Please

http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.4196675/

Please take a moment to fill out this very quick and short form to let Congress know you support people with Spina Bifida. (Even those that think that they are Geisha's... Panda's or Raccoons!)

Thanks!
Love...
Bean

Sail-A-Thon

My family is participating in a Sail-A-Thon this weekend. To find out more about this wonderful sailing program for people with disabilities and their families please visit:

www.heartofsailing.org

We are so excited! I am sure that there will be a ton of great pictures to share next week!

Thanks for all your kind comments about Isaac. We are still floating on cloud NINE!

Blessings,
Sarah

Peace. Joy. Love.

Yesterday I got an email from R. with a link to LOTS of new pictures of the children at COTP. I couldn't bring myself to look at it until this afternoon. (I had to talk myself into it. If there weren't pictures of Isaac, I would feel sad. And if there were, I would feel sad.)

So instead yesterday, I decided to do something productive that I had control over. (The ONLY thing apparently I know now I have any sort of control over.) I finished packing up the two boxes that have been sitting waiting to go to COTP for far too long now. I also hopped on ebay and found some more pediasure to send to Isaac so that I can keep slightly ahead of him running out.

Then today I looked at the pictures. They are done in alphabetical order, so naturally "C" comes before "I"... so I looked through adorable Colin's birthday pictures and caught a glimpse of my son in the background. There was something really profound about this picture. Because it was a moment I imagined over again and again. Colin coming home, in his fancy duds, in his American clothes, in all his glory and all his joy. And the way that I would rejoice with his family, and shed tears of happiness with his Momma and all the while my heart would be breaking for the child that didn't come home. For Isaac.

So this picture just spoke volumes to me and reminded me of the thought process that I had gone over in my head. The one that I didn't want to think about. The NO. The he will never come home. The moment that they were looking for a new family for him. The pain I have felt other adoptive Moms go through, I would be going through. I would have to learn to grieve for my son that was almost mine.

There were many moments over the past 15 months that I could have ran and hid for a very long time wondering why I was continuing on with this. Wondering why my husband wasn't saying something to me like "enough Sarah"- "let it go". I wanted someone to tell me that many times. It was either going to have to be D/S at COTP or my husband. And none of them EVER let me falter. There was many "this is the last step, the last thing we can try", "if this doesn't work, this is it". And my husband offered lots of "this is such BS- I am just going to go down there and handle it."

Friends and family alike wondered if I wasn't being dragged on for the sake of a holding pattern... meaning that *I* personally was going to have to be the one to say- OK enough- we are done. We are done waiting- all hope is lost- let's just let Isaac go. It hurt people to say these things to me, and even worse pain to hear them. Only the closest of people to me were offered up the logic that HIS answer to prayer isn't always the answer you are seeking.

So I continued to flip through the pictures and got to Isaac's photos. Beautiful. What a handsome and spirited little boy. I have pushed away those thoughts of all your little tidbits, let the walls roll up. Then I see you son, and it bring the walls down. I see you dancing in all your glory and all your joy is felt deep in my heart.

I try my best to flip through the pictures of Isaac when the kids aren't standing behind me watching because I know that this wait pains them too. I also know that the questions will come and I just can't find the energy to explain it all once again when my heart is so heavy. I hide the tears and then hear my mailbox... a new email pops up behind the page of pictures I am soaking up...

An email from D. at COTP, subject line: "Are you sitting down?"

A flutter-my hands shake. It feels like a first kiss. Seeing your child for the very first time. The feeling as you are about to exit the plane in an exciting and foreign place. Watching your child perform in the school play in front of a packed auditorium and hearing them recite their lines loudly for everyone to hear. Hearing the phone ring in the middle of the night...

I stop. Breathe. Open the email.

I read this:

Well today is YOUR day......In a matter of a week or so Isaac will officially be your son...

Praise the Lord! Praise praise praise praise praise.
I had to of course finish reading the email which went on to explain that Isaac was signed out of IBESR a couple days ago. They waited to tell me until a wonderful staff person actually HAD the paperwork in hand and could verify that this time, yes indeed, Isaac is TRULY out of IBESR. (I had asked them to do this for my sake, as hard as it must have been to comply!)

Its true. It really is. I am still pinching myself. But this weight of the world on my shoulders, this worry of what might happen, or might not happen for my beautiful little boy was so much to bear for so long now. (The Buddy, my best friend, always says: "There has been a struggle with each of your children. A struggle in the story of how they became YOUR child. Why would you think that this time would be any different?)

So there is an incredible amount of peace in our hearts tonight. Joy in my life. And Love for our newest family member, Isaac. And a renewed sense of hope and faith, for HIS perfect timing all the time, as it should be.

Thank you all so much for your support and prayers. What a miracle.
We are still months away from bringing Isaac home. We are going to remain steadfast and hopeful that things progress at a normal Haiti pace, and that there aren't anymore 15 month hold ups. :) We are just enjoying basking in this moment- these many moments of days to come just KNOWING that YES... someday... Isaac is COMING home!

Lemonade anyone?

A trio of Haitian lemonade stands. Sophie, Zoe and Lulu raised $230 (in three hours) split between MAT and RHFH.

