A Pony for the Princess.

Every girl wants a pony, right?  In this case, it's a lovely purple Pony - well used, but still functional, on loan courtesy of our wonderful PT!  The best news is, Marissa doesn't hate it!!  A few months ago, her rehab doc wrote for a Pacer Gait Trainer, but the likelihood of insurance covering it is slim to none.  We'll still have her trial one at some point, but in the meantime, the Pony is working out beautifully to get Marissa some time upright and even a little bit of weight bearing.  We have been working on getting her into a stander, but she absolutely will not tolerate it.  I think it is way too confining for her - too many straps, too much velcro; too much like being strapped down for an MRI, CT or other obnoxious medical procedure.  I'm grateful we found something she tolerates because it is so important for her to spend some time vertical.  She enjoys it, too, so hopefully it'll be motivating for her.

Totally Sporadic Post

I'm way overdue...for many things.  I need to explain my private blog, elaborate on our trip, talk about the kids - all of them, update on our adoption processes, wish you all a Merry Christmas, and of course post pictures, just to name a few.  I have wanted to post, really I have; but every time I sit down to try I can't seem to find the right words or formulate a nice flow for a post that will make sense.  So, I guess in an effort to just move along, I'll lay it all out in one big end-of-the-year conjumbled, sporadic mess. 

The private blog.  It is temporary, I think.  I needed a place that was safe for just a while.  Kevin and I have been under attack recently, unfortunately by members of our own family who have feigned support for over a year now.  About six months ago I was blindsided by one brother and two weeks ago, blindsided by another.  Much to our surprise, they do not agree with our adoption processes.  One equated letting his children play with ours to letting "his kids play outside in a lighting storm."  The other said that "we are adopting our children to gain attention for ourselves."  We were also told that we are doing a disservice to Esen and Marissa by adding more children to our family.  This coming from people who have never taken a moment to get to know them, who have found Marissa to be too overwhelming and too difficult - not worth their time.  They have passed judgement, blame, charged us with tearing our family apart when it is actually they who have opted out.  It is my job to advocate and educate, but I cannot cure ignorance.  I am at a place where I need to surround myself with people who can provide genuine love and support for us and for our children.

We have a motto in our home - "Families are Forever" -  It's a book we read often and anytime anyone's sad or worried, Esen repeats this mantra.  I intend to keep this motto going and I won't subject my children to the negativity and ignorance of others.  If people choose to isolate themselves, it is they who will miss out!

So, I needed to limit access to our family's story, to our childrens' stories, but I didn't want to stop sharing and I didn't want to stop chronicling our journey.  I feel like I have an important story to tell.  This blog isn't written for entertainment purposes.  It is first and foremost a journal for my kids.  It has also morphed into a support system and educational forum.  I have never forced anyone to read it, but I guess they couldn't help themselves and were frequently offended by the content.  In an effort to spare them, it'll be private for just a while.  For those who have stuck with us, Thank You!

We arrived home from Ethiopia on Saturday, December 10th, to the very sad news that my dear Grandmother had passed away early that morning.  She was a beautiful, inspirational woman whom I will miss very much.  While her health had declined steadily over the past several years, I don't think one is every really ready to say goodbye.  She was the epitome of grace, strength and unconditional love and I am so sad that she was not able to meet her newest grandchildren. 

Our time in Ethiopia was totally amazing.  I can't convey what it was like to be there, to experience the country, the culture; to see and meet and touch the people.  Simply telling you about it doesn't really mean much - you have to experience it.  I was talking with a friend about our experiences today and what I said to her was that we were long overdue for a life-changing trip.  We had one in Kyrgyzstan nearly 5 years ago and I didn't fully realize the backslide that had occurred in our lives until we went to Ethiopia.  Again, we have been reminded what life is truly about.  Our tiny, overpriviledged, little corner of the world is so insignificant in the whole scheme of things.  We met some amazing people, held some amazing children, and a piece of my heart will forever stay in Addis Ababa.  You will hear more in the coming weeks about some of the children we met there.  I have committed to doing more for them.

