"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.

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" 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!

"My" Helen Keller

"The best and most beautiful things in life cannot be seen, or touch, but are felt in the heart."

Helen Keller


I often refer to Meggie as "My" Helen Keller, though our stories may not be exactly the same, some of the similarities have been very intriguing to me. From a very young age we could tell that Meggie's beautiful blue eyes had been affected by the ONH (Optic Nerve Hypoplagia) which was not diagnoised yet. Just how much vision she had as a baby was very hard to tell.

One of the puzzling things as a baby, was, how she would cry and shake when people would pick her up out of her craddle; not as much with myself, as with someone with an unfamiliar touch to her. This was so puzzling to us we consulted with her doctors and therapist. After examination, time after time the doctors did not find any reason or concern, and reassured us she was fine. Consulting with the therapist, she came to the conclusion, due to Meggie's poor vision, she did not know where she was in space, and felt very insecure being whisked through the air at what seemed like a normal speed to us, we needed to slow it down for her. Ahh, this seemed to make some sense to us, the question was now what do we do?

After a long abnormal pregnancy, we knew Meggie had hydrocephalus(which shortly after birth was arrested), but we did not know that at 6 months of age, "My" Helen Keller was not only legally blind, she would be diagnosed with SOD ONH, (Septo-Optic Dysplagia Optic Nerve Hypoplagia, or DeMoisers syndrome), along with hypothyroidism, and epilepsy. The list of diagnoses and labels grew and one question lead to another, and one diagnoses after another, leaving us wondering how long the list would be?

As a family, in survival mode as I call it we were learning a new definition of normal. I can truly say though we are still learning as we go, we have grown closer as a family and to God.(... but with God, all things are possible. Matt. 19:26 NIV). Only time would tell the challanges and the accomplishments we were about to see.

Years later I recieved a call from an old friend, who shared with me about a program she was using with her adopted son, with CP. She seemed quite excited and had a lot to say about it, and asked if I would be interested in getting some information. At the time I thought I was to busy and just dismissed it for some time. Several months, may be a year later, I got another call from the same friend, she was wondering how Meggie was doing, and if I ever considered her program. That week she stopped over at our home with some informational/educational discs that the president/founder of the company made. Listening to the discs once, twice, and maybe starting a third time, opened a world of valuable information about neurodevelopmental techniques used to help excel brain injured individuals all the way to gifted individuals. My only question was could this really help Meggie?!? I was on the phone shortly after, and we have been a NACD family ever since.

All children can learn, all need the opportunity, even Helen Keller's parents learned that many years ago. If our children are not excelling, we need to provide the right environment and program for them to learn. Just to mention one of the greatest rewards this past year with program was to go to Meggie's eye doctor and show her how Meggie could pick out animals we requested on cards, not only that, she can do them in sequence. Amazing Meggie! We know her vision is far from perfect, but using the vision she has to her best of her abilities, is something worth working for! Any set backs/delays due to illness or seizures soon return, and at times are exceeded.

Thank you NACD, thank you Meggie, I truly feel blessed.