Happy World Down Syndrome Day 2010!
Scroll Down to see why Reece's Rainbow wants to hear from you!

I'm Vika's 21.3.10 Warrior!

You can give any amount! In honour of World Down Syndrome Day if you are able to give $21 it will help her to find a forever family! Thank you!
All donations go directly to Reece's Rainbow and are tax deductible! Please specify 'Vika (14)' in paypal's special instructions!

Reece's Rainbow wants to hear from YOU! Selected stories will be posted this week on the Blog! http://bit.ly/WDSDay

It is Down's Syndrome Awareness Week in the UK this week! Then, Sunday is WORLD DOWN SYNDROME DAY!

Today I'd like to introduce you to the Down Syndrome Research Foundation-UK. The following is from their website. Please visit their site to see how you can get involved! There are many exciting things happening in the world of DS!


Research Overview
The DSRF (UK) is dedicated to commissioning and funding research that will benefit those with Down’s Syndrome. Increasingly, we recognise that in order for our research to be effective it needs to take on a multidisciplinary and collaborative approach. We need to bring together academics, medical experts and researchers to investigate, examine, and develop treatments for the medical conditions and disabilities that affect people with Down’s Syndrome. Our current pilot study on ‘Nutritional Interventions in Children with Down’s Syndrome’ has already indicated that there are significant differences in the blood of Down’s syndrome children and that of their siblings. We now need to take this forward with a larger research study and an interdisciplinary research approach, bringing together, neuroscience, medicine, genetics, pathology, health and nutrition.
The mapping of the human genome means that the genes on chromosome 21 have now been identified. Theoretically, it should now be possible to identify the genes associated with specific medical conditions and disabilities, analyse them, understand the influence they have on the different developmental processes and design treatments aimed at addressing them. This is already opening up exciting new opportunities and avenues for research involving areas like epigenetics, and with the expected growth in the pace of research, we are moving towards finding treatments and cures for many of the conditions that affect children and adults with Down’s Syndrome.
Down’s Syndrome is the single greatest cause of mental impairment in the world. More than this, people with Down’s syndrome are at high risk of certain medical conditions and disabilities. For example, they are twenty-fold more likely to develop diabetes, and certain cancers than the non-D.S. population. Furthermore, it is believed that everyone with Down’s Syndrome develops Alzheimer’s like dementia by the age of 40. However, these afflictions also mirror those found in the population in general. Therefore, by studying Down’s Syndrome, we can gain a greatly improved understanding of medical conditions that ultimately, will be of benefit us all.
We undertake to build on the research that has already taken place. We fund and manage research in association with other groups and charities and we share our results and findings. We believe that this approach will ultimately bring huge benefits to people with Down’s Syndrome, their siblings, parents and to carers of those with Down’s Syndrome.
Please, please, support us. Our work is vital and we receive no government funding, we rely totally on voluntary contributions.  Please click here to make a donation

It is Down's Syndrome Awareness Week in the UK the 15th-21st of March.

The Down's Syndrome Association here in the UK have several ways you can participate including their Shifting Perspectives Collection.

The following is from the DSA website

Shifting Perspectives

During our Awareness Week we will be celebrating the sixth year of Shifting Perspectives with the continuing support of GlaxoSmithKline.
We invite you to join us at thegallery@oxo as we launch our new collection for 2010.  As with previous collections our photographers continue to break down the stereotypes whilst raising awareness of the condition.
thegallery@oxo
Oxo Tower Wharf
Bargehouse Street
London SE1 9PH
Wednesday 17th - Sunday 28th March 2010
open daily from 11am - 6pm
Admission FREE

Since 2005, Shifting Perspectives has brought together the work of twelve photographers who have a personal connection with Down's syndrome.
This exhibition examines the lives of people of all ages with Down's syndrome, their connection to the photographers and the changes throughout the course of their lives.
In many ways the work reflects a contemporary trend in documentary photography where practitioners are no longer purely objective observers with little understanding of the complexity of the situation; they are personally involved with their subject matter.

This Sunday is World Down Syndrome Day! CLICK HERE for details on how you can participate! :)


This week in the UK it is Down's Syndrome Awareness Week which leads up to this Sunday, which is World Down Syndrome Day!