Bamlak and Hiwot are incredible, beautiful, precious souls.  They know fully that we are their parents and that they are coming to America.  Bamlak is a very sensitive little boy who will likely have some challenges at first.  He is also full of life and mischief and will likely team up with Esen to successfully turn the remaining brown hair I have grey!  Hiwot is a teeny, tiny bundle of cuteness that just dances around singing all the time.  I don't think I ever saw her without a smile on her face and her giggle is like nothing I have ever heard!  We HOPE that our case will clear the US Embassy by February - the final stage in this leg of the adoption process.  My Mom has decided she is up for a life-changing journey and will accompany me back to Ethiopia to bring the children home!

Here at home, our brave friends, Jean and Greg held down the fort and kept our beloved Esen and Marissa safe and sound while we were travelling.  We are so thankful to have friends that love and care for us and for our children as if they were their own.  The kids did awesome and (I think) Jean and Greg are still our friends! 

Esen has been singing Christmas carols for weeks and has been anxiously awaiting Santa's arrival.  Last night we took him to see Santa and he insisted that he wanted to take him a "lunch," so he packed him up some cookies and also carrots for the reindeer.   He has had a few selfish moments where he has mentioned that he wished there were "more" presents under the tree, but I have continued to remind him that he needs to be thankful for what he has and he has been very good about it.  We are having a pretty light Christmas this year, not only because of all of our adoption expenses, but also because when I look back at previous years, there's always just too much "stuff."  I still think we have too much and I intend to continually trim it down - wean them off so to speak.  They won't be deprived, just conscious of what they have and what others don't have.

Marissa....oh, Marissa.  She has had a rough past week or so.  Her gagging has slowly been returning over the past couple of weeks and is now back to near-constant.  She is also irritable and head-banging.  She has been sick on-and-off pretty consistently for about the past six months and her pediatrician is concerned that she may be developing asthma or another chronic lung issue - the joys of being a preemie.  She did have an MRI yesterday to rule out shunt malfunction just because of her recent behavior changes.  I'm happy to report it was the "best looking MRI" yet!  You know what that means - her FIRST CHRISTMAS without a shunt malfunction.  That's a lot to celebrate!  Her behaviors are quite unmanageable at the moment, though.  We could really use some good vibes sent out for her.  Despite getting her off one seizure med a couple months back, we've added daily nebulized meds and increased her constipation meds and she's on an immune supplement.  I would add Melatonin as suggested by her rehab doc, but sometimes it's just overwhelming to look at this pile of meds and consider adding yet another.

In Kyrgyzstan adoption news - we've not had any updates from our agency with regard to Kamila or how she is doing because as of last week, we don't have an agency!  I can't say I'm surprised because they have been, in my opinion, inching towards closing the doors for quite some time now, but I can say that they way they did it and notified families was total crap.  They sent a form letter out via email to some families, but not to others so some had to find out via word-of-mouth.  What this means for us and the process is uncertain.  We still have our attorney working for us and Kyrgyzstan hasn't yet announced the three accredited agencies.  We will have to go with one of the three who is accredited by the Kyrgyz government.  Our file will be transferred and hopefully all will work out, the biggest hurdle is likely to be a financial one.  New Agency = all new Agency fees.  Still, she is our daughter, has been for 3 1/2 years and I've said it a million times - we won't walk away from her.

This Holiday Season, we have been unbelievably blessed by the generosity of some very kind-hearted souls who have supported our adoption through financial gift and prayer.  We are grateful beyond words.  There are times when "Thank You" seems so inadequate and we have had several of those moments lately.  I am continually amazed by the selflessness I see in others.  You know who you are - you have to know that you have changed the course of our lives and of our childrens' lives and we are and will always be eternally grateful!

I think that's it in a nutshell.  Merry Christmas to each of you.  I hope the Holidays bring you peace and love, happiness and strength.  I hope you all have good health and take the time to remember what is truly important.

Give Hope in Ethiopia

Hope Ethiopia from Lifesong for Orphans on Vimeo.

Children at the Lifesong Ethiopia school  are fed 2 nutritious meals per day, provided with a quality education, and taught the message of Jesus Christ. This gives kids like Beza the hope they need in order to break free from gripping poverty.

We currently have a need to build a 12-room expansion to our existing school, in order to reach more children like Beza. We have been blessed, by the generosity of a donor, to be able to MATCH all donations to the Ziway and Adami Tulu Schools between now and December 31st... up to $130,000!!!

This week, the 5^th through the 9^th, we invite you to join Hope Ethiopia:100. We are looking for 100 people to give a one-time $100 donation! 

