So, this year's progress is another post altogether...but this is a great Elise story!
Amelia, her 5 year old little sister, started kindergarten this year. Elise has been quick to jump in on all of Amelia's homework. Telling numbers, counting, reading, letters, etc, quick before Amelia can figure it out...
Amelia, being the dramatic emoticon that she is, started weeping theatrically one day and shrieked out "Elise is smarter than me!!! She knows everything and I know nothing!! I am not smart and I am worthless!!"
I, being the good mommy that I am, stepped in quickly, and said, "It doesn't have anything at all to do with being smart or not!! Elise has had 4 years of practice!!! You will get more practice and you will know everything too!!"
Elise leans in to Amelia, and smiles sweetly...and whispers, "No, Elise smart." Then pulls away and laughs riotously!!
Amelia sobs louder and with more woe-is-me flagellation....
I, of course, do the good mommy thing and reassure Amelia and reprimand Elise for making Amelia worry....but I gotta say, it was FUNNY!!! The words, the delivery, the timing, and effect...it was a spectacular dig!!!!
Monday, October 3, 2011
Sunday, October 2, 2011
31 for 21: #2 Church
I am trying to push our church into serving the kids in it by putting together a special needs ministry. Better than 10% of the kids in our county's school system have an IEP (Individualized Education Plan) in place and receive services. If that extrapolates to our church that means that 10% of the kids in our church might have a bumpy time in the classroom. (Maybe not all, but highly likely some.) With the size of our church, we're talking quite a few kids.
God used a friend to tell me, "Okay, now." in terms of whether it was time to challenge our church (of 8 years!) to meet this need. Their willingness to move in that direction is evident in their placing an order for Lifeway's special needs curriculum...but it is moving much more slowly that I would like. I am trying to be patient, but sometimes it is hard.
That said, I decided that since today is Sunday, I would actually share our mission plans. In the hopes that someone could use them, as is, tweaked, or as a jumping off place for their own plan. I wrote these with a couple of friends' editing. I am also including the websites that I found the most helpful in writing the framework.
Proposal for Special Needs Ministry at Church X
Why are we here?
1) A number of families that God has brought to Church X are impacted by special needs. These families could benefit from organized childcare and programming designed to better accommodate, and most importantly teach the Gospel to, children with special needs. Currently there is unclear leadership inside our church for special needs accommodation. While no church and no volunteer system is perfect, we believe there is opportunity for improvement in our church's provision of consistent and reliable care.
Under the current arrangement, children with special needs are supervised by a volunteer assigned to a specific child, who accompanies the child to activities conducted for non-special needs children. The problem with this arrangement is that (a) whether a personal caregiver will be available is unpredictable until the morning of church, and (b) even if a personal caregiver is available, the activities they attend may be wholly inappropriate for the special needs child (e.g. loud music, bright lights, or sitting still for long periods of time).
This inconsistency and unreliability sets everyone up for failure: the child, the family, the typical children participating in the same activities, and the teachers and volunteers who are not prepared to teach/manage the child with special needs. If a program was organized and executed through a coordinated and planned effort, everyone could benefit.
2) Intentional planning with coordinated special needs accommodation will yield positive benefits for the church and participating children. When children with special needs are provided greater consistency in their church experience (familiar faces, familiar and safe space, equipped volunteers), behavior challenges will dramatically improve. One cannot underestimate the importance and value of consistency to the child impacted by special needs.
3) With minimal effort, our church can move beyond babysitting special needs children to helping these children grow and learn about Jesus Christ. By providing minor curriculum modifications or utilizing some specially tailored curriculum (e.g. Lifeway's Special Buddies curriculum or other readily available and easy-to-use curriculum products), participating children may advance spiritually. Creating successful learning opportunities for the participating children ultimately benefits the teachers who are not scrambling to "entertain" a child or manage their behavior.
4) A number of people in X Church have expressed interest to serve inside a special needs inclusion program. Special Needs ministries are also very popular means of service for youth. Many churches share that Special Needs ministries provide opportunities for volunteers to serve with purpose and to grow spiritually through their service.
5) Church X has had members move their membership to other churches because we do not offer adequate services for special needs children.
Proposal:
Church X can facilitate a special needs ministry by continuing to provide personal supervision, establishing a dedicated classroom for special needs children, or a combination of both. Each of these alternatives can be successfully put into practice without disruption of any of the existing Children’s Ministries. They can be initiated together with the ability to break off in case of emergency or can be implemented separately. They would offer support, consistency, and on-going joy for both the children and their parents.
