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.

Birthdays, Parenting and Memories

This is a very last minute post, but I had a few things on my mind, about kids birthdays, parenting, and making memories together. So here it goes... Today I was just thinking of how fast my children are growing and some of the pictures on my blog are not all updated, my oldest so nicely pointed that out to me last time I wrote. So since they have all turned another year older, I thought I would share some of the celebration with you, they are all 10 and above now, double digits, where has the time gone? Though the birthdays have come on gone, I am still celebrating this time we still have them at home. Our minds (my husband and I that is) try to wrap around the thought of a home with just the two of us, (and Meggie of course) and I have to say, that's not always an easy thought. Parenting is so a part of us, it's very difficult imagining it any other way. Not saying that we will not be their parents when they are out on their own, but it will just change the dynamics a bit. From the time our children were born, we knew we would be preparing them every step of the way, through all the stages and ages they pass through, I have to say we enjoyed each stage, and never felt anxious at those time.

Now jumping ahead to the present, it's not an anxiousness I feel, rather the goals we have made as parents in the raising of our children; such as knowing how to care for a household, single, married, children, whatever the case maybe. Being financially responsible, making good sound decisions, being a good employee or employer, being able to pick the right spouse, job, education, church, friends, and on and on. I am reviewing in my mind what is it we need to equip our children with, so when they leave home, they are physically, mentally, emotionally and spiritually prepared to handle life on their own. We are so blessed as parents to have this opportunity to raise our children in a way that they will be outstanding individuals, who will have a great (eternal)impact on society. There is truly a sense of accomplishment, and joy to see your children putting into practice some of the values, morals, and responsibilities you have worked on repeatedly over the years.

I truly want to be able to look back when my husband and I get older and know that parenting was the most important job we did while our children were growing up. It will be rewarding to both of us and most of all it will be a reflection of our love for our children and for our Heavenly Father. My life has been filled with good examples of parents/grandparents, and what parenting should look like.

Looking back at the wonderful memories I have of my grandparents, the unconditional love they had for us grandchildren, was amazing. I was fortunate enough to have a good relationship with my grandparents, as well as my parents, which just reinforced the morals,values, responsibilities, and spiritually training that equipped me to be the parent I need to be. Notice I did not mention in any way shape or form perfect parenting, it makes me feel uncomfortable when people even mention (or insinuate) me and the word perfect in the same sentence, I am just showing my gratitude for my up bring. I know my husband and I will feel honored if our children feel this same way as they grow up.






Homemade cake and (my aunt's) almond frosting are the greatest!


Now when we are celebrating birthdays, we fully enjoyed each one, appreciating them for the special individuals they are to us; the food was great, we usually let them choose the meal; the cake was yummy! The gifts were fun (and within budget), and the time together was priceless! The smiles on the kids faces and the laughter we shared will leave long lasting memories hopefully for all of us. We took several pictures, and I will share a few, I also attempted to make my first slide show in honor of Meggie's 10th birthday, that was quite fun I must say. As other important birthdays and events arise, I hope to have special plans to make even more special memories for the kids that they can look back on, always remembering what made it so great is we did these things together.







Celebrating my oldest daughter's birthday was so fun, though it really gets us thinking of how fast the time is going. We usually sit around and spend some time reminiscing their childhood days, maybe watch an old video of the kids and we almost always end up laughing. The memories we have made will linger for a long time to come.







By the time my son's birthday rolled around, we had some mild illnesses going on in the family, but enough to postpone the celebrating for his big day. It was a good thing he was not sick and could have some fun things planned with friends and have things going on at school. As you can tell, the younger people in the family are very rapidly gaining (height wise) on the older people. Sorry Meggie your height does not come rapidly for you, but your cuteness more than makes up for your height.






The last thing I am going to end with is some lyrics I wrote for Andrea, as I was reflecting how fast the time goes while we are watching our children grow, and thinking about all the hopes and dreams we have for them. It was a goal of mine to have a song for each of them from me.


Rock-a-Bye My Baby


(chorus) Rock-a-bye my baby as you drift to sleep,
with his angels watching you, we'll have some peace.
Daylights coming night will quickly pass....rock-a-bye my baby to sleep.

(v1) We wish that times like these would last and last,
The kids are growing and time is going fast,
I watch you as you go to run and play, may angels watch you day by day.

