Archive for the 'help' Category

Change

Thursday, July 11th, 2013

If you have read the post below you know we are trying to make the term “Hall’s contractures” refer to arthrogryposis multiplex congenita.

“Hi, my kids have arthrogryposis multiplex congenita… you know, Hall’s contractures! Google it!”

And it’s so much easier to Google than “AMC” which gives you movie theatres, or arthro…gry…posopsos… that word.

(Actually now if you Google “Hall’s contractures” the first few links teach you all about my kids’ condition! Awesome!)

I don’t want to lose our arthrogryposis identity or change the name of our wonderful Arthrogryposis Multiplex Congenita Support Incorporated group that I adore. We’re NOT swapping out one name for the other. What we’re doing is adding a colloquial term for a long medical diagnosis. (You know, how we call solanum tuberosum… a potato.)

We’ve started a petition on Change.org to do just that! We’re asking that American Medical Association, World Health Organization, Shriners Hospitals for Children, Children’s Hospitals and all major hospitals consider adding “Hall’s contractures” to the literature they distribute in print or on the web on arthrogryposis multiplex congenita. (For example: “Hall’s contractures or arthrogryposis multiplex congenita refers to a condition of the joints…” OR “Arthrogryposis, also known as Hall’s contractures, is cool beans…”)

Hall’s contractures has already been added to the arthrogryposis wikipedia page.

That’s it!

Please go here to sign your name to our petition and read more about the cause.  Pretty please do this for me. Please share this petition far and wide to anyone and everyone you know affected by AMC or NOT affected at all!

It may seem like such a weird or small thing to do, but you’d be amazed how much recognizing, pronouncing and remembering a diagnosis can make us feel less alone in the world and less strange. Sorry but arthrogryposis sounds like the plague and “Hall’s contractures” sounds like a simple physical condition. Plus both my kids had the straight arms (extension contractures) and referring to it as arthrogryposis (which literally means crooked) was so confusing and misleading. Calling it Hall’s contractures makes more sense! And I’m hoping this can get us more awareness and possible future funding for research!

Last year when we were on the news, the reporter mispronounced arthrogryposis. I have dear friends and family members who cannot pronounce it either. They love my kids, but they don’t know what they have. When fundraising for our adoption we had people say, “Can I just say you’re adopting a guy with a big long disability?” Why in the world would any celebrities or organizations want to fund research for us?! They can’t say the word!

Hall’s contractures. Sign the petition. Even if you think it’s dumb or won’t do any good. I’ll take the blame if this fails. Let’s just try something. Please.

Grafted Branch

Friday, April 26th, 2013

20130203_121351

My husband and I started a ministry for orphans called Grafted Branch. My husband made a pretty website for it too: www.graftedbranch.org. So far we’ve had lots of help from our friends, including Lauren Burke who did the art. We designed this ministry to be picked up by our church so it’s got “Bible” and “Christian” all over it, although everyone can help orphans. If you’re interested you can sign up to be a prayer partner. In May we’ll be helping the little guy who we’ve been advocating for, Raymond.  I hope you can join us!

Give some green on the day you wear some green!

Wednesday, March 13th, 2013

LandRblogStPDay - Copy

Laelia and Roland can’t wait for their new cousin!

Many of you already know that my sister is adopting my nephew from Congo later this year. They have an online auction going on right now through the month of March. You can look at all the goodies (including a full-size star gate for us geek folk) here.

But that’s not why I’m writing. I’m writing because an anonymous donor has offered my sister a $500 matching grant to bring her boy home!

But here’s the catch: the matching grant is ONE DAY ONLY.

That’s right. This Sunday, March 17th, on St. Patrick’s day when you put on some green please consider donating some green too!

Every penny you give their adoption on Sunday will be matched up to $1,000! (So if we raise all $500 then they will throw in another $500!)

To donate go here.

Thanks so much!

Remember this Sunday only!

Thanks!

!!!UPDATE!!! 3/17/13 They made the entire matching grant! Thanks everyone who gave!