Joining this team will not only give hope to kids like Beza, but your dollars will be matched AND you'll be entered into a drawing for a FABULOUS gift basket (details below).

Help us achieve the next $10,000 by being a part of our Hope Ethiopia: 100 Team!

Together we can make a difference in the lives of these kids!  Together we can do more to bring joy and purpose to orphans!

And don't forget to keep checking the Lifesong blog for updates all week!

*Gift basket includes: $100 itunes or amazon gift card, Lifesong t-shirt, Lifesong cookbook,Journey On CD, handmade necklaces & note cards by orphans in Zambia, handmade ornament from a child in Ukraine, 5 bags of Gobena coffee, Gobena coffee
mug, Gobena t-shirt, andGobena tote bag. This basket is worth over $250!


*To commit via check, please send an email to info@lifesongfororphans.org. Make check payable to Lifesong for Orphans, indicate 'preference Hope Ethiopia: 100' in the memo.

Goodbye

A hard, hard day - lots of tears were shed.  We're leaving a piece of our hearts here in Ethiopia.

Introducing

Okay, I've tortured you long enough. Oh, and yes, they have names!
Without further adeu, we're so proud to introduce the two coolest kids
in Addis Ababa: Bamlak & Hiwot!

Today was a very emotional day to top off what has been a roller
coaster ride of a past week and a half. I'm going to keep this post
strictly adoption related, although I will say there's been a ton of
really heavy stuff going on that has just compounded our stress
lately.

Last Wednesday, we received a call from our agency coordinator.
Actually, I got an email and a message on my cell - both stating that
she wanted me to call her as there had been an "interesting
development" in H's case. I don't have to tell anyone experienced
with adoption that this is NOT something you want to hear, especially
4 days before boarding a plane for your children's court hearing.

My stomach turning, I called her and got some pretty shocking news. I
won't share it here as it is H's story to keep for herself, but it was
very difficult to get on the plane and go through the first couple of
days here not knowing what was going to happen. Needless to say,
things have worked out the way they were intended and here we are,
parents to two more amazing, beautiful little miracles!

Our court hearing today was less than five minutes, our coveted MOWA
comment was there and the hearing concluded with those four glorious
words: "Congratulations, they are yours!."

The highlight of our day was definitely our visit with the kids. They
sang "Mommy...Daddy...Mommy...Daddy..." for the entire three hours we
were there. They rarely wanted to be put down. We're starting to see
their personalities a little more and it's interesting to imagine how
they're going to fit into our family. We can see that food will be an
issue, as will sharing toys and attention - those things all to be
expected. They are both incredibly smart and pick up on things very
quickly. We're still pretty surprised at how tiny they actually are.
The measurements they give us each month correlate to Esen and
Marissa, but in person, they definitely don't match up. H is wearing
a 2T and B is wearing a 3T. Guess I should've held onto some smaller
clothes!!

There's another very sweet family here from Tennessee who are adopting
a sibling group of three from the same orphanage, H's best friend and
B's best friend among them; so we've enjoyed spending time with them.
We're enjoying the restaraunts, shops and went to the National Museum
this afternoon. The only thing we're not enjoying is the pollution -
my sinuses and lungs are truly hurting.

Tomorrow is a light day as all the "business" is done. We see the
kids, have lunch, visit another orphanage and probably do a little
more shopping. I love it here, I can't imagine leaving B & H
behind. I can't imagine that final goodbye, but at the same time, I
miss Esen and Marissa so much. We Skyped last night and it was so
hard not to just scoop them up and hold them. Soon, very soon, I
hope, we will all be together.

Hello From Addis Ababa

We made it in late Mon night.  Our travel was awesome, smooth, perfect, really!  We just finally got an internet connection and it's not the best, but I'm attempting to make some contacts.  We met the kids today and they are absolute sweet angels!!  We are so in love!!  Tomorrow is court, more time with the kids, probably some sight-seeing and some shopping.  Addis is an amazing city and we are once again being reminded why there is so much to be thankful for.

Bon Voyage

We leave this morning!  I really can't believe it.  I'm not quite ready to share the events of this week that have lead to the privatizing of my blog or that can explain my somber silence over the past few days.  It's been a lot to take in.  Perhaps over the next few days, I will have time and energy to share more.  Please keep our dear friends, Greg and Jean in your thoughts and prayers as they embark on their own journey of caring for Esen and Marissa this week.  We are so grateful to have friends who love us and love our children unconditionally. 

