HAPPY BUTTON

Insight on me, you ready for it-

So,if any of you know me, you know the look that creeps across my face whenever HAMMOCK is mentioned in my pressence. I get that look, that one of just having your "Happy Button" hit. Now, if any of you are shaking your head at me, all I have to state is don’t knock it until you tried it! It is amazing people! So it happens that Matt stuck a beautiful hammock like 5 feet away from my door- who is a happy person? Oh, oh I am! I am!

So for the last couple weeks I have a routine down about every night where the rain doesn't chase me and Sarah away, we both get ready for bed, dressed and Sarah fed and then in one hand I have a usually fussy Sarah (not for long though) and my IPOD (my other happy button- music- usually ENYA) and we head over to pure RELAXATION! I get in and then situate Sarah in one arm and with the other get the thing rocking and with in about a minute the scene is set- I am looking up at the stars having a conversation with my Jesus about the day, listening to ENYA with a snoring Sarah next to me. Really it can't get any better then this!...yea..NO!

WHAT REAL LOVE LOOKS LIKE

Sarah Update #1

Hi there,

This is the first of hopefully many updates as we work toward getting Sarah Rou a Medical Visa. So the first step has began with the process of tracking down her parents and making contact. We just met with them about a hour ago, people they said YES!. Please continue pray for this process cause they need to sign the medical release and be flown to PAP to get Sarah her passport and birth certificate. What is tugging on my heart now is weather or not I should fly with them in being Sarah guardian. I am about to look into my finances because I struggle over handing off my beautiful special needs baby girl for a day, I worry about her feeding and such.

So, now that the ball on this end in Haiti is rolling I have to work on state side on finding her medical help. So yea the proces is going! Thank you both for your prayers!



In Him Always,

Courtney Pierce

MEDICAL VISA AND PRAYER!

Hello Everyone!
So, I have some exciting news then backed with MAJOR need of
PRAYER! So, as you all know I have been taking care of Sarah Rou my
beautiful baby girl wh who has possible Trisomy 13 (she has not been
officially tested but multiple doctors have responded with Trisomy 13)
and with that a medical list, we are both living in Haiti. I got her
when she was 2 days old. It is seen that is she stays in Haiti
without any major medical attention (in which we cannot provide here)
she is going to die. I got permission today to start fighting to get
her a medical VISA and bring her to the states ( I live in Southern
California) for the month of December to get for sure a MRI of her
brain, and ECHO of her heart and an ultra sound of her heart and
ultimately a plan for allowing her to live to the fullness. This also
opens up getting her official medical record so finding someone to
operate on her hair lip and cleft palate later on in life is a lot
easier. So, if you can please join me in massive prayer over this
little angel, seeing how the months are ahead of us in finding right
connections hopefully a great big answers of yes. Below I am pasting
all the steps I was told I needed to follow in order for this to
succeed, if any of you have advices, or connections to medical or
ect. it would be a total blessing! Thank you all for just lettingme
come to you with this!


PASTED SECTION BELOW=

STEP 2 -
Send for the parents and have a meeting with them and T-man and
Elveus. Explain to them what you're doing - don't ever talk about
adoption with them (that's when they'll start talking about money).
Simply say you're trying to get her medical care so she can live.
Tell her without it - she will die. That sort of thing. It might
motivate the mother to actually get the ID card and she'll have to
make a trip to PAP to work on the passport.

3) Talk to T-man. He just got a medical visa for his daughter and
then he's working on one for a girl in the orphanage right now. He
can help you get started on a passport.
So - for passports you need a birth certificate and you need for one
of the parents to have an ID card. If they don't have one - then
they'll need to apply for one.

4) Medical visas are hard to get - these are the papers that you need
to really focus on right now as they are working on the passport -
1) Letter from a Hospital - it's an acceptance letter saying they are
willing to accept her free of charge. The most important part of the
letter - NO USE OF TAX OR GOVT MONEY WILL BE USED. Make sure you have
that stated somewhere in the letter.
2) If you're not going to put her in the hospital - then you need to
get the specialists who are running the tests to agree to do the
services for free or they must state a charge. YOu have to get papers
that say the tests are free and so is the service. IT has to talk
about no use of tax/govt funds. (THat's basically all the embassy
cares about that we're not sending foreigners to the states for
medical care and using USD to do it with!)
3) If you're getting grants - then you need that paper as well.
4) They're going to need a paper of "responsiblity". Let's say your
parents say they will cover all room and board for this little baby
when she comes to the states. Have them write that paper - get it
notarized and then have them include a bank statement.
5) I can write a paper on behalf of the mission.

