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.....

Meggie's Wish Come True

DREAM, DREAM, DREAM!!! It sounds so easy to do... so why do we get stuck and have a difficult time letting our imaginations go. Whatever the reasons are for allowing our dreams to slip away, illnesses, business, lack of finances, lack of time, etc. Our children and foundations like Make-a-Wish will get you dreaming once again!

In 2006 we were contacted by the Make-A-Wish Foundation informing us that we had been selected for a wish for Meggie and the family, after a member of my family had nominated us. This was a dream turned to reality thanks to an unbelievable team of people who work or volunteer at the foundation.

When we first met with the volunteers they asked us many questions about what we thought Meggie may wish for if she could communicate it. After a little encouragement, we were able to start dreaming again. (You see, going through some rough spots in Meggie's- 6yrs of life at that time , really started to fade some of our dreams.) Getting us back on track was their first task.

We decided Meggie would really love to meet some Disney character, hear the music and take in the Florida sunshine, oh, and she would really love to meet Barney! (a favorite back then).

The plans were made and due to Meggie getting sick easier, and due to a lower tolerance to hot weather, we made plans to wait till September of 2007 to go on the trip. We had a small party with Meggie's appointed volunteer, lunch, cake, and some small gifts for the kids to take on the trip.

The team of people who planned our trip did a fantastic job, we never had Meggie on a big trip , or on a plane away from home especially for a whole week. The accommodations and the help they provided made it all possible. We would have not been able to do this on our own, now we just had to wait for the day to come. http://www.makeawish.org/

Then the unexpected house disaster! Some things we just don't plan for. One day while cleaning, I noticed a small black line by the baseboard in the bathroom. It seemed odd, and I never noticed it there before. We also had two areas we noticed water (slowly) dripping in to our house, humm?!? Time to call an expert, the first call I made, I did not get a good answer, feeling very unsettled, I decided to try a different expert. He was out the same afternoon, checking things out for us, and I was in disbelief at what I was about to see (inside the walls)and learn!

Upon examining the wall in the bathroom and the leak from the ceiling, we had a mold problem, I cannot tell you how happy I was that we made the call. This is the first we noticed any problem, there was no mold to be seen on the wall, there was no standing water either, sick family members was a clue tho. The mold had gone air born, and to make a looonngg story short, we moved out of our home for three months. Working some long, looonnng hours, and with the help of family and friends (but no insurance coverage), we moved in with family for 3 months. To ensure we did things right we took the experts advice, and were able to get our house back together and move in before the children started school again. Thank You Lord!!!

The Blessing of Giving

As the mother of a child with special needs I can sincerely say the impact it has on your life as well as your families' life can be a life changing experience, in a good way. One of the goals I have always had was to maintain a healthy balance between what seemed to be two different worlds with our children at times. When they were younger, it seemed like this would be an easier task, but as they grew, I hoped their relationship would continue to grow.



Loving their sister came natural, they would not have it any other way.


Andrew is not shy when it comes to showing his love for little sister, they truely
share a special bond.


Meggie's siblings never complain about the things she is unable to do,they just make beautiful wishes for her, dreaming like most children love to do.



Meggie's sibling's Andrea and Andrew have gone the extra mile, not only would they meet my family goal, but sometimes even exceed the goals I have set. God has truly blessed us with (three children) two older siblings for Meggie, who love and adore her. Their willingness to take part in events, to speech, to do interviews, or help in other ways that would have their sisters best interest at heart is not even a question in their mind, it's just what they do. Meggie's condition has spurred us on to participate in various events still today.




Some of the things we have done as a family to make a difference especially for children include a radio interview for Children's' Hospital of Wisconsin. I will not forget the excitement the children had as we rode up to the mall in Green Bay where they were holding the radio interviews. Brad and I were interviewed regarding Meggie's condition and our experiences with Children's' Hospital. The kids were able to announce the phone number on the radio where people were able to call and make their pledges for the children with numerous conditions and some very life threatening. What a joy to be able to give back to a place that gives so much for our children!


Andrea getting ready to announce the phone number to call in pledges.


What an honor both Andrea and Andrew felt when they could be part of such a worth while event, knowing how many children would benefit from this.


Dad and Meggie watching the shows going on. Brad and I also felt the honor of being able to share our story and have the opportunity to give back to such an awesome cause,...children.


Even the radio hosts could not contain their excitement! What a great day!




At times the excitement get the best of us, and we just have to take that little siesta, after a hard days work.