Special Needs Blog

Thank you to Tammy (she's an absolute star!) at 5 Minutes for Special Needs! Reece's Rainbow's 21.3.10 Project is being featured today!

I'm guessing more of you reading this than not know about 5 Minutes for Special Needs, if you haven't heard of them they are a sister site to 5 Minutes for Mom

Their goal is to support, inspire and offer insight.

Be sure to visit their site and meet the entire team, of which Tammy (Parker's Mum) and Parker are the editors!

Thank you, Tammy!

This week is Down's Syndrome Awareness Week in the UK (and yes, in the UK the correct way to say it is Down's Syndrome, whereas in the US it would be Down Syndrome).


So, I'm hoping to share little bits of information here and there that could prove useful to anyone who may be touched in some way with Down's Syndrome. Be it your own child, a friend's or family members or perhaps you have a heart for people with DS and you work or volunteer for something such as the Special Olympics.


Or maybe, perhaps, these posts will shed some light on just what the truth is about DS where there is such a myriad of misinformation out there, some still being given to parents by health care professionals!


This is why the Down's Syndrome Association in the UK has a campaign to help change this!


It is called 'Tell it Right, Start it Right' and for DS Awareness week they are urging people to go to their local maternity units and ask them what information is available for pregnant women and new mothers regarding Down's Syndrome.


This is from the DSA website so you can download the various information packs.

Tell it Right, Start it Right Action Pack

Tell it Right, Start It Right Action Pack
During our annual Awareness Week 15th - 21st March 2010, we are asking are members and supporters to visit their local maternity units and ask what information is available for pregnant women and new mothers regarding Down's syndrome.

Today is the start of the UK's Down's Syndrome Awareness Week.

I would encourage you to visit the DSA's website to see how you can participate!


One way you can participate is by entering the 'My Perspective' Photo Competition!

 

gsk_logo My Perspective

Calling all Budding Photographers!


The Down's Syndrome Association (DSA) is pleased to announce the launch of My Perspective - the first ever photography competition for people with Down's syndrome! 

bill_cameraMy Perspective is proud to be a part of the hugely successful Shifting Perspectives project supported by GlaxoSmithKline.  For the past five years, we have been showcasing work from a fantastic collection of photographers who all have a personal link with Down's syndrome.  Recently the DSA has been approached by a number of photographers with Down's syndrome which has given us the idea to start My Perspective.  It's now YOUR turn to demonstrate your photography skills.

We are looking for you to send us images of your friends, family, pets, places you've visited or anything else that interests you!

Winning entried will be annouced at an exclusive awards ceremony in June at a secret location in London.  Prizes will be awarded to the winner and two runners up, with ten special highly commended prizes.
The winning entries will be displayed at the Proud Gallery, Camden later in the year and the winning image will become a permanent part of the Shifting Perspectived touring exhibition.
The submitted images, up to three per person, will be judged by a panel of professionals and all those shortlisted will be notified by 14th May 2010. 
Images need to be sent to the following address by Friday 16th April 2010:
My Perspective
Down's Syndrome Association
Langdon Down Centre
2a Langdon Park
Teddington
TW11 9PS
or emailed to: myperspective@downs-syndrome.org.uk This e-mail address is being protected from spambots. You need JavaScript enabled to view it
You can either download and complete an entry form and submit along with your image/s.
Or you can fill in the form and enter onlineMake sure to have your photos ready to upload.
Please note that any images received after the deadline will not be entered into the competition.  Unfortunately, images cannot be returned unless sufficient postage is included.
For a full set of the rules and terms and conditions of the competition, please click here.

Today in the UK we celebrate being a Mum. I know I am the most blessed Mum of all but it was nice that all the Mum's could celebrate! :)

I had a lovely day with my husband and little girl. The sun was shining, everything was perfect! It was lovely!

I am very thankful for the little girl I was given... she is perfect... beautiful... a blessing in every way. God knew what He was doing because she has changed me for the better.

So, thank You, Lord! I LOVE being a Mum and especially LOVE being a Mum to my little girl!

:)


When it appeared that there was no God, You showed yourself to Moses

When it appeared you came to earth in the weakest form, a baby, You were the most powerful Man on the earth. The enemy knew it and tried to kill You.

