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Family Matters:  Aria is off to the ER!!!!  |
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julia hayes
True Blue Farmgirl
1132 Posts
julia
medical lake
wa
USA
1132 Posts |
 Posted - Mar 15 2009 : 08:53:28 AM
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Heidi! Thank you so much for your thoughts and the book recommendations. I have a voracious appetite for information and read a great deal so I'm always looking for new books and new perspectives. These surely fit the bill!
When horrible things happen to our children, I'm learning that the rules change, the game is entirely different and it is now a process of sorting that all out.
Joy is a very good word for me. It is a defining emotion that exudes from one's character. I have always thought myself a joy-filled person. I'm not always joyful, but I do seem to have stores of joy upon which I draw during those times that are dark and pressing.
I was folding laundry this morning, waiting for my husband to call with news about Aria. It was about 6:30 and suddenly the word 'acceptance' came into my mind. This is a challenging word/concept for me right now. However, when I thought it, suddenly this liberating feeling came upon me as I considered; "It will never be o.k. that Aria has cancer and has had to endure what she has. Never." As I thought deeply about this, my mind and thoughts wandering into the folds of our clothes, I came to realize that even though it isn't ok, and I will never accept that is, I can still accept those things about it that are ok. These are 'the moments' people refer to when enduring times of hardship and struggle. You grasp moments and somehow this eases the strangle hold of dealing with something beyond your control, beyond your reckoning and beyond your acceptance.
I spent 9 hours in the hospital yesterday with Aria and the kids and had to boil that experience down to 'moments'. One of the best moments was coloring my hand to make a puppet. I hadn't done that in a long time and the kids were enthralled. As I was reflecting on those moments, I noticed the smile upon my face and it occurred to me that I have another day to spend in the hospital creating moments and I can create more and more moments, if only I have the will. I vowed to accept what Aria has to endure today and I have the will to make the most of it. I've gathered costumes to bring and today I hope to create a world of fantasy within a world that is brutal and harshly real.
I don't know why Aria's life experience has to include cancer. It doesn't matter to me to find out. I'm ok not knowing. I accept that I may never know and understand. I accept that joy is sometimes just a word and when it is more, I accept that too. I accept all that I have to do to ensure Aria's cure and I accept that I am in the hand's fate. I accept that there is no fair and unfair, there simply is.......
Aria's fever spiked back up to 102.3 last night around 8 pm but by 4am this morning it was gone! She's hasn't pee'd much so is still rather dehydrated from the fever so they're keeping her on IV fluids. At the earliest, we'll be able to bring her home tonight. This is doubtful and we're planning another day there and taking it one day at a time. I talked to her this morning and she sounded chipper and rested. Hearing her voice filled with spirit made mine soar!
Your thoughtful words, prayers and bits imagery help a great deal. Thank you so much for keeping Aria and my family in the light! ~julia
being simple to simply be
Farmgirl #30
www.julia42.etsy.com |
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jpbluesky
True Blue Farmgirl
6066 Posts
Jeannie
Florida
USA
6066 Posts |
Posted - Mar 15 2009 : 09:15:01 AM
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Juia - you are the most wonderful mom and inspirational woman. I am so sorry you have to experience this very hard thing....but you are making it a learning experience for all of us, and your intelligence is awesome. I pray for your little Aria each day. Hugs and love to you and all your family.
Farmgirl Sister # 31
www.blueskyjeannie.blogspot.com
Psalm 51: 10-13 |
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Jami
True Blue Farmgirl
1238 Posts
Jami
Ellensburg
WA
USA
1238 Posts |
Posted - Mar 15 2009 : 10:39:05 AM
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Julia, you do such a great job of expressing your emotions in writing. Truly, you make me feel them right along with you, to the point that I can since I'm not in your shoes. I empathize with you completely, the ups, downs, restlessness of the hospital, wanting to be there/not there, etc. You're coping and it seems that is a place of acceptance as you said. I have no advice or worldly words of wisdom, just that I care and am thinking and praying for you all and sending Aria hugs through the prayer-waves.
Jami in WA
Farmgirl Sister #266
http://woolyinwashington.wordpress.com/
http://farmhouseflair.etsy.com |
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julia hayes
True Blue Farmgirl
1132 Posts
julia
medical lake
wa
USA
1132 Posts |
Posted - Mar 15 2009 : 11:14:26 AM
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Jami, the sincerity of your post touches me deeply. I appreciate it so much.
We all want to be the one who said the right thing at the right moment don't we? I know I do and I'm learning and discovering that 'right' is quite irrelevant. People have said all kinds of well intentioned things to me that don't resonate in the least. But what motivated these people to say what they believe resonates very deeply and keeps me upward and moving forward. I never cease to be profoundly affected by the goodness of people.
The fact that you say anything at all is HUGE! It is my observation that saying something is infinitely better than saying nothing, or worse, worrying about saying the 'wrong' thing. Right/Wrong, these identifiers have so little meaning so much of the time. I can't escape knowing that someone may say something to me and in that moment it is the seemingly 'wrong' thing but moments later it may become the very 'right' thing. Who knows and who's to say but truly silence is the unruly foe.
Sincerity, integrity, mindfulness and love...these are the things that motivate people to express their true selves. It is what we see, it what we are drawn to. Words can offer clarity but they can also muddle the waters too.
From my vantage point, it isn't what you say that matters. It's how you share who you are.
What you've shared with me today as well as all my other dear farmgirl sisters, I shall carry and infuse myself with that strength..
Thank you Jami, thank you all! I'm off to get Chinese food for Miss Aria..her favorite. She spiked another little fever...so we're going to pig out in our costumes and have a puppet show later!!
Much love to you all! ~julia
being simple to simply be
Farmgirl #30
www.julia42.etsy.com |
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therusticcottage
True Blue Farmgirl
4439 Posts
Kay
Vancouver
WA
USA
4439 Posts |
Posted - Mar 15 2009 : 12:14:24 PM
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Julia - just read this thread and I am so sorry that Aria is in the hospital again. I know that this is hard on all of you. I'll be pray for Aria and your family.
The Rustic Cottage Blog http://therusticcottage.blogspot.com
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a rose
True Blue Farmgirl
443 Posts
Linda
Waterford
NY
USA
443 Posts |
Posted - Mar 15 2009 : 2:28:31 PM
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Julia, I am suffering with cancer, and it amazes me how well children handle this disease. It's probably because they really believe they are going to get better. They have such a powerful will and such a trusting attitude. I envy them. MY prayers for Aria will continue for a long life productive life
Linda (a rose)
Remember me as a rose. |
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Diane B Carter
True Blue Farmgirl
1270 Posts
Diane
Blasdell
N.Y.
USA
1270 Posts |
Posted - Mar 15 2009 : 3:07:17 PM
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Julia, My prayers and thoughts are with you and your family. It is hard on everyone who has a sick child, I was lucky to have two healthy sons. When I came home from work one day and saw my little one all broke out with the chicken pox I just cried. I knew in a few days he would be well but it just hurts when your child hurts. I will say an extra prayer for you. You sound like a wonderful mom. Healing prayers to you and your beautiful family.
Hope all your days are Sunnydays.
dianebcarterhotmailcom.blogspot.com |
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willowtreecreek
True Blue Farmgirl
4813 Posts
Julie
Russell
AR
USA
4813 Posts |
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Alee
True Blue Farmgirl
22937 Posts
Alee
Worland
Wy
USA
22937 Posts |
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mikesgirl
True Blue Farmgirl
3659 Posts
Sherri
Elma
WA
USA
3659 Posts |
Posted - Mar 15 2009 : 6:29:29 PM
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Julia - I've been out of town for the last four days at a show and just found out about Aria being in the hospital. My prayers and thoughts are with your family and I sincerely hope she is feeling better by now.
Farmgirl Sister #98
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julia hayes
True Blue Farmgirl
1132 Posts
julia
medical lake
wa
USA
1132 Posts |
Posted - Mar 15 2009 : 6:33:03 PM
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Aria is not well. Her fever went up to 104.6! She was so sick today. Just pale and wimpery most of the day. She had a few moments when her true self came out but just a few. She's achey and uncomfortable. By the time I left her temp was down to 101.6, so that's a good sign. Looks like we'll be there a few more days...
I'm so tired and yet completely wide awake. I don't know what to do with myself. It is so weird. I'm going to make a simple supper for my other kids; pbjs and apples. I'll feed the dogs and then putter around...you know, nervous energy type stuff.