(v2) Before I know you're going off to school,
The teacher's smiling and the children are too,
Mothers say good-bye, kids say.....mommy don't cry, rock-a-bye my baby with me.

(chorus)

(v3) The school bell rings, and now the day is done,
You've learned great thing and even had some fun,
Across the stage you'll walk in cap and gown, as angels sing and dance around.

(v4) College comes and goes your working now.
You're volunteering in spare time somehow;
Then the phone rings....Dad,....there's this guy...I want you to meet,
rock-a-bye my baby with me.

(chorus)

(v5) Wedding bells are ringing loud and clear,
I see your veil on, smile, and I shed a tear.
Vows are said, and then you kneel to pray,God bless you on your wedding day.

(v6) Sharing time with you is rare, but, precious now,
Memories fill my mind, of your childhood days I recall,
You're having children of your own right now, and singing...
rock-a-bye my baby with me.

(chorus) Rock-a-bye my baby as you drift to sleep,
with his angels watching you, we'll have some peace.
Daylights coming night will quickly pass....
rock-a-bye my baby to sleep.

Patience for the Journey

"There is no road to long to the man who advances deliberately and without undue haste; there are no honors too distant to the man who prepares himself for them with patience."

~ Jean De La Bruyere









Many of our friends and family will be busy getting ready to pack up over the next two weeks and head out on the long awaited spring break! The children and teens will be off of school, and you and your spouses (for those who are married) are more than ready for some time off and maybe even some warmer weather. You know how long you and your family have been waiting and planning and working for this time; and now it's here, aah.... yes, that sweet vacation, what a beautiful thing!








Some of you may have been researching your vacation destination for quite sometime, online, through a travel agency, or it maybe a place you go to each year. No matter how you made the decision where to go, it took some planning or preparation on your part to a certain degree.


So for those of you taking a road trip, you get the car packed, everyone is ready, and one last look at the check list to make sure you remembered everything, and with the map in hand, your off . Now we both know you can bring games, movies, food, and many other things to occupy the kids; but, we all know sooner or later it's bound to happen, the questions begin. And you know it's coming, then it's the big question......"Are we there yet?" Oh, we only hope that question does not start to soon into the trip, because depending on their age you know how often the question comes up. So map in hand we may try to show them, or explain to them where we are and where we need to go, before we arrive. It's only our hope, that we get to our destination as planned, and in a timely manner, though you and I both know there's always the chance of running into traffic jams for for various reasons, or maybe even detours, oh dread. This is the time when the question is repeated, right in the middle of the delay, "Are we almost there ?" As you are trying to explain the reason for the unexpected delays, oh no, here comes the next question, "How much longer?" This can be difficult to answer when you have run into some unanticipated bumps in the road, not to mention, things are not going according to the plan. At this point, all you feel you can do is to be as reassuring as possible.






Is this a familiar scenario to any other parents out there? Well, at least we can laugh about it now, as our children get older I hope.




Life's Journey


In the last several weeks I have noticed many situations on the news, in the USA, and in our area, where there are some circumstances where many adult have made plans in their work, or in their family life and for some reason or another, it seems as though there has been a road block, a detour, or a traffic jam so to speak.



"Never think God's delays are God's denials. Hold on; Hold fast; Hold out. Patience is genius."

~ George-Louis Leclerc



I have observed this does not resonate very well with us as adults, it's not just children who get impatient. As adults, we often look at where we were, where we are, and where we are going in life, and if things don't go as planned, it can be a bit frustrating to us. For those of us who pray along the way, we may even ask our Heavenly Father, "Are we there yet?" and if not, "How long before we get there?" hoping we get the answer we are wishing for. Along our journey, we may lack the patience and persistence needed to complete our travels.



The one thing I can tell you is we never stay in the same place forever, situations change, kids grow up, you may change jobs or homes or other things. One thing remains the same the love and the faithfulness the Heavenly Father offers all along the journey, without fail.





The next time you travel with your family, I hope this story comes to mind, as our children ask these questions, let us remember how we as adults still ask these question in our life's journey. My hope is that we can smile next time we answer our children, ......and enjoy the journey!



"Patience is the support of weakness. impatience is the ruin of strength."