Andrea, our oldest child chose to write and paper and do a speech on what it means to have a special needs sister. Though she did not go on to state with her speech, we were undoubtedly pleased with her choice of topics and her ability to get through a tough and wordy speech. In my heart and mind she was a winner!



Papers, speeches, writing songs, fundraisers, and radio interviews, prayers are all things my children have been involved in, and when they do, you can see the heart they have for their sister and these children. It has certainly been a growing experience for the whole family, confirming to us it's not what you get in life, it's about what you give.



Andrea speaking on what it is like to have a sister with special needs.


Meggie loves Andrea's music so do we!



God gave you unique spiritual GIFTS, A unique heart, unique abilities, a unique personality and a lifetime of unique experiences so you would make your own unique difference in the world. ~ The Purpose Driven Life

God has given each of you some special abilities; be sure to use them to help each other, passing on to others God's many kinds of blessings.
~ I Peter 4:10 TLB (The Purpose Driven Life)




The most recent radio interview we were asked to do was also a very heart touching experience. I received a phone call from Sue, one of the coordinators of Possibility Playground in Port Washington, she called to see if our family would speak about what it would mean to have an all inclusive (accessible) playground for Meggie and our children. What a joy to be able to share about how children with all abilities could benefit from this. Having safe swings I could get Meggie in and out of, and having such an inspiring place for my children to be able to share with their sister seemed like a dream worth the time. The interviews were touching and my children spoke like this is something they do all the time, thanks to the radio announcer Matthew Blades, and his willingness to use his talents to help make this playground a reality. You can read more about the playground at http://www.possibilityplayground.org/ and click on Possibility Playground, our story would be Meggie's story. Spring and summer are the start of more trips to the playground, maybe we'll see you there!




Look Meggie, a xylophone!


Great therapy for Meggie.



Ready


Set


Swing Meggie!


My older children were delighted to see Meggie enjoy the swing and the park!!!



Reflecting back, I did not anticipate my children would be so connected to the cause. They have put both feet forward when it comes to stepping up and making things happen for their sister and other children with special needs. Meggie's condition is one source in which inspires us to participate in these events, tho I have to give the honor and glory where it belongs, and that is to our Lord and Savior Jesus Christ. It would be a dishonor for me to take credit that is not mine.





I do have to admit I questioned at times how I managed to be blessed with these kids who have such a deep love for their little sister. The way they relate to her at times (or the value she holds in their belief system) may be hard to comprehend for the majority of people. This love is beyond what words can express from two awe-struck parents, and is certainly a gift from above.


The concerns I've always had from the past of trying to make our worlds blend together is smoothed over at times like water rolling over the sand on the shore. Our lives have blended and bonded not only by my own efforts, but by the grace of God. He has covered us with his loving compassion, which has been evident to us time after time.


I hope this leaves you feeling as blessed as I have !

"Purple Day" ~ International Epilepsy Day

Monday, March 26th was international "Purple Day." This is the color around the world for epilepsy. I sooo missed this (we did both wear purple to her neurology appointment on the Tuesday before) and did not even realize there is a young girl from Canada who started this due to her epilepsy. She wanted everyone to know that if they have epilepsy they are not alone. 50 million people around the world live with epilepsy, this is more than the number of people who have multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson's disease combined. Since I have a daughter with 3 (yes 3) types of seizures, and deals with them on a day-to-day basis, I need to share this website http://www.purpleday.org/, as well as the http://www.epilepsyfoundation.com/.

I have to admit, dealing with seizures daily, or even on a lesser basis is a bummer!!! There are days I wish we could have a week, a few days, or maybe even hours (on a bad day) from any seizures. That would be a dream come true! Although it is not me having the seizures, they can certainly wear on the parents/caregivers as well. Physically, mentally, emotionally, the ongoing battle with seizures takes it's toll. A goodnight sleep, a great neurologist and nurse, medications, a very loving family and LOTS of prayers, and were ready for battle the next day.

The afternoon Meggie was born I remember a friend coming to visit me and to see the baby. I asked the nurse to bring her into the room from the nursery (they had been keeping a close eye on her) and it took a very long time before they came with the baby. I phoned the nurse a second time and they came with the baby a while later. Apparently, the nurse had been observing Meggie closely after she had thought there was a seizure. This was just the beginning of a long period of uncontrolled seizure events.

At approximately 6 mos. of age, Meggie was diagnosed with epilepsy, with many seizures due to fever, illness, and things we still are unsure of. The memories of ambulances rides, hospitals, doctor's office, and many med changes, make me very greatful to be in a much better position than we were years ago. It is such a joy when you can tell the dr. things are staying more stable and their health is good.