I hear that Grace and Dominick in Ohio had good sucess for COTP too!

Thanks Haggen for letting us set up "shop" at your place. You were wonderful!

Chaos- Days 9-12 Grand Finale

(PHOTO CREDIT: DG)

So this week has been busy with doctor's, dentists, therapists and life. Please be sure to scroll down to Beans update and start reading from there!

Hesner has had two places contact him for interviews already. One the resort that we visited on Father's Day and the other a local Casino that has some "fine" dining.

Yesterday he made the decision that he would pack his family up and move. The home that they are renting in Miami is foreclosing on the owners and they have 20 days to leave before the bank takes possession. They are waiting on some lose ends before they leave so might wait the 20 days before they make the long drive cross country. Really cross country. From one point to the other.

If there is some kind of a miracle and he finds a good paying job in the next two weeks, they will stay in Miami.

I will definitely keep you updated on how things are going for him and his family... the plan right now is that they will stay with us at first. Hesner will get his interviews and prayerfully have a job rather quickly. (If you need someone to teach guitar lessons, spanish, cater, bake, fish nutrition? I have you man!) I have faith that he will find a job quickly and we will get him on some waiting lists for a decent and afforable place to live.

I am excited about being able to "pay it forward" and to see my friend find the American Dream the way he should. If things don't work out for him here, this is the last stop: They will return to Venezuela and likely never be permitted to return for work or asylum or even visitation in the US. They are scared and without their family and friends. I hope that they find everything that they are looking for here. Hesner applied for a 30 hour a week job at the local tech college in the culinary arts program. That is the job he REALLY wants because it would allow him to teach classes or take classes on the side... and their truly largest dream is to open their own bakery.

So we are getting prepared and organized. They aren't moving with much so we are hoping to gather things for them before they arrive. Baby Lena is doing great. She had her well check this past week as well, and she is officially OVER 10lbs!! She will be all set for surgery in early July. (Her first surgery.) She is a sweet and calm baby and of course we are all so in love... Bean too. :)

And tomorrow... we make our lemonade stand! My sister and I came up with a very creative idea so we hope that we raise great money for MAT and RHFH!! (Grace and Dom are doing thier's in Ohio for COTP.)

Pictures will come after the big fundraiser... kid style.

Have a great weekend!

Blessings,
Sarah

P.S. Thanks for reading these long posts. It has been quite the past 12 days!!!

Chaos- Day 8

Ok so if I could stray from the theme of the posts I would call today:
Father's Day
or
Mi Casa es su Casa
(my home is your home)

On Father's Day was the night that not only Hesner was leaving to go back to Miami, but also my husband was leaving to go out of town for the week for work. They were to leave after dinner to drive to the airport and then my husband would head out of town from there.
My husband spent most of the morning repairing the dryer, and Hesner, also celebrating his Father's Day (without his wife and three children) spent the morning cooking a special lunch for us. There was a great deal of left overs from the week and in true Hesner style, nothing was to go to waste. For lunch with David's help, they made the most splendid focacia bread, egg rolls and a South American fruit punch.


From there we headed up to the beach north of us. We wanted to show Hesner the resort that he had applied to work at as a baker. It is beautiful and right on the water. (He had submitted his resume online so really had no clue about where it was or anything.)

The kids and dad- and Hesner and cousin Noah had a great time skipping rocks and playing with all the drift wood. We were shocked to see people swimming in the freezing water, especially considering its been like fall here more than summer!

The afternoon was great but we came home to the dryer not working again- which meant hanging clothes to dry outside. (Something I enjoy as much as cooking.) We looked online for something to buy... we just can't make it without a clothes dryer, at least not right now. :)


Hesner and Robert said their goodbyes to me and the kids and they headed out for the airport (2 hours away). Now... this brings me to a side notw. Often people will remark to me that they spent hours trying to pray with thier husbands about things like adoption, or hosting a medical child, or adopting a special needs child, or really most anything that the wife/woman feels a passion to do, but her husband isn't on board. This hasn't really been an issue in my marriage and I have always felt so blessed that when I felt led to do something extraordinary, my husband was right on board. At times with concern, and we would discuss, but he tends to always agree and see things my way.
The flip side of this that many of you may not know is that there are LOTS of times that my husband will have the same kind of extraordinary feelings and I have to try to see things from his perspective. (And I am not as easy to see the things I guess?)

Even when it comes to adoption/having more children, there are often times it has been or is my husband's original idea, and not mine. Yes, believe it or not.

But this was a little unexpected.

So the phone rings and it's Robert!

"I just dropped Hesner off at the airport. Let me tell you Sarah, he is just such a remarkable man. I can't even tell you how well we have gotten along this last week. He has such a great sense of humor."

I reply... "Yeah- he is pretty special."

Then the bomb from my dh: "So I told him that it might be hard for him to find a job from Miami, and I know he doesn't want to be away from his family. So I told him that WE would be more than happy to have him and his family come and stay with us until they are settled with work and a place to live."

I choke. I gasp for air. I put the phone down. I try not to lay into him. I try to be nice. Maybe he thinks this was the just the polite thing to say. Maybe he doesn't realize that they will actually come!

