Thursday, July 8, 2010
Support Group for Teen and Young addults with CVID or PIDD
Common Ground This is a wonderful support group site
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Donetta
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7:50 AM
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Labels: Community Service
IVIG Demonstration Project Bill Introduced WE NEED YOUR HELP TODAY!
Action Alert
Please contact your congressman here this is an easy fill in the blanks form to help those of us with CVID to get the home nursing care associated with the infusions that protect our lives. As of now the nursing is not covered and IVID need to be giving in an in home setting to protect PIDD and CVID patients from infectious illness if we were to go to a public facility at the very moments we are most vulnerable to catching them.
Thank you for supporting those children and adults who lack immunity from these genetic disorders.
Posted by
Donetta
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7:35 AM
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Labels: Community Service
Tuesday, July 6, 2010
Inherited Common variable immunodeficiency (CVID) first infution
Posted by
Donetta
at
7:57 PM
6
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Labels: Medical
A wonderful 4th filled with adventure.
Oh yes the 4th offered us a exceptional adventure. Surprises around every corner.
It was quite a wonderful opportunity for the children to grow and yes even us. Now in 29 years of marriage we have had flats in the driveway, two flats on the way home from Colorado years and years ago. Sunday well what an opportunity to see answers to the prayers moment by moment.
After Morning services (that were awesome) I always tear up at song of patriotism. We went to the movies and had a mini stay-cation together. The fellow at concessions was so generous and amazing. He suggested ways to economize the order, going far beyond good service. It was really refreshing. Dove had won a cup and so we made purchase of two other cups $1 to fill each visit. This little tid bit matters to story. For the cups of ice were not tossed as would be a paper cup but kept.
Leaving the parking lot onto the road choosing homemade lunch over fast food we were homeward bound.
so we thought...
the keys had been locked in the truck!
(100*+ in the shade)
Coming home we all rested and took showers. We all sucked on water and ice cubes well into the evening. We were all grateful and content in an amazing adventure on the 4th of July
The evening at home and fire works on the TV
Posted by
Donetta
at
7:38 AM
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Labels: Faith, Family Life
Monday, July 5, 2010
An evening in the light
Now the wisdom came to me to explain that it is the Holy Spirit living by invitation, through belief in Christ Jesus and all that He had done to wake mankind up into who He was/is on that cross, that the light is welcomed. Once light comes in the darkness is then illuminated and can not stay dark any longer. because All the dark deeds done are a prison that is our own torment and separation. When we live in darkness we fear the light. Than that in itself is the separation...the torment.
To welcome the light to shine within is to repent of it and let the light chase away every shadow. We no longer have to live in the loneliness for the absence from fear.
Dove asked me to pray with her, Dash thanked me and wandered off to bed. It was a good night in the light. Darkness got the illumination it needed around here. We spoke of our adoption into the light as also many other things too. This one was so amazingly made clear to them though.
I think I am glowing tonight with gratitude, conviction of a darkness of an amends to tend too. In a way this offense seems so justified it serves a purpose of seeming separation to protect my child. To protect my kid through anything other than light shined into the darkness is error. I must face the darkness head on or I am simply withholding the light from it. The darkness may reject that light but if I withhold the light from opportunity then I error.
Posted by
Donetta
at
10:30 PM
1 comments
Labels: Character, Faith, Family Life
Friday, July 2, 2010
A lesson in Social Geography
Good Morning!
Recently our kids have been learning more about Cultures around the world.
They watched (or should I say Dash watched) a documentary on the toilet and water problems around the globe. For example in India...well lets just say the major river has become the "sewage system" of the "modern" construction. In Malaysia the fields and waterways are local toilets and hopes are to remove some of the obstinacy by teaching about malaria for it is rampant. They are even celebrating when a home gets a toilet. These are squat toilets but non the less not in the creek they drink form.
The kids heard about some of the causes we care about. Then they gave their input as to where they would like to help.
Dove threw a curve in the mix. Gotta love this kids heart "Mom, Mexico..I have a friend and her grandma lives there and they really need help". So many Americans hate the people who if they had their needs they might stay across the boarder and stop drains our countries resources. Understanding. So after looking into it Habitat for humanity looks like a great group of souls trying to do some good.