Sharing stories of times when Meggie was seizing on the floor at the library when I was there making copies of papers. Times of running through the rain going home from the grocery store, as Meggie was seizing in my arms, or the time we rode to the hospital in one ambulance getting to the hospital, having the seizure subside briefly, just to start again seconds later. A second ambulance took us to the Children's Hospital where we stayed for a week due to her having fever, seizures, and viral meningitis. There are many more stories I could share, but I believe you get the idea. We have come a long way!!!

If Meggie were able to speak, I think she would say, she does not want your pity, compassion and understanding will due. Like other kids, she just wants to be a kid. My goal is to help educate and support others along the way, hoping we may improve the quality of life for my daughter and all individuals with epilepsy, (and those who care for them). If you know anyone who lives with epilepsy, give them a big hug, and a second one from my family.

WE LOVE THE COLOR PURPLE!!!

Lessons from the butterflies

Unit studies, humm...this was something new to me, the idea of coming up with small but meaningful studies for Meggie has been interesting, fun, and yet a challenge; especially with some of the issues she deals with. I really never thought of myself as a homeschooling mom, so it took a little change in my thinking, and now I find it quite enjoyable. When the NACD (the home program I do for Meggie) suggested the unit studies on Meggie's program I was a bit skeptical at first, wondering how she would respond to this. The results.....I was pleasantly surprised and Meggie loves them.


This week we studied the life cycle of a monarch butterfly, (even I learned a few things) watching short videos on the computer, copying pictures and discussing our findings as follow up. Talking about how the butterfly who lays her eggs on the backside of cattail leaves, within weeks they hatch into caterpillars, and within appox. 2 weeks forms a shell called a chrysalis and again in just weeks make it's way out of the shell and become this stunning, magnificent monarch butterfly who's main purpose is to start the whole cycle over again.






As a child I remember my friends and I lying on the ground watching intently while The caterpillar would slowly make it's way across the sidewalk, not seeming to be in a hurry to escape our curious eye. Even with all those legs, (16 I believe) it moved along at it's own pace, and sometimes came to a dead stop. Sometimes we would even pick them up to feel their little legs tickle our hand as they made they're way across, and we would giggle with delight.





Though we could not see what was taking place when the caterpillar was inside the chrysalis, that plain green shell had some significance unseen by our human eye. As children we thought it must be napping, unaware of the metamorphosis that was taking place. The next time we would see that caterpillar it would be transformed beyond recognition.






As the butterfly makes it's way out of the chrysalis the wings dry and soon appear as this picture perfect thin body with 6 legs, antennas, and and gorgeous orange, black and white colored wings. What a site! Will Meggie even get an idea of this beautiful butterfly with her poor vision?!? We'll do our best to explain.








Reflecting on the life cycle of this beautiful monarch butterfly, I pause to think of life with our children........

In the very beginning we think of them as safe and secure while the mother is pregnant, and may be even taking this for granted just a bit. Even when they are "safely" tucked inside unknown or unintentional injury may occur. For instance, a brain injury due to a blockage and poor oxygen may take place. The beginning of life is fragile for butterflies as well as babies and unborn babies. May we always strive to keep our standards high, and respect life from the very beginnings.


The second stage I noted was the caterpillar, moving along with no worries or cares in the world. As a child, I tried making it move at my pace, and it continues to move at it's own pace, and at times even came to a complete stop. Much like we want to force our children to move at our pace at times. May we learn to nurture them, rather than live their lives for them the way we feel it should be. Our children no matter what level of abilities they may have, at times will move at their own pace, learning, growing, and discovering what the world all has to offer.

" May we nurture them and help them grow, rather than living their lives for them as we think it should be,...then we may find ourselves growing in a richer, deeper way"

I have to admit there are many times when I have pause to wonder ..."Are we making the progress we want?"... "Will Meggie continue to progress to higher levels?"... "Has she reached her limits in a particular area?" Then just when my hope begins to fade slightly, she starts to move again, even picking up the pace at times. Reminding me don't give up, keep on going the results may show down the road. Though our journey's may be unique, all can learn (there are different forms of intelligence), and grow in some way be it physically, mentally, or spiritually. We need to educate ourselves in order to educate others.



