After more than 10 weeks - most of it spent in the PICU, little Charity is home with her family. Thanks to all who joined me in praying for her and her family. She truly is a miracle child!
Wednesday, June 17, 2009
Charity Update
After more than 10 weeks - most of it spent in the PICU, little Charity is home with her family. Thanks to all who joined me in praying for her and her family. She truly is a miracle child!
America's Rockin' Roller Coast
Time for our annual 'pilgrimage' to Cedar Point in Sandusky, OH.
Yes, those are my girls in the front row of the coaster - the best seat for every coaster they ride and they rode them all! We ran from coaster to coaster from the time they let us in until our energy was zapped. At one point, we stopped to admire a really cool looking t-shirt and R got a little upset with us -- "Focus people, we've got coasters to ride."
I am not a coaster person but I do love to watch my family have fun. This is my kind of ride...and I don't tolerated it very well now that I am getting on in years:
When we first started going to Cedar Point, it was very difficult for me to let Miss R ride the big coasters. I was very worried about her safety and the level of difficulty some rides have for securing the rider. Well, let me tell you she has absolutely no problem securing herself and I am no longer anxious when she runs off to get in line. Coasters are another opportunity to promote independence!
Ride on!
Yes, those are my girls in the front row of the coaster - the best seat for every coaster they ride and they rode them all! We ran from coaster to coaster from the time they let us in until our energy was zapped. At one point, we stopped to admire a really cool looking t-shirt and R got a little upset with us -- "Focus people, we've got coasters to ride."
I am not a coaster person but I do love to watch my family have fun. This is my kind of ride...and I don't tolerated it very well now that I am getting on in years:
When we first started going to Cedar Point, it was very difficult for me to let Miss R ride the big coasters. I was very worried about her safety and the level of difficulty some rides have for securing the rider. Well, let me tell you she has absolutely no problem securing herself and I am no longer anxious when she runs off to get in line. Coasters are another opportunity to promote independence!
Ride on!
Tuesday, June 9, 2009
Guess Who is Going...
To the Anglican Church in North America Assembly?
My oldest, K, will be the youth delegate for our diocese! She will be flying to the Dallas/Ft. Worth area (without me!) later this month to make history as the new province is launched.
The Anglican Church in North America unites some 100,000 Anglicans in 700 parishes in the U.S. and Canada into a single church after decades of error in The Episcopal Church caused the church to split.
The new church is primarily made up of two populations - Evangelicals and Anglo-Catholics. Here you find commentary from a representative of each group:
An Anglo-Catholic View
An Evangelical View
K is very excited and pouring over the Constitutions and Canons. I know she will work hard and represent us well!
My oldest, K, will be the youth delegate for our diocese! She will be flying to the Dallas/Ft. Worth area (without me!) later this month to make history as the new province is launched.
The Anglican Church in North America unites some 100,000 Anglicans in 700 parishes in the U.S. and Canada into a single church after decades of error in The Episcopal Church caused the church to split.
The new church is primarily made up of two populations - Evangelicals and Anglo-Catholics. Here you find commentary from a representative of each group:
An Anglo-Catholic View
An Evangelical View
K is very excited and pouring over the Constitutions and Canons. I know she will work hard and represent us well!
The Greatest Show On Earth
We've been busy enjoying family life since Deacon Daddy graduated from seminary. The Ringling Brothers and Barnum & Baily Circus was recently in town were and we were Circus Celebrities!
We had front row, center-ring seats. Circus celebrities get to ride around the floor for several acts and schmooze with the ringmaster.
R's favorite acts -- anything up in the air...
and the clowns!
It did take some time for R to get used to the noise level. The circus is so loud! Many children with Down syndrome (Ds) have sensory issues and Miss R does not enjoy loud events - even at 14. Today her sensory issues are so much better than when she was younger. During her early years it was impossible to take her to a movie - now she enjoys them. She watches TV with the sound low. Its only when she listens to CDs or her own personal DVD player with headphones does she listen with the volume up. I've always been very grateful that R has no hearing issues like many children with Ds. In fact, she hears better than her typically developing sister with selective hearing!
Poor K was not able to attend the circus with us. She was off to a Happening weekend - her fourth I think. She loves the Happening experience and is committed to being involved for as long as she can.
I had not heard of Happening until becoming Anglican. Happening is a weekend where participants (usually teens but adults can also participate) experience the love of our Lord as shown through the sacraments and the ministry of fellow students, clergy, and lay adults. Those who attend Happening are encouraged to take their faith back into the world to make a friend, be a friend, and introduce a friend to Christ. For those of the Roman Catholic tradition is is similar to Teens Encounter Christ.
We had front row, center-ring seats. Circus celebrities get to ride around the floor for several acts and schmooze with the ringmaster.
R's favorite acts -- anything up in the air...
and the clowns!
It did take some time for R to get used to the noise level. The circus is so loud! Many children with Down syndrome (Ds) have sensory issues and Miss R does not enjoy loud events - even at 14. Today her sensory issues are so much better than when she was younger. During her early years it was impossible to take her to a movie - now she enjoys them. She watches TV with the sound low. Its only when she listens to CDs or her own personal DVD player with headphones does she listen with the volume up. I've always been very grateful that R has no hearing issues like many children with Ds. In fact, she hears better than her typically developing sister with selective hearing!
Poor K was not able to attend the circus with us. She was off to a Happening weekend - her fourth I think. She loves the Happening experience and is committed to being involved for as long as she can.
I had not heard of Happening until becoming Anglican. Happening is a weekend where participants (usually teens but adults can also participate) experience the love of our Lord as shown through the sacraments and the ministry of fellow students, clergy, and lay adults. Those who attend Happening are encouraged to take their faith back into the world to make a friend, be a friend, and introduce a friend to Christ. For those of the Roman Catholic tradition is is similar to Teens Encounter Christ.
Sunday, May 31, 2009
Carnivals of the Church Year - Pentecost
The Pentecost Carnival is up!
Please go visit Jessica at Homemaking Through the Church Year to read all the great contributions!
Friday, May 29, 2009
Pentecost - Prayer to the Holy Spirit
Prayer to the Holy Spirit
Saint Augustine of Hippo
Breathe in me, O Holy Spirit, that my thoughts may all be holy.
Act in me, O Holy Spirit, that my work, too, may be holy.
Draw my heart, O Holy Spirit, that I love but what is holy.
Strengthen me, O Holy Spirit, to defend all that is holy.
Guard me, then, O Holy Spirit, that I always may be holy.
Amen.
Photo Credit
Thursday, May 28, 2009
Carnivals of the Church Year - Pentecost
Pentecost is approaching rapidly and my thoughts drift to the power of the Holy Spirit as displayed in my life. Those of us who worship in liturgical churches celebrate Pentecost, the birth of the early Church at the descent of the Holy Spirit after the ascension of Jesus. What follows Pentecost is known as Ordinary Time or the Pentecost Season. Ordinary Time is my favorite season of the church year. Some might think it is boring with no major feasts like Christmas and Easter but I love the stability of Ordinary Time. I love the focus on the work of the Holy Spirit in our daily lives.
The Holy Spirit is known by many names: Author of Scripture, Comforter, Convicter of Sin, Guide, Indweller of Believers, Intercessor, Revealer/Spirit of Truth, Spirit of God, Spirit of Life, Teacher, Witness etc. All are made known in Holy Scripture and related to His function or His ministry on earth. His breadth and depth are for us to discover and inwardly know -- and respond to -- as we move through our lives. We are sealed by the Holy Spirit in Baptism and marked as Christ's own. It is our duty to respond the Holy Spirit working in our lives and make Him known to all!
The Holy Spirit in Times of Deep Personal Crisis
When I look back at the most difficult time in my life, I find the time I truly discovered the depth of the power of the Holy Spirit. During this time I found a strength that did not come from me - it could only come from an almighty triune God through the Holy Spirit. As a mother anticipating the impending death of her beloved child, I was filled with a deep, searing pain beyond description. As I watched and supported my daughter, Michelle, as she suffered a slow, excruciating death and I knew deeply and profoundly that the Lord was always near and that the power of the Holy Spirit would fill me with the strength I needed to support her through her suffering and passing -- and never leave me as I grieved her loss.
Today, I live in awe – total, absolute amazement and wonder of God’s work on earth through the power of the Holy Spirit. I am humbled by the knowledge that He dwells in me - a lowly sinner who struggles and stumbles when I don't turn to God first. I am grateful for that God infused strength I know to get me through the hardest thing any parent can do - witness the suffering and death of a child...and then learn to live without the child. The strength I had during that time was truly miraculous because all I really wanted to do was selfishly lie down and die with her. I understood though, that this life wasn't really mine, but His and to be lived to glorify Him with the gifts He bestowed on me. It is my hope that I glorified Him during the deepest crisis of my life.