Option A:
The personal caregiver method, or “Shadow Method,” where an individual accts as a “shadow” accompanying the special needs child during the church’s regular children’s programs, has worked in the past with many of the children with special needs that have gone through our ministry. There will undoubtedly be more children that will need this approach, but we are not getting the word out for the need. We are also not organizing to make this option effective. In most cases, the volunteers do not have a calendar nor a frame-work for a back-up plan, in case of illness or traveling. Often, special needs children arrive at Church X and there is no on available to supervise them.
Our suggestion for this aspect is to develop a calendar, and make phone calls like in the preschool hall volunteer schedule.
This has also not been a publicized need. It needs to be put in the bulletin, announcements made in the sunday school classes, and we may want to consider an information table to recruit volunteers similar to the Stephen Ministry’s. A mere 15 rotating volunteers could easily provide for the need, and allow the volunteers to rotate weeks they participate, allowing them to regularly attend worship services and Sunday School classes to receive the spiritual nourishment that they too need.
This program also gives us the opportunity to tap into our youth. On a rotating basis, they would not only help fill the need, but they would be given the spiritual education that missions and service need not be in remote jungles. Often the ministry that has the most impact is that done for their neighbors.
Importantly, the Shadow Method requires that optional materials made available if the child in question cannot execute the crafts in a typical classroom or must leave the worship area. Simple Bible Story books, Bible stories on audio, and coloring supplies can be easily and inexpensively provided and are appropriate for many ages. A storage bin can hold this and could be accessed by several Shadows at once. We cannot expect the Shadows to simply provide entertainment; moreover, without these materials, our special needs children may not be hearing the Gospel while at our church.
From a safety perspective, there needs to be a laminated emergency sheet that gives the emergency medical personal contact information for each child participating and a binder that has parental recommendations and phone numbers. A simple pager system like that used in the Preschool Ministry would also be effective.
Option B:
A fully outfitted, self-contained classroom could easily be established. This option has considerably more flexibility. Not only could children who cannot handle the preschool hall be served, but it could also stand as an occasional break room for special needs children who are simply having a sensory overload and need a bit of a break.
"Mr. X", who is in charge of the classroom assignments, has assured us that room 301 does not have any Sunday School assignments in it, and never has. He said that if we choose Option B, it would be available to us. It would be an ideal size for this purpose.
Stocked with a few body pillows or bean bags, a table and chairs, and some supplies, this could become a haven of Christ-centered support and fun for both children with special needs and their parents.
Examples of items that can be used for this classroom, which easily come by and universally usable by a variety of ages, are:
1) The Jesus Storybook Bible by Sally Lloyd-Jones (this even comes with audio CDs)
2) A mobile changing station in case of an emergency: a pad, wipes, plastic grocery bags, and a parent-provided change of clothes
3) A CD player, with some dramatized Bible stories, Bible songs, and character stories like Adventures in Odyssey or other Focus on the Family (or similar) products
4) Markers, crayons, colored pencils and Bible coloring pages
5) Felts or story board type items
6) Veggie Tales, Cedarmont Kids, or similar videos
7) Craft supplies for activities
With regard to safety, this class could utilize a pager system in order to contact parents in the event the caregiver is not able to pacify a child. As a less expensive alternative, a parent sign in sheet stating where they are and a cell phone number would work, too.
A binder with a parent intake sheet is a must. It would list the child’s needs and could also include diagnoses/medical conditions, allergies, behavior suggestions, useful information, and emergency procedures.
Additionally, a simple workshop of suggestions and education of those in the leading of our kids would be instrumental for many who have never had experience with special needs. It would not only provide our teachers with useful ideas for trouble-shooting, but it would let them know that there is a program set up to support those who are more equipped to handle more involved situations. This can be done in a quick hour or two length program and/or as hand out forms that outline emergency procedures, protocol, and suggestions for mediating difficulties. "Ms. X" who attends our church has a fantastic ministry in “theinclusivechurch.com” and is an excellent resource. It could easily be presented as a luncheon or in conjunction with a First Aid and CPR program.
Our church has enough people who are willing to help and be on a consistent rotation, both with children with special needs themselves and those who have this need laying heavy on their hearts. A few youth who would be willing to help and/or act as runners between the children's classroom area would be an incredible tool, as well.
Church Members Willing to Serve in a Special Needs Ministry:
(I listed those that I talked to who expressed a need or interest)
We are also confident that once this becomes a public need, there will be more who will want to be involved.