"Well, where will we put them honey?"
I ask.

(Meanwhile I recall that my loving husband is out of town with work through the fall.... home weekends... some long weekends... but truly NOT here most of the time over the next several months.)

This is my burden? That is what I think.

I know, not nice of me, not very Christian of me. And certainly not in line with my crazy OK OK OK- we can do this attitude.

I was thinking... Danny and Tyler are halfway out the door, that leaves me one big room downstairs that is going to be the best school/art room EVER. We have already started collecting a chalk board and large desk for down there that sit waiting in my garage....

"We will give Hesner and his family the large red room downstairs and move the kids to the other two rooms." Robert says
(We have the three youngest upstairs with us, three beds up, three large rooms/bedrooms down.) But there would be in one room: Lauren, Grace, Sophie- and the other Dom, Cole, David... and the last: Hesner's family- wife, boy 5, girl 3, boy 10 months.

I want my friend and his family (his wife and I have talked on the phone, me in limited Spanish and her in limited English)... I know we will be friends. And my whole family (including extended family) loves Hesner. I truly want the best for his family... yet I can't give of my home?

This is bad of me I know. I think of Ange and Paul... Abby and Rony... how they lived with one another under one roof and the children! And how they said OK to me and Ella and Bug staying with them for an unknown amount of time... and I couldn't leave Bean, Lauren, Grace and Lulu behind... we were all welcome and completely felt that way from the getgo. How could I not pay the blessing forward? It would just mean giving up a little space but gaining a fabulous cook (there goes the diet), really getting to know his wife and children....

And would Hesner REALLY move his family out here? Why was I getting so worried about this. So I let it go... for the moment and said goodnight (via phone) to my hubby.

Chaos- Day 7- The Big Graduation

The big day is here... and BOTH of the boys are graduating from High School. I wouldn't have worried so much until the past 6 months when both of them got an incredible case of senioritis and "we are just ready to be on our own".

The food was amazing that Hesner made and my husband would like me to be sure to say, he grilled the chicken that Hesner marinated over night. And it was great (although I didn't eat any- vegetarian- but- everyone who ate it liked it. Grilled to perfection. You know I love you honey.)

Back to Hesner and the food.

Wow. Who doesn't love cream puffs? And salad in small Parmesan cups? And the cake was 2nd happiest moment of the day next to the boys graduating. The boys chose the cake that Hesner would make.

Layers of white cake with espresso painted on. Layers of milk chocolate (straight chocolate), layers of Kahlua and coffee cream, covered in a shiny layer of chocolate ganache. It took him three days to get it all made in special segments and was hands down, by a mile, the best cake all of us have ever eaten.

The boys had all their friends come over for lunch and they were all so polite and wonderful. After that they went to another friends for dinner... then spent the next day preparing to go out of town for the week. They had rented a cabin in Canada for the week where the drinking age happens to be a lot lower than here. (Drink? My boys? NEVER.) I am happy to report that they talked most about the time at the Vancouver aquarium, the big mall in Vancouver, boating in Harrison lake, sneaking into the resort to go in the hot spring pools, all the fun they had, and then... how much alcohol they had to dump this morning before they left because no one really drank much. (Oh why did we buy that $30 of Jagermeister.)

We are so proud of you boys. So proud that you had some rough points, learned some lessons, got up, dusted yourselves off, held your heads high, forged ahead, and excelled. You two are amazing teens and wonderful young men who are going to do big things next year in college.

We love you.

Chaos Day 6- The Plague

(Please be sure to read the Beanie update and the other days of chaos or this post will only make 1/2 sense to you.)

So it's the day before the graduation. Hesner is cooking up a storm late at night, early in the morning, in preparation for the gathering. Robert comes home tonight (after two days out of town for work) and Hesner wanted to make something special. Robert had told him how much he likes Pizza, so Hesner made some pizza dough which children lined up to knead, and then after it "rose" or

whatever... he made the pizza's on the grill. (YEP- the gas grill... and they were ridiculously good!) So meanwhile Hesner and a couple kids are out on the back deck watching the Pizza's cook... Tyler is out front... I send Lulu to the garage to find me a can of olives... and hear screams... Tyler and Lulu... "THERE ARE BEE's EVERYWHERE!" Then the kids come in from the back... "BEES"....

They are swarming the house literally. Our house, and the neighbors behind us, their front yard and boat. It was the heat of the day and the queen must have moved. (Hesner provided a quick lesson in bee keeping. His host parents in Australia had bees... he knows everything about anything, most of the time. LOL)

He said not to worry, but all I kept thinking was, oh crap... we are having the graduation for the boys tomorrow and what is that going to mean if we have swarm of bees around the house! I am allergic, so I couldn't go outside. Leishan was on her way over for Pizza and I could hear her scream from outside (windows shut at this point). She is terrified of bees. Lulu sat looking out the window sobbing she was so scared.

What do you do?

There is a honey bee shortage so you can run out there with a can of raid or a water hose!

I just wanted my husband home with an answer. But I knew it was going to be a couple hours longer. Shoot.

They swarmed for over an hour... or maybe it was longer, we finally just sat around eating pizza and tried to ignore the cars stopping out front staring. Most of these pictures started when they landed, or the queen landed, in the gutter on the front of the house.