Children are often good eyes into the needs of folks unbiased by the controversies.
Now as for Dash he thought about Kenya. Cornerstone Church is partnering up with a dear heart known as "Mamma". She has an orphanage 2200 square feet with 140 kids. Three bunks high. Dash wants to help build a dormitory so she can take more children off the street... or out of the wondering. These are the throw a ways. Lord Lord how sad. In Russia Dash was housed there with the kids that would never be adopted because of abnormalities
My heart goes there. Doctors without boarders operation smile. Sitting on the orphanage floor waiting for Dash to be changed and handed to me to hold my heart was pierced. Before me sat on the floor a child who had clef lip/palate. I knelt on the floor and loved on him, to the horror of the workers. A child without a future because of a simple reconstructive surgery. A son of my heart that would forever remain a driving force of good. Instead of repulsion from parasites, drawn to the inner soul of this dear one. Later taking medications for the bugs but always thinking what a little cost to give that baby 5 minutes of love.
Daddy man has a heart for "Father Roderic" a pod cast, talk show on line. Although we are not Catholic this man is a blessing to him everyday.
Oh far too often do we loose out on things due to limits self imposed into rejection if we differ. This man BLESSES him. We are of the heart and content.
Now bring it closer to home...
Dash has a friend who has a single mom. When he stays the day here to play all he wore was flip flop shoes. I would have him ware an extra pair of Dash's shoes to play in outside in the yard. Boys just can not run and play with abandon in flip flops. He only has shoes when school starts.
Dash gave him his shoes. Now dash has three pair two old and one nice. Dash gave him his nicest shoes...When I realized this I was humbled and told Daddy Man. Oh we both just teared up with affection toward the heart of our son.
All around this globe are cultures, peoples are of varying need.
The greatest thing my children ever need is the understanding that who they are is not what they have but what they are willing to give. We are poor only through what we refuse. Rich through what we are willing to receive. My FILove has a needle point of such on a wall. The richness we have is from what we have been given. Yes we worked hard to gain it but it is that even the poor work hard. To whom much is given much is required. It is a gift from God. It is not for us to store it all up to our own demise. As I age more and more I am exposed to the folks who pass leaving masses of stuff for the others to disassemble at their passing. Passing also on a burden for them to deal with. Several of my friends have lost parents and are in the process of doing so. My mom had nothing and so at her passing I was spared this. My sister dealt with our dads stuff and oh it was a nightmare for her to do so. There were even fines he accrued that she had to pay. Loosing the lands. A heritage and an inheritence is to be a gift to or dependents yet not become a burden. It is good to do so, yet it is far more than just monies and stuff.
Early on in our union there was an old spinster woman who lived with her other two sisters until one by one they passed. This was where many things came into our use. This a huge honor to have fine linens and fun jewelry. Then after we were done with the estate sale the home was emptied of all that was left.
Now we the extended family were blessed. I remember the energy my MILove and others had extended on the task. I was a very young bride then. It was a good lesson that was forgotten for a while. It is these experiences in life that produce understanding when knowledge is saught in hopes to remember wisdom.
Posted by
Donetta
at
8:45 AM
3
comments
Labels: Character, On Wit and Wisom
Thursday, July 1, 2010
Ask and you will recieve
He had an office meeting.
It was a team building exercise to build a paper airplane.
They won.
Posted by
Donetta
at
10:20 PM
3
comments
Labels: Gods Provision, Home maintainance
Spay/Neuter Assistance Program
- Simply fill out an application and return with payment (if applicable)
- Approximate 2-6 week turn-around time
- You choose from a list of participating veterinarians
- You will have 90 days to use the voucher
| 2500 S. 27th Avenue Phoenix, AZ 85009 | 2630 W. 8th Street Mesa, Az 85201 |
Posted by
Donetta
at
5:39 PM
1 comments
Labels: Financial, Gods Provision, Pet Care
Tuesday, June 29, 2010
Gail force winds!
Ok who prayed?
I got a second wind this evening out of the cloudless blue. Once this morning for a good two hours or so energy came upon me and inspiration to organize. The kids also had a time of tasks. They really feel good about doing them too.