I need a good cry. Maybe I'll watch a sappy movie to get the water works flowing. Any recommendations???
thanks for all the positive thoughts and prayers...please keep them coming!!
Did I mention that a few nurses who take care of Aria are FarmGirls????!! They are so awesome..I do get to talk knitting, sewing, chickens and so forth..that part is so healing for Mama!!!
Blessings~julia
being simple to simply be
Farmgirl #30
www.julia42.etsy.com |
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Calicogirl
True Blue Farmgirl
5216 Posts
Sharon
Bruce Crossing
Michigan
USA
5216 Posts |
Posted - Mar 15 2009 : 7:08:30 PM
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Julia I am praying for Aria. I just hate seeing anyone deal with this sort of thing especially children. My continued prayers for Aria and for you and your family to be strengthened too!
That is so neat that some of the nurses are Farmgirls:) What a blessing to have kindred spirits there in your time of need.
~Sharon
By His Grace, For His Glory |
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RuralSuburbia
True Blue Farmgirl
251 Posts
Leslie
Northern CA
USA
251 Posts |
Posted - Mar 15 2009 : 7:41:22 PM
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The only movie that makes me really cry is "P.S. I Love You". Even the book had me bawling by page 6. It's about a young woman who loses her husband, and it's sad AND funny, but maybe not so appropriate for you right now.
I'd choose a movie that transports you away, if only for 2 hours. Watch "Pride and Prejudice" with Kiera Knightly and lose yourself in Jane Austin...
Or watch "Pearl Harbor". Those are my standbys, my escapes.
Poor Aria~I hope that fever breaks for good!
{{hugs}}
Leslie
*I've got stars in my eyes and exactly $1 in my pocket!* |
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julia hayes
True Blue Farmgirl
1132 Posts
julia
medical lake
wa
USA
1132 Posts |
Posted - Mar 15 2009 : 8:46:08 PM
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Leslie, you WILL NOT BELIEVE this but I swear THAT (pride and prejudice) is the movie I'm going to watch! I LOVED that movie the first time I saw it a few months ago. I promptly discovered that I didn't own a copy of the book and quickly remedied that loving every single word on every single page....the movie however is something different...there is something about the music....there is something about the costumes...they take me away...truly...
The scene where she is walking to be with her sister Jane. The cinematography of this scene is absolutely breath-taking. Elizabeth is walking alone along a stoney fence line. The sky is grey and threatening and the wind is howling. She is undeterred and the music...I can't seem to find the words to describe the music..it is haunting, encouraging and soothing. Oh, so soothing. Makes me cry every time...
I'm off to watch that film and I'm so happy your spirit will be with me!
blessings! ~julia
being simple to simply be
Farmgirl #30
www.julia42.etsy.com |
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Mother Hen
True Blue Farmgirl
604 Posts
Cindy
Peck
ID
USA
604 Posts |
Posted - Mar 15 2009 : 11:51:08 PM
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Julia, I just saw this thread, I will pray for Aria for healing and your family for strength. If I remember back to page one I believe you said you had been sick before Aria got sick....you really do need to take care of yourself during this time especially. Stress always hits your weakest point and you don't need a relapse on top of this.
May God bless your family,
Cindy
FARMGIRLS CAN DO ANYTHING!!!
I will bless the Lord at all times: his praise shall continually be in my mouth. Psalms 34:1 |
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julia hayes
True Blue Farmgirl
1132 Posts
julia
medical lake
wa
USA
1132 Posts |
Posted - Mar 16 2009 : 06:49:07 AM
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Farmgirls, Thank you all so much for the wonderful encouragement. Melody sent me a great email reminding me to breathe..I've been doing that! Cindy, your gentle reminder to 'take care' is another really good one. These are such obvious things but it is so strange how quickly it is to forget them. I do sometimes find myself holding my breath.....I do eat crap food in the hospital...these reminders give me pause..they help...
No word on Aria yet this morning. I'm on the edge of my seat waiting to hear. Here's to good news. I'll keep you posted. Off to ready myself for this day! ~julia
being simple to simply be
Farmgirl #30
www.julia42.etsy.com |
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julia hayes
True Blue Farmgirl
1132 Posts
julia
medical lake
wa
USA
1132 Posts |
Posted - Mar 16 2009 : 08:41:48 AM
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Farmgirl Sisters, just wanted to give you a quick update before I head out.
Aria's temperature at 3 30 am this morning was just 103. When Doc called me this morning at 7am, he said she felt cool. I suspect this will be another day of up and downs with her temperature. The really good news is that her counts have improved from 240 yesterday to 436 today. This is big! It means her immune system is kicking in to help fight whatever virus is trying to infect her. I was able to speak with her around 8 am and she sounded good. She gets sing-songy and uses a baby voice when she's in a playful mood. She was ga-ga-goo-goo all over the place. It was wonderful! Makes me smile.
Reo hurt his leg coming up the front steps yesterday when we got home and he told me this morning that it is just too painful for him to go to school. "Mama, I just need to be with Aria." And he does, so we're keeping him out of school today. Amazing. Part of him gets it and part of him doesn't. He gets needing and wanting to be with Aria but he doesn't get being in isolation where we can't play in the playroom. This has him baffled and irritated. Poor kid. We'll figure it out.
I'll be checking in and out throughout the day. I have a computer at the hospital and I tell you, it HELPS!! The distraction for me is great!
Here's to breathing, eating well, (I'm very well rested and feel good!)...Here's to Aria's healing and most of all here's to YOU being with me!!
I'm indebted!! ~julia
being simple to simply be
Farmgirl #30
www.julia42.etsy.com |
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mikesgirl
True Blue Farmgirl
3659 Posts
Sherri
Elma
WA
USA
3659 Posts |
Posted - Mar 16 2009 : 08:57:35 AM
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Great news on Aria's counts this morning Julia! Keep breathing and eating well and knowing we're there with you.
Farmgirl Sister #98
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julia hayes
True Blue Farmgirl
1132 Posts
julia
medical lake
wa
USA
1132 Posts |
Posted - Mar 16 2009 : 10:03:56 AM
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got some good news for you!!
Our oncologist came by this morning and said we MIGHT be able to go home this afternoon! MIGHT!!!
The deal is that her counts are great, bacterial cultures have come back negative so it's the fever that we still have to worry about. So far so good on that front. I'm cautious though, because yesterday morning this time her temperature was normal and then by 2 30 it spiked to 104+ so we'll just have to wait and see.
They've taken her off her IV, which is HUGE because now she can walk around and play a little. She actually wants to do a little of that too, which is wonderful.
So, if she remains fever free for the day, they'll send us home but will give her a whopping antibiotic that ought to 'cover' her for 24 hours. We're coming back tomorrow anyway for a clinic appointment and her big gun chemo so it would be coming home for the night and then seeing what tomorrow brings.
Part of me wants to stay here and not hassle with bringing her home only to have to bring her back in the morning. But the other part of me knows the restorative and healing powers of being home...even if only for a few hours. I'd also LOVE my husband to be able to get a good night's sleep in our bed. So, I'm really hoping we get to go home, but if we don't that's fine too.
The big gun chemo she's getting tomorrow will bode for some intense days to follow. Her counts will drop, making her more susceptible to whatever..She's still very vulnerable so we really are just taking things one day at a time. For those of you who don't know what happens with immuno-suppression( which goes hand in hand with cancer treatment) is that viruses that enter the body can take over very rapidly and with a vengence. The body can go into septic shock within a matter of hours, which can be deadly. This is why Aria is still very much at risk and why she's having to take various antibiotics to keep whatever virus she's dealing with at bay. It is super scary yet under control...
But for today, in this moment things are looking up!!
Thankyou so so so very much for staying so close with me..I feel so much better having you right there!!
~julia
being simple to simply be
Farmgirl #30
www.julia42.etsy.com |
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Ronna
True Blue Farmgirl
1891 Posts
Ronna
Fernley
NV
USA
1891 Posts |
Posted - Mar 16 2009 : 10:12:44 AM
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Thanks for the update Julia. My feelings are mixed too, with all these virus type bugs going around, no matter how well you try to protect Aria.
hugs to you from me |
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Jami
True Blue Farmgirl
1238 Posts
Jami
Ellensburg
WA
USA
1238 Posts |
Posted - Mar 16 2009 : 11:17:43 AM
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Thanks for the update Julia. I was wondering how our girls were doing today, you included! I see why you have mixed emotions about going home, but it would be nice to have at least a short respite too before they bring out the big guns again. Yeah on no IV!
Keep on keepin' on, girl. Thinking of you.
Jami in WA
Farmgirl Sister #266
http://woolyinwashington.wordpress.com/
http://farmhouseflair.etsy.com |
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RuralSuburbia
True Blue Farmgirl
251 Posts
Leslie
Northern CA
USA
251 Posts |
Posted - Mar 16 2009 : 11:34:30 AM
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"LETS GO ARIA, LETS GO!" *CLAP CLAP* So glad to hear you are walking around a bit and getting to play! And hopefully you get to go home today! YAY!
Julia, I just read the updates on this thread (been gone all morning) and I can't believe we chose the same movie...I LOVE the scene towards the end, where Elizabeth is up at dawn, walking in the green, misty field, and she sees Mr. Darcy walking towards her....Oh, he just takes my breath away when he tries to tell her he loves her...and stumbles over the word 'love'...
((big sigh))
For the kids, check out these books by Sarah Klise: Imagine Harry, Shall I Knit You a Hat?, the Night Mare, Just type in 'sarah klise' in at Amazon and it'll bring her up...this author is coming to my son's elementary school tomorrow, and I LOVE these books! So clever!
*I've got stars in my eyes and exactly $1 in my pocket!* |
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kristin sherrill
True Blue Farmgirl
11303 Posts
kristin
chickamauga
ga
USA
11303 Posts |
Posted - Mar 16 2009 : 1:08:24 PM
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Julia,it's good to see Aria is much better. And you're right about home being the best place for her. But also getting her home then having to go back tomorrow. I just hope and pray the antibiotics get rid of the infection she's fighting. And that you keep breathing and get the rest you need to take care of Aria when she gets home.
Kris
Turn your face to the sun and the shadows fall behind you. Maori proverb |
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julia hayes
True Blue Farmgirl
1132 Posts
julia
medical lake
wa
USA
1132 Posts |
Posted - Mar 16 2009 : 1:24:53 PM
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OH GIRLS!!!
We're coming home. Aria has had a low grade fever all morning/day (99+) but it hasn't made it up to 100 or more so we're being sent home with the big antibiotic and a list of what to do's if...Basically if she spikes a fever and nothing else then we can give her tylenol. If she spikes a fever, has chills or anything else then we come back.
Tomorrow morning we come in as scheduled for her monthly big whopper chemo and exam. We'll know more then in terms of what her counts are and so forth.
Aria is in such better spirits. Holy Moly!
Poor Reo has just not understood that being in isolation and no playroom time is not something I am deciding. It feels like a punishment to him and for all practical purposes it is. Poor thing just doesn't understand. FORTUNATELY, they have AMAZING child-life specialists here and they have a special 4th floor play area for siblings ONLY! I asked Krista, our favorite, if she could take Reo up there for a change of scenery and some play time. She did and he was BEAMING!! He needs that special time. I want him to have more understanding than he's capable because it would make life so much easier for ME but that just isn't the case. In this matter, I am infinitely grateful there are professionals here for just that purpose.. It is so wonderful and we are so lucky!!
Your constant vigil has been breath-taking and truly I'm exceptionally grateful. You can be sure that I'll be including some of this in my writing/detailing of this particular part of the journey..
As many of you know I email to friends and family about every aspect of this. If you can believe it, my email journal is just shy of 700 pages and we still have 13 months to go! OY!! How am I ever going to compile all of THAT into a book??!! help...loads and loads of help!
Farmgirls, I love you all that you do, say, represent and share!!
I'll update you when we actually get home!!
~julia
being simple to simply be
Farmgirl #30
www.julia42.etsy.com |
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ruralfarmgirl
True Blue Farmgirl
4309 Posts
Rene'
Prosser
WA
USA
4309 Posts |
Posted - Mar 16 2009 : 1:42:03 PM
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Julia~
I am doing the happy dance. Just the good news I needed today! I am glad that you are feeling the "farmgirl Love"... what was that you told me in a recent email about you not being "all that"... See, I love it when I am right! You are all that and more..............I will keep the prayers and happy thoughts coming to get you all through tomorrow. You are greatly and deeply loved.
Rene~Prosser Farmgirl #185
http://farmchicksfarm.blogspot.com/http://renenaturallyspeaking.blogspot.com/
Circumstances made us FRIENDS; MaryJane's has made us SISTERS :) |
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Family Matters: Aria is off to the ER!!!! |
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Aria is off to the ER!!!!
