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 !

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