And SWARM all the other bees came and got close to her. All inside the gutter. We had no clue what would happen. Would they just STAY there? Make a hive? Make some honey? What the heck? GO AWAY BEES!

Lauren and I sat perplexed. Should we call the fire department? No... we know a bee keeper. Well not really a bee keeper, but a teacher, who also happens to have bee's. Let's call MR. D. (Strange side note is that this knowledge was really random and came up over dinner at the D's house one night. The bee's are kept at another families house so it wasn't like we would have seen the bee homes or anything.)

We called Mr. D's cell phone. Phew. He said Do not do anything, I will be there in a half an hour!

Yes. Bee Freedom.

Mr. D. Arrived and not only gave us a little lesson on bee's, answered all our questions, smoked the bee's, put the bee house on the roof, and said, NOW we wait. The bees started making their way into the bee house... and Mr. D. explained that there were about 40,000 bee's on our roof. How did he know that? Because you "buy" bees by the pound, and there was $85 worth of bee's on my roof. Ridiculous.

So we waited.

The next day it got hot during the graduation and the bee's moved. The "scout" bee's must have came back with a better plan on where to live. They moved to the tree in the front of the house. They formed a large group hanging from the tree. (This is more typical than a gutter Mr. D. explained.) They stayed there until Mr. D. came back with his suit and cut the branch down (very brave... very very brave) and dropped it into the bee house. The bee house stayed for the next couple days until all the "slower" bees entered then Mr. D. picked it up. (Yes, he drove it to the farm in his car.) Crazy... I agree!

Thanks so much Mr. D. We appreciate you SO much, your bee and teaching skills are fabulous!

Day 4-5 (chaos)

Hesner has a very elaborate work history. He went to college for Marine Biology... but after graduation ended up opening his own bakery in Venezuela. His specialty was whole wheat bread. He also studied classic guitar for most of his life and speaks three languages fluently (Spanish, English and Italian.) Since he arrived in the US, he has been working for various French and Italian bakeries so he can make marvelous food.

He had offered to make the graduation cake for the boys, but I didn't expect him to come here and cook the whole week. (Which he did.) In between his cooking we ran to the grocery storeSSSSS looking for items for his masterpieces. Hesner and I also spent some time looking around for work for him, filling out applications, emailing his resume, checking out places for rent, and seeing the "area" to see if this might be the place for him to move his family.

Hesner fell in love with the Pacific Northwest. (Despite the rain, it's hard NOT to.)

It was not so fun listening to my family make remarks like: "We have never eaten so well in all our lives". And "I didn't even know we had that pan or food processor".

And then Hesner made remarks like: "Sarah- where is your Kitchen Aid mixer". (We don't own one.) And comments like "it's very difficult to mix pastry cream without a mixer".

Etc.

And then there's the "we aren't ever eating peanut butter and jelly again.

First dinner he made (from scratch of course)

Fettucine Alfredo (trying to stick to vegetarian meals for my sake)

Salad (homemade dressing and croutons)

Fruit Tarts for dessert

I made the garlic bread which no one ate and I finally pitched from the leftover shelf in the fridge just the other day.

One other interesting fact about "our" (dh and Hesner hit it off) friend Hesner is that he is also lived a strong life with the Lord. He knows the bible BETTER than anyone I know. (In English and Spanish.) Can tell you the Latin and Greek root word of most passages of the bible and is always up for a heated debate about one thing or another where our religions slightly collide. I enjoy learning from him... and so did my family!

Chaos Day 2 and 3

So Day 2 of the chaos my dear old friend Hesner was coming to visit. Hesner and I met in Australia. (We were both exchange students there for a year in high school.) Hesner and I instantly became friends because we were both patient enough to communicate with one another even though I only knew a little Spanish and he only knew a little English. That year in Australia there were 138 exchange students from 40 different countries. Hesner was from Venezuala, and I desperately wanted to be South American. (I actually applied to go to South America, Australia was a 2nd choice, but because of my loud mouth and stubborness they said I wouldn't fit in, and my only options were New Zealand or Australia- of the places I chose- there would be no Brazil, no Argentina, no Venezuala... of course I didn't mind going to Australia- I was SO excited.)

It was definitely one of the best and most memorable years of my life. Hesner and I lived about 2 hours apart from one another in Aus. but we quickly learned that our student ID's got us a train ticket both ways for 50 AU cents. So we made it a habit to visit one another at our host families.

The program that we were with (AFS) had an excellent program in Australia. They would hold camps for ALL the exchange students to attend several times a year and also offered a "Safari" through the outback for students to travel on for 20 days. It was nothing short of incredible. During one of the camps we had a talent show where Hesner and his South American crew taught me to dance the merengue. Now it was official, I was almost Venezuelan. :)

The pictures above are of Hesner and I dancing the merengue, the SA folks, and me, Hesner and our Canadian friend Jackie at a pineapple plantation near the Gold Coast Australia. I used to not show people these pictures because I thought I looked SO fat. (HAHA.... look at me now!)