Conclusion:
There are children with Special Needs that are not being ministered to and are slipping between the cracks in our current program. We have members that are leaving because they are not getting the support they need. There are gaps in the support for both profound and simplistic needs.
X County Schools have approximately 10% of the student population recorded as receiving Special Needs services, even if we choose not to pursue this as an outreach ministry, there will be many more children who will need access to these options. We have the manpower in this church; we just need education and organization for effective use of volunteers.
We have given this proposal a great deal of thought, research, and prayer over several years and we have witnessed God’s movement amongst us such that we were encouraged to bring this proposition before you now. Please consider it prayerfully.
“The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.'” Matthew 25:40
Resources:
God used a friend to tell me, "Okay, now." in terms of whether it was time to challenge our church (of 8 years!) to meet this need. Their willingness to move in that direction is evident in their placing an order for Lifeway's special needs curriculum...but it is moving much more slowly that I would like. I am trying to be patient, but sometimes it is hard.
That said, I decided that since today is Sunday, I would actually share our mission plans. In the hopes that someone could use them, as is, tweaked, or as a jumping off place for their own plan. I wrote these with a couple of friends' editing. I am also including the websites that I found the most helpful in writing the framework.
Proposal for Special Needs Ministry at Church X
Why are we here?
1) A number of families that God has brought to Church X are impacted by special needs. These families could benefit from organized childcare and programming designed to better accommodate, and most importantly teach the Gospel to, children with special needs. Currently there is unclear leadership inside our church for special needs accommodation. While no church and no volunteer system is perfect, we believe there is opportunity for improvement in our church's provision of consistent and reliable care.
Under the current arrangement, children with special needs are supervised by a volunteer assigned to a specific child, who accompanies the child to activities conducted for non-special needs children. The problem with this arrangement is that (a) whether a personal caregiver will be available is unpredictable until the morning of church, and (b) even if a personal caregiver is available, the activities they attend may be wholly inappropriate for the special needs child (e.g. loud music, bright lights, or sitting still for long periods of time).
This inconsistency and unreliability sets everyone up for failure: the child, the family, the typical children participating in the same activities, and the teachers and volunteers who are not prepared to teach/manage the child with special needs. If a program was organized and executed through a coordinated and planned effort, everyone could benefit.
2) Intentional planning with coordinated special needs accommodation will yield positive benefits for the church and participating children. When children with special needs are provided greater consistency in their church experience (familiar faces, familiar and safe space, equipped volunteers), behavior challenges will dramatically improve. One cannot underestimate the importance and value of consistency to the child impacted by special needs.
3) With minimal effort, our church can move beyond babysitting special needs children to helping these children grow and learn about Jesus Christ. By providing minor curriculum modifications or utilizing some specially tailored curriculum (e.g. Lifeway's Special Buddies curriculum or other readily available and easy-to-use curriculum products), participating children may advance spiritually. Creating successful learning opportunities for the participating children ultimately benefits the teachers who are not scrambling to "entertain" a child or manage their behavior.
4) A number of people in X Church have expressed interest to serve inside a special needs inclusion program. Special Needs ministries are also very popular means of service for youth. Many churches share that Special Needs ministries provide opportunities for volunteers to serve with purpose and to grow spiritually through their service.
5) Church X has had members move their membership to other churches because we do not offer adequate services for special needs children.
Proposal:
Church X can facilitate a special needs ministry by continuing to provide personal supervision, establishing a dedicated classroom for special needs children, or a combination of both. Each of these alternatives can be successfully put into practice without disruption of any of the existing Children’s Ministries. They can be initiated together with the ability to break off in case of emergency or can be implemented separately. They would offer support, consistency, and on-going joy for both the children and their parents.
Option A:
The personal caregiver method, or “Shadow Method,” where an individual accts as a “shadow” accompanying the special needs child during the church’s regular children’s programs, has worked in the past with many of the children with special needs that have gone through our ministry. There will undoubtedly be more children that will need this approach, but we are not getting the word out for the need. We are also not organizing to make this option effective. In most cases, the volunteers do not have a calendar nor a frame-work for a back-up plan, in case of illness or traveling. Often, special needs children arrive at Church X and there is no on available to supervise them.
Our suggestion for this aspect is to develop a calendar, and make phone calls like in the preschool hall volunteer schedule.
This has also not been a publicized need. It needs to be put in the bulletin, announcements made in the sunday school classes, and we may want to consider an information table to recruit volunteers similar to the Stephen Ministry’s. A mere 15 rotating volunteers could easily provide for the need, and allow the volunteers to rotate weeks they participate, allowing them to regularly attend worship services and Sunday School classes to receive the spiritual nourishment that they too need.