~ Charles Caleb Coulton

Helpful Links for SOD ONH

This blog is kind of a continuation of the previous one I did the other day, sorry this maybe alittle boring to some, hang in there with me. I am hoping to suggest some valuable ideas, information, and the links of a couple I have. Starting from the beginning, when our children are still babies, you will want to have the contact names for your local health department, the county where I am in they call it Health and Human Services. They will be able to direct you to a Birth to 3 Program in your county, they will also help you in the area of funding if your child meets the state requirements. Most counties have a Family Support Program, Katie Beckett Program, CLTS Waivers, and some other programs that will help for your baby/child again depending on age and if the meet the eligibility requirements. Make sure you keep informed on these things for the sake of your child, some of these children will need a lifetime of special care and services. We need to advocate for these kiddos!

One valuable contact is CSHCN (Children with Special Health Care Needs), if you google this, you should be able to find the contact for your area (in Wisconsin) they will be able to help you with finding different kinds of information. They also have a whole library of books,etc you can borrow from. Children's Hospital of Wisconsin may also be a good link to have, I believe it is http://www.chw.com/. There is also The Center for the Blind and Visually Impaired, you can google them and find a local contact for your area, they have been beneficial in testing Meggie's vision and making suggestions for how to work on improving her vision. Focus Families has been a good resource on finding out more about ONH / SOD ONH, you can visit their site at http://www.focusfamilies.org/, Dr. Borchart and his staff have studied ONH /SOD ONH over the years, and have many informative articles and studies posted on the site http://www.onesmallvoicefoundation.com/, Family Voices of Wisconsin is a resource you can use to find out about meetings and trainings, as well as if you need an advocate for your child, http://www.fvofwi.org/. ONH Consulting is run by Christopher Sabine, the President and Founder, who was born with ONH himself, and can consult with you or offer his services for IEP meetings, and school related issues, http://www.onhconsulting.com/ . The Child Neurology Foundation is a newer site to me, but very interesting to me, http://www.childneurologfoundation.org/.

There is just another three websites I would like to share that maybe fun (and informative), the first one is Possibility Playground in Port Washington, if you have not been there, this is a must for your children. This all inclusive playground is sure to bring a smile to your children's faces, http://www.posibilityplayground.org/. PALS stands for Parents as Leaders, this is a training group parents of children with special needs children can learn and grow, and become a better advocate for your child, www.waisman.wisc.edu/pals, and the last one is actually the magazine, Exceptional Parent, this is very informative for parents, about multiple topics, http://www.eparent.com/

I hope some of you have found this helpful, together we can learn and help make things better for more families of children with special needs.

Updates, Apologies, and New Families

Dear Friends,



How do I start this post? It has been so looonnnggg since I have been in touch,(my apologies) I would like to start where I left off, but there is some catching up to do. First things first as I always say, once the holidays were over, the schedule looked so good, or so I thought. That past several months have been a time of learning for me (good and bad), the companies we at times put our trust in do not always serve us well. Making a long story short, I have been in a battle with my insurance company, and now I have come to a point of having to investigate how to bring an unpaid claim $$$ back into appeals. I am just saying I wish they would just stand behind what they said they would do, is it to much to ask these people we consider to be professional to be honest? The amount of time trying to work on this has been to much! Ok, you get the point.



It's not only the unexpected interruptions in life, but, even the expected ones that throw us off course now and then. Our Meggie has gone through approximately six weeks of seizures(more of the grand mals as of late), bed wetting, headaches, and just feeling plain fussy or off, not to mention wiped out at times after the seizures. this leaves us with questions again, is she growing? Does she have a UTI? Is she fighting any viruses? Are there any hormones that are off? What changes maybe around the corner, or is it just a round of severe seizures? Well, we did check off the possibility of a UTI with a trip to her pediatrician, later this week we will investigate more at the Endocrinology Dept. at Children's Hospital. There they may check some labs, diabetes screening, cortisol levels, as well as some other hormones, and maybe her IGF1(insulin-like growth factor) and HGH (human growth hormone), for her growth, and maybe a bone density test(to check the strength of her bones).