Now they have taken over the dung duty, or better said "duty duty". They have set there own schedule and have chosen how to do there days. Dash on Monday and Friday, Dove on Tuesday and Thursday. Dove got the better deal as in most everything my son takes on his generosity mirrors his father. Some woman is going to get a real nice spouse some day. Yes he does want to marry and have kids one day. A nine year old thinking that far ahead!
Tonight mid evening while the kids played at a neighbors I rested at the computer. While they showered I got a second wind, or should it be called Gale force wind?
Posted by
Donetta
at
11:22 PM
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Labels: Family Life
Tackle it Tuesday
Dear friends today it is I who feel tackled by this fine Tuesday morn. If my body could even begin to keep up with all of the many many tackles that address my attention. Well It is a great motivator to try to focus and accomplish at least one today. That is what I have always loved about TIT. Today I really want to give it good effort and simply accept it if an outcome occurs.
The other thing is to have the kids tend to a tackle just in order to keep them from the "FAT" of too much ease. Not the fat of body but of abundance and idol body with piles of their own.
With the challenges of terrible fatigue life is different for me these days. Like the wind has been pulled out of me. So very very tired almost all the time. This ol' hamster is all but seized upon my wheel. This has lasted a long while now. I am told that after the infusions I will feel much better. There is a pleasant peace here at our uncommon home. All is well with our souls. As of now it is more the body that gives challenge.
Posted by
Donetta
at
7:59 AM
3
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Labels: Financial, home economics
Monday, June 28, 2010
Meal Plan Monday Mother Sauces
| BEEF TIPS AND NOODLES | |
2 lbs. of beef tips, cut into 1" cubes 1 pkg. onion soup mix (or dried onion and a bit of Kitchen Bouquet, a seasoning and browning sauce) 1 cup of white sauce 1 pt. fresh mushrooms, rinsed 1/2 c. red wine 1 pkg. egg noodles, cooked & drained 1 tbsp. vegetable oil Brown beef tips in vegetable oil, until cooked through. Add white sauce,onion soup mix, fresh mushrooms and wine. Simmer on low heat for several hours. Serve over egg noodles.Note: The longer the beef tips simmer, the more tender they will be. Mother Sauces There are five Mother Sauces This is a culinary lesson. *Béchamel * Espagnole * Hollandaise * Mayonnaise * Tomato sauce * Velouté Sauce Bechamel Is a French Sauce Base: Milk (Usually Whole Milk) Thickening Agent:"How To Make and Use a Roux" White Roux Classical Flavorings: White Onion, Clove, Bay Leaf, Salt, White Pepper, Nutmeg Common Secondary Sauces: Cream Sauce, Mornay, Cheddar Cheese Sauce, Mustard Sauce, Nantua Classically Served With: Eggs, Fish, Steamed Poultry, Steamed Vegetables, Pastas, Veal Technique and Recipe: Guidelines for Roux Don’t use margarine or shortening. Yes they’re cheap, but margarine tastes horrible and shortening adds no flavor; not to mention it can give you a bit of a fuzzy mouth feel. "How To Make Clarified Butter" Melt over double boiler and once melted skim off all of the whey off of the top of it. Store for use. Use only clarified butter oil or animal fat Don’t use whole butter. Whole butter is about 15% water and will give you a less consistent product than a roux made with pure fat. skim off whey and discard Keep this in the refrigerator for use in sauces Cake flour has about 20% more thickening power than bread or AP (All Purpose) flour. However, since bread and AP flower are more common than cake flour, most recipes that call for a roux assume that you will be using AP flour. Making Roux The process for making roux is extremely simple. Just place equal parts of flour and fat, together and cook over low heat until thickened. How long do you cook it for? Well that depends on what kind of roux you wish to make. There are basically three types of roux which are differentiated by the degree to which the roux is cooked. White Roux White roux is really more of a yellow roux that you basically cook for just a few minutes until the fat and flour are evenly mixed together and start to froth. You want to cook out the raw taste of the flour, but stop cooking the roux before it starts to turn color. White rouxs are used for white sauces that are cream and milk based such as bechamel and Alfredo. Blond Roux Blond roux is cooked a little longer than your white roux, just until it starts to slightly turn color. Blond roux is used for white sauces that are stock based, such as veloutes. Brown Roux Brown roux is traditionally used for brown sauces, which are sauces based upon brown roasted stocks such as the mother sauce Espagnole. The key to a good brown roux is to cook