This program also gives us the opportunity to tap into our youth. On a rotating basis, they would not only help fill the need, but they would be given the spiritual education that missions and service need not be in remote jungles. Often the ministry that has the most impact is that done for their neighbors.
Importantly, the Shadow Method requires that optional materials made available if the child in question cannot execute the crafts in a typical classroom or must leave the worship area. Simple Bible Story books, Bible stories on audio, and coloring supplies can be easily and inexpensively provided and are appropriate for many ages. A storage bin can hold this and could be accessed by several Shadows at once. We cannot expect the Shadows to simply provide entertainment; moreover, without these materials, our special needs children may not be hearing the Gospel while at our church.
From a safety perspective, there needs to be a laminated emergency sheet that gives the emergency medical personal contact information for each child participating and a binder that has parental recommendations and phone numbers. A simple pager system like that used in the Preschool Ministry would also be effective.
Option B:
A fully outfitted, self-contained classroom could easily be established. This option has considerably more flexibility. Not only could children who cannot handle the preschool hall be served, but it could also stand as an occasional break room for special needs children who are simply having a sensory overload and need a bit of a break.
"Mr. X", who is in charge of the classroom assignments, has assured us that room 301 does not have any Sunday School assignments in it, and never has. He said that if we choose Option B, it would be available to us. It would be an ideal size for this purpose.
Stocked with a few body pillows or bean bags, a table and chairs, and some supplies, this could become a haven of Christ-centered support and fun for both children with special needs and their parents.
Examples of items that can be used for this classroom, which easily come by and universally usable by a variety of ages, are:
1) The Jesus Storybook Bible by Sally Lloyd-Jones (this even comes with audio CDs)
2) A mobile changing station in case of an emergency: a pad, wipes, plastic grocery bags, and a parent-provided change of clothes
3) A CD player, with some dramatized Bible stories, Bible songs, and character stories like Adventures in Odyssey or other Focus on the Family (or similar) products
4) Markers, crayons, colored pencils and Bible coloring pages
5) Felts or story board type items
6) Veggie Tales, Cedarmont Kids, or similar videos
7) Craft supplies for activities
With regard to safety, this class could utilize a pager system in order to contact parents in the event the caregiver is not able to pacify a child. As a less expensive alternative, a parent sign in sheet stating where they are and a cell phone number would work, too.
A binder with a parent intake sheet is a must. It would list the child’s needs and could also include diagnoses/medical conditions, allergies, behavior suggestions, useful information, and emergency procedures.
Additionally, a simple workshop of suggestions and education of those in the leading of our kids would be instrumental for many who have never had experience with special needs. It would not only provide our teachers with useful ideas for trouble-shooting, but it would let them know that there is a program set up to support those who are more equipped to handle more involved situations. This can be done in a quick hour or two length program and/or as hand out forms that outline emergency procedures, protocol, and suggestions for mediating difficulties. "Ms. X" who attends our church has a fantastic ministry in “theinclusivechurch.com” and is an excellent resource. It could easily be presented as a luncheon or in conjunction with a First Aid and CPR program.
Our church has enough people who are willing to help and be on a consistent rotation, both with children with special needs themselves and those who have this need laying heavy on their hearts. A few youth who would be willing to help and/or act as runners between the children's classroom area would be an incredible tool, as well.
Church Members Willing to Serve in a Special Needs Ministry:
(I listed those that I talked to who expressed a need or interest)
We are also confident that once this becomes a public need, there will be more who will want to be involved.
Conclusion:
There are children with Special Needs that are not being ministered to and are slipping between the cracks in our current program. We have members that are leaving because they are not getting the support they need. There are gaps in the support for both profound and simplistic needs.
X County Schools have approximately 10% of the student population recorded as receiving Special Needs services, even if we choose not to pursue this as an outreach ministry, there will be many more children who will need access to these options. We have the manpower in this church; we just need education and organization for effective use of volunteers.
We have given this proposal a great deal of thought, research, and prayer over several years and we have witnessed God’s movement amongst us such that we were encouraged to bring this proposition before you now. Please consider it prayerfully.