The Holy Spirit in More Ordinary Times
My life, for the last few years, has been chaotic to say the least. It has not been easy dividing my time between seminary and home, homeschooling my children, and giving my time and talents to the Church in a difficult political climate. I could go on and on about what has filled my hours but ultimately what it comes down to is weariness. I’ve been in survival mode for quite a long time. This is definitely not the hardest period of time in my life but it has been difficult. I freely confess my knowledge that I did not do this alone. I did it with help, for my weariness runs deep. It is only by the grace of God and the power of the Holy Spirit we not only did this but did it well! Despite the weariness, I know joy and peace because of our obedience - conforming our lives to what God has willed for us. I know a new sense of trust – trust that God has a plan and I must wait for His timing. I will know it on His time, not mine. I can rest and not worry about the details, for the details are not mine to worry about.
Every day I wake up with a grateful heart knowing God has a plan for me whether it be in my own home supporting my husband, raising and educating our children and/or out in the community. I take comfort in the power of the Holy Spirit to guide and direct me, to give me the words I need to deal with two adolescent daughters – one with significant special needs, to deal with my extended family’s ongoing crisis state, to laugh and cry with my friends as we all make our way through this earthly life. I know in a profound sense that I am never alone and He will give me what I need to sustain me and give my best, through His grace and strength, to those who travel with me on this earthly journey.
Please visit Jessica at Homemaking Through the Church Year for Carnivals of the Church Year - Pentecost.
Wednesday, May 27, 2009
Asking for prayer....
Remember Charity? She has had quite a bumpy road to recovery. Charity is having major reconstructive surgery tomorrow on her trachea. Please remember her, her family and all who care for her in your prayers.
More DownsEd Materials...
Available online for free!
Social Development for Individuals with Down Syndrome - An Overview
Motor Development for Individuals with Down Syndrome - An Overview
These materials are packed with useful information for the parents of kiddos with Down syndrome!
Social Development for Individuals with Down Syndrome - An Overview
Motor Development for Individuals with Down Syndrome - An Overview
These materials are packed with useful information for the parents of kiddos with Down syndrome!
Pentecost Blog Carnival
Coming soon as a part of Carnivals of the Church Year is looking for submissions.
This carnival is hosted this year by Jessica of Homemaking Through the Church Year and next year by Kerry of A Ten O'Clock Scholar
I'm so far behind in real life that I doubt I will participate though I have many lovely ideas but try to send in your submissions by Friday!
This carnival is hosted this year by Jessica of Homemaking Through the Church Year and next year by Kerry of A Ten O'Clock Scholar
I'm so far behind in real life that I doubt I will participate though I have many lovely ideas but try to send in your submissions by Friday!
A Crazy Month...
Filled with many blessings--one of which was my birthday! It doesn't bother me to grow older. Some wrinkles and and a few extra pounds don't bother me much though I would love to lose some weight to feel healthier. With every year I know more peace and fuller joy. My life is filled with so many blessings and my heart is so thankful.
My birthday was awesome! K baked me a wonderful cake inspired by a dessert we like at The Bubble Room in Captiva, Florida.
Orange Crunch Cake
Adapted from All Recipes
Ingredients
1 cup graham cracker crumbs
1/2 cup brown sugar
1/2 cup walnuts, chopped
1/2 cup butter, softened
1 (18 1/4 ounce) yellow cake mix
1/2 cup water
1/2 cup orange juice
1/3 cup vegetable oil
3 eggs
2 tablespoons orange zest, grated
2 (16 ounce) can vanilla frosting
3 tablespoons orange zest, grated
1 teaspoon lemon zest, grated
Directions
Preheat oven to 350.
Grease and flour two 9-inch pans.
Crunch Layer
Combine the graham cracker crumbs, brown sugar, walnuts, and butter. Divide mixture evenly between the prepared pans. Set aside.
Cake
In a medium bowl, mix together cake mix, water, orange juice and oil until blended.
Beat in eggs, one at a time, then stir in the orange zest.
Pour mixture evenly over the crunch layer in the pans.
Bake in a preheated oven for 30 minutes or until a toothpick inserted into the center of the cake comes out clean.
Allow to cool for 10 minutes, then invert onto a wire rack and cool completely before frosting.
Frosting
In a medium bowl, beat the vanilla frosting until light and fluffy. Add food coloring for orange color.
Stir in the orange and lemon zest.
Assembly
Place one layer on cake plate, crunch side up, frost. Place second layer crunch side up and frost on top and sides.
Refrigerate.
Yummy and quite worth the effort! Thanks to my thoughtful, sweet daughter!
Among my gifts:
A Blackberry! And...Blackberry For Dummies They know me too well :-)
My birthday was awesome! K baked me a wonderful cake inspired by a dessert we like at The Bubble Room in Captiva, Florida.