The seizures have been one issue, and soon it's time for her scoliosis check up, and x-rays, oh and did I mention her asthma check up, these are a few of the up and coming appointments. This is my child who definitely keeps me busy, you would not want to let your mother get board, would you. The appointments and information can become overwhelming at times, but as these children with SOD ONH (Septo Optic Dysplagia Optic Nerve Hypoplagia or ONH) get older believe it or not some of these things become routine for them and us. We all hope to get to this more peaceful routine feel sooner than later, and I can not blame anyone for that.







TO NEW PARENTS AND FAMILIES JUST LEARNING ABOUT SOD ONH or ONH




For any new comers to my blog I will try to discuss more clearly what occurred as far as lab tests, ultra sounds, CTs ect. Because there had been fluid in the ventricles of (Meggie's) brain detected on ultrasound (already at 19wks.), my husband and I were alerted to the fact there was something going on with our unborn baby. At that time I saw a Perineonatologist, who did more extensive ultrasounds, and followed me through the rest of my pregnancy as well as my
OB GYN. One of the best recommendations to me was that we find a Pediatric Neurologist for the baby, and speak to him even before the baby was born. This was recommended by our Family Dr. and that was beneficial to have him on board from the beginning, we have had the same neurologist ever since. Your neurologist will want to do a baseline CT of your child, and then will schedule follow ups as needed. Once we learned what parts of the brain were affected and or missing, we were able to learn more about how this may affect development. If your child experiences seizures, your neurologist may also schedule for them to have an EEG , which is painless, as is the CT.



The other specialists you will need to see will be a Endocrinologist, who will be able to check on the hormone levels your child will needs to have checked on at least a yearly basis, as well as their growth levels, HGH and possibly IGF1, an Opthamalogist will assist you in checking the structure of the eyes and nerves behind the eyes as well as vision testing, this can be hard, especially if your child does not speak. One of the amazing things for us was Meggie has learned to use her vision better, even though her chart says light perception, we have been working on improving the use of that vision, don't be discouraged parents!



As far as doctors go, our children may not need all the same services, it really depends on what needs your child has, and how they develop over time. Meggie for example has other issues over and above the SOD ONH, such as the scoliosis, so we see an Ortho dr. on a ongoing basis, as well as her Gastroenterologist for her G-tube check ups and diet, we also see a dietician at the same time. When Meggie got alittle older we also started to see a Psyiatrist for her equipment needs, and to have him keep tabs on her tightening muscle situation in her hip and hamstrings, this has also been a great help.



This is alot of information to absorb, but please keep in mind this happens over time, not just days or weeks, the doctors and nurses have been a great help to our family, we sooo appreciate them! Just a few other helpful pointers for you, if you have not contacted your local birth to 3 program facilitator, please, please do so sooner that later. The sooner we can get our children in for their first evaluation, the better! They will be able to recommend the appropriate therapies for your child, and your county caseworker will be able to give you information about available funding for your child.



There are may resources out there, I have listed a few at the bottom of this page, NACD, The Magic Foundation, One Small Voice, just to name a few, please check these out, there will be a lot of useful information to you for the days ahead with you child (I will try to add more in the near future). And lastly, I would just like to say there is a wide range of mild to severe when it comes to SOD ONH, I was very amazed to find out about many individuals leading happy lives despite of any challenges. Even with Meggie being more towards the severe end, we have enjoyed having her as part of our family, and cannot imagine life without her. The love and the warmth, and the contagious giggles she adds to the family are invaluable not to mention the life lessons along the way.



Please feel free to join my blog at google blogs, blog frog, or network blogs. Hope to see you soon, send me a comment!

Ordinary Miracles

This blog is dedicated to Mrs. Hendrikse, Mrs. De Master and the second grade class who welcomed Meggie's visits to their classroom with open hearts.


In the last six months Meggie has really enjoyed watching some movies that are new to her, especially some of the princess movies. She loves to have her big sister watch with her that's when we hear lots of laughter from Meggie.

One of the most recent movies we watched was newest version of "Charlotte's Web", by Paramount Pictures, oh how she loved this movie! The voices of the of the characters would just set Meggie off into a roll of laughter; and very soon we would both be laughing.



Tho we both found the movie to be quite enjoyable, I picked up on some deeper messages that came flooding through this story of a young girl who was determined to save a hopeless little pig. At the beginning of the movie Fern observes her father preparing to take the smallest baby pig (or runt) away. She soon realizes his life is in jeopardy if her father takes him, or if the mother pig is unable to care for him.