“The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.'” Matthew 25:40
Resources:
The Inclusive Church is a blog and collection of links and utilities to implement and strengthen any Special Seeds Ministry:
http://www.facebook.com/#!/TheInclusiveChurch
http://www.facebook.com/#!/TheInclusiveChurch
Lifeway's Special Buddies Curriculum:
http://www.lifeway.com/n/Product-Family/Bible-Teaching-for-Kids/Bible-Teaching-for-Kids:-special-buddies
And Lifeway's other Special Needs supports:
http://www.lifeway.com/n/Ministries/Special-Needs
Jesus Storybook Bible:
http://www.jesusstorybookbible.com/
A FABULOUS felt Bible Stories Set:
http://www.thefeltsource.com/Bible-In-Felt-Deluxe.html
Cedarmont Kids (DVDs and CDs):
http://www.cedarmont.com/index2.html
Adventures in Odyssey (Focus on the Family):
http://www.whitsend.org/
Your Story Hour:
http://www.christianbook.com/Christian/Books/cms_content?page=1420009&sp=97442&event=1016YSH%7C1808326%7C103879
Free Coloring Pages, Lessons, Special Needs Ministry Adaption and Implementation Information:
http://ministry-to-children.com/bible-coloring-pages/
The Picture Bible
http://www.amazon.com/Picture-Bible-Iva-Hoth/dp/0781430550
The picture is totally not mine I stole it off of Yahoo Images about a year ago...
Saturday, October 1, 2011
31 for 21 - #1 Totally signed up again for this year!!
I am excited to sign up for 31 for 21 again this year! This means nothing more exciting than I commit to a post a day for every day of October for Down Syndrome. Hopefully something that I write will open someone's eyes, answer a question, touch a heart, or cause you to giggle...but if nothing else, I remind you that I celebrate my girl.
If you have a blog and want to join in on the fun, if you hit my 31 for 21 button it will take you to the sign up! Or go HERE
If you've not been around for a couple of days or weeks. Yes, I changed my blog name. I have not changed my voice or what I'm writing...so have no fear, it's still me.
If you want to peek back at LAST YEAR's 31 for 21 entries...I certainly will be to see how things have been changing. :)
I would be THRILLED to take questions and I do not get offended so please consider this your opportunity to ask me anything! This goes for those of you with littles with Downs...and those who do not have kids with any "labels," pending or otherwise...I'm wide open. :) underwater9800@gmail.com
So. There's post #1...easy, squeezy...better stuff to come!
But just so you forgive me for the brevity of this post, here is Elise at an outreach event our church was involved with. It was one of those crazy bungy-trampoline things...To say Elise LOOOOVed it, would be the understatement of the month!!
If you have a blog and want to join in on the fun, if you hit my 31 for 21 button it will take you to the sign up! Or go HERE
If you've not been around for a couple of days or weeks. Yes, I changed my blog name. I have not changed my voice or what I'm writing...so have no fear, it's still me.
If you want to peek back at LAST YEAR's 31 for 21 entries...I certainly will be to see how things have been changing. :)
I would be THRILLED to take questions and I do not get offended so please consider this your opportunity to ask me anything! This goes for those of you with littles with Downs...and those who do not have kids with any "labels," pending or otherwise...I'm wide open. :) underwater9800@gmail.com
So. There's post #1...easy, squeezy...better stuff to come!
But just so you forgive me for the brevity of this post, here is Elise at an outreach event our church was involved with. It was one of those crazy bungy-trampoline things...To say Elise LOOOOVed it, would be the understatement of the month!!
Thursday, September 29, 2011
Why Cancer Can Be Sweet - #4 Medical Science and the Foot Soldiers
For my final post for Childhood Cancer Awareness, I would like to do a shout out for Medicine. And more importantly, those who make it magical.
I used to think medicine was a more exact science. You get sick, they make it better. Problem. Medicine. Healing. Voila.
In truth, that's not how it works.
Over the last 9 years, I have been up to my eyeballs in medicine. Whether I wanted to be or not. I had the pleasure of volunteering and shadowing in the medicine community throughout high school and college, but I did not fully appreciate what "science" really meant.
Science really only promises a clear problem solving pathway while searching for an answer. Wikipedia defines it: "(from Latin: scientia meaning "knowledge") is a systematic enterprise that builds and organizes knowledge in the form of testable explanations and predictions about the universe."
TONS of medical break-throughs have come about by accident. Penicillin. Chemotherapy, itself, was a by-product of World War I's Mustard Gas. No Lie.