So Hesner and I always remained in contact throughout the years... wrote letters and one day finally were both able to email one another. He even came to visit while I was in college and stayed with my family in Ohio for nearly a month. The first thing he told me when I met him at the train station was that I was "blah- blah- blah- gordo- blah"... I only caught the fat part. I had definitely moved from my very tall (5-9) slender body (135 lbs or so) to about 155 during those college years... and in his very South American way he pointed it out to me. (Mind you- this isn't rude in Venezuela to point out people's appearances, being fat didn't make me any less than I was- even though it felt like a slap in the face.)

So when Hesner and his wife and children arrived in the US (Miami) three years ago on Political Asylum Visa's... we have talked through the years and I have hoped that would come to visit... finally he was coming, I had to let him know that my appearance had changed again. I let him know that I got old and fatter- much fatter. He let me know that he was now old, had a belly and was bald. I felt better and far less self conscience about our meeting. (Plus I figured he knew by now that in the US it was very rude to say someone is so fat to their face.)

So we had spent the day on Day 2 at the zoo (Pictures coming soon!). It was a long day and we had to head back to the airport late that night for Hesner's flight. DH asked several times on the way there how exactly I knew "this guy". Even though he had seen the pictures from Australia and I did explain who was coming to stay at our house. (At one point he asked, Where is he staying? I said... um... with US!) Robert went along with it although I could sense he wasn't amused that this "guy" was coming to stay that his wife knew from her past. I knew that once they met, they would hit if off, and all worries would be cast aside. (Not that Hesner and I were anything but friends, or that my husband doesn't trust me... it is a bit unusual of a situation.)

So Cole, Sophie and I ran into the airport and we arrived just as Hesner should have been going to baggage claim. He said to wait right there and he would find me- and I would see him- he would have his guitar. We didn't see him and he should have been there... hmm.... then behind me I heard "SARAH!" (In a Latin accent!)

My friend had arrived and that's when the week got really crazy... there's nothing like adding a bit more culture and activity in our lives!

12 days of chaos: Day 1

(Be sure to read the Bean update below- I am updating lots and blogger goes backwards!)

So if you have been wondering where I have been friends who have been trying to call (sorry Buddy and others)... my life has been crazier than its normal level of craziness.

Last week we had to be in Seattle three days in a row. So dh took off work and we took the whole crew out of town for some fun, and obligations. The day that we left the kids made these penguins in the morning. They turned out cute, but one did end up looking rather "Taliban" like with his hat... or her hat... with red boobs. Interesting imagination that children have.

Then we packed up the car and headed out for Seattle with strict instructions for Danny and Tyler on their very last week of high school to please behave, keep the house clean, and make sure to let the dog out. Nina (my sister) and K. my neighbor served as the watch dogs to be sure that there was no parties, friends over, or Senior pranks happening while I was gone. (My innocent boys would never do ANYTHING like that! Yeah- right.)

So the first day of our trip was really hard for Bob and I... and Dom and Grace. In February they changed the airline rules so that unaccompanied minors (with the airline escort) can fly on the red eye. There is a red eye flight from Seattle to Ohio and Dom and Grace were off to visit Nana for a month. Most of my children have traveled alone before (as I did as a child), and while they have been gone I have been busy, typically traveling myself. Well this time, I knew the whole month was going to be spent at home with just regular busy life going on, so it was a bit harder to let two go this time.

I love the older picture of Grace and Dominick dancing, and of course the newest picture of my two beloved children, backpacks on, ready to head out for the airport.

Apparently someone hadn't informed the airline employees that the rules for children traveling on the red eye had changed, because there was a small stink at check in and we had to step over to the "special desk". They told us the kids couldn't fly at night. (The other option was sending them on MORE than one plane during the day. Even though it was at night, we love a direct flight when children are concerned.) I explained that the rules had changed in February and that we paid the escort fees both ways in advance for them to have someone helping them "fly". They were sitting in the very first seats behind first class in the bulkhead and I just asked that they not let anyone creepy sit next to them, I got this response: "well, we can't promise that. And THAT is why we didn't let children fly at night."

Ok beeeatch. (No I didn't say it, but I thought it!)

Now my kids on the verge of tears.

Well since I am paying someone to "watch" them for the 4 1/2 hour flight, they can make sure no one creepy is sitting next to them. Period. Isn't that the right thing to do? So I instructed Dom and Grace to make sure to scream if anyone tries to touch them or tell them anything weird. Scream loud like we practiced and be sure to press the CALL LIGHT if they need ANYTHING, or just have a question, or need to use the rest room.

Sheesh. She must not have children.

Dh shot me a dirty look like: "was that completely necessary?"

I smiled back and we were off through security with our "parent passes" to go to the gate. Seattle was having 50 mph. winds so the flight was delayed. We prayed and felt that the kids would be ok and they were ready to go....

And off they went to Ohio. We have talked most everyday since and I could tell they were a bit homesick at first but now are having a wonderful time with the cousins (Kate, Libby, Keller, Maggie, Bridget, Cassady, Sam, and Mady.)

I can't wait till they come home though. It's been quiet... sort of... and I miss them.