I hope that I'll be able to update from Addis, but I'm told the internet connection is sketchy at best, so I'll try.  I think I'll at least be able to email some posts in and hopeful I'll even be able to include a picture or two!

7 Days

Soon, very soon - I will have to begin to think about packing!

13 days.....

We are going to meet our kids in just 13 days.  I really can hardly believe it.  I am filled with anticipation and a lot fear.  My fear does not stem from the flight or the meeting or traveling, but from the fact that we are still so far from having the funds necessary to actually bring the kids HOME.  We have applied to every grant organization out there.  We have held fundraising events large and small.  We have refinanced, taken loans, liquidated every asset we have available, picked up extra jobs, extra shifts, done away with non-necessities and still we have fallen short.  It is through sheer generosity and the loving hearts of others that we will make it now. 

By going through From HIV to Home (a 501(c)(3) not for profit) you can claim any donation as a tax write off and save two lives.  The total expenses for this adoption are going to be upwards of $48,000. The money donated to their fund (and it needs to be designated for The Fenske Family at the time of the contribution) goes directly to B & H, so if for some reason we ended up not adopting them (NOT GOING TO HAPPEN), the money stays with them and helps another family bring them home. We don't see a cent of it unless it is for their adoption.  Many people may ask why we are doing this when we don't have the finances up front. That is a very valid question. It's for the same reason that people finance their vehicles, boats, other "toys", vacations and have a mortgages on their homes. We simply don't have $48,000 to plunk down all at once to complete another adoption. If we waited until we did, then the children would have to wait, too. B & H don't have that luxury - they cannot afford to wait.

So will you take the leap with us?  Could you do without 1 dinner out, 1 less present under the Christmas tree, 1 less latte if it meant that two children could be saved?  It would mean the world to us and to them.

A Brave Little Soul Lost

This past week, the world lost an amazing, beautiful, very special little boy.  His parents fought for him, prayed for him and waited for him for so very long.  He came into this world fighting and for three months, his parents lived the life few of us have known - trapped within the walls of a hospital.  Eloquent and adequate words escape me right now.  I simply have had none to share since I learned of his passing.  My heart hurts.  I saw him just two weeks ago, held him, was amazed by his strength and how wonderful he was doing.  There had been talk of his homecoming, there were plans being made.  He had one more hurdle to clear - a permanent shunt placement to address his hydrocephalus.  Up until last week, he had a temporary shunt which had to be tapped every few days.  For anyone who has ever had to endure or witness their child undergo shunt taps, it's an unpleasant, to say the least, experience.  I assured his Mom that this surgery would be routine, that what happened to Marissa last year following one of her shunt revisions most certainly wouldn't happen to her son.  I assured her that this was a straight-forward procedure, that he was strong and that he of course had the world's best surgeon in the world.

Surgery is NEVER without risk - I know that, we ALL know that.  Little bodies are fragile and you just never know how they are going react.  Still, we go into each and every procedure hoping that all will go as planned.  For sweet baby S, things did not.  He suffered a hemorrhage and unable to be stabilized, he passed away in the arms of his family. 

Not a day has gone by since Wednesday, February 3, 2010, that I have not relived Marissa's third hemorrhage.  I know every single event of that day.  I can close my eyes and see it playing out in slow motion, I can see what people were wearing, I can smell the smells, hear the sounds, everything.  Call it a solid memory, PTSD, whatever you want, but I don't think it will ever go away.  When a person walks that line or their child walks that line - the line between life and death - you don't get to forget.  The thing is, we got our daughter back - we got to take her home.  She has had 35 surgeries, THREE brain hemorrhages, yet she has survived and we get to go on with our lives as a family.  For Baby S's family, they were robbed of their chance to spend Thanksgiving and Christmas together, to watch their son grow.  They will bury their baby and that is just plain wrong.  I know they will never get that day out of their minds and I know there is absolutely nothing anyone can do or say right now to ease their pain.

I have survivor's guilt.  I have no words to provide to them.  How do you wrap up what you want to say to someone in a sympathy card?  How can you say anything to someone who has just lost the most precious thing on Earth?  How do we just forge ahead knowing that they have been left behind?