But the sweet part of cancer that I wanted to highlight are the doctors, nurses, and techs. Anybody can hand out miracles. Joe on the street can pass out drugs. The magnificence of the Oncology profession is that they aren't miracle workers. They will lose kids. They may not win every time. But they come back to work every day. Most of them with a smile and a hug for all those they care for. They constantly steep themselves in loss and illness, sadness and side effects; yet they constantly hand out hope. They are the heroes in the medical world, not because because Oncology is more important, but because they are the Foot Soldiers that unfailingly fight. Day after day, after day.
"Foot Soldiers are those specifically trained for the role of fighting on foot to engage the enemy face to face and have historically borne the brunt of the casualties of combat in wars." - Wikipedia
Is that not the most heroic??
The nurses and techs are the same way. They love their kids and make sure their little bodies are fighting valiantly. They support the parents, they smile, and share normalcy. They fight the cancer dragon face-to-face every day. And come back to fight another day.
The Medal of Honor is given for the "conspicuous gallantry and intrepidity at the risk of his or her life above and beyond the call of duty while engaged in an action against an enemy".
Perhaps they aren't risking their physical life to battle cancer, but I am sure that they face a significant emotional toll. If it was my call, I'd award every last one of those on the floor with Elise with the medical equivalent of the Medal of Honor.
And so, on the final day of Why Cancer is Sweet, I'd like to raise a cheer for Elise's Doctors, Fellows, Nurse Practitioners, Nurses, and Techs. Thank you for fighting with an indomitable spirit for my child's life. Thank you for weathering all the storms. Thank you for wielding the science as a weapon to produce a miracle. Thank you for bringing joy. Thank you for caring. Deeply. Over and over. Every time. Equally.
You are Protectors. Defenders. Warriors. Heroes.
Thank you.
I used to think medicine was a more exact science. You get sick, they make it better. Problem. Medicine. Healing. Voila.
In truth, that's not how it works.
Over the last 9 years, I have been up to my eyeballs in medicine. Whether I wanted to be or not. I had the pleasure of volunteering and shadowing in the medicine community throughout high school and college, but I did not fully appreciate what "science" really meant.
Science really only promises a clear problem solving pathway while searching for an answer. Wikipedia defines it: "(from Latin: scientia meaning "knowledge") is a systematic enterprise that builds and organizes knowledge in the form of testable explanations and predictions about the universe."
TONS of medical break-throughs have come about by accident. Penicillin. Chemotherapy, itself, was a by-product of World War I's Mustard Gas. No Lie.
But the sweet part of cancer that I wanted to highlight are the doctors, nurses, and techs. Anybody can hand out miracles. Joe on the street can pass out drugs. The magnificence of the Oncology profession is that they aren't miracle workers. They will lose kids. They may not win every time. But they come back to work every day. Most of them with a smile and a hug for all those they care for. They constantly steep themselves in loss and illness, sadness and side effects; yet they constantly hand out hope. They are the heroes in the medical world, not because because Oncology is more important, but because they are the Foot Soldiers that unfailingly fight. Day after day, after day.
"Foot Soldiers are those specifically trained for the role of fighting on foot to engage the enemy face to face and have historically borne the brunt of the casualties of combat in wars." - Wikipedia
Is that not the most heroic??
The nurses and techs are the same way. They love their kids and make sure their little bodies are fighting valiantly. They support the parents, they smile, and share normalcy. They fight the cancer dragon face-to-face every day. And come back to fight another day.
The Medal of Honor is given for the "conspicuous gallantry and intrepidity at the risk of his or her life above and beyond the call of duty while engaged in an action against an enemy".
Perhaps they aren't risking their physical life to battle cancer, but I am sure that they face a significant emotional toll. If it was my call, I'd award every last one of those on the floor with Elise with the medical equivalent of the Medal of Honor.
And so, on the final day of Why Cancer is Sweet, I'd like to raise a cheer for Elise's Doctors, Fellows, Nurse Practitioners, Nurses, and Techs. Thank you for fighting with an indomitable spirit for my child's life. Thank you for weathering all the storms. Thank you for wielding the science as a weapon to produce a miracle. Thank you for bringing joy. Thank you for caring. Deeply. Over and over. Every time. Equally.
You are Protectors. Defenders. Warriors. Heroes.
Thank you.
Shiney New Name
"You're not the same as you were before," he said. You were much more... muchier... you've lost your muchness," he finished, nodding as if that made perfect sense.
"My muchness?"
He crouched and poked her in the stomach with his finger. "In there," he said. "Something's missing."
-Tim Burton's "Alice in Wonderland"
I am usually a book person, not a movie person...I mean, don't get me wrong, I love a good movie, but usually a book trumps the movie. This time, I feel that, while different, this movie is powerful. Maybe even better than the book.
