs on organizing, cooking, cleaning, parenting, getting close to God, renewing your marriage, and so many more.
So why do you read this one?
Over the weekend I began to think more about why I write, and what the main message is that I'm trying to convey. After all, I don't just want to write so that I entertain you, or so that you all boost my traffic numbers. I want to write to challenge you--and at the same time to challenge myself, because through blogging and writing I often clarify my own goals and thoughts
To finish this article, or find more of this authors posts go to www.tolovehonorandvacuum.com
--------------------------------------------------------------------------------
To Love Honor and Vacuum
Why I Blog: Live Deliberately
Posted: 09 May 2011 05:31 AM PDT
Tons of blogs vie for your attention. You can find blogs on organizing, cooking, cleaning, parenting, getting close to God, renewing your marriage, and so many more.
So why do you read this one?
Over the weekend I began to think more about why I write, and what the main message is that I'm trying to convey. After all, I don't just want to write so that I entertain you, or so that you all boost my traffic numbers. I want to write to challenge you--and at the same time to challenge myself, because through blogging and writing I often clarify my own goals and thoughts
To finish this article, or find more of this authors posts go to www.tolovehonorandvacuum.com
Sunday, April 24, 2011
A Time to Reflect
Just to share a few of the things I have been reading and reflecting on this week. (Read with caution, this may have an affect your heart).
ETERNAL - Jesus said to her, “I am the resurrection and the life. He who believes in me will live even though he dies; and whoever lives and believes in me will never die. Do you believe this?”
John 11:25-26
Acts 1:3
SALVATION – It heals, it rescues, it delivers…..
The source: Jesus Christ he is called~ Savior
The process-
His coming to earth
His death on the cross
The shedding of his blood
His resurrection from the dead
His ascension into Heaven
Salvation is a gift from God…….
A gift of his love, grace, and his mercy.
What is required of us?
Believing in Jesus Christ
Repent of our sins
Be ready to accept the free gift of salvation …..
Our relationship to God’s salvation is this…
---We long for it, wail for it, hope for it
& Pray for it.
Salvation ~ we must realize it is now!
We count its cost, we are clothed with it….
We rejoice and delight in it
We make it known
We proclaim it
We grow in it
Salvation = We work it out
Truth --- Come to know it
Seek it~ choose it~ buy it~ believe it~ love it~ walk in it~ live by it
~ obey it~ worship in it~ speak it.
Truth will…
Protect
Guide
Sanctify
Purify……Truth will set you Free
..…Jesus said, “If you hold to my teaching, you are really my disciples. Then you will know the truth and the truth will set you free.
John 8:31-32
EYE ~~ 1 Corinthians 2:9 Says: However as it is written: No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him.
Resurrection – Gives us a living hope and victory over death. There were over 500 eye witnesses who saw Jesus after he rose from the grave.
Jesus answered “I am the way, the truth and the life. No man comes to the Father except through me.” John 14:6
Happy Easter
ETERNAL - Jesus said to her, “I am the resurrection and the life. He who believes in me will live even though he dies; and whoever lives and believes in me will never die. Do you believe this?”
John 11:25-26
ALIVE - After his suffering, he showed himself to these men and gave many convincing proofs that he was alive. He appeared to them over a period of forty days and spoke about the kingdom of God.
Acts 1:3
SALVATION – It heals, it rescues, it delivers…..
The source: Jesus Christ he is called~ Savior
The process-
His coming to earth
His death on the cross
The shedding of his blood
His resurrection from the dead
His ascension into Heaven
Salvation is a gift from God…….
A gift of his love, grace, and his mercy.
What is required of us?
Reading the scriptures
Believing in Jesus Christ
Repent of our sins
Be ready to accept the free gift of salvation …..
And in response we give our all.
Our relationship to God’s salvation is this…
---We long for it, wail for it, hope for it
& Pray for it.
Salvation ~ we must realize it is now!
We count its cost, we are clothed with it….