The paper of responsiblity, the paper I write - those are easy and
gives confidence to the Embassy.

The papers that are hard to get are the ones with the tests. So work
your hardest on that - write everyone you know. Try to get any papers
you can about free tests (even if it's not exactly all the tests she
needs). WHen they see her at the Embassy - and see how bad her mouth
is - they're going to be harder on you about those papers. I know
because with Gigi they sent me back 3 times to get more papers. I
learned from that and was able to do much better with the other girls.

Also - there is a Pediatric Doctor in Port-de-Paix. He's Haitian.
Take Sara to see him and he will have to write a paper saying what is
wrong with her and that there is nothing they can do for her there in
Haiti. That if she doesn't go to the states she will die. This is
what we did.

So when it's all said and done you have these papers:
1) Paper of Responsibility for Room/Board/Traveling fees
2) Paper from the mission
3) Paper from haitian doctor
4) Paper from stateside doctor (willing to see her free of charge or
for a fee that you can prove you can cover).
5) Paper from specialists that are willing to see her
6) Paper from mother that she's giving you responisibility to make
all medical decisions for Sara. (I almost forgot about that one -
it's important too).
7) Letter of recommendation about YOU as the caregiver. Maybe Melissa
Curtice can write it and says you've been taking care of her for
months. Her writing as a medical professional about your ability to
care for this baby and her needs when she's in the states.

What you're trying to do is bombard them with papers and papers so
that even if you're missing something they see everything you have
already and might let it slide. I was missing something for Mikela
once and yet I had all these other papers and they said they felt
confident enough to let her go with me. You might want to write a
letter too about how she has changed your life - etc. Again - the
more papers the better.

HAPPY BIRTHDAY!

The simple tune to the classic birthday song ran through my head… well it was like someone snuck in a hit repeat without my okay but either way I found my self humming it from the hours of 9:30 at night to 6 this morning as I held, soothed and explained to Sarah that it was really okay if she wanted to embrace sleep. This simple tune took the edge off not having any sleep at 6:30 when life around the campus was coming to life and Sarah was dead a sleep in my arms. I realized that simple tune had great meaning today… my Sarah Rou is ONE MONTH OLD! So, instead of waiting a year to celebrate the life of my Sarah I am going to do it in months and if it needed even in weeks or days. So, in this HAPPY BIRTHDAY baby girl!

Meeting the Family

So my bedroom has over the last couple days has been torn apart, shelves have been put in, painted, reorganized, and has slowly become a bedroom for me, a nursery for Sarah, my office and the Handicap depot and people it is only 10 by 6 (Martha Steward has nothing on me and my ability to organize) So, in this process I have made havoc with the porch section in front of my room, I have had every item I have owned, personal, books, toys, crafts, ect. spread out. It looks like I could be having a garage sale.

So, I am running back and forth in an organization frenzy today when I hear a familiar noise, my name is gargled out and quickly followed by car. I peer over the side of the railing down to the court yard below to see my Den Den peering up at me with a big ear to ear grin. Now, I realize that my little secret that I have a trunk load of Tonka type trucks has been leaked. He continues to repeat “car” in hope that I am hooked. I relent into that beautiful smile of him and figure having him up here won’t delay much. So he come clambering up the stairs to the best of his ability. I am almost out of the woods when the little punk hollers down to his friends ( I amply have named him, john and Sten the 3 Musketeers) and yep there you go all 3 (including my one girl Mary Julie) come clambering out, well my thought process quickly went from organization queen to crowd control, they love boxes and the process of empting them (grrrrrr!)

Well, I finally get all four over to my patio and promptly tell them I need to finish organizing they can find something they like and play for the time being. All but one follow heed, they break out there favorite toys and go to town. The only one who is flopping over to my doorway hollering at me is my Den Den. I proceeded to tell him that I need to get organized and that his favorite Trucks were in the giant bin next to the stairs and he simply ignores me. “Den Den there is no toys in there.” Does he listen? Nope, he continues to point and holler at something. “Den Den the only thing in there is baby Sarah”… that is quickly followed by his excited “Yep Yep!” I stared at him and his constant movement of life and then very slowly ask… “Den Den do you want me to get you baby Sarah.”… “Yep” a smile explodes across his face. I slowly gathered Sarah in my arms and apologized for any sudden movement she might experience, reach down and place her in Den Dens lap… his movement was stilled by Sarah’s 7 pound form, he just stares down at her and smiles. I then realize that he was a proud older brother in a way and simply needed me to recognize that. As I placed Sarah back in the crib I heard Den Den mutter “Love you ‘arah” then very quickly followed by him reaching for a truck.

This Is So Cool!

So I think you would appreciate this in seeing just how big our God is here in Haiti and the affect of that has to the rest of the world. So, ealier this week Vicki one of our nurses wrote Mellissa here in Haiti that she thinks she found what geneitic disoder my Sarah has and in that I was given the name Trisomy 13. I did much research and wow it fits and in that got ahold of a couple website one in particular and introduced to ourselve. Within a day I was asked to join there support group online and tell Sarah's story to the other members. So in a simple email I introduced her to the world and with in the hour my mailbox was completely full of love and advice. I was asked by one lady who works with a organization for parents who have children with disorders if she could send sarah a carepacket and WOW in the last email she said besides just sending me a box of some cute cloths, medication and pacifiers if I would go onto this website and see if there is any thing else that is needed. Boxes of equipment have already started its process of making it here to Haiti. Our GOD is HUGE even for the little ones among us and that keeps just blowing my mind. So I thought that through the every day life of Haiti these little moments should be shared.

It’s so pretty…

I write this and that giddy smile still threatens to invade my face… people I have just met my object of love… that’s right I’m in love people… now before you all get overly excited let me put a name to this new infatuation of mine… FOUR WHEELING! That’s right baby! In love! I, Courtney Pierce got to experience going on a four wheeler for the first time… then driving a four wheeler all by myself and what tops it all off is that it is in HAITI- YEEHAW! It is so pretty!... did i mention fast too...

Finding Answers

I stared at the page in front of me, then back to the hand written scribbled name on a folded napkin, could this be right, I start at the many medical opinions and just sat in a world of the unknown. I quickly hit delete and type out the name again , nope it was correct first time as the same page blinked at me in confusion. I slowly dragged my mouse over the first of many websites, as I clicked the words, Trisomy 13 burned its place on my computer memory.

What led up to this moment of confusion was a series of events, the big one was when this un named baby girl not even cleaned from birth showed up at the mission here in Haiti on July 23rd in un wanting hands due to her disfigurements. She was born with a cleft lip, cleft palate, extra digits, a un developed right eye, crippled hands and a wonderful ability to turn purple. She was quickly named Sarah Rou and even more quickly fallen in love with. In all of this she was passed off to a new type of family one made up of hearts near and far that were beyond ready to fight for her.

As she became a part of the mission family, answer started to be sought trying to connect her many disfigurement to a possible medical name. Pictures were taken and many state doctors were talked to until an answer slowly arrived. I was simply told that Sarah had a genetic disorder called Trisomy 13, but I soon realized that there was nothing simply about that disorder at all. Those simple words were what placed me in a foreign world of big scary adjectives such as not compatible to life.

I swam in this scary world for hours while Sarah slept nosily on my lap until I found a bit of dry land to cling to while searching a particular site called www.livingwithtrisomy13.com The scary adjectives were still there but so was hope for support and understanding. I accessed knowledge through emailing away my frustrations in hope for some type of reply.

Not even a day passed before me and my little girl Sarah were adopted into this new family of parents who had or have a child with this disease. I was ushered with open arms into an online support group where our story were shared and my email box became instantly full from responses of love. Through the scary adjectives of Trisomy 13 I saw people living to the fullness with what they have. I saw love that was bigger then the threat of death and for some still there and growing through death.

So, my little Sarah has been in my life for 26 days at 6.5 ounces and at 20 inches long. She has so far beat the one statistic that claims that most don’t make it past a week. With her in my life I know for a fact that my life hasn’t been the same since. My little angel has me wrapped around my finger, no complaint on my side though even through broken nights, rough feeding and health reasons, she is my girl. She loves to cuddle, sleep right across my stomach at night and just be held.

Through Sarah since her birth I have seen amazing individual come out of the wood work and do amazing things through prayer, support and even the last minute dashing to the store to pick up needed items or having local a hospital donate certain needed items that were shipped to me. Whether or not it is realized by these individual are totally being used by our God in BIG ways. So, weather or not my Sarah makes it, it is not what will be burned into my heart, but the simple understanding of how big our God is through such a little forms and just all the hearts that are forever touched.

Mild Stone

Well would you take a look at that, it has been 30 days since my departure from the states to Haiti. 30 days of my new life here, where I have learned to find my HAPPY DANCE beat in laughter, love, friends, faith, new understanding and a BIG God. 30 days in keeping that beat through frustration, lost, anger and sadness. It has been 30 days and I can tell you that there is nothing that can ever be given to me to ever exchange those 30 days here in Haiti and the days to come. It is 30 days that I cherish oh so much! Thanks for making it this far with me.

Mini Vacation

So, me, Sarah, and 5 others here from the mission decided due to the lack of electricity, water and over abundance of heat and humidity that a mini vacation was needed. So, plans to go out to the Far West to visit with Curtis and Danielle at their mission next to a beautiful beach and nice whether were put into action. Our original plan was to be gone from Thursday to Saturday but that got changed to Friday. So, Friday morning we headed off, I had Sarah in another fun wrap sitting in cab. We arrived to nice weather, a little gloomy but not to bad. The rest of the day played out as we had lunch, me finding the most comfortable rocker and just refusing to move, and then making and eating an amazing dinner. We had fun being in each others presence and went to bed under a stormy sky and the great threat of a tropical storm. I toughed it out in my tent with Sarah against the really strong winds till 5 and then it won and I retreated to a couch. We woke in the morning to the fear of being flooded in so had to cut the adventure to an amazing, pretty beach for what I hear to another time and headed home. It was a fun relaxing time and the first overnight trip Sarah and I have experienced together, and we both survived.

Oh, If You Could Have Seen Us

Who knew that this quiet Wednesday morning would turn into something that needed to be written down in the memory book. So, in this quiet morning I am asked by Matt, if I wanted to go to the local market and explore. Now, not knowing what “explore” all entailed I simply said yes then remember to look down at the little bundle that was happily using me as a pillow and in that wondered what to do with her. I busied myself for the next 15 minutes finding the appropriate baby wrap and then using all my patients in following directions. The end result was comical but useful so we proceeded out the mission gates toward quite an adventure. The walk is about 45 minutes- ish but I wouldn’t really know we used a Tap Tap. A Tap Tap is there form of Taxi but totally out does New York style taxis hand down. They are pick up trucks with a wrap around bench if you’re lucky. So, we climbed aboard and headed toward the market. This market peaks it face out every Wednesday and Saturday and it is like a swap meet type style. People show up at the river bank selling everything, it is in a way there Walmart. So, on this adventure I bought a diaper pail (cause thank you very much I am conquering cloth diapers) and a rad mosquito net tent for Sarah that zips her in safe from what I like to label “Flying Death.” So, on the way back is when the memory book needed to be quacked open, I Courtney Pierce now mind you with Sarah Rough wrapped to my chest hopped on the back of a Moped and headed back to the mission. Only in Haiti is what pops into my head every time I retail the story of me on a Moped with not even a month old baby. Oh, if only you could have seen us, it was quite an adventure.

Invasion

The pain of lost is still very raw as I avoid the baby orphanage because of an empty crib but I am noticing something in the pain. I am noticing joy; it starts off very subtle, hovering around simple tasks. It slowly invades my time with Sarah as she snores noisily in my arms, down in Heaven’s Waiting Room having me ask to give kisses and watching my Den Den flop into my lap and lower his head so I can lavish kisses and seeing John and Steven wait patiently for there turn. It is seeing Walden fight in his crippled body for my attention and in the accomplishment, seeing his eyes light up. It invades my quiet times and the understanding that I have a big God. It invades the times of playing cards with the others missionaries and knowing I couldn’t ask for a better family while I am away from mine. Now, tears still come but out of selfish motivation of simply wanting my Jude here not in the arms of my Jesus. As Jude is being held by my Jesus I am convinced he is being sung “Hey Jude” … probably not as off key… and in that the JOY invades.


I’ll convert their weeping into laughter, lavishing comfort, invading their grief with JOY!
Jeremiah 31:13

Simply Learning

I simply learned how to say hello to Jilmar (very soon to be nicknamed Jude) March 22nd 2008. I learned how to love him for all 8 pounds that he was at a month and a half old. For the two and a half weeks I was there in the Spring I learned very quickly that he was going to be my kid. He had Down syndrome and a list of other ailments but in it all we simply learned to live. In the months that followed I learned how to brag about my baby boy back in the states and wait patiently when he would only live a building away from me not a “how is he?” through email. July 19th hit and he was back in my arms now at six months old. We learned how to simply be in each others presence while I did homework and he played on the play mat. I simply learned to love even more my baby boy.

Today I had to simply learn how to say goodbye to my Jude. I learned that in that moment of being told that I couldn’t go pick him up anymore when I just wanted to relax, that I couldn’t watch him roll over or smile, my words fell short but the pain didn’t. Today was a blur, somewhere between me just crying and if any of you know me, deep cleaning something I got to go and say goodbye one more time to my baby boy. I got to simply hold him and quietly hum “Hey Jude” as they did the funeral preparation around us. I simply to learned to love no matter what the outcome may look like, even if there is pain involved. I simply learned. .

Remembering to Simply Remember

As I sit here and I am trying to find understanding to present my day through words but really there is a lack of need to go fully in depth. Today in one aspect was draining, I was emotionally exhausted from a single event that left me reeling and eventually curled up in a fetal position for an hour with Sarah to just distress. In this single moment of frustrated pain of looking back at it in reflection I realize that I can not forget to remember the small victories that occurred today.

Victory number one comes to us in a little over six pounds who is now a week past being told would not make it and two weeks past fighting hard to enter the world. Miss Sarah Rou is two weeks old, and already has the ability to have you fall head over heels for her, suck like crazy on your finger and know that human touch is exactly what she needs. Through her I have learned to truly love and give all to God, become a human pacifier and a body pillow for all hours of the night and comforts.

The second one is watching my little guy Walden who lives down in Heaven’s Waiting Room and I originally fell in love with summer of 2006 find his ability to become un trapped from his body. I had him on my lap today and he is slumped on top of me due to his inability to move his arms, legs or hold up head very much. He has gathered movement over the last couple years but always out of control. His body does not line up with his mind but through it all he has an amazing smile of recognition. I am holding up this cloth block in front of him today and telling him to grab it. I keep it in his line of site and just keep him interacting with it. His hand is all over the place but suddenly he is touching the block. I give a holler of praise and see if this was on purpose, sure thing he is connecting his twisted hand to the block time after time. Also, in this I am also able to talk to him and he answers in the noises of trying to respond. He is my boy and he is breaking out of his entrapment one movement at a time.

So, as today was a day to find enjoyment and victory in the small things of life.

Remembering to Look Up

It was becoming a normal routine… me in my cut off green sweat pants and oversize sleeping shirt gingerly making my way up the stairs from my living corridor with a flashlight in one hand and the curled up form of Sarah in the other. I inched myself down the dark pathway to my destination as the sounds of my team members reminded me that they lay peacefully in oblivious to our situation. The only light that lit the pure darkness was my sad excuse of a flashlight and the dull green light of my watch reminding me that it was 2:30 in the morning again and this was happening once more. I finally found the door in which I needed, knocked a couple times and waited for the groggy hello and questions of what’s going on.

I presented Sarah and explained that after the normal feeding at 2 this morning she wouldn’t stop crying, then she did suddenly and it was due to her amazing ability to just stop breathing. She instantly came back to me but not without concern on my part, she was wheezing and miserable and I needed someone to figure out what normality looked on her part. I needed to know if it was normal for her to become listless and then agitated. I needed to make sure that everything that could be done was. It was allowed for all my questions to be asked and frustrations be talked through. Sarah’s tube was resituated, lungs checked, along with blood oxygen level. The bottom line was that I had a sick baby and the scary unhealthy ways, were in a way a normal ordeal, it was all a waiting game.

So, here I am with this 6 pound sick baby in one hand and an extremely heavy heart. I am walking up the path way toward my room and just frustrated. Frustrated for her pain, frustrated for my inability to do much more then hold her and a little frustrated toward God in wondering where He is in all of this. So as I am walking toward my room surrounded by my frustration and I happen to glance up. This small moment of my head toward the sky takes my breath away. In the darkness that is Haiti, the sky above me it lit up by thousands of stars. Never in all the trips of holding my sick little girl and in all my frustrations have had had I noticed this beautiful presentation of God’s beauty through the night sky. I realized then that my the problem was not God in His absence cause He is here, it is in me not simply looking up and seeing Him.

It hits me that in life’s frustration and such we often forget to simply look up. Look up past our own frustrations, look up past the here and now, just look up and see our God who is so passionate about us. So passionate that He does the little things for us, in my case give me a magnificent night sky that just reminds me of just how BIG my God is. All we need to do is simply look up.