Fern then decides take a stand and states how unjust and unfair this is, not to mention the pig could not help it he was the runt. When Fern's father explains to her he is only doing what he has to do, and that the mother pig had more babies than she could feed. That's when Fern stated that "If no one will take care of him than I will." And indeed she did! Fern made a promise to that little pig she named Wilbur, and she intended to keep her promise.


















As time passed Wilbur ended up across the street on the neighbors farm, where Fern continued to make frequent visits. Wilbur made many new friends with the other farm animals, but one of his best friends was a spider named Charlotte. Now Charlotte became a key player in keeping Wilbur alive. She spun amazing words into her web for all to see, not to be famous herself, Charlotte wanted all to see what she saw and admired when she looked at Wilbur. Wilbur was amazed by Charlotte, he thought she did miracles, but Charlotte assured Wilbur that the miracle she saw was in Wilbur. Charlotte taught others great things like teamwork and how to treat others, she was also able to let Wilbur see his first snow fall....a promise kept.




















And in some small way Wilbur contributed to Fern, the farm, and the community. And Charlotte lived on in their hearts' even after she passed on, The people were kinder and more understanding, the animals were closer, friendship brought them through the winter, promises were kept, and even the hardest of hearts rose to the occasion. All because some stopped to see the grace, beauty and nobility of one of the humblest creatures.



















The concerns Fern's parents had earlier on were quickly curbed by their doctor who questioned whether or not her mother believed in miracles. The doctor assured her mother, it's not a matter of if there are miracles; instead, it is whether or not we know where to look for them. The movie ends with playing the song, "Just Another Ordinary Miracle Today."


Many of the stories I have shared are some of the Ordinary Miracles I have experienced. Having a child whom some may not see the significance of their life, the beauty the nobility and the humble individuals these children are. God uses them with other individuals, neighborhoods and communities to impact their lives in a deep meaningful way. Charlotte called her unborn babies a "Magnum opus" or great work, not even knowing what they would be when they were born, and even though others thought Wilbur was ordinary, Charlotte considered him to be a miracle.


















In conclusion, maybe I have inspired you to watch the movie Charlotte's Web with your family; but more so, I hope I have made you think of YOUR children as your "Magnum Opus" or your great work" ~ may we value their lives in such a way that we put forth our best when we raise them and train them. Others of you will think of your children as an "Ordinary Miracle" ~ there's babies being born everyday, and yet we need to be reminded what to see in all our children, the miracle they truly are.


When we value the gift of life that God has given us, it will have a life changing impact on those around us, especially for those who are willing to open their heart & eyes and look in the right places for the miracles.



Children are a blessing from the Lord.

Unexpected Compassion

Compassion(kam pash'en)n.]< L com., together + pati, suffer]] deep sympathy; pity <>compassionate adj. -compassionately adv.



In just the last few months Meggie and I have experienced an overflowing amount of compassion from strangers, from other children, and from long time friends, at just the right time, for an achy heart. God knows when we feel broken hearted, desperate, and needy...and he always has just the right cure for any symptom or disease.

After a great summer, we were gearing up for the fall, school staring, doctors appointments, business travel for my husband, meetings, school functions, and Meggie's program and all the busyness in between. Trying desperately to manage family's schedule and hoping for a good healthy year for Meggie, there was a part of me trying to be strong, feeling as tho things are all on my shoulders. Why we let ourselves feel this way when God is always with us, I don't know I can even answer that.



Emma's compassion

The summer brings back memories of visiting with family and friends, one of our relatives came out with their granddaughter, who spent some time at our house, and while she was here, she brought such joy to our home. The contagious laughter, the endless energy, the fun and games that only a child like heart can grasp and appreciate. This was a child who would just make Meggie laugh and smile each time she came to visit, and each ounce of attention given from Emma to Meggie was just a ray of sunshine to her soul. Emma could do little things which in Meggie's world would equate to big things, like hand her a piece of her favorite paper, put her pillow in place for her, watch a show with her, or just take time to talk with her. Whatever was done for Meggie was always done very lovingly by Emma.