We rejoice and delight in it
We make it known
We proclaim it
We grow in it
Salvation = We work it out
Truth --- Come to know it
Seek it~ choose it~ buy it~ believe it~ love it~ walk in it~ live by it
~ obey it~ worship in it~ speak it.
Truth will…
Protect
Guide
Sanctify
Purify……Truth will set you Free
..…Jesus said, “If you hold to my teaching, you are really my disciples. Then you will know the truth and the truth will set you free.
John 8:31-32
EYE ~~ 1 Corinthians 2:9 Says: However as it is written: No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him.
Resurrection – Gives us a living hope and victory over death. There were over 500 eye witnesses who saw Jesus after he rose from the grave.
Jesus answered “I am the way, the truth and the life. No man comes to the Father except through me.” John 14:6
Happy Easter
Saturday, April 9, 2011
Capstone Projects
While having coffee with a good friend today, she was sharing with me how her daughter was working on her capstone project for high school. I thought this would be a great time to share my first experience with capstone projects.
About 5 years ago I was introduced to what capstone projects are by my niece. I thought I would share what she wrote about and what she had learned in the hours and weeks she spent on studying, observing, actually coming along to our daughter's appointments with her specialists, presenting her case to a mock jury, and having an evening where all the students in her class had all their information pertaining to their projects on display in the high school gym. ~ ~ ~ ~ ~ My family felt honored to have her choose Meggie to take part in her project.
In a world that struggles with where to stand when it comes to life, we need to ere on the side of caution... we are not the creator of life, rather the designated caregivers of the lives entrusted to us. We will all be held accountable for life in the end; therefore make it your (greatest) life's goal to uphold life with the utmost respect.
~ Wendy Eckwielen
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"I feel that the greatest destroyer of peace today is abortion, because it is a war against the child, a direct killing of the innocent child, murdered by the mother herself."
--Mother Teresa
2/3/06
Capstone Project
Alison J.
My dear cousin Meggie was born on the sixteenth of November. At birth she had many brain complications. Before she was born the doctors had suggested abortion. They told my aunt and uncle that Meggie would have disabilities, not knowing how may and how severe, and that it may be a good idea just to abort her, however my aunt never considered it for a second. Once she was born I remember visiting Meggie at one time in Children's Hospital in Milwaukee and seeing her laying in her crib with all sorts of tubes and monitors,(she was sick with meningitis). I had visited many newborn cousins in the hospital but never had they been in such serious condition as Meggie. And even though my aunt and uncle had so much to be sad and anxious about they never complained yet instead praised God for their beautiful new daughter, Meggie, and trusted in Him. My aunt and uncle, have been and continue to be an incredible witness to me. They've shown me that even though Meggie is very different from other children, and even their other children, she is a gift and blessing of God.
In the world of obstetrics life and its value truly in in the eye of the beholder. One family given a beautiful healthy child may deem it a mistake, and terminate it whereas another family, given a child with special needs, anticipates his/her coming and loves them unconditionally. In my personal experience this family was my aunt and uncle. My cousin Meggie was born with many debilitation's, one being Septal Optic Dysplagia Optic Nerve Hypoplasia (SOD ONH), congenital absence of the corpus callosum and hydrocephalus, a build up of fluid in the brain ventricles. Along with these main characteristics Meggie has a pituitary deficiency and epilepsy.
There are many different attempts made to characterize this disease however there are so many manifestations and levels of severity. Two children may both be born with SOD however their disabilities may be very different. It all depends on when the abnormal development occurs. As with many brain disorders, SOD is considered a syndrome and not a discrete diagnosis. No distinct cause of the disease can be identified leaving doctors with possible causes. The most recent evidence suggests that most cases occurred from an intrauterine event and not a genetic defect. These two areas are both being studied, environmental factors and genetic inheritance. At present there is no cure for SOD ONH. The treatment is now all purely symptomatic. Meggie's disabilities can be treated but will never be cured. Had she not been born to loving and caring parents such as my aunt and uncle, Meggie could have became another statistic of abortion.
In the battle between pro-life and pro-choice Christians are waging war everyday yet in our present world Christians seem to be on the losing side. Anyone from teenage prostitutes to wealthy businesswoman is terminating the lives of their "illegitimate" or unwanted children because they simply did not have it in their plan. Mother Teresa quoted, "It is a poverty to decide that a child must die so that you live as you wish". Mother Teresa could not have said it better. Abortion puts the rights and needs of the mothers and fathers significantly above the child's with out even considering it's right to life. As quoted above abortion could be considered one of "The greatest destroyers of peace" in its act of terminating lives of children that are miracles of God because they have special needs. These kids are just as it says, special. They have something to offer us that no other child can but some choose to simply get rid of them. As a Christian entering the medical field I know I will constantly be facing tough questions of ethics and will need to prepare myself for how I will deal with them. By taking on this issue I will better prepare myself to deal with situations, from the point of God's word.
Throughout my research I spent time with many sorts of individuals getting a real world feel for what it is like to have and care for a child with special needs and how they feel about abortion of them. Although some answers I received were shocking, they certainly reflect the overall American lack of value for life. In this project I hope to open the eyes of parents and teenagers alike to see what it is like to have a child with special needs but most importantly I will show how children like my cousin Meggie are a blessing and miracle from God, not despite their disabilities, but because of them.
Approximately 1,370,000 abortions occur annually in the U.S. and 43% of women in the U.S. will have had at least on abortion by the time they are 45 years old (as cited by Melody Drnach, 2006). In the country where freedom reigns and all are given the right to "life liberty and the pursuit of happiness" millions of babies are being murdered every year, every day, every hour. But not only are we aborting healthy babies but it has become socially unacceptable to not abort your child if it has been diagnosed with "special needs". Doctors and researchers alike are pushing more and more for testing of babies before they are born. Recently a report in MSN Health and Fitness there are new tests using amniotic fluid and maternal blood to detect genetic problems without becoming too invasive. "Their ultimate goal was a method of separation out fetal DNA and then pinpointing specific mutations." (Gordon, 2006) Another test is the Alpha Fetal Protein test. This tests the maternal blood at five months of pregnancy and is Solly for the purpose of determining if the baby has downs syndrome or spina bifida. Now that doctors have these two types of tests they are more readily able to abort special needs children more efficiently. The adoption network put it this way, "Where are all the handicapped babies here in the states?" The answer is in Heaven. No, they are not waiting to come to earth as unborn children, but murdered in the womb." In 2000 1.3 million American women obtained abortions, producing a rate of 21.3 abortions per 1,000 women of reproductive age. (Guttmacher Institute, 2000) Teen pregnancy and promiscuity of our country has hit an all time high. Approximately 822,000 pregnancies occurred with women between the ages of 15 and 19 in the year 2000. (Guttmacher Institute) Put this in combination with the drug and alcohol abuse and one finds many "oops" babies that serve as a huge percentage of the babies aborted. However the women at highest risk for resorting to abortion are those of college age. Many college counselors and professors tell the women that pregnancy alters their thinking, reading, and ability to write. Some colleges even offer $300.00 loans for abortions however there is no financial aid offered for young women who give birth. (Foster, 2002)
These statistics reflect the actions of the county as a whole, yet I see this type of attitude with those I come into contact with day to day. A co-worker of mine had one normal baby and then gave birth to a baby with a similar condition to Meggie. The baby lived for about five months and then passed away. After being genetically tested it was found that her and her husband both had the recessive gene for that diseases and had a five percent chance of having a normal baby. She said they took the risk and got pregnant again but if the baby was severely impaired she would, beyond a doubt, have aborted the baby because it did not deserve to live. My question to her was who are you to determine whether or not it deserved to live? She had no response.
To get a real world feel for what it is like to have a child like Meggie, I tagged along with her to a doctor appointment at the geneticist and professor, Dr. B. When asked about how he felt of abortion of children such as Meggie he responded as follows, "With respect to abortion I feel very strongly that physicians should not decide this for patients". Each family has the right to decide for themselves what is right. Each family and each problem in a fetus is different, some are severe problems and some are mild. It is the responsibility of the physician to provide all that is known about the fetal abnormalities to the family and to support that family's decision with respect to pregnancy termination. It is wrong for a doctor, government or you neighbor to decide what is best for you and your family. Although he was not wildly pro-choice he still does not condemn the act of abortion. His quote shows the way expecting mothers could be influenced by their doctors.
So how does all this happen? What is the root of the problem causing so many mothers to deem their children "no good?" Although abortion is a current affair it has been an issue for quite some time. Looking back, Aristotle, in politics, reflected the acceptance of abortion in ancient Greek society: "...When couples have children in excess, let abortion be procured before sense and life have begun." In On the Soul, he distinguished between a) the nutritive/vegetative soul, characteristic of plants, b) the sensitive soul, which many animals have, and c) the intellectual/rational soul, which human beings have (alone among the animals, in his view). He believed that the human embryo/fetus first develops a)the b), the c). Aristotle's views were later cited by many Christian writers, notably Thomas Aquinas (Politics, book V"II, ch.16)
From roughly 1865 to 1960, many American states enacted legal restrictions on abortion. During the 1960s, about a third of the states liberalized their laws and now in 25 states as recently as 1972, abortion was only permitted when necessary to preserve the mother's life. (Rosenfield and Kunins 130ff.) Worldwide, in India abortion is permitted in cases of rape, danger to the mother or in cases of mental deformity. They say they abort them in order to have "compassion for the child's physical or mental suffering," thereby determining the value of that child's life. (Perry 2000, pg 6)
Serrin M Foster, author of "Women Deserve Better than Abortion" says that statistics show primary reasons that women with unintended pregnancies turn to abortion are lacking of financial resources and of emotional support. (Foster, 2006, pg1) According to former Surgeon General, Dr. C. Everett Koop the most common reason for abortion is convenience. Only three to five percent of all abortions performed are for reasons of rape, incest, the possibility of a deformed child, or severe threat to the life of the mother. (Cole, 2004)
A nation wide poll done in Germany gave the following results: We asked for the cause of their unwanted pregnancy some said "not being careful" (28%), oral contraceptives pause (11.1%) unprotected intercourse (10.6%), irregular use of the pill (5.8%), intolerance of the pill (2.9%) and pill failures (2.4%). But when asked what the reasons were for ending the pregnancy they said not wanting any more children (35.3), incomplete professional training (31.9%) or crowded living conditions (11.6%); health and age were cited by only 12.5%. The people polling came to the conclusion that "emphasizing the importance of contraceptives and family planning" should be a plausible solution. (Zentralbl Gynakol, Pub Med, 1997).
Pastor Steve Cole gave three points as to why abortion is biblically wrong. First he says human life is unique to God because we were created in his image. In Genesis 1:26, God distinguished humans from the rest of the animal creation. Only of man did God say, "Let us make man in Our image, according to Our likeness." Second the Bible clearly forbids the shedding of innocent blood. The Bible clearly commands, "You shall not murder" (Exod. 20:13). Finally prenatal human life is fully human and thus precious to God. As it says in Psalm 139:13-16, "For you created me in my inmost being: you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made: your works are wonderful I know that full well."
So one may ask now, is there really any solution to this issue? Can we really make a worthwhile effort against abortion of special needs children or of any children? Yes we can make an effort. There will never be a complete solution to this issue but there are small individual things we can do to slowly yet surely minimize abortion.
First there is continual research being done on diseases like Meggie's that bring their condition to light. These researchers dedicate their careers to children just like Meggie to make their lives better and to give them a brighter hope. Doctors like Dr. K., Meggie's neurologist, is one of the doctors giving Meggie hope. Not only do the doctors give Meggie hope and a brighter future but they help parents see the awesome value in a life such as Meggie. When these men devote their professional careers and dedicate such care and compassion, their patients as well as all observers, such as myself, and see and appreciate the importance of these children. I tagged along with Wendy and Meggie to this appointment and met Dr. K., He was incredibly kind and caring with Meggie and displayed the exact attitude mentioned above. You could tell he genuinely cared for his patients - a true inspiration for all pursuing medical careers. When asked how he felt about abortion of children such as Meggie he said that Meggie is a beautiful blessing of a daughter and that his life would not have been the same had Wendy and Brad aborted her. Dr. K. never said he was anti-abortion but he showed a very loving and gentle spirit of compassion for his special needs patients.
Second there is always the option of adoption. Christian organizations such as Bethany Christian Services "Manifest the love and compassion of Jesus Christ by protecting and enhancing the lives of children and families through quality social services." (site) When I contacted the supervisor of the Wisconsin branch, Georgia Mixdorf, about adoption of specifically special needs children she replied, "I can tell you that Bethany finds homes for any child with special needs. We have placed babies with spina bifida, hydrocephalus, Downs Syndrome, those exposed prenatally to drugs and /or alcohol, and extremely premature babies... In my 20 years at Bethany, we have never turned any baby away. Some women have come to us requesting adoption for their baby because tests have been wrong, and those babies have been healthy. Some have special needs such as cleft lip... I can confidently say that there are adoptive homes for any baby regardless of the disability. So a woman who does not feel she can care for her expectant child because of the child's special needs has the option of placing her child for adoption instead of having an abortion." It is Christian organizations such as Bethany that are putting out a Christian witness.
Finally, a great solution to the act of abortion of special needs children is to meet these children face to face. Meet them and fall in love with their personalities that are incredible gifts of God. Daniel Allott was a man that had such an encounter. While in college Daniel got a chance to work with a man named Rick. Rick was a severely retarded man who had been deaf, speechless, and confined to a wheelchair since birth. Daniel was able to spend one year with Rick and within this year Daniel said "Rick taught me some important life lessons. He showed me the meaning of genuine, mature, and self-giving love. He taught me what it means to be human." Daniel mentioned that Rick was constantly filled with this warmth and compassion that attracted all those around him, to himself. Daniel made an important observation about the disabled, that "We must celebrate their lives with them, not look upon them with sad eyes, but let them know they are a source of joy to others." Instead of looking upon the disabled with judging and unloving hearts we should try to meet, spend time with, and love the disabled for in time they may "help us discover our common humanity, liberate us from self-centered, disordered notions of love and begin the process of truly becoming human." (Daniel Allott, Valuing the Vulnerable, 2005)
I am pleased to say my niece went on to college to become a nurse, she is a wonderful compassionate person and any patient would be very fortunate to be in her care.
About 5 years ago I was introduced to what capstone projects are by my niece. I thought I would share what she wrote about and what she had learned in the hours and weeks she spent on studying, observing, actually coming along to our daughter's appointments with her specialists, presenting her case to a mock jury, and having an evening where all the students in her class had all their information pertaining to their projects on display in the high school gym. ~ ~ ~ ~ ~ My family felt honored to have her choose Meggie to take part in her project.
In a world that struggles with where to stand when it comes to life, we need to ere on the side of caution... we are not the creator of life, rather the designated caregivers of the lives entrusted to us. We will all be held accountable for life in the end; therefore make it your (greatest) life's goal to uphold life with the utmost respect.
~ Wendy Eckwielen
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"I feel that the greatest destroyer of peace today is abortion, because it is a war against the child, a direct killing of the innocent child, murdered by the mother herself."
--Mother Teresa
2/3/06
Capstone Project
Alison J.
My dear cousin Meggie was born on the sixteenth of November. At birth she had many brain complications. Before she was born the doctors had suggested abortion. They told my aunt and uncle that Meggie would have disabilities, not knowing how may and how severe, and that it may be a good idea just to abort her, however my aunt never considered it for a second. Once she was born I remember visiting Meggie at one time in Children's Hospital in Milwaukee and seeing her laying in her crib with all sorts of tubes and monitors,(she was sick with meningitis). I had visited many newborn cousins in the hospital but never had they been in such serious condition as Meggie. And even though my aunt and uncle had so much to be sad and anxious about they never complained yet instead praised God for their beautiful new daughter, Meggie, and trusted in Him. My aunt and uncle, have been and continue to be an incredible witness to me. They've shown me that even though Meggie is very different from other children, and even their other children, she is a gift and blessing of God.
In the world of obstetrics life and its value truly in in the eye of the beholder. One family given a beautiful healthy child may deem it a mistake, and terminate it whereas another family, given a child with special needs, anticipates his/her coming and loves them unconditionally. In my personal experience this family was my aunt and uncle. My cousin Meggie was born with many debilitation's, one being Septal Optic Dysplagia Optic Nerve Hypoplasia (SOD ONH), congenital absence of the corpus callosum and hydrocephalus, a build up of fluid in the brain ventricles. Along with these main characteristics Meggie has a pituitary deficiency and epilepsy.
There are many different attempts made to characterize this disease however there are so many manifestations and levels of severity. Two children may both be born with SOD however their disabilities may be very different. It all depends on when the abnormal development occurs. As with many brain disorders, SOD is considered a syndrome and not a discrete diagnosis. No distinct cause of the disease can be identified leaving doctors with possible causes. The most recent evidence suggests that most cases occurred from an intrauterine event and not a genetic defect. These two areas are both being studied, environmental factors and genetic inheritance. At present there is no cure for SOD ONH. The treatment is now all purely symptomatic. Meggie's disabilities can be treated but will never be cured. Had she not been born to loving and caring parents such as my aunt and uncle, Meggie could have became another statistic of abortion.
In the battle between pro-life and pro-choice Christians are waging war everyday yet in our present world Christians seem to be on the losing side. Anyone from teenage prostitutes to wealthy businesswoman is terminating the lives of their "illegitimate" or unwanted children because they simply did not have it in their plan. Mother Teresa quoted, "It is a poverty to decide that a child must die so that you live as you wish". Mother Teresa could not have said it better. Abortion puts the rights and needs of the mothers and fathers significantly above the child's with out even considering it's right to life. As quoted above abortion could be considered one of "The greatest destroyers of peace" in its act of terminating lives of children that are miracles of God because they have special needs. These kids are just as it says, special. They have something to offer us that no other child can but some choose to simply get rid of them. As a Christian entering the medical field I know I will constantly be facing tough questions of ethics and will need to prepare myself for how I will deal with them. By taking on this issue I will better prepare myself to deal with situations, from the point of God's word.
Throughout my research I spent time with many sorts of individuals getting a real world feel for what it is like to have and care for a child with special needs and how they feel about abortion of them. Although some answers I received were shocking, they certainly reflect the overall American lack of value for life. In this project I hope to open the eyes of parents and teenagers alike to see what it is like to have a child with special needs but most importantly I will show how children like my cousin Meggie are a blessing and miracle from God, not despite their disabilities, but because of them.
Approximately 1,370,000 abortions occur annually in the U.S. and 43% of women in the U.S. will have had at least on abortion by the time they are 45 years old (as cited by Melody Drnach, 2006). In the country where freedom reigns and all are given the right to "life liberty and the pursuit of happiness" millions of babies are being murdered every year, every day, every hour. But not only are we aborting healthy babies but it has become socially unacceptable to not abort your child if it has been diagnosed with "special needs". Doctors and researchers alike are pushing more and more for testing of babies before they are born. Recently a report in MSN Health and Fitness there are new tests using amniotic fluid and maternal blood to detect genetic problems without becoming too invasive. "Their ultimate goal was a method of separation out fetal DNA and then pinpointing specific mutations." (Gordon, 2006) Another test is the Alpha Fetal Protein test. This tests the maternal blood at five months of pregnancy and is Solly for the purpose of determining if the baby has downs syndrome or spina bifida. Now that doctors have these two types of tests they are more readily able to abort special needs children more efficiently. The adoption network put it this way, "Where are all the handicapped babies here in the states?" The answer is in Heaven. No, they are not waiting to come to earth as unborn children, but murdered in the womb." In 2000 1.3 million American women obtained abortions, producing a rate of 21.3 abortions per 1,000 women of reproductive age. (Guttmacher Institute, 2000) Teen pregnancy and promiscuity of our country has hit an all time high. Approximately 822,000 pregnancies occurred with women between the ages of 15 and 19 in the year 2000. (Guttmacher Institute) Put this in combination with the drug and alcohol abuse and one finds many "oops" babies that serve as a huge percentage of the babies aborted. However the women at highest risk for resorting to abortion are those of college age. Many college counselors and professors tell the women that pregnancy alters their thinking, reading, and ability to write. Some colleges even offer $300.00 loans for abortions however there is no financial aid offered for young women who give birth. (Foster, 2002)
These statistics reflect the actions of the county as a whole, yet I see this type of attitude with those I come into contact with day to day. A co-worker of mine had one normal baby and then gave birth to a baby with a similar condition to Meggie. The baby lived for about five months and then passed away. After being genetically tested it was found that her and her husband both had the recessive gene for that diseases and had a five percent chance of having a normal baby. She said they took the risk and got pregnant again but if the baby was severely impaired she would, beyond a doubt, have aborted the baby because it did not deserve to live. My question to her was who are you to determine whether or not it deserved to live? She had no response.
To get a real world feel for what it is like to have a child like Meggie, I tagged along with her to a doctor appointment at the geneticist and professor, Dr. B. When asked about how he felt of abortion of children such as Meggie he responded as follows, "With respect to abortion I feel very strongly that physicians should not decide this for patients". Each family has the right to decide for themselves what is right. Each family and each problem in a fetus is different, some are severe problems and some are mild. It is the responsibility of the physician to provide all that is known about the fetal abnormalities to the family and to support that family's decision with respect to pregnancy termination. It is wrong for a doctor, government or you neighbor to decide what is best for you and your family. Although he was not wildly pro-choice he still does not condemn the act of abortion. His quote shows the way expecting mothers could be influenced by their doctors.
So how does all this happen? What is the root of the problem causing so many mothers to deem their children "no good?" Although abortion is a current affair it has been an issue for quite some time. Looking back, Aristotle, in politics, reflected the acceptance of abortion in ancient Greek society: "...When couples have children in excess, let abortion be procured before sense and life have begun." In On the Soul, he distinguished between a) the nutritive/vegetative soul, characteristic of plants, b) the sensitive soul, which many animals have, and c) the intellectual/rational soul, which human beings have (alone among the animals, in his view). He believed that the human embryo/fetus first develops a)the b), the c). Aristotle's views were later cited by many Christian writers, notably Thomas Aquinas (Politics, book V"II, ch.16)
From roughly 1865 to 1960, many American states enacted legal restrictions on abortion. During the 1960s, about a third of the states liberalized their laws and now in 25 states as recently as 1972, abortion was only permitted when necessary to preserve the mother's life. (Rosenfield and Kunins 130ff.) Worldwide, in India abortion is permitted in cases of rape, danger to the mother or in cases of mental deformity. They say they abort them in order to have "compassion for the child's physical or mental suffering," thereby determining the value of that child's life. (Perry 2000, pg 6)
Serrin M Foster, author of "Women Deserve Better than Abortion" says that statistics show primary reasons that women with unintended pregnancies turn to abortion are lacking of financial resources and of emotional support. (Foster, 2006, pg1) According to former Surgeon General, Dr. C. Everett Koop the most common reason for abortion is convenience. Only three to five percent of all abortions performed are for reasons of rape, incest, the possibility of a deformed child, or severe threat to the life of the mother. (Cole, 2004)
A nation wide poll done in Germany gave the following results: We asked for the cause of their unwanted pregnancy some said "not being careful" (28%), oral contraceptives pause (11.1%) unprotected intercourse (10.6%), irregular use of the pill (5.8%), intolerance of the pill (2.9%) and pill failures (2.4%). But when asked what the reasons were for ending the pregnancy they said not wanting any more children (35.3), incomplete professional training (31.9%) or crowded living conditions (11.6%); health and age were cited by only 12.5%. The people polling came to the conclusion that "emphasizing the importance of contraceptives and family planning" should be a plausible solution. (Zentralbl Gynakol, Pub Med, 1997).
Pastor Steve Cole gave three points as to why abortion is biblically wrong. First he says human life is unique to God because we were created in his image. In Genesis 1:26, God distinguished humans from the rest of the animal creation. Only of man did God say, "Let us make man in Our image, according to Our likeness." Second the Bible clearly forbids the shedding of innocent blood. The Bible clearly commands, "You shall not murder" (Exod. 20:13). Finally prenatal human life is fully human and thus precious to God. As it says in Psalm 139:13-16, "For you created me in my inmost being: you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made: your works are wonderful I know that full well."
So one may ask now, is there really any solution to this issue? Can we really make a worthwhile effort against abortion of special needs children or of any children? Yes we can make an effort. There will never be a complete solution to this issue but there are small individual things we can do to slowly yet surely minimize abortion.
First there is continual research being done on diseases like Meggie's that bring their condition to light. These researchers dedicate their careers to children just like Meggie to make their lives better and to give them a brighter hope. Doctors like Dr. K., Meggie's neurologist, is one of the doctors giving Meggie hope. Not only do the doctors give Meggie hope and a brighter future but they help parents see the awesome value in a life such as Meggie. When these men devote their professional careers and dedicate such care and compassion, their patients as well as all observers, such as myself, and see and appreciate the importance of these children. I tagged along with Wendy and Meggie to this appointment and met Dr. K., He was incredibly kind and caring with Meggie and displayed the exact attitude mentioned above. You could tell he genuinely cared for his patients - a true inspiration for all pursuing medical careers. When asked how he felt about abortion of children such as Meggie he said that Meggie is a beautiful blessing of a daughter and that his life would not have been the same had Wendy and Brad aborted her. Dr. K. never said he was anti-abortion but he showed a very loving and gentle spirit of compassion for his special needs patients.
Second there is always the option of adoption. Christian organizations such as Bethany Christian Services "Manifest the love and compassion of Jesus Christ by protecting and enhancing the lives of children and families through quality social services." (site) When I contacted the supervisor of the Wisconsin branch, Georgia Mixdorf, about adoption of specifically special needs children she replied, "I can tell you that Bethany finds homes for any child with special needs. We have placed babies with spina bifida, hydrocephalus, Downs Syndrome, those exposed prenatally to drugs and /or alcohol, and extremely premature babies... In my 20 years at Bethany, we have never turned any baby away. Some women have come to us requesting adoption for their baby because tests have been wrong, and those babies have been healthy. Some have special needs such as cleft lip... I can confidently say that there are adoptive homes for any baby regardless of the disability. So a woman who does not feel she can care for her expectant child because of the child's special needs has the option of placing her child for adoption instead of having an abortion." It is Christian organizations such as Bethany that are putting out a Christian witness.
Finally, a great solution to the act of abortion of special needs children is to meet these children face to face. Meet them and fall in love with their personalities that are incredible gifts of God. Daniel Allott was a man that had such an encounter. While in college Daniel got a chance to work with a man named Rick. Rick was a severely retarded man who had been deaf, speechless, and confined to a wheelchair since birth. Daniel was able to spend one year with Rick and within this year Daniel said "Rick taught me some important life lessons. He showed me the meaning of genuine, mature, and self-giving love. He taught me what it means to be human." Daniel mentioned that Rick was constantly filled with this warmth and compassion that attracted all those around him, to himself. Daniel made an important observation about the disabled, that "We must celebrate their lives with them, not look upon them with sad eyes, but let them know they are a source of joy to others." Instead of looking upon the disabled with judging and unloving hearts we should try to meet, spend time with, and love the disabled for in time they may "help us discover our common humanity, liberate us from self-centered, disordered notions of love and begin the process of truly becoming human." (Daniel Allott, Valuing the Vulnerable, 2005)
I am pleased to say my niece went on to college to become a nurse, she is a wonderful compassionate person and any patient would be very fortunate to be in her care.
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