Orange Crunch Cake
Adapted from All Recipes
Ingredients
1 cup graham cracker crumbs
1/2 cup brown sugar
1/2 cup walnuts, chopped
1/2 cup butter, softened
1 (18 1/4 ounce) yellow cake mix
1/2 cup water
1/2 cup orange juice
1/3 cup vegetable oil
3 eggs
2 tablespoons orange zest, grated
2 (16 ounce) can vanilla frosting
3 tablespoons orange zest, grated
1 teaspoon lemon zest, grated
Directions
Preheat oven to 350.
Grease and flour two 9-inch pans.
Crunch Layer
Combine the graham cracker crumbs, brown sugar, walnuts, and butter. Divide mixture evenly between the prepared pans. Set aside.
Cake
In a medium bowl, mix together cake mix, water, orange juice and oil until blended.
Beat in eggs, one at a time, then stir in the orange zest.
Pour mixture evenly over the crunch layer in the pans.
Bake in a preheated oven for 30 minutes or until a toothpick inserted into the center of the cake comes out clean.
Allow to cool for 10 minutes, then invert onto a wire rack and cool completely before frosting.
Frosting
In a medium bowl, beat the vanilla frosting until light and fluffy. Add food coloring for orange color.
Stir in the orange and lemon zest.
Assembly
Place one layer on cake plate, crunch side up, frost. Place second layer crunch side up and frost on top and sides.
Refrigerate.
Yummy and quite worth the effort! Thanks to my thoughtful, sweet daughter!
Among my gifts:
A Blackberry! And...Blackberry For Dummies They know me too well :-)
Saturday, May 16, 2009
The Class of 2009
at Nashotah House Theological Seminary:
My hubby graduated cum laude - not bad for an old guy :-)
Everyone is asking me what they should call him and in what order. Reverend? Doctor? Captain (USN)?
I laugh and say - just call him Frank. I have to live with this guy!
My hubby graduated cum laude - not bad for an old guy :-)
Everyone is asking me what they should call him and in what order. Reverend? Doctor? Captain (USN)?
I laugh and say - just call him Frank. I have to live with this guy!
Monday, May 11, 2009
On the Road
Our road trips are never boring. Traveling home we stalked a semi carrying this load:
And no, I would never take pictures out the window barreling down I-75.
I just can't understand why this one is so blurry but it has a haunting look to it
From a distance I thought we were following a statue of Jesus but as we got closer I just wasn't sure. What do you think?
A little closer to home on I-57 in Effingham, IL we passed this:
We decided to stop for a closer look
More information about The Cross
And no, I would never take pictures out the window barreling down I-75.
I just can't understand why this one is so blurry but it has a haunting look to it
From a distance I thought we were following a statue of Jesus but as we got closer I just wasn't sure. What do you think?
A little closer to home on I-57 in Effingham, IL we passed this:
We decided to stop for a closer look
More information about The Cross
Saturday, May 9, 2009
Reading is cool...
At the beach--
And at the pool.
One is reading Jane Eyre and the other is reading...well, SpongeBob. Whatever it takes to keep her motivated to read and grow her skills I will use to her benefit!
And at the pool.
One is reading Jane Eyre and the other is reading...well, SpongeBob. Whatever it takes to keep her motivated to read and grow her skills I will use to her benefit!
Thursday, May 7, 2009
The Beauty in God's Creation
Takes my breath away every evening here in my little piece of paradise. To my delight, we observed a green flash (a fairly unusual event that occurs as the sun sets) this week. I tried to capture it on camera without success so this beauty will have to do!
Sunset at the north end of Captiva Island at Redfish Pass.
Sunset at the north end of Captiva Island at Redfish Pass.
Tuesday, May 5, 2009
Voted Best Pool...
of the trip - the place with the water slides! This is both girls leaving the slides at the same time. I can't tell you how much practice this shot took but no one seemed to mind.
R is having the time of her life - her joy is contagious!
A little sand fun to bring a smile to your world:
From K
and R
Yes, this is the life...
R is having the time of her life - her joy is contagious!
A little sand fun to bring a smile to your world:
From K
and R
Yes, this is the life...
Monday, May 4, 2009
Blogging in the Pink, A Woman's Guide...
Just thought I would let you know I loved the e-book by Michelle Mitchell of Scribbit, Motherhood in Alaska called Blogging the in Pink: A Woman's Guide!