Christmas challenge!

Monday, December 10th, 2012

*GASP*

(Heh, that picture of Laelia never gets old. ;))

Laelia and Roland’s cousin made it to $1,000! Before the 12/12/12 deadline! Woohoo!!! Not only that, but their account now has $2,000! That’s over half way to our goal by the end of the month!

And that’s not all!

We have a Christmas challenge!

Some anonymous donors (different ones) have stepped forward to keep this thing going!

So starting tonight funds will once again CONTINUE TO BE MATCHED!!!

Every dollar will be matched until the account reaches $4,000 OR until 12/25/12.

That’s Christmas Day!!!

Go here to donate.

$1 will become $2!

$10 will become $20!

$100 will become $200!

$234 dollars will become $468 dollars!

And so on.

Every donation is matched within 24 hours and you can see your donation plus the matching donation directly on the donation page.

Please share with your friends!

We want to use this entire grant!

Thank you!

“All we want for Christmas is our cousin!”

Double your fun

Friday, December 7th, 2012

Laelia and Roland have been given a matching grant to get their cousin home!

(Art by Lauren Burke for those of you who asked. She does good work.)

For every cent you give “Cousin” Thompson pictured here, it will be doubled until 12/12/12 at 12:12pm (CA time) or until they reach $1,000!

So your $1 will double and become $2!

$10 will become $20!

$100 will become $200!

Go here to donate!

All donations are tax deductible and DOUBLED!

And of course all donations go directly to adopt a little  Congolese  boy who is coming out of poverty.

Did I mention that today is Laelia and Roland’s uncle’s birthday?

Let’s get him a fully-funded adoption for his birthday!

Please give! We don’t want to lose a cent of this grant!

Merry Christmas!

The AMCers we left behind

Friday, October 19th, 2012

We brought our son home two months ago. While we were in the  orphanage visiting him one day, a little girl around five years old walked up to me. She was shy and had some obvious delays. She wore her blonde hair in long pig tails under a cloth bonnet. She was simply a doll. Her movements were slow and precise, like a princess. Or more likely due to slight CP. She always had a caretaker with her holding her hand. But this time, after a couple of weeks of seeing us, this time she got brave. She walked away from her distracted nanny and towards us while we blew bubbles for the boys. She knelt down on the blanket beside me. I smiled at her and said “previet.”    She smiled even bigger, scooted closer and whispered, “Mama?”

My heart broke. (I’m crying as I write this.) She reached out a hand and gently touched my knee. I could barely feel it. I choked on my words, “Nyet, baby, nyet.” I shook my head. She looked down and mumbled something, “*mumble mumble Mama? Papa?” She faced my husband with her head still down. I knew the phrase, “I am your mama,” (yet voy-a mama) in Russian, but wasn’t sure if adding a “nyet” (no) to that would make it “I’m not your mama,” or if I would get her hopes up. The weight of crushing this girl’s hopes left me mute. I said nothing.

She asked again, “Mama?” It was a bit desperate, a bit guarded. She started to pet my knee so tenderly and lovingly. Her nanny heard her that time and a string of chiding Russian flew out of that woman’s lips as she firmly took the girl’s arm and marched her away.

I have since looked for her, my little shy princess, but it doesn’t seem she’s available for adoption. Like many children there, her parents decided to keep her in the orphanage. She’s a social orphan. It’s a terrible, hopeless fate.

My friends have a similar story. They were in Ukraine the same time as us. They met a little girl who held their hands and asked for a Mama and Papa. Her need for parents was desperate. Thankfully she is available for adoption! Reece’s Rainbow calls her Aubree. My friends told me they would have taken her home, but they were only cleared for one child. Aubree is available for adoption, and is longing to be adopted!

Aubree as well as two other AMCers who want families are up for a matching grant this month. If they each raise $500 in donations from all of us then an anonymous donor will double that. If all three kids get their $500 matching grants, then a fourth child with AMC will get a bonus gift. We have until October 31st, but the faster we raise the funds the bigger the bonus gift will be. If we don’t quite raise the funds, then the matching grants are lost. Read about it here.