(Love you both- Mom)

Bean Update

(Bean and Lena from a couple weeks ago... ages 27 months and 5 months)

Well the good news is that the 2nd catheter for Angeline's shunt is working. The pocket of fluid and the hydrocephalus is gone, as well as her sleep apnea... gone. (She still snores but we learned from her most wonderful Anesthesiologist from South Africa yesterday that its because of her larger tonsils and her tongue falling back when she sleeps. Since she was sedated for the MRI, they were able to get a good view of what happens when Bean sleeps.)

The bad news is that the Syrinx is still there. It hasn't gotten bigger, or smaller, it's stayed exactly the same. (I mean the MRI scans of her spine were identical, I saw with my own two eyes!)

Typically... this would cause additional paralysis... she would be having numbness in her legs, arms and shoulders. The Syrinx is large, which means that it could cause her more bowel and bladder issues (she still doesn't need cathing, which most children with her "level" of SB do). So basically its a freakish yet wonderful miracle. It caused quite the smiles from the Neuro surg. team asking things like: "Does she talk much yet"... and she would answer on her own "YES and I slept all night again!") They were thrilled to hear she is sleeping through the night and not only having issues or extra delays, but she is PROGRESSING. There is no scientific explanation, its all God seeing that my strong willed toddler keep on chugging along with life. (The power of prayers, AMEN!)

So for now we have to watch her VERY closely. If she shows any additional signs of further paralysis, numbness, back pain, delays, we are to rush her right in for surgery (either brain decompression OR a shunt for her spine, or spinal cord de-tethering, or a combo of surgeries... all of which are very invasive.) I will ask her OT who comes Monday to work with me to do a variety of tests to establish her physical well being and "feeling" as of right now. She will visit the Neuro Developmental nurse every three months for the same type of eval, and have MRI's every six months. If anything changes, she will need surgery, but for now we are just CODE ORANGE on high alert, making sure that she stays the same.

My gut instinct is that she has ALWAYS had this fluid on her spine. She hasn't had an MRI of her spine since her "bump" was closed. So there isn't anything to compare it to. I just pray she continues to make progress and we don't have to resort to surgery anytime soon.

The consensus of all the doctors I could talk to yesterday is that we need to move forward with the eye surgery in August. So for right now, that is the plan.

Thank you all for your prayers and kind words. They mean so much and are working!! While it was a bit of a bummer of a day, nothing is better than seeing God's greatest blessing in my life continuing to make miracles and astound some of the greatest medical staff I have ever met.

Whooohooo! Go Beanie!!!

Prayers for Bean too please

Today Angeline has an MRI (asleep) to see if her Syrinx has resolved or not. Please keep her in your prayers- it is hard for her not to eat or drink on the drive to the hospital and of course it would be great if everyone was on time today and they didn't make her wait longer than she should have to. The biggest pray of all is that the 2nd shunt is working to clear the area of fluid in her brain and that the fluid now has enough room to move, thus resolving the Syrinx. Thanks in advance for your prayers! We are truly hoping for good news and NOT having to plan for a brain decompression surgery!!! Angeline is "doing" wonderfully. We hope that this is our sign she is OK.

Thanks for your prayers!

Love,
Beans Mama

Isaac

Please continue to pray for Isaac, his adoption, and our file at IBESR. IBESR contacted our attorney and asked for a letter from the doctor regarding Isaac's small size. (For those of you who don't know, Isaac is not even on the growth charts for height or weight yet.) I know that most Haitian children are smaller than children from the US at the same age... but this is a bit different. Isaac has been on Pediasure daily for many months now, along with the more than ample food he receives three times per day PLUS snacks at COTP, he shouldn't remain so small. (He has been receiving great nutrition at COTP for two years now, so really, he shouldn't remain so skinny and small.) So a letter was being written by the doctor to send to IBESR per their request. We are truly hoping that when they receive the letter and realize that we aren't exaggerating or telling tall tales regarding his size/weight that they will release his file. We need prayers for this to happen everyone. Lots and lots of prayers. We keep thinking that we are truly at the last step with them and they will either say YES or NO and then there is another hoop to jump through. (We are willing to jump through them all!)

Enjoy these adorable pictures of Isaac. I know that we are! He is just so stinking cute and such a handsome little guy. I know that God has big plans for your life Isaac and we are praying those are revealed to us soon!

Thanks for the prayers!

P.S. The first picture of Isaac without his clothes is just to show how small he really is. The clothes do make his appearance deceiving!

The world I know (LONG but WORTH IT!)

Collective Soul: The World I Know


Has our conscience shown?
Has the sweet breeze blown?
Has all the kindness gone?
Hope still lingers on.


I drink myself of newfound pity
Sitting alone in new york city
And I don't know why.
Are we listening to hymns of offering?


Have we eyes to see that love is gathering?
All the words that Ive been reading

Have now started the act of bleeding into one.



So I walk up on high
And I step to the edge
To see my world below.
And I laugh at myself


As the tears roll down.
cause its the world I know.Its the world I know.