it over low heat so that it browns evenly without scorching. Some chefs will even dry roast their flower in the oven first before making it into roux. A good brown roux will have a rich and nutty aroma, and is great for thickening brown sauces and gravies. Just remember that a dark brown roux will have about a third of the thickening power of a blond or white roux. Incorporating Roux Into a Sauce or Soup Roux can be added to a sauce either warm or cold, but never hot. A sizzling hot roux will separate and break when it hits a cold sauce, causing lumps and the loss of the roux’s thickening power. Once the roux is added into the liquid you wish to thicken, whisk vigorously to incorporate and bring sauce to a simmer. Most roux thickened sauces are simmered for at least 20 minutes to cook out any starchy taste created by the flour. During this simmering, it is a perfect time to skim off any scum or fat that rises to the top. Now what kind of ratio and proportions should you use when thickening with a roux? It’s as the rhyme of 3,4,5,6. 3 ounces of roux per quart of liquid will thicken a sauce to a thin or light consistency. 4 ounces of roux per quart = medium body sauce. 5 ounces of roux per quart = thick sauce. 6 ounces of roux per quart = heavy gravy. Sauce BéchamelThis recipe is for about one cup.Multiply by the number of cups of sauce you need.
| |
Posted by
Donetta
at
7:38 AM
1 comments
Labels: Cooking
Saturday, June 26, 2010
A Fresh Sewing Center
Posted by
Donetta
at
12:39 PM
3
comments
Labels: Sewing
Thursday, June 24, 2010
Full days Summer with Children
Goodness sakes they look like siblings!
Posted by
Donetta
at
1:06 PM
3
comments
Labels: Cooking, Parenting, Recreation
A comment from a local reporter
Over at the other blog "A Place to create" I received a request to be interviewed.
Returned a call this morning and the whole thing is legitimate. Incidentally I am now in her contact lists. Wow that is one way to set your soul to getting things done. Ideas in place. Kindled a light that had dimmed a bit. Sorta clipped the wick. Peaked my interest in continuing on my creative expressions.
My name is Laura, and I am a reporter for the Arizona Republic.
I am working on an article about DIY home decorating projects.
I happened upon your blog, and I was very impressed by your decorating skills.
If you are located near the Phoenix area and if you have two simple home projects that you could easily explain,
I would be happy to feature you and your design ideas.
My article is slotted for next Friday, so we would need to find a time within the next week that I could interview you quickly and have some photographs taken.
I hope you are well,
Laura Gottesdiener
Posted by
Donetta
at
11:59 AM
2
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Labels: Art, Education, Home Decore
Wednesday, June 23, 2010
When life gets tough...
Well it is an amazing thing when the tough get going. We had a wonderful service last Sunday despite the ear cracking volume of the service, no joke. There was an Epiphany for my darlin' and I. The Pastures story went like this...
I can KEEP my pile and have all the burden of it or I can entrust God with it. This the epiphany that it is GOD who we will give charge over our pile. Everything we own is his. Every breadth. Not out of fear but out of release. Who really wants the stress and anxiety of clutching onto all with white knuckle desperation. Wondering where every dime and every need is going to come from.
Lately every time I turn around a dime and a penny appear. A whimsical game God and I have played for a good 20+ years. We have given our lives to Christ but have we ever given him our pile. A long time ago I lived in fear that the pile would be taken away. We had a differing belief between us in our finance over the tithe. The DREADED TITHE...so finally trusting I let go and kept an attitude of generosity for years. I came about after years of this fear that the pile would be taken for the lack of the practice of the tithe that I became fearful so much so that white knuckled I changed. ME! the girl with the trunk full of clothes and things we no longer needed and every visit to a friend to the trunk they were taken and we saw the amazing provisions shared and there was never a lack. There is still never a lack.
8 years ago we went down 2/3's in income at the same time adopting our second international adoption. A very scary time for we had began the adoption as the plant that Steve worked at shut down and he was not absorbed a 27 year career gone. Low man on the pole he began again. It was then that the trunk dried up. " better hold onto the things for never know I may just need them." The pile grew. Stagnant oppressively grew. We began a budget a year or so ago. We became out of debt. WE DID IT har har...Who? OH WE>>> Who? who? made us able when bills hit unexpectedly? Who?