There is so much left unsaid about the blogosphere but Michelle says it all in her book quite clearly and succinctly. I follow several bloggers whose business is to share blogging tips but this book really puts what blogging is all about in one place and gives the big picture in baby steps..and its free! The dos and don'ts alone are priceless
I've printed it out to read again - always a sign of something good in my eyes. Thanks, Michelle, for all your hard work!
Friday, May 1, 2009
If You Love Someone with Down Syndrome
My friend, Amy at A Redeemed Sheep, has some free blog buttons on her blog. I can't decide between them...
Tuesday, April 28, 2009
This Is The Life...
IF you are a kid. We're on the road - traveling from pool to pool:-)
What you don't see in this photo is K, poolside with the laptop (I know), and me reading an e-book written by Michelle Mitchell of Scribbit, Motherhood in Alaska called Blogging the in Pink: A Woman's Guide.
When I jumped into the blogosphere, I had NO clue as to what I was doing. I found some wonderful support in a very short time for which I'll always be grateful. Much I learned about blogging I learned the hard way but you don't have to! If you are new to the blogoshpere or want to improve your blog/blogging than this book is for you! It speaks to so many things that come with blogging - HTML, social networking, blogging manners (courtesy, reciprocating), growing your blog, making money from your blog...and on and on! Oh, and its free to download from Michelle's site, Scribbit, Motherhood in Alaska!
I really do love spring road trips. I spend a great deal of time reading when I'm not driving - my favorite thing to do! All of my favorite spring flowering trees are in their glory. From north to south - crabapples, redbuds, dogwoods, magnolias - making all this driving delightful!
Now to go settle in with my book!
H/T to Renna at Finding My Knitch for the book link. Thanks Renna!
What you don't see in this photo is K, poolside with the laptop (I know), and me reading an e-book written by Michelle Mitchell of Scribbit, Motherhood in Alaska called Blogging the in Pink: A Woman's Guide.
When I jumped into the blogosphere, I had NO clue as to what I was doing. I found some wonderful support in a very short time for which I'll always be grateful. Much I learned about blogging I learned the hard way but you don't have to! If you are new to the blogoshpere or want to improve your blog/blogging than this book is for you! It speaks to so many things that come with blogging - HTML, social networking, blogging manners (courtesy, reciprocating), growing your blog, making money from your blog...and on and on! Oh, and its free to download from Michelle's site, Scribbit, Motherhood in Alaska!
I really do love spring road trips. I spend a great deal of time reading when I'm not driving - my favorite thing to do! All of my favorite spring flowering trees are in their glory. From north to south - crabapples, redbuds, dogwoods, magnolias - making all this driving delightful!
Now to go settle in with my book!
H/T to Renna at Finding My Knitch for the book link. Thanks Renna!
Friday, April 24, 2009
Another Missy Funny
The conversation went like this:
Me: "Its time for your bath."
R (14 y.o. with Down syndrome) scowling: "Don't ever say that 'B' word in front of me again."
Me: "You're too funny, Missy"
R - hands on hips: "I'm not funny - I'm VERY serious. The 'B' word is my enemy."
I'm beginning to see a pattern here as I watch the enemies list grow longer....
Perhaps personal hygiene has become an issue. Nothing that can't be dealt with though.
Oh, and she now hates it when I call her Missy. I guess I'll stop adding fuel to theraging hormonal state fire by using the nickname I've used for her since she was a very sweet newborn.
Me: "Its time for your bath."
R (14 y.o. with Down syndrome) scowling: "Don't ever say that 'B' word in front of me again."
Me: "You're too funny, Missy"
R - hands on hips: "I'm not funny - I'm VERY serious. The 'B' word is my enemy."
I'm beginning to see a pattern here as I watch the enemies list grow longer....
Perhaps personal hygiene has become an issue. Nothing that can't be dealt with though.
Oh, and she now hates it when I call her Missy. I guess I'll stop adding fuel to the
Saturday, April 18, 2009
Thursday, April 16, 2009
Online DownsEd Materials
The Down Syndrome Educational Trust in Great Britain is putting its Down Syndrome Information and Issues series online!
So far, they have put their number skills booklets online along with their speech and language development booklets.
I purchased this series years ago and spent a fortune - especially on shipping and VAT from Great Britain. I guarantee you will find excellent, helpful information in this series for homeschooling a child with Down syndrome and its FREE! Just download the appropriate age group and/or read ahead!
So far, they have put their number skills booklets online along with their speech and language development booklets.
I purchased this series years ago and spent a fortune - especially on shipping and VAT from Great Britain. I guarantee you will find excellent, helpful information in this series for homeschooling a child with Down syndrome and its FREE! Just download the appropriate age group and/or read ahead!
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