I read "Alice in Wonderland" by Lewis Carroll twice to confirm if this quote was in the book, as I got conflicting information on the Internet. I can fairly confidently assert, this interchange was not Lewis Carroll's.
But it is brilliant.
As I mentioned, I am changing the name of this blog, not because I am ashamed of my original blog name, but because of the ugliness it can be associated with, and I don't want to hurt by default.
So, on to the new name...Um, what's with that mouthful of nonsense words?
"Muchier Muchness", while nonsensical, shares the "MORE" with which you live your life.
Elise may have an extra chromosome and the deficits that it brings, but she brings to our lives (and every life she touches!) a magnitude of joy, courage, and passion that cannot be put into everyday words. She has "Muchness" in spades. She never holds back from insecurity, she never worries about what others think, she always shares her joy, and always loves deeply. She spills into others' lives and bubbles through their pre-conceived ideas, changing and improving their lives. Her joy permeates your heart and makes your soul grow.
Elise, unlike Alice in that moment, knows who she is. Elise is confident in her muchness. And she is willing to share.
"My muchness?"
He crouched and poked her in the stomach with his finger. "In there," he said. "Something's missing."
-Tim Burton's "Alice in Wonderland"
I am usually a book person, not a movie person...I mean, don't get me wrong, I love a good movie, but usually a book trumps the movie. This time, I feel that, while different, this movie is powerful. Maybe even better than the book.
I read "Alice in Wonderland" by Lewis Carroll twice to confirm if this quote was in the book, as I got conflicting information on the Internet. I can fairly confidently assert, this interchange was not Lewis Carroll's.
But it is brilliant.
As I mentioned, I am changing the name of this blog, not because I am ashamed of my original blog name, but because of the ugliness it can be associated with, and I don't want to hurt by default.
So, on to the new name...Um, what's with that mouthful of nonsense words?
"Muchier Muchness", while nonsensical, shares the "MORE" with which you live your life.
Elise may have an extra chromosome and the deficits that it brings, but she brings to our lives (and every life she touches!) a magnitude of joy, courage, and passion that cannot be put into everyday words. She has "Muchness" in spades. She never holds back from insecurity, she never worries about what others think, she always shares her joy, and always loves deeply. She spills into others' lives and bubbles through their pre-conceived ideas, changing and improving their lives. Her joy permeates your heart and makes your soul grow.
Elise, unlike Alice in that moment, knows who she is. Elise is confident in her muchness. And she is willing to share.
Saturday, September 24, 2011
Linkity Split Day
Gorgeous Truth!! LOVED this research!!
http://www.sacbee.com/2011/09/21/3927130/parents-siblings-and-people-with.html
Break your heart...Pray for this boy!!
http://www.americanthinker.com/2011/09/handicapped_kidsbetter_off_dead.html
My friend, Shonda Caines, is applying for a mini grant. Please do her a favor and vote for her. It only takes a few seconds and you only get to vote once!! Totally painless!
http://www.weareteachers.com/ideas/partnerask/teachingidea?app=16377&grantId=68
This week is Mitochondrial Disease Awareness Week, I'm a little late, as I was away from my computer this week....but please educate yourself on Mito...This is for Elise's very best friend, Megan...and all those fighting this brutal one!!
http://www.umdf.org/site/c.otJVJ7MMIqE/b.5692879/k.3851/What_is_Mitochondrial_Disease.htm
I hate the loose morals of Glee, but have LOVED Becky!!!
http://www.unitedmedianow.com/news/how-glee-saved-down-syndrome/
Good one!
http://www.unitedmedianow.com/news/im-sorry-we-have-to-kill-you/
http://www.sacbee.com/2011/09/21/3927130/parents-siblings-and-people-with.html
Break your heart...Pray for this boy!!
http://www.americanthinker.com/2011/09/handicapped_kidsbetter_off_dead.html
My friend, Shonda Caines, is applying for a mini grant. Please do her a favor and vote for her. It only takes a few seconds and you only get to vote once!! Totally painless!
http://www.weareteachers.com/ideas/partnerask/teachingidea?app=16377&grantId=68
This week is Mitochondrial Disease Awareness Week, I'm a little late, as I was away from my computer this week....but please educate yourself on Mito...This is for Elise's very best friend, Megan...and all those fighting this brutal one!!
http://www.umdf.org/site/c.otJVJ7MMIqE/b.5692879/k.3851/What_is_Mitochondrial_Disease.htm
I hate the loose morals of Glee, but have LOVED Becky!!!
http://www.unitedmedianow.com/news/how-glee-saved-down-syndrome/
Good one!
http://www.unitedmedianow.com/news/im-sorry-we-have-to-kill-you/
Friday, September 23, 2011
Why Cancer Can Be Sweet #3 - Beautiful Feet
The third reason cancer can be sweet is the allowance to see people look past themselves. To give.
There is a lot of push these days for the government to step in and take care of those in need. I am not going to get into a lot of political discussion, but I will say, I think that short circuits people's desire to take care of others. People like to DO things for those in need, as evidenced by crisis situations...
When there is something REALLY not a part of the day to day, people feel helpless. The evidence of their humanity and frailty is truly visible. And most people will wrap those vulnerable with generosity and a closing of the ranks around them. To protect. It is a beautiful thing.
Cancer was sweet because I learned about these givers. I saw those who fed our bodies and our hearts. I saw those who gave us the time to run to the store. I saw those who would go on milk runs especially for us when Elise's ability to fight infection was nil and we couldn't go out. We were given financial help for the surprise expenses in gas and parking passes... I learned who my true friends were. I learned who loved others more than themselves. I learned who carries God's love to others. And I learned just how important that really is.
I received notes from churches who had prayer requests and took them seriously. We received notes from a particular church (not even ours!) who prayed for people every week and sent a post card or note telling you that you were prayed for. We received one to three cards every single week for 7 months. I know not one single person whose note told us that they had prayed for Elise or our family, but I am forever grateful for them. I received notes and emails from people telling me that my child would be wrapped in prayer. I have them all still.
I got personal phone calls from our pharmacy who worried when we were late to collect Elise's "home" medicines when she was still fighting infection and couldn't get released from the hospital yet. And you could actually hear their relief in their voices when they heard that everything was still okay.
I admit I received stilted phone calls from friends who were audibly uncomfortable with our not-perfect life...who never returned...but more often, I received phone calls from new and old friends that balanced between listening to the awful and not shying away and those giggled over our new somewhat funny situations. We would laugh about nurse practitioners who were crazy and the fact that we went to the library that day. And they managed to share just enough of their life that that they shared their normal, and didn't rub it in. I got "new" friends out of it. Nurses, other parents, and acquaintances that reached out to become true friends.
In a nutshell we got to Christ's body at work. Being hurting and vulnerable was truly worth it to see this miracle! We got to see HIM up close in this manner and He was beautiful!
There is a lot of push these days for the government to step in and take care of those in need. I am not going to get into a lot of political discussion, but I will say, I think that short circuits people's desire to take care of others. People like to DO things for those in need, as evidenced by crisis situations...
When there is something REALLY not a part of the day to day, people feel helpless. The evidence of their humanity and frailty is truly visible. And most people will wrap those vulnerable with generosity and a closing of the ranks around them. To protect. It is a beautiful thing.
Cancer was sweet because I learned about these givers. I saw those who fed our bodies and our hearts. I saw those who gave us the time to run to the store. I saw those who would go on milk runs especially for us when Elise's ability to fight infection was nil and we couldn't go out. We were given financial help for the surprise expenses in gas and parking passes... I learned who my true friends were. I learned who loved others more than themselves. I learned who carries God's love to others. And I learned just how important that really is.
I received notes from churches who had prayer requests and took them seriously. We received notes from a particular church (not even ours!) who prayed for people every week and sent a post card or note telling you that you were prayed for. We received one to three cards every single week for 7 months. I know not one single person whose note told us that they had prayed for Elise or our family, but I am forever grateful for them. I received notes and emails from people telling me that my child would be wrapped in prayer. I have them all still.
I got personal phone calls from our pharmacy who worried when we were late to collect Elise's "home" medicines when she was still fighting infection and couldn't get released from the hospital yet. And you could actually hear their relief in their voices when they heard that everything was still okay.
I admit I received stilted phone calls from friends who were audibly uncomfortable with our not-perfect life...who never returned...but more often, I received phone calls from new and old friends that balanced between listening to the awful and not shying away and those giggled over our new somewhat funny situations. We would laugh about nurse practitioners who were crazy and the fact that we went to the library that day. And they managed to share just enough of their life that that they shared their normal, and didn't rub it in. I got "new" friends out of it. Nurses, other parents, and acquaintances that reached out to become true friends.
In a nutshell we got to Christ's body at work. Being hurting and vulnerable was truly worth it to see this miracle! We got to see HIM up close in this manner and He was beautiful!
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