Our intentions blessed and efforts made yes. For the first time this message has changed hearts so...hands open we are now budgeted for the tithe just as the house payment or utility a priority.
Somehow all the slack in the budget will be covered I know this from a life time of seeing the measure met. The jar of oil never dry or flour pot never empty.
OH THE Peace! of this being out of recognizing that we no longer control but have given control over our pile to God. We will continue to do due diligence. From there? It will be so fun to see how it will all come around and the pile will balance out to a blessing and not a big old oppressive mess to deal with. I am so happy, so proud of the unity that is now provided on this topic in our marriage and it being out of release and not fear.The leader leading. Put a fire under me that warms me to get a few things sold on Creigs list and clear out some of this accumulation. A warmth to bake bread and set menu, to cut out the fat of the excess.
Posted by
Donetta
at
7:36 AM
1 comments
Monday, June 21, 2010
Inherited Common variable immunodeficiency (CVID) first visit
What an afternoon! Being an American is the most prized gifts in life.
I have health care and the best technology to help me.
Steve met us there and Dash and I had allergy shots and Dash had his asthma check up. He is doing great!
God is so Good to see my boy so wonderfully healthy.
Dash went to lobby with Dove and Steve stayed with me.
Indeed I have CVID the moderate in degree. At my age I will need a 4 week interval of Infusions.
Each infusion is a 6 hour process for the administration must be given very slowly as to avoid side effects as much as possible. The first to be done at the clinic then I will be given a homehealth care nurse. She is there to moniter the anifalatic concerns and the reactions I might have. My IgG is half of a normal person. There are a couple worse than me in the practice. This is a rare disorder Genetic in nature. In the large practice there are 5 of us. My case is not severe however I will have to have the infusions the rest of my life every four weeks. Because of my age it is very unlikely to ever rebuild my own immunity so I will be dependent upon infusion to guard me from infections for the rest of my days here. This to protect me from life threatening respitory things as well.
As it stands...
The coverage is being confirmed, the infusions will be ordered as too my specific need.
There are two cells types as I understand it. The "T" cell protects against virus, mine is intack. Thank God! Then there is the "B" cell this is where my big problem is. The "B" cells (that I do not have or have a very little of) are to attack the bacterial infection.
I need to use great care as to not get exposed as much as possible until after the first infusion. Each infusion will provide a varied type of immune cells. This will give a broader range of protection.
The risks very minamal as for the new techniques used = hep C, AIDS. VERY RARE
I will have to set up a CAT scan with contrast (injected die) for a base line on my lungs. To be repeated every two years. I will need to keep up on collonoscopy, mammo and other rutien cancer screening. That should be done by all of us anyway. With this there is a bit higher chance of "C" then in the common of society.
Watch there might even just be some kind of mirical some day that somehow my immun system will show us all! There will always be hope. Even so 6 hours and possible yucky every 4 weeks and I have a healthy normal life that is good news!
Posted by
Donetta
at
6:04 PM
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test results apointment
In an hour I will be with my husband learning more about what CVID is all about for me and the degree of what we will be facing. I have no lack of confidence in the battle I am facing . My courage will not halt or falter. I have utter confidence in the love that God has for us.
These words are processing within my result to bone me up to walk I hope with grace.
I must somehow follow an example of result not to focus on dieing but on living determined to fight a good fight. All I am and have is only but by the grace and is a gift form God. I deserve nothing yet have been given everything I have NEED of and a lot of icing on that cake too.
Thank you for your support. I must keep composed for the sake of the children. Pray for us about that please.
I heard HIM say today to practice the ministry to the medical folks that it is God not them who is in the authority of my health. It is HIS ultimate hand in the outcome. NOT THEM< THEY ARE NOT THE HEALERS God is! I am impressed that that is what this is all about.
Posted by
Donetta
at
2:03 PM
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Sunday, June 20, 2010
Being a Parent
5 A.M. saw be awake and in the yard and garden. Watering in my pajamas for the house was still. Breathing was not to fun so instead of sitting reclined I just got up and went outside. The ball thrown for the dogs and the coop top cleaned with new shavings...