I feel like I’m always asking for things (read: chocolate) and I’m always being given things. Lots of things. We’re rich beyond measure with the friends and family we have.  But I’m sick for these kids. Sick for them. I close my eyes and see them. I close my heart but still feel them. And I feel helpless. Would you consider helping them? Helping me? They are so  insignificant  in the world. So small. They are the least of the least. Poor,  destitute  orphans. In Matthew 25:40 Jesus says, “Truly I tell you, whatever you did for one of the least of these, you did for me.”

As Jen wrote in her blog this morning, “I hear you, God; I recognize what you grieve for. I see this world, of which I reside in the top 1% of wealth, and I will not imagine that much is not required from whom much has been given. I refuse to identify myself somewhere in the middle of the pack, because I am so far removed from the common human experience, I know I cannot trust my perspective.  While babies are born in tent camps and pastors are sleeping outdoors on mattresses next to the orphans they are raising, I will not defile my holy task by turning your Word into a metaphor, imagining that orphans doesn’t mean orphans and hungry doesn’t mean hungry.”

Saving His Sparrows did a blog post about these kids here. My friend Julia also shares about them as well as a dark look into their future (her son’s past)  here. Don’t let us fool you, our blogs are not going to reach many people with money in their pockets for these kids. This isn’t enough awareness to change anything.

Laelia  and Roland both had birthdays this month. Would you donate a few dollars to Aubree or  Elizaveta  or Raymond as a birthday gift to them? Since they don’t get birthdays. I’m asking you. This is personal for me. I see their faces. I’ve seen what it’s like over there. It broke me.

Go  here  to drop a few mites in for Aubree.

Go  here  to make an investment in  Elizaveta.

Go  here  to help Raymond in his desperation. His need it urgent and his living conditions are scary.

I know these kids’ greatest wish is not Disneyland or even being able to walk or live in a nice house, but it’s having a Mama and Papa. So  please consider one of these children as your own. Be brave about it. Speak to your spouse about it. Adoption saves lives. These kids have AMC like my kids, and potential like my kids, and yet they are lost. They are without love.

Please. For Roland. For Laelia. For me. For yourself. For these kids. For His great name’s sake. For humanity. For our future. For the countries in Eastern Europe who hold them. To change things. To carry burdens. To alleviate pain. To be part of the great work of orphan care. We need you. They need you.

The hard times and the good

Tuesday, September 18th, 2012

Peek-a-boo!

Today was the day I was going to write about my son’s one month home. He’s been with us one month. I have so many pictures of this trouble-maker, you have no idea. And videos. And accomplishments. And joy. And love. And a high number of just his finger. (Stop pointing at the camera, my love, and keep doing the cute thing you were doing. I give up. Cameras are too cool and must be pointed at.)

But life is happening and it’s too much to find the time to write. I will share–believe me these picture demand to be shared–but not until next week. I hope next week. After we’re back home from medical travels. (Oh I’m not looking forward to having Mr.  Trauma  back on a plane. God help us.)

You see today is hard. Today my husband is sick. Today we missed the school bus. Today Roland has an appointment to get casts and we’re going to the appointment but refusing the casts… again… because our son is not ready. Tomorrow we fly to Philadelphia and Delaware for medical treatment for both kids. We arrive so late that we can’t get into the three Ronald McDonald Houses and must get a hotel. Today I called the rental car company and found out our reservation wasn’t put in. Today I feel defeated, busy and stressed.

But where my focus really is, even if it shouldn’t be, is that today is the last day of work for me. I had to leave my career. It was work-from-home, but my position required coming into the office for some much-needed meetings, and I just can’t. I don’t know when I could as my little one learns he is safe and that we won’t leave him. My family demands so much right now. I was pulling all-nighters to get my work done. Leaving my job to care for my family has made me feel like the biggest quitter ever. Six years I put into my company. Six years. I won’t even have more free time if I do this, just a couple more hours sleep a night… when Roland lets me. Oh and I’m good at what I do. I get a sense of self from what I do. A sense of pride. And we rely on my income. I don’t know what we’re going to do, although I know we have a few months to figure it out. Today is hard. Not just because I have a ton of work to do for my company before I leave everything in other’s hands, but because this was my life. The life I liked.

“If this life I lose I will follow you.”

This life is a blip. A blip. One tiny speck on our timeline of eternity. In that perspective it’s easy to lose this life to gain so much more. Is my son worth it? Damn right he is. Damn right.

(Yep cussing on the blog. First clue that I’m overly emotional.)

And I haven’t packed for Philly yet. In fact (shocker) I haven’t unpacked from Ukraine yet. Heh.

So instead of writing about all the joys of the first month, I’m going to leave you with some of the beauty in the pain.

I’ve talked a lot about the first three days of non-stop, mindless screaming from our new little son. (It helps that I’ve spoken with another family who adopted out of his orphanage and some of my  suspicions  were supported.) That was hard. But by day four, I don’t know, I was filled with love for this screamer. It could have been the wonderful prescription medication I was on, but something was different that day. We had just settled into the uncomfortable knowledge that this could be our life now. It could be our life for months or years. And we needed to function despite that. It’s scary when after three days you have no light at the end of the tunnel. Three days is long when your child is screaming at top volume, but it’s longer when you don’t know if it’s just three days or a lifetime.

Want to see a glimpse of day four? Turn your volume down and click here. By day four I loved this little boy. By day four his screams were not high-pitched anymore, and he seemed to be asking for comfort instead of reacting to an unseen terror. I held him on the couch after not showering or brushing my hair or teeth for three days. I held him and whispered love to him. I was able to smile–a small miracle. My husband took a video. We wanted to capture daily life.

Then, and I cry as I remember this, then this happened: This. For the first time ever he came back to us. Back out of the world he was in. I can’t describe how for three days his eyes were just blank, unfocused. Then he started to make eye contact. Then he didn’t thrash when I touched his face. He came back. He came back.

And he made kissy faces. “More kisses mom. Yep right there on my forehead. Perfect.”

When I wrote the blog post about (not) living happily ever after, I was being very honest. I thought maybe people would not want to adopt after reading how we were adjusting. Then THREE people emailed me after that and said that they read the post and were definitely going to adopt. One started the process. Another picked an agency. A third is definitely, seriously considering it a few years down the road. Wow. Wow. Really guys? After I post about screaming? Welcome my fellow crazies! Haha!

They get it; it’s about people.

Now do me a favor and click here. Read  this story and then you can tell me that we’re all crazy. (We won’t argue.) Go ahead. I read that link and cried my eyes out. It speaks truth to me. It lets me know I’m not a freak show for wanting to go back and get another one, or support others getting theirs even though I know it’s so hard. Just read it. (Despite the amazing support we’ve received, we still have the same crowd mentioned in the story.) Do me a favor and just read it. I didn’t write it, but we sure lived it.

See you in a week, friends. Hold onto this promise from me, incredible joyful stories are coming. Just give us one more week or so of hard. Pray for us.

Laurel has a family!!!!!!!!!!!!!!!!!!!!

Tuesday, April 24th, 2012

Oh my goodness! Did you hear? Do you know?! I got the news and just started crying! A family has stepped forward and decided to adopt precious, deserving Laurel! If you remember I blogged about Laurel here  (and here  and here) and my heart was breaking for her. Laurel is 15 and turns the dreaded 16 in August. The crime of turning 16 would mean she would be permanently hidden from society in a mental institution with no hope of a family or love (because she would be no longer  eligible  for adoption) or she would be thrown to the street to maybe live a very shortened and miserable life. But now she will go to a mom and dad who love her! Oh I’m so happy I could burst!

Every night we pray for a few specific orphans. Laurel is at the top of the list. The day Laurel got a committed family I didn’t tell Laelia right away. During prayer time that night when Laelia was praying for the orphans that’s when I broke the news. (There’s nothing orthodox about our prayers so  interruptions  like this are common.) Laelia grinned so big!  “She gets a mommy and daddy just like my brother? Even though she’s big? Yay!!!” Laelia was so happy and we thanked God so much for setting this in motion for this precious girl.

Two other orphans on our short list are Victoria and Igor.

Victoria

Igor

They are in the same country as Laurel and are living in an institution, although they are several years younger than Laurel. Right now (April 24th-April 30th, 2012) there is a giveaway going on for these two that I’m a part of. I would really like it to be a huge success so that families will know that we support these children and will be encouraged to adopt them. And then Victoria and Igor will get adopted and the whole community will rally behind them. Then they’ll grow and bloom in their new homes and become doctors or professors and one day when accepting the Nobel Peace Prize they’ll mention that it wouldn’t have been possible without a silly fundraiser/giveaway. ;) Would you help me? The prizes are pretty awesome. If nothing else look at the cool prizes and share this on your blogs or Facebook. The first prize (for Tea Collection clothes) shows a model who has arthrogryposis! I’m pretty excited about this. But the last prize really has my heart.  Go see!

Check out the giveaway here! Thank you so much!

Giveaway!

Thursday, March 15th, 2012

I just wanted to put this giveaway out there so that everyone could get a change to play. I blogged about it on Laelia’s brother’s blog here. Laelia’s arthrogryposis has put me in community with many other families affected by AMC. These dear people are as close as family. I care about them and want to support them. I haven’t known Laura long, but she became part of our group after adopting sweet little Landri who has arthrogryposis. As I’ve said before Landri’s parents can and do provide for their daughter. They can afford her special needs. They could even afford her adoption, but the attorneys fees and adoption agency fees were all triple what they were told they would be.  They are a few thousand short and need it before the end of this month.

My family (and extended family) put our heads together and decided to do a giveaway for them. We are contributing all the prizes. Right now we’re fully funded for our adoption, but I remember all too clearly the panic and worry that accompanies not having all the financial barriers down.

Right now there is barely anyone participating in the giveaway so your chances at winning are pretty high. Please consider helping us by going here and donating $5. Go here to donate. The need is urgent.

The first prize is a $100 gift card to Apple.

The second prize is a handmade stained glass heart (~6×6).

The third prize is the  sign language package: five children’s books from DawnSignPress, who is an American Sign Language publishing company.

The giveaway ends March 17th on Saint Patrick’s Day at noon. Winners will then be drawn and announced.

For every $5 you give to their adoption fund, your name will be entered into a drawing. If you leave them a little note after you donate saying you shared their link (This one –> http://www.gofundme.com/ff0jk) on Facebook or Twitter or your blog then you get another chance at a drawing! (But you must first donate at least $5!)

Thanks so much if you can help. Even just $5 and a note to this family would help a ton. I know it did with us. Thank you.

$6,500!!!

Tuesday, February 28th, 2012

Donate to Laurel’s rescue fund!

We did it!!! We made it to $6,500! And a whole day early! Thanks to everyone who gave! (I so love pretty round numbers.)

But that’s not all folks! Because we achieved our goal a day early Anonymous Donor #2 has stepped forward!

So for the last day of February, and therefore the last day of Laurel’s month of awareness with Bring Hope to 12 in 2012, we have another anonymous donor to get her all the way to $7,000!

So donations are STILL matched dollar for dollar! Even though we reached our goal! We have a new goal! $7,000!!!

$1 becomes $2

$10 becomes $20

$50 becomes $100

Until midnight on February 29th OR until we reach $7,000!

To donate go here!

Side note: There’s another grant for people who commit to Laurel. It adds $2,000 above and beyond  the funds we raise for her.  It will be given to the first family who commits to her.  So if we do reach $7,000 we’ll have a cold hard $9,000 to offer that family.

If another donor wants to step forward and offer another $500 in matching funds we could make it a cold hard $10,000! Just email me at recordsky (at) gmail (dot) com!

Thank you!