Compassion from Stranger's

On another occasion my oldest daughter, a couple of her friend, Meggie and I took a day trip to a mall a couple of hours away. After being in the mall for a time Meggie and I stopped to take a break and sit, when I started to give Meggie some water through her feeding tube, (trying to sit in a quiet place not to bother anyone.) there was a couple who was sitting next to us and took note of Meggie being feed, while tending to their grandchild. Though not many words were exchange, the looks and smiles they gave to Meggie and I were very appreciated, I could tell by their faces, the compassion they were showing, thank you for the support you showed, it means more than words can say.


Coming as stranger's, leaving as friends

The second stop we made that afternoon was back at the food court, as I was walking there was a young lady in a wheelchair looking and pointing at Meggie. After finishing in line I walked up to the young lady (who had downs syndrome and other issues she was dealing with) and her mother, and asked her if she liked all the decorations on Meggie's chair. Meggie's chair is always a good conversation opener, (we always have it decked out with glitzy girl stickers) even though I was certain she had more questions than stickers. The Young lady's mother told me her daughter was enquiring about Meggie due to her wheelchair, and was concerned whether she was ok or not. The young lady asked me repeatedly "Is she ok? Is she going to be alright?" The sympathy in her voice, and the fact that she herself had many issues to deal with was absolutely a striking example of compassion to me. Despite of her mother's reminder to her that she was in a wheelchair too, she seemed blind to her own issues and was taken with compassion for Meggie.

After a nice conversation with the young lady and her mother, I left feeling comforted to meet a mother whom I could truly sympathize with, and a young lady whom I could love and appreciate for who she is. Thank you for your striking example of compassion.



A child shall lead

And what about the little boy in the library, who immediately upon seeing Meggie and I walking up to the door, pushed the handicap button, so the door would open for us, without anyone even asking him to do so. When his mother saw he was playing by the doors, she started to call him and make sure he was not in trouble, that's when I spoke up and told her he was only being a big helper and thanked him kindly for quickly coming to our aid. Not only did he offer help at the door, but without hesitation he began to carry on a conversation to Meggie, and take an interest in her and the neat wheelchair with the wheels that seem to perk up most little boys. Before I knew it he wanted to push Meggie around the library and give her a ride. His mother was a bit hesitant at first, but I reassured her it would be fine and that Meggie would love the time and attention he was so eager to give.


Who was speaking to that young boy (maybe only age 3-4 years) to act with such compassion, children are not to young to be used by God.



Thank you for being a friend......

Then there's Jayne, this is Meggie's little friend, who would bring a smile to her face upon mentioning her name, for days after spending just one afternoon together. One Sunday afternoon spending time with several families from our church at a potluck, Meggie was entertained by a sweet, cheery little girl with long strawberry blonde hair, freckles, and a missing tooth. Jayne would be in and out the house, frequently checking in on Meggie, and soon became her little nurse, with much compassion, straightening her pillow, picking up toys she would drop, wiping drool from her face when needed, and asking if she could pour the milk into her feeding tube. Not only did she care for Meggie, but she took the time to sit with me, having a lengthy conversation, and asking many questions not many children would ask, while all the other children were outside playing. Before I knew, to my amazement, there was Meggie's little nurse Jayne explaining to another child, while she was taking care of Meggie, how her brain did not tell her legs to walk, just as I had explained to her. How could Meggie not love Jayne, especially when Jayne loved Meggie (unconditionally) first.








Then there's our pastor who quietly comes to Meggie on a Sunday morning church service and ever so gentle puts his hand on Meggie's head, showing his compassion, to a child who he calls his friend to others. This child knows him and if she could speak... would call him friend. What a blessing to have that Christ like example.


The greatest example of compassion I can share is Our Lord Jesus Christ, he responds to all our needs and suffering with a heart bursting with deep love, with compassion that moves him to step in to our lives. He was an example to us, that we may show compassion to the needy, and so we may care enough to get involved in the lives of others.


Because of the Lord's great love we are not consumed, for his compassions never fail. Lamentations 3:22


All the kind words and actions, warm my heart, the prayers and the compassion heal our hearts and give strength for a new day.


I pray your heart will not only receive compassion, but will be bursting with love, and you will desire to give compassion and get involved in others lives, then you will find true joy!







Everyone needs compassion.....