Hearts meeting with my dogs just loving on them. Finally the sweet Lab (no name for safety) is calmed. We are trying to be the first at the door of the humane society for a voucher to snip him. The cost will go down from $250 to $85 for it. I am not going to breed him and his libido is out of the park. This is to mellow him and perhaps stop the leg lifting on the wall. Then the dogs can be house dogs again.
I just got to be the first on at the door at 7 a.m. with kids in tow or Daddy man to cover me.
I am left thinking your feeling may be of me doing the pet thing wrong. This parenting thing is hard. Dash did so well and tended to task sometimes it is hard to remember that Dove is a different child and has some special considerations. She is 12 on one day and 6 on another oh I am so to blame yes...Even though I asked twice my instincts should have been listened too.
This parenting stuff is hard.
Posted by
Donetta
at
9:05 AM
4
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Saturday, June 19, 2010
Prissy Passed
Today we returned home from an outing to pick up our car from service only to have Dash running in to cry out loud that prissy was dead. As we all ran to the coop to see...well it was an awful thing. Dove has recently been placed in charge of the animals replacing Dash for this duty by mutual consent.
"Dove did you give the girls water?"
"yes Mom"
A dog bowl was there with water...
Later at bed. Ashureing her that birds can be blind to water if not placed within their container she opend up to truth...
"mom they did not have water, I never gave it them. I don't want to care for the animals anymore"
"I forgive you if truth becomes your way then Prissy would not have given up her life without purpose."
Dash calls to me...
In his covers I tell him of what had happend...
"Mom, I knew she didn't water them"
"That must be a hard thing to know"
"I want my job back"
Posted by
Donetta
at
10:19 PM
3
comments
Older women likewise teach the younger women...
• how to love their children
• how to be self-controlled
• how to be pure
• how to be keepers at home
• how to be kind and submissive (not subservient) to their own husbands. (See Titus 2:3-5)
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By Maya Angelou
That a man should have to seek Him first to find her.'
When I say... 'I am a Christian' I'm not shouting 'I'm clean living,'
I'm whispering 'I was lost, Now I'm found and forgiven.'
When I say... 'I am a Christian' I don't speak of this with pride.
I'm confessing that I stumble and need Christ to be my guide.
When I say... 'I am a Christian' I'm not trying to be strong.
I'm professing that I'm weak and need His strength to carry on.
When I say.. 'I am a Christian' I'm not bragging of success.
I'm admitting I have failed and need God to clean my mess.
When I say... 'I am a Christian' I'm not claiming to be perfect,
My flaws are far too visible, but God believes I am worth it.
When I say... 'I am a Christian' I still feel the sting of pain...
I have my share of heartaches, so I call upon His name.
When I say... 'I am a Christian' I'm not holier than thou,
I'm just a simple sinner Who received God's good grace, somehow!
Words have power. Here are a few of my favorite sayings.
- A warm cup of tea is like a cuddle with a friend.
- The North American Indians have a more eloquent word for ‘friend’ than we do in English. In their language, the word for friend literally means, “the one who carries my sorrows on his back.”
- Return with Honor
- The sage anticipates things that are difficult while they are easy, and does things that would become great while they are small. All difficult things in the world are sure to arise from a previous state in which they were easy, and all great things from one in which they were small. Therefore the sage, while he never does what is great, is able on that account to accomplish the greatest things."
- "HOME IS WHERE YOUR STORY BEGINS"
- “Live so that when your children hear these words they think of you… Fairness Caring Integrity Honesty Love Trust.”
- "O Lord help my words to be gracious and tender today, for tomarrow I may have to eat them."
- "No man has ever been shot while doing the dishes"
Click here for all crafts
Please pray for her parents and family
Amy has clicked her heals and flown to her real home. There is no place like home.
This was given to me for the third time in just a few weeks.
"For the LORD your God has arrived to live among you. He is a mighty savior. He will rejoice over you with great gladness. With his love, he will calm all your fears. He will exult over you by singing a happy song."
Thank You Ross
Getting to know Me
What warm hearts you all offer
Thank you Michelle
Thank you Annette they are beautiful
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