I am hurting for a friend right now. I am keeping this post really "general" as not to disclose the person who is going through this right now. My friend is a very faithful Christian and attends a church that she has gone to for a long time and her family has been very active in this church. They recently brought home a little boy with some special needs from Haiti. My friend had told me that its hard for her to attend church with the little boy because he likes to be noisy and the church asks that people who have noisy children in the service stand out of the service in order to not disturb everyone. So after weeks of doing this because my friend wanted to be sure that the little boys special needs were ok enough to put him in the nursery.... last weekend was the first time that they sent their beloved baby boy into the nursery. My friend was able to enjoy church and the little boy had a great time playing with the other babies and being well taken care of. Nothing out of the ordinary right?


Yesterday my friends husband receives a call from the Associate Pastor of the church. He was asking all kinds of questions about baby boy, about his special needs, his life in Haiti etc. It seemed that he was dancing around in his questioning and avoiding something that he REALLY wanted to ask. My friends husband has a keen sense of picking up what people are truly thinking and he said "what are you getting at Mr. Associate Pastor, is there something that you want to ask me?"


The conversation went to HIV/AIDS... has baby boy been tested? The Associate Pastor actually had the gonads to call my friend's husband and inquire as to the HIV status of their new beloved baby boy. To make matters worse, he said the following: "The PASTOR and I had been talking and we noticed that your wife put baby boy in the nursery last weekend. We just wanted to make sure that he had been tested and was safe to be around the other babies and toddlers... and to make sure of what to tell people in case someone asks. It might worry one of the other parishioner's and they might have some questions. If the Pastor and I were privy to the health status of baby boy then we would be able to address the questions we might receive appropriately."


What? What an ignorant arse. (This is what I am thinking as I start crying hearing my friends voice quiver as she retells the story to me. )


I tell my friend that she should never go back there and make it known to the other people that she knows who go there, the ignorance and prejudice that she has just experienced. These are the men that are teaching the Word of the Lord to many others. This is NOT a good thing.


Prejudice, unsubstantiated prejudgment of an individual or group, favorable or unfavorable in character, tending to action in a consonant direction. The hostility that prejudice can engender and the discrimination to which it may lead on the part of a dominant population toward an ethnic group, gender, religious or linguistic minority have caused great human suffering throughout history. Some researchers attribute prejudice to deep-rooted fear of the stranger, while others cite religious or nationalist chauvinism, and fear of economic competition. Most, however, agree that prejudice is learned and can be reduced when members of different communities work together toward the realization of a common goal or when groups intermarry. Since prejudice and discrimination each contribute to the origin and growth of the other, prejudice can be reduced by removing discrimination, and a change in discriminatory institutions usually leads to a change in attitudes.


Did the Pastor and Associate Pastor show prejudice because of baby boy being Haitian? Or because he is black? Or because of his special needs? Let me just interject two side notes:


1. Pastor and Associate Pastor have both been on mission trips to Haiti.
2. Associate Pastor has a baby girl who attended the nursery with Baby Boy Haiti.


I am a sinner and I have no room to judge. But let me put it out there that when you discriminate against another person (directly or indirectly) because of culture, gender, sexual orientation, race, creed, illness, special need, economic status, nationality, age or appearance... you are being prejudice.
Whether you believe that "gay" is a choice... or being "homeless" is a choice... it is NOT our place to make assumptions and judgements about these people.


You are being prejudice when:
1. You have a Muslim man sitting next to you on the plane and you worry he might be a terrorist.
2. You don't want your baby around another baby who may or may not have HIV.
3. You assume because someone is in a wheelchair that they are "retarded".
4. You think that a gay man is funny and you pretend to talk like a "gay man" would likely be assumed to speak. (Just the fact of assuming that all gay men speak femininely is a prejudice.)
5. You think that all black people can play sports well.
6. You think that all homeless people begging for money in the US are drunks and they should "get a job".
7. You think that Mexicans are all lazy and using up our federal funding for low income programs- and don't let them in our country.
8. You assume that because someone is poor that they are uneducated.
9. You assume that fat people are lazy and have messy homes.
10. You think that all Asians are smart.
11. You attend a church that doesn't permit membership and allow persons of minority sexual orientation to attend and partake in church services and worship.
12. You belong to a country club, fraternity or sorority that doesn't permit minority membership.
13. You attend a school that doesn't have educational programs for students with disabilities.
14. You feel that women should be mother's and wives only and shouldn't be President.
15. You tip a white man more than you would a black man.
16. You think that white people can't raise black children.
17. You think that having money makes you a better parent than a poor parent.
18. You associate the words "gay" and "sex offender" and think that one has something to do with the other.
19. You believe that all children who were sexually abused will become sex offenders.
20. You agree that non-Christians aren't as worthy of adopting a child (having a family) as Christians.
21. You can't partake in things like yoga, acupuncture and meditation and still be a "good" Christian.


And a couple personal ones:
21. Because someone has a large family that their home is a mess all the time.
22. That because someone homeschools their children aren't getting a good education.
23. That if you have more than 5 children you must have a lot of money or not enough food/clothing for everyone. And certainly you shouldn't be allowed to have anymore!
24. That if you have a large family you either: are Catholic, Mormon, or Polygamists
25. That biological children are loved more than adopted children
26. (and the biggest one for Robert and I) Because you have a large family you don't have enough TIME, ENERGY, PATIENCE, LOVE to go around.


There you go. Let me lay it all out there for you. The things that irritate me and how I think we all need examine the way that we think and react to other people. I don't think that I would have been able to be as calm as my friend and her husband were. Last night she wrote a great letter to the Pastor and Associate Pastor giving them a bit of education about HIV/AIDS, the law (they wouldn't have to disclose to anyone and the school/church isn't allowed to ask)... they are taking this painful experience and turning it into something positive. I am not sure if they will ultimately be members of this church long term, but I think that they are giving the Pastor/Associate Pastor a chance to rectify what they have done, and of course my friend is ready to forgive.


I am definitely learning something from her and proud of her for not just "letting it go". Maybe next time there is a child from Haiti, or a minority child, or a child with special needs (or all three) in the nursery, they will only welcome that child with open arms as they would any other child.
I am sorry my friend. I know that you are hurting right now. God does ask us all that we love one another, differences be celebrated, and we learn from mistakes- and do better next time. You are doing the right thing. We are to love the people with HIV, the gay men, the toddler with Spina Bifida, the homeless drunk woman- and I guess that means the prejudice Pastor's too.

I will update the "situation" as it unfolds. Praying for my friends heart, for the Pastor's understanding and growth/knowledge of HIV/AIDS, and for baby boy, that he find love and acceptance by his church family despite his special needs (not HIV by the way), despite his race and culture- and maybe those three distinguishing things about Baby Boy will make his church a great place to be, a great diverse place to be.


In closing, another song for my friend:




Dare you to Move- Switchfoot



Welcome to the planet
Welcome to existence
Everyone's here
Everyone's here
Everybody's watching you now
Everybody waits for you now
What happens next?
What happens next?
I dare you to move
I dare you to move
I dare you to lift yourself up off the floor
I dare you to move I dare you to move
Like today never happened
Today never happened before
Welcome to the fallout
Welcome to resistance
The tension is here
The tension is here
Between who you are and who you could be
Between how it is and how it should be
I dare you to move
I dare you to move
I dare you to lift yourself up off the floor
I dare you to move
I dare you to move
Like today never happened
Today never happened
Maybe redemption has stories to tell
Maybe forgiveness is right where you fell
Where can you run to escape from yourself?
Where you gonna go? Where you gonna go?
Salvation is here I dare you to move I dare you to move
I dare you to lift yourself up off the floor I dare you to move
I dare you to move Like today never happened
Today never happened Today never happened Today never happened before

Disclaimer: You don't have to agree with the way my family feels about other "people". But you do need to practice tolerance and fairness.

FREE Lemonade Stand for Fundraising!

Please use the link below to sign up for a FREE lemonade stand WITH 100 cans of all natural lemonade. This company, located near Seattle is doing this promotion and you have to sign up by SUNDAY.

We signed up last weekend and today our "stand" and drinks arrived. You need to choose what charity you want to donate your "sales" to. (You should make about $100 for the charity of your choice!) HAVE FUN!!!

http://www.drinkcrayons.com/pinklemonadebrigade/

(I am hoping that this is "nationwide" and not a Pacific Northwest thing!)

Stink Eye

(Please excuse the boxes in the background. No-we aren't moving, I have boxes for COTP and FOG waiting to get finished being filled and mailed!)

This is Bean giving the stink eye. Last Friday she had an appointment at Children's with the Opthomologist. She has Exotropia (sp?) and Strabismus (sp?). Bean is supposed to have eye surgery on BOTH eyes in August. They want to cut the muscles in her eyes and try to realign them.

Ugh.


She is really into giving the stink eye these days, and I can't say that I blame her.

Angeline has her follow up appointment at Children's in June (*for an MRI to see if the Syrinx has resolved). If it hasn't, she will need brain decompression surgery this summer instead of the eye surgery. (It can wait- the eye surgeon says BRAIN FIRST ALWAYS!)

Of course we are praying night and day that her MRI will show her Syrinx (fluid on her spine) has resolved and she won't need the brain decompression surgery. Please pray with us! Her appointment is in two weeks. (Bekki- if you are around- maybe we could meet up when we are in Seattle, I know I will need some encouragement and friendship as I am already a nervous wreck for this follow up appointment- now I am thinking out loud- email me ok?:)

Now of course I had to do my research. There are two good websites on the eye issues that Angeline has, one is pro surgery, and the other is anti-surgery and pro eye therapy. I contacted a local eye therapist and he is just over an hour away. Our insurance won't cover the eye therapy and we aren't positive that it will help, but it might? So if anyone has any feedback on these types of eye issues and if anyone has undergone eye therapy I would love to hear from you. We need some advice! We have already made all the appointments for both her pre-op, op, follow ups... and for the eye exam for eye therapy some vision testing at the eye therapist and some therapy sessions and we aren't sure what we are doing with this. Right now we know we need to get the appointment done for the brain/spine stuff and the MRI in June. We realize that her brain issues can affect her eyes, but she has always had this appearance of looking outward and her eyes not moving together. Particularly when trying to see far distances... of course the eye therapist said try therapy first and the eye surgeon said- eye therapy won't work. This is confusing stuff.

Thanks for your prayers, thoughts and advice!
(Bean thanks you too!)
Love,
S