The third stage of the chrysalis reminds me that what we see and observe from the outside does not always give you the full picture what is taking place on the inside. The actual changes taking place may be huge, but not fully revealed at the time we expect. As we wait... and wonder... and work... and pray... amazing things are transpiring. I do have to say I wondered at one time would we ever be able to break into "Meggie's world." A world that was very unfamiliar to me. How would I get her to appreciate all the things we see and hear, smell, touch, and taste? In her first years she seemed to be in a shell, unaware of all the gifts in the world around her. My new goal was to find a way, somehow, some way I would motivate her to break out of that shell.



Thanks to a loving family, and the NACD, we all wanted Meggie to break out of that shell . Soon we would see our persistent efforts rise to a new level. Meggie was awaking and making her way into our world. Though the efforts are ongoing, the rewards are sweet, and well worth the time and persistence. We spent time reading, playing(which years ago, she did not understand), word cards, watching educational videos, talking to her explain things more in depth for her to understand. I knew if she could only understand, if we could work on her cognitive level things would come together for her. The thrill of it all is that there is hope for all children, if we given them opportunity they will progress.



The last stage (or the beginning) is the transformation to that fully (freed) hatched monarch butterfly. It's breath taking color and form reveal that only the God of the universe could have designed such a unique insect. You have to wonder how is that butterfly with paper thin wings is going to make a journey of 3,000 miles,when only one in 4-5 generations make this journey. This weather sensitive insect is a powerful flyer to say the least. Not only do the great grandchildren of this insect make this journey; but, often times they return to the same tree their relatives were in....Amazing!!!


I find myself cheering on children of all abilities, like Meggie, they may be fragile in design, but the will go the distance, and jump those hurtles, even when the odds are against them. Meggie is weather sensitive just like the butterfly, (as are some other children) but, they are powerful flyers weathering the trials and storms along the way.

I had a great aunt with special needs, I often wonder what kind of conversations my great grandmother and I would have about our children if she were here. What I do know is the love and compassion they had for her, she was the youngest of 10 children and they raised her siblings to love and care for her, as I am in the process of doing with my other children.

.



" I guess..... I like the butterfly will return to my family tree and carry on the values left for me to embrace, making a difference in the world, even if I only touch one heart at a time."

Ready, Set, Go....

March is the time of year we usually start with our marathon appointments, as long as we are not in the middle of a blizzard, and as long as Meggie's health is good. Over the years I have learned to try and set appointments up for spring and fall, to keep them grouped closely together, and then we can enjoy our summer break with the other kids and dad.

Starting with the physiatrist(or the equipment specialist as I call him), the orthopedic dr., x-ray dept., the neurologist, the gastroenterologist, the endocrinologist, the lab dept., the pediatrician, and your staff, not to mention therapies, OT,PT, eye dr., and the dentist. Please, Please forgive me if I missed anyone, we think the world of all the special people who devote hours upon hours of their lives to care for our children. The things I have learned and the information you have passed on to me is invaluable. I have come to appreciate all your knowledge and skills, you so passionately demonstrate,and I refer to you as Meggie's careteam, you make our lives more manageable. So many parents that have children with special needs have big loads to handle, and things may seem overwhelming at times. All I can say (with all my heart) is THANK YOU, THANK YOU, THANK YOU!!!

So as you can imagine, we need to be a little creative with the schedule at times. If there are books we can read or picture cards to work on with Meggie, those are things we can do while waiting in a room, but if you ask Meggie, she may rather play with her crinkly mylar paper, she finds it absolutely fascinating. If none is available, the exam table paper may do.

Though there are several things to watch for with ONH SOD, you can find out more by checking out more detailed information at the link below,www.One Small Voice Foundation or check www.MAGIC Foundation link, they give yearly seminars for parents and families to come together and listen to doctors, nurses, therapists, and researcher speak on ONH SOD and various other syndromes/conditions that children may have. Education is key, and can make this journey with these special children a much better experience for all if we are more prepared and equipped to face the seemingly numerous challenges we may or may not encounter. Knowing the needed necessary testing with hormone deficiencies, glucose levels, developmental delays, mid line brain malformations, etc. and the needed treatment will be of great benefit if the time comes when you may be need it. If a Child has ONH the severity may range greatly, all the way from light perception to visually impaired, in one or both eyes. We need to keep in mind that if the child has ONH they are at risk for any of the abnormalities that come with SOD. ONH is the leading cause for childhood blindness, and it is on the rise, being aware of the signs and symptoms may lead to earlier treatment and more effective results for the child. My goal is to share our story and educate others in this quest for helping our children lead better quality lives, with or without Optic Nerve Hypoplasia Septo-Optic Dysplagia, ONH SOD (or DeMoiers syndrome), all are one in the same. An important note to parents is ONH is the leading cause for childhood blindness and we all can join in being educated in this area.