When it appeared the enemy had won and You were killed on a cross, You won something bigger than earthly life... you tore the veil... You eliminated that which separated man from God, You gave us something more than we could ever lose.

When it appears we are struggling to win and the enemy is telling us we've lost, we only need to remember that the battle was already won... on that cross... and the victory is already ours.

When it appears that the life inside of us is imperfect (by man's standards... which are so far beneath Heaven's) You have really given us more than life... You've given us a gift that is so far beyond what we ever imagined or knew. Something more and better than anything. Once you know this, you will never go back to the ignorance you lived in before... and we will realise that we are the ones that are farthest from perfection.

When it appears that things have overtaken us and we are enduring hardships, You are perfecting us and teaching us things we couldn't learn in comfort and things we'd never again trade for comfort ...

Man sees poverty, we see miracles of provision
Man sees imperfection, we see how flawed their measure is
Man sees weakness, we see You giving us Your strength
Man sees what he can do, You show us how much more You can do
Man sees the outside, You show us Your heart
Man sees the earth, a world of nations and people. You, You see your children
There is more that man does not see than that he does. You reach down into our darkness and remove our blindness.
No matter what the world has told you, when you see a person with Down's Syndrome, you are looking at a miracle, a piece of the hem of Heaven... a gift.

A gift...

This Monday is the beginning of Down's Syndrome Awareness week here in the UK. 

The 21st of March is World Down Syndrome Day all over the world.
If you've never had the privilege to know or be related to a person with Down Syndrome, it would appear that you are missing out...

...because you are



These days probably closer to UNconsciousness...

Little Poppet won't sleep once it is light. Well, honestly, I used to be like that. I would awaken by 6am every day. Most of my life, in fact. With or without an alarm. What changed that for me was... Little Poppet ha ha! I suppose getting older may have a play in that... Have I mentioned that my last birthday was actually my last birthday? lol So, I suppose I'd better try to get to bed earlier because this past week I've been struggling to keep vertical far more than I've been horizontal.

The MIL is having the lodgers' rooms redecorated whilst she just has the one. So, he's staying here with us for the week. He's a lovely chap, very serious ... he's the sort of person that when he enters a room it feels like two people have left. He doesn't say much, just looks as though he's really pondering what you are saying and nodding his head and literally everyone that I've seen having a conversation does the same thing... they just start rambling on and on and making fools of themselves. And yes, I DO have personal experience in this... poor chap never hears anything other than Reece's Rainbow this and orphans that when I've spoken to him.

Reminds me of when I was about 12 and so shy that when people would come up to me and say hi to me, I'd just stare at them. I didn't know what to say, didn't really want to say anything so they'd just sort of natter on and on, all sorts of nonsense until the awkwardness consumed them and they'd leave. I out grew this. The MIL's lodger hasn't...

The SIL came down to stay for a night as well. She actually came to see the MIL but the train from Manchester to London is so expensive, she looked into it and found a bus that offered the journey to London for £1. So, brilliant price, but that meant the MIL had to meet her at 11pm in London and since we are closest they came for the night here then left in the morning. Just long enough to fill our home with hamster dander and leave - sigh lol. They bought us a curry though so that was nice! 


Little Poppet is still and always will be the best thing ever! lol She has completely mastered the front controls on the DVD player. This has happened despite our concerted efforts to prevent her from learning it. She is very clever and apparently, despite our using the remote for everything (she mastered the remote over a year ago so it is kept up high) she has sussed what each button does and she uses. them. often. She also puts the DVDs in the DVD drawer (shoves them through the slot at the top - saves time on opening the drawer.) Surprisingly, she always holds them picture side facing her so they don't get scratched from that.

She's also decided that clothing is optional. Thankfully trousers are still allowed as she will pull the sides on her nappies if she isn't wearing trousers. So... we go a lot of places outdoors that require a coat over her top and try not to go places where one would remove one's coat indoors because well, people would probably start to wonder what my late night job was!  Please tell me when this phase ends. No really, please tell me lol!

London is allowing the sun to shine these days! Winter has lasted longer this year. Not entirely impressed with that, though referring back to the previous paragraph it has meant wearing warmer coats longer. But we've had lots of lovely walks and plays at the park. Every walk we choose a different colour to look for. I'm thinking we may start doing other themes, as well, but so far the colours have been a good thing. At least the Mr,. if he's with us, or just me when he's at work are able to find things with the different colours. Little Poppet will look and point but I think she thinks she's just affirming us that indeed we DID find a yellow leaf.

In other news, I've been very busy with Reece's Rainbow projects. I never feel caught up (ha probably because I'm not lol) but I believe so in their purpose and vision that it is very worth the late nights. The Mr. and I were just talking this morning about the fact that we feel a bit like we are just on another plane than the rest of the world. Those who don't 'get it' and consider their lives in crisis over the most trivial things... it is difficult to relate. There are disabled orphans in the third world who deserve life and a family and love, just as much as you and I... I am forever ruined lol. Never again will I be able to just chat about nothing ha. Be warned, if I meet you on the street you will hear about the plight of the orphans! :)

So, that is our life of late. No sleep, no clothes, no sleep (did I say that already?) but joy! We are blessed. We don't have a lot of money but we have something that supersedes anything money could buy. God provides when we can't and well, what better place to be! In His Hands, so close we can feel His heartbeat...  





I'm a 21.3.10 Warrior!

Before I go on, here is where YOU go to become a 21.3.10 Warrior! Read what it involves, choose a child from the Reece's Rainbow web site and go!

So, please meet, Victoria or Vika as she's affectionately called. She's beautiful, isn't she? She is definitely an orphanage favourite and well, if I'm honest, she's mine too.

Oh you have no idea how I wish the words in that sentence 'she's mine' didn't just refer to the rest of the thought, 'favourite'. I wish she really was mine!

If I didn't live in the UK I know I'd already be in the process of adopting her.

I absolutely long to be this girl's mum but knowing I can't be, I grieve and long for her to have a mum that will love her and care for her and give her all the hugs and loves and cuddles I give my own Little Poppet.


So, I'm hopeful that you will all help me find her a family. If you have facebook, I hope you'll send your friends here to learn about her. If you are on twitter I hope you will follow me @PoppiesBlooming and RT all my tweets about her. If you have email I hope you will send an email to everyone you know telling of this little Russian girl that needs her forever family. She already has £4793 in her fund already so what a brilliant help towards the cost of her adoption!

uamt -9
Victoria F.
Brothers and sisters no
Date of Birth: May 2005
Gender: Female
Eyes: Blue
Hair: brown
Character: active and social, possible cleft lip


"In the highest Volochek live girl - Vicky. The girl's alive, radiant blue eyes, a mischievous "tail", winning smile and open face. It is well built, childishly naive and coquettish - a child wants to love, embrace, lisping with him. Викуля and she is always glad to new people, smiles all around, laughing loudly and zalivisto, fins and happy sitting on their hands. Wick - a lovely little girl, clockwork, energetic, affectionate and sociable, and in general, little girl, whose place at home, at the table with mom and dad, where you can happily talk down, sitting on a high chair, twist and tuck into cakes with apples ...

In May 2005, in Tver maternity mom did not know that her daughter will be a bright and good, she thought that this child with Down syndrome becomes a burden and an object of ridicule, and therefore given it up ...

Vike almost 3 years, her illness with proper care, attention and care can be greatly adjusted. And now it is not very different from their peers. Vikusya already said a few words, knows the names of animals and birds can show them the picture. Of course, it is not very assiduously in the classroom, her mood quickly changed. But she already knows itself to assemble and disassemble pyramids, cups-liners, understands the differences in the sizes of objects can draw straight lines and closed lines. Likes to play with the doll, feeding her, shakes and washes. Girl with easily imitate adults, able to dress with a little help, eating - not a bit careful, but herself, asking for a pot, washes his hands ... He loves affection. Vika - a normal child.
2 trips



  • 1st trip, Both parents for 5-7 days




  • Wait 2-3 months for court




  • Both parents travel for 2nd trip, one can leave after 4 days, the other waits 10-25 days longer (depending on if the 10 day grace period is waived)




  • No family size restrictions




  • Both parents must be younger than 60 years




  • Total program fees under $30k (travel and hotel varies depending on
    accommodations requested and time of year.)