Lifesong's Incredible Holiday Project!

Make a Difference in ONE Life!

What is your holy discontent? What is your God-given passion on this earth? You know, that one thing that MOVES you to action, that brings you to tears, and causes you to lose sleep? We have a passion, a yearning to see justice for the fatherless!

"Learn to do right; seek justice. Defend the oppressed. Take up the cause of the fatherless; plead the case of the widow." - Isaiah 1:17


2011 Gifts of Purpose from Lifesong for Orphans on Vimeo.

It's that time of year again. Holiday music rings through your speaker systems. Decorations light up your street corners. Families gather together.It's the season of love, joy and family.  

As we celebrate the birth of Jesus Christ during this season of giving, we often forget to give to those who NEED it most! This year give differently. Give FAMILY to the 147 million orphans worldwide who dream of belonging. Give HOPE to children living on the streets whose only Christmas wish is survival.

What if, this year, your family gave a gift to those who need it most? A gift that won't fit under the tree? 

Would you consider making a difference in ONE LIFE...

•  Help a child break free from gripping poverty.

•  Give the love of Jesus through Christian mentors.

•  Give a future to an orphan's caregiver.

This year join Lifesong for Orphans in giving a gift with purpose. A gift that will speak Jesus to a child. Introducing Lifesong's 2011 Gifts of Purpose Catalog. 

NOW, for even more exciting news....

In Ethiopia, children need an education to break free from gripping poverty. Public schools are lacking, so kids are left behind without the  HOPE of an education or future. Our current Lifesong school is not only giving by teaching these children about Jesus, but also feeding 350 hungry children 2 meals each day. We currently have a need to build a 12-room expansion to our existing school... please join us to make a difference in a child's life.

As of last night, we have a generous donor that has stepped up to MATCH all donations to the Ziway and Adami Tulu Schools in Ethiopia between now and December 31st... up to $130,000!!!!!! Can you tell I'm excited? What a GENEROUS way to make the most of your giving and bless the children and families in these communities! Let me tell you first hand, these schools NEED to be expanded... these children NEED an education... they NEED to be fed each day... they NEED to hear about Jesus! Lets give HOPE to these precious children in Ethiopia!

Would you join us in prayer as we seek to make the need known?

MAKE A MATCHED DONATION NOW!
***You can use the link above to make a matched donation OR select any of the Hope Ethiopia options below. 

Gift of $30 cares for 2 children for 1 month.

Gift in Honor of

Gift of $525 cares for 35 children for 1 month.

Gift in Honor of

Gift of $1,500 furnishes one classroom.

Gift in Honor of

Also, don't forget that you can give a gift in honor of a loved one this holiday season!

PODCAST

Tomorrow, the lovely and talented Suzanne is hosting a podcast along with two other very lovely waiting Kyrgyz mamas.  If you're able, please tune in for updates on the delays and more importantly, to learn how YOU can help.  Visit: Mother The World for details.

Scentsy for Kamila

My amazing friend, Linda, is sponsoring a Scentsy fundraiser for Kamila's adoption fund.  You can read about Linda and her incredible husband, Dan, in an article published just this morning HERE.  They truly exemplify selflessness and dedication to helping children overcome adversity.  They are amazing parents and wonderful people.  Although they have so much on their plate with work and family, they found a place in their hearts for Kamila and have on many occasions reached out to our family and offered support through prayer and fundraising for her adoption long after others in our lives gave up on her.  We are so grateful to them and they will forever be a part of hers and our lives! 

Please go to Linda's site and check out the amazing Scentsy products.  The photo here is my scentsy warmer, a gift from Linda, and it lights up my kitchen every single day.  The Holidays are fast approaching - you could not only help Kamila find her way home, but brighten someones day with a beautiful gift from Scentsy. 

COURT DATE!

We have a court date!  We REALLY, REALLY do!  I'm shocked, amazed, a little freaked out and so indescribably happy!  We will be in Ethiopia Dec 5-9th - we're going to MEET OUR KIDS in like 30 days!! 

Now the real race begins.  I wish I had something incredible to give a way.  I wish I had some great contest to host, but I just don't.  We have a long ways to go to raise the ransom to spring our kids and a very, very short time to raise it.  Please link us, like us, pass our family's story along.  We have lots of ways people can support our adoption.  Our kids really want to come home!!

Happy Adