Seventeen

Happy Birthday Reagan!

What an amazing journey!

How blessed I am to walk alongside this young lady...

Every day I know unconditional love 

and
 

Joy beyond comprehension

Thank you Father for this gift

Know widely as your messenger here on earth

She draws others like a magnet to Your promises

Pointing all to Your heavenly kingdom

Where peace,  love and joy flow freely

To know her is to know You better

I'm honored to be her mom

Lent

Lent is here and I am not.

I mean to say I have planned well for Lent. I have my devotionals, my Bible reading schedule, I am fasting and I am giving more in areas that I have found lacking.

It is a good thing that God knows my heart and whispers in my ear those places which need work. Charity is the word he has given me this Lent.

Charity as a virtue is love.

" Charity - An unlimited loving-kindness towards all others, is held to be the ultimate perfection of the human spirit, because it is said to both glorify and reflect the nature of God. In its most extreme form such love can be self-sacrificial. Confusion can arise from the multiple meanings of the English word "love." The love that is caritas is distinguished by its origin, being Divinely infused into the soul, and by its residing in the will rather than emotions, regardless of what emotions it stirs up. This love is necessary for salvation, and with it no one can be lost."


"Charity is comprised two parts, love of God and love of man, which includes both love of one's neighbor and one's self."

BUT, I am a mother who is distracted by my daughter's upcoming procedure. Reagan is getting a new pacemaker on Friday. I am distracted by my own anxiety. In the scheme of things this is not a big deal. But it is a big deal for me and a very big deal for Reagan.

Reagan is used to procedures. They are a part of her life...and I really hate that part.

The part of her life which steals normalcy from us.

So, I am working very hard on charity as one of my Lenten devotions. I'm sure God means to stretch me well during this relatively minor procedure and inpatient stay in the hospital. I am going to choose charity as we move through this. I know I am going to be challenged greatly but with God I can do all things as long as I keep my eyes focused on Jesus and my heart fixed on heaven.

...and then Lent will truly begin for me.

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My Sabbatical from Blogging...

Is it over? How do you return from 9 months without making a post with significant content? I guess you just jump right in...

I think putting together my ebook, Homeschooling Children with Down Syndrome met a personal goal of mine - to share what I have learned on this journey. It has been my ministry for over a decade to share and mentor others on a similar path. I know there is much more to come on this journey. More that isn't shared freely in the blogosphere. There are very few bloggers with teens or adults with Down syndrome sharing their journeys.

Over the last 9 months we have traveled extensively and met many wonderful people. Reagan has a way of attracting the most incredible people into our lives. She exudes an unconditional love for others - she blesses and we are all blessed. She has matured so much in the last year. She is quite independent and even a little sassy. I have to say her adolescence has been fairly easy but then both of my girls have been easy as far as our relationships go. The closeness we enjoy as a homeschooling family and the mutual respect for each other made what are usually difficult times in a family just an age and a stage.

In the fall, my oldest left for college. Kiera is attending a small Christian school near Chicago as a biology major. She has adjusted quite well to life at college - even made the Dean's list! I am so proud of this young lady! Homeschooled through high school and a success in the competitive world of college!

Reagan misses her sister dearly. As hard as it is for me to let go, it has been much more difficult for Reagan. The tears still flow freely and frequently - she knows things will never be the same...

Our local homeschooling children with special needs support group. Special Needs, Unique Challenges, has become more active. We have been trying to meet monthly for a mom's night out this school year. The weather has interfered greatly this winter though. We have had the snowiest winter I can recall!

We are serving two small rural churches. Our parish families have blessed us immensely. Until now, I had not known a parish family so united in their love for the Lord that it is almost palpable. The serve the Lord and each other...and love my family. Here, we do not just go to church - we belong. If you have a child with special needs, you know how rare this is!

We have a new Bishop with exciting plans for the future. While our buildings and property are being threatened with lawsuits from The Episcopal Church, our Bishop has a vision for our future. A future where buildings and property are only things. The mission of the church will continue on without those things if necessary.

I have been named Diocesan Coordinator for those with special needs. A coordinator grows ministry within our Diocese. I am busy at work trying to define this new ministry and set goals for our team. It is a very exciting time for me. At times, anxiety creeps in. Am I the right person for this job? Do I have the skills to grow this ministry? Do I have the time and energy? But then I remember - God doesn't call the equipped, He equips those who are called!

Reagan will have surgery soon. She will have a new pacemaker put in. This pacemaker will pace both her ventricles - an added safety measure since she has no underlying heart rhythm. Complete heart block was a complication from her original open heart surgery, repair of AVSD, as an infant.

A brief update on a snowy day. My life is much fuller than I can describe in this space. Blizzard warning here - expecting 20 inches of snow with white-out conditions. I don't expect to be plowed out until Friday. Really. And I don't mind. I have a well-stocked pantry and freezer. The generator has had a recent tune-up. I have a pile of books waiting for me along with a nice warm blanket.

So, let the snow fall and the wind blow. I'm going to enjoy this day!

Not what I asked for...

Disaster fans:



I don't know what their real name might be but I call them disaster fans. Do you know how LOUD these things are?

Something about a broken gasket in the overflow drain in the upstairs bathtub.

I won't show you the bowed ceiling that is now cracked and stained in the great room.

The same ceiling I just finished painting.

My in-laws and father arrive tomorrow for the holidays.

I choose to look on the bright side - it looks like I'm getting a new ceiling for Christmas!

Once a Year Treat...

My family can't get enough of these:



I was dismayed at the price of pumpkins this year in our area. I could not find pumpkins for under $6.00 a piece - shocking! Especially when we live near the pumpkin capital of the world. So, I settled for only two pie pumpkins this year - just enough for the holiday pies at $1.50 a piece.

After roasting the pumpkins, I salvage the seeds for our special yearly treat. Yes, its messy and time consuming but everyone looks forward to roasted pumpkin seeds. After cleaning the pulp off the seeds, I soak them in salt solution for an hour or so. Next drain, add a tiny bit of oil and seasonings. This year I used salt, garlic powder and cayenne pepper. Into a 325 degree oven for 25-30 minutes, turning every 10 minutes.

My family couldn't be happier!

Never Thought the Day Would Come....

And neither did Reagan.



Hanging on for dear life because Kiera is driving!



Kiera is an interesting young lady for many reasons - one of which is her lack of desire to obtain a driver's license. Living in two states for a few years has meant that we put off finding a program to teach her to drive. The time has finally come - doesn't she look confident behind the wheel?

Now, to work on Reagan's anxiety. We'll talk about my feelings of impending doom as a passenger in the car anxiety another day...

Foodie?

I guess I've not thought about what the term foodie means. When I saw this sign on a recent trip to Cincinnati, OH, I knew it was speaking of me! I cannot visit Cincinnati without making a stop at Jungle Jim's International Market.

Jungle Jim's is a self-described theme park for foodies. For someone like me, hailing from a small town where grocery stores are of the large chain variety with not a lot of imagination, a trip to Jungle Jim's sends thrills up and down my spine! I guess I am a foodie.

Jungle Jim's is a funky place. Surprises abound. It is NOT your usual marketplace! Ever seen a boat in the produce section?



Or the fish market underneath a shop-lined boardwalk?



Jungle Jim's boasts of "offering 150,000 different items from over 75 countries." Some of it is quite exotic. This fruit, durian, looked very interesting to my girls.



I'm so glad we didn't satisfy our curiosity and purchase the durian for a snack later. I understand the smell is offensive despite the savory to slightly sweet (depending on the variety) creamy flesh. In certain parts of Asia the fruit is banned in public places and can draw people dressed in hazmat suits to remove the odorous fruit from hotel rooms!

Ah, the dangers of living a foodie life...

Ordination to the Sacred Order of Priests

I really did not know what to expect while awaiting hubby's ordination to the priesthood. I had attended many ordinations - all quite moving but to see one's husband ordained was a totally different experience.

As I entered the church to find hubby with others gathered around him in prayer:














It was quite apparent to me that the Holy Spirit was powerfully present. I was so moved that I really didn't think I could remain functional for the next 2 hours. But, of course, I did with God's help.


















Smells and bells abound.













Fully priested.


It was a glorious day surrounded by the Holy Spirit, family and friends. Now on to do God's work for His Holy Church!

What a Busy Summer...

Now that our guests have all gone home after hubby's ordination, I hope to catch up with my blogging. The summer is flying by and it has been packed with once in a life time events.

I've hardly seen Kiera this summer. Between social activities, babysitting (her summer job), Happening, Church Camp, St. Michael's Conference, and the ACNA Asssembly I only get bits and pieces of time with her. She has made lots of memories this summer!

Here are a few pictures of Kiera with some old and new friends at the ACNA Assembly:














She's been invited to Kenya to visit Archbishop and Mrs. Nzimbi.














Here she is with Archbishop Robert Duncan of the ACNA.















And with an old, dear friend, Bishop Ackerman, retired Bishop of Quincy.

Her days were filled with duties as the youth delegate from our diocese. Evenings were filled with worship and fun with the youth attending the Assembly.

These are very exciting times - filled with hope for our young orthodox Anglicans. I hope and pray for my children (and future grandchildren) a place to worship, safe from the rampant heresy and secular humanism found in the post-modern culture that exists today. Kiera has had the opportunity to be a part of history in the making as the Anglican Church in North America seeks its place in the world-wide Anglican Communion. What a bright future awaits her and all those young people she met at the Assembly...young people who are on fire for the Lord and seek to bring others to Christ!

Church Camp '09

Was an amazing experience!















Church camp has become a place where Reagan is supported and loved for who she is - unrelated to her enhanced genetic material.

We were blessed with bright sunny days filled with all the usual camp activities and cool summer evenings - perfect for campfire chats with prayer time and roasting marshmallows. Campers and counselors were vying for Reagan's attention to the point where I was told on more than one occasion "you have her all the time, its my turn." How my heart did soar to know that she is so loved, valued and respected!















Reagan was given a great honor this year at camp. Each year 2 children are chosen based on their Christian leadership and behavior to carry a wooden cross to lead the camp session into the final Mass. Reagan was chosen to lead the group this year - a mark of how she loves and lives her life in Christ. Down syndrome comes with many gifts, most notably unconditional love and a deeply caring heart. If only the rest of the world would take the time to look beyond her appearance and appreciate her gifts...

Please take the time to read this essay by Dennis McGuire, Ph.D., If People with Down Syndrome Ruled the World - an inspirational look into life and people with Down syndrome. What a wonderful world it would be and its all mine!

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!

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.

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 :-)

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!

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

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!

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.

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...

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!

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 the raging hormonal state fire by using the nickname I've used for her since she was a very sweet newborn.