  • Fee includes a $1000 orphanage donation




  • Married couples and single mothers may apply



  • In May 2005, in Tver maternity mom did not know that her daughter will be a bright and good, she thought that this child with Down syndrome becomes a burden and an object of ridicule, and therefore given it up ...


    This breaks my heart... this little girl's family bought the lie... and look what an amazing little girl they gave up.  She is 4 years old - my daughter just turned 4. In a few months Vika will be 5, I wish I could give her the gift of a family for her next birthday!


    I will, personally, help the family that chooses her to set up and design a blog (I do free blog design for anyone adopting through Reece's Rainbow), help with fundraising, pray, tweet, anything you can think of that I could do to help.



    Please, help me find a family for this beautiful, amazing, vibrant little girl.  



    So, my friend Renee' had the idea to ask everyone who can to donate $21 towards her warrior child. So, in honour of 21.3.10, World Down Syndrome Day, I'm asking the same! But any amount, $5, $10, $15 will go a long way toward helping Vika find a family! Thank you so much for joining me in this!

    because she's beautiful...

    r-word.orgToday is THE day! The Day to Pledge to Show Respect to Everyone!


    Please do what you can to spread the word to end the word today! Make the pledge today to show respect to everyone!

    ___________
    r-word.org
    ______________________



    John C. McGinley says it so well in the Huffington Post
    ... (emphasis mine)

    r-word.orgDignity is inherent to the human condition. An individual's dignity is not only an entitlement. It is a fundamental quality that distinguishes each of us and lends an informed significance to everything that we do. And any time a person's dignity is stomped on, it is wrong! The R-word robs people with Special Needs of their dignity. And it is time to stop.

    r-word.org

    Thank you!

    01:43

    We Cry Out

    Please, this is a very important and serious post. 

    This is Timofey...

    He desperately needs your prayers. He is waiting for his forever family to come for him in Eastern Europe. They recently found out he was in hospital with leukaemia.  Someone from the US that is there right now has been to hospital to see him. 

    His forever family, his mum, and my friend, Michelle has asked this for us to pray for for him.

    Hi everyone!!  I wanted to give you all an update.  I know that you were all aware that Timofey was hospitalized with suspicions of leukemia.  Alicia found out from the orphanage doctor which hospital he is in and she got to visit him yesterday.  I was heartbroken after talking with her and found out that Timofey has already received 8 rounds of chemotherapy and he is not doing well.  They had to stop the chemo, because his little body was not tolerating it very well.  He is laying on his stomach because he has huge bed sores on his bottom.  She said he is in terrible pain.  I talked with Meredith today and she informed me that we have to have it added in our homestudy that we are approved to adopt a child with, not only Down syndrome, but active leukemia.  So, tomorrow, I am going to make the call to our social worker and make this request.  She already thinks we have lost our minds by wanting to adopt three children with special needs.  I ask that you please pray that her heart is softened and she allows this, otherwise, Timofey may not make it. The doctor told Alisha at her visit that he needs to get to America, and I pray that happens soon.  Our homestudy is set to be submitted to USCIS at the end of the week.  Our dossier is all ready to go, we are just waiting on USCIS approval.  Meredith said that she believes they would get us there fast considering the circumstances, but she said ultimately, the fate of Timofey rests in the hands of my social worker, and of course, God.  Thank you so much for all your prayers and support!!!
    Maybe it is because I did worship for so long, it is my first and most natural response to most things lol... good things I praise Him and difficulties I find myself on my face worshipping because only when we allow him in will those challenges either be met or overcome us. 

    The Bible says that God inhabits in the praises of His people (Psalms 22:3). In other words, God “dwells” in the atmosphere of His praise. This means that praise is not merely a reaction from coming into His presence, it is what brings us into the presence and power of God and allows us to enter the sacredness of His glory.

    Anyway, I'm supposed to be working but I guess I'm worshipping and praying for my friend's son and that is certainly not time wasted. We are first and foremost called to pray for one another. Whenever one among you is sick, those of you who are righteous should pray for him!

    We are the righteous... certainly not because we are perfect or without sin lol... we are righteous because Christ has made us so... we are redeemed and righteous because of the name we wear when we are his children. Children of the most high and living God... So, when we cry out to Him, well, he will not give us a stone when we ask for bread...

    So, will you cry out with me to the Lord, Most High for Timofey? 




    If this doesn't show up for you, click here to view the song on youtube:
    http://www.youtube.com/watch?v=blnfOA7Uqqo&feature=related

    March is here and with it comes several things of note!

    Firstly, you may have noticed the huge graphic next to this... It is for the 21.3.10 Project at Reece's Rainbow.

    In honour of World Down Syndrome Day you can post this graphic all over the place AND even buy clothing, water bottles, messenger bags, journals, cups... all sorts, all with the 21.3.10 Project logo on them! So GO HERE to learn how you can participate in the 21.3.10 Project!

    Secondly, though sooner, the 3rd of March is Spread the Word to End the Word day. Please join the Special Olympics in this endeavour to teach respect of people with cognitive delays.

    As well, in the US the month of March is Down Syndrome Awareness month. We in the UK have a week in June usually for DS Awareness so I think we'll choose to celebrate in March with the Americans, as well!

    People think that Down Syndrome is a birth DEFECT, oh how wrong they are!  It is the purest gift of love and not just any love, totally overwhelming, consuming and  UNCONDITIONAL love you'll ever get to know and feel.

    Recently there have been attacks on people with different needs, especially DS in the news, entertainment and on facebook!

    This is a battle that is so deeply personal and so difficult
    , I do not know why God put me in it. I feel so ill equipped but I know I must.

    Which is why I need to ask that you ALL ACTIVELY participate in these events... Tell people about these events. Explain to them that DS is a GIFT not a curse. Please advocate for the precious children and people with DS that teach unconditional love, closer to Christ's example than anyone else and life without malice or prejudice. They need you to stand for them.

    Who will fight this fight for them if we don't? And what happens now in the coming months and years will determine their futures. It is getting very ugly in this world for people with DS and disabilities. Please don't assume someone else will fight this battle... please enlist yourselves on behalf of all the people with DS that bless this earth with their presence...

    AND, the next time you see a person or child with DS, stop... take notice. That life is nothing short of a miracle. The abortion rate for pregnancies with DS diagnosis is now up to 98%. That is staggering. So, not only are you seeing the blessing of a person with DS, made closer to the image of God than the rest of us, you are seeing the miracle of a life that many are trying to completely eliminate... I believe, hand on heart, that the two points are most definitely related...

    So, thank you for reading this and please know, that as Proverbs 24.12 says... once your eyes have been opened you can not pretend you do not know what you should do, God knows you know and will hold you accountable. So, consider yourselves enlisted for this purpose... and thank you from the bottom of my heart for joining me in this...

     "Remember those...who are mistreated as if you yourselves were suffering." (Hebrews 13:3)


    http://www.r-word.org/











    09:30

    A Birthday!

    Not mine, not the Mr.'s and not Little Poppet's! But it IS a birthday! Grab The Birthday Button!

    And yes, the big Happy Birthday button probably gave it away but if you still don't know, it is the T21 Traveling Afghan's 1st Birthday!

    I normally don't post on my blog about blog's I've designed but this was for a birthday so well, I am lol! Be sure you go visit the T21 Traveling Afghan Project to see how you can participate but also GRAB the Birthday button! I also want you to grab the other button (below) for the rest of the year but let's all join in for a big blog party for this community building blanket!

    Here are a few of the 'stats' that Chandos has posted on the birthday post about the Afghan's first year... (you have to visit the actual site to see more details and stats, including the photo of Emily Perl Kingsley WITH the T21 Afghan!)

    • It has visited nine states and 27 families in the United States.
    • It has attended a number of Buddy Walks and The Buddy Cruise (where it was photographed with Emily Perl Kingsley!) It has been in the local newspaper.
    • There are families waiting in 14 countries for the afghan to visit them.

    You need to visit them to see how she makes them, about the Afghan of Their Own project and how long it takes Chandos to make one of the afghans.


    So a BIG Happy Birthday to you, T21 Traveling Afghan from Poppies Blooming and the Poppies' Blog! (my spell checker keeps telling me to spell that 'travelling' like we do here lol) and here's to many more to come! :)




     
    Grab This Button

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