With all that said, our children hold great value in this world and they are here for reasons that may be known to us, and some reasons that may be beyond our understanding.

Enjoy the little things in life for one day you may look back and realize they were the big things.
~Robert Brault

Laughter sparks the soul

My husband has observed over the years that I am a routine person. When he first mentioned this to me, I just had to laugh and say it helps me to stay focused, but, your right. He was not criticising me, rather, just making an observation as I was working.

The other day was a great example of this. After I woke up and was ready for the day, I neatly laid out all the things needed to feed Meggie, while talking to my two older children, who were getting ready for their day. When the two older children are out the door for school, then I can focus on Meggie's schedule a little more intently.

Once she is dressed and ready, we come into the kitchen and get her seated comfortably in her throne as we call it (her wheelchair with foam princess stickers). Next we have to say good morning to meggie's best friend/yellow lab, who's name is Maddie. Now Maddie has been waiting patiently for Meggie, and will sit by her side so faithfully each morning,(unless she sneaks off for a nap and is snoring on her mat) just waiting to shower her with lots of doggie kisses. Now Meggie will return the love by patting Maddie on the head, or petting her, and occasionally, oops! poking her in the eye. This dog is sooo patient and seems to be very understanding of Meggie's visual mis calculations. What a friend !!!


It's time for breakfast, and I've neatly laid out everything we need for tube feeding and oral feeding, vitamins, H2O, and meds through the tube and if Meggie is healthy and well, we will eat the rest of the meal by mouth. Well, that particular day, she decided to grab the paper towel on the counter top, now everything water, milk, food were all set on the paper towel; when Meggie thought she was going to try a Hoodni trick. Just a note, Meggie has never watched a magic show, nor does she even know who Hoodni is. Needless to say, she pulled that paper towel at lightning speed and just then, everything on it, flew into the air and did a flip, then came crashing on the floor, clink, clank, splat. Everything landed on the floor, leaving Meggie giggling at the sounds.

"A laugh is a smile that bursts"
Mary H Waldrip

As soon as I said no, no Meggie, don't pull the paper (saying to myself, good job Einstein, your talking to your child who is fascinated with paper, loves the the sound of certain things dropping on the floor, not to mention she's done this before). I realized she missed hitting her clothes and chair with any of the mess, whoa! Then I had to laugh along with her, what a great trick Meggie!!! The mess was quickly cleaned up, and we were back to routine.

'MEGGIE'S SONG'

"Nothing happens...but first a DREAM."

Carl Sandburg

As I look back at all the special people we have met due to Meggie's condition. This is one thing I could say I would not change for the world. The friendships, the contacts, the aquaintances to name a few are some of the types of people who have come in and out of our lives, and who have blessed us in thier own unique ways.

Many of these people have a big heart for Meggie. And she just has a way of touching their hearts, without even having to say a word. There is one family in our home town, that we had been introduced to through an aunt of mine, at a time we were in desperate need of a caregiver. Meggie was just a baby and after my aunt had spoke to this family, about helping us out with Meggie, we were in touch with them shortly after. We feel in love with this family, not only did they care for Meggie that one time, but several times, the couple, their daughters, their son, and their niece! The love and care they give her is exceptional, it will not be forgotten, and they will a friends for a life time. We love you guys, and can never thank you enough!

I wrote the words to a song for Meggie and our friend's son wrote the music thanks Vinnie, your the best!

Meggie's song

Meggie I've been dream'n and my dream'n never ends

I could dream a life time for my family and my friends

But of all the dreams I have a life long list for you

I keep pray'n that all these dreams, I pray for will

come true

Vs 1) Tho your eyes may not see so clear, the smiles on

our faces

May your heart know the sunny smiles, your put'n on our

faces

May your heart know the love in each tender warm embrace,

Don't let frowns put you down, keep that smile right in place.

Vs 2) Tho we may not feel and walk and talk and act the same

May we try to understand and always make some gains

Let us see you for the blessing that you truly are...

And not let labels blind us to how unique you are.

Vs 3) May God bless you with laughter, music, happiness and friends

Bestow upon you his patients and kindness without end.

As I dream and pray...three things that will remain...

The faith, hope and love, I pray you'll have the same.

Vs 4) May the Lord God above always know your name

Stay in his sight he'll hold you tight and wipe away your tears now

May he keep you while you sleep and in your waking hours

As you grow may there flow a warm gentle blessing shower.

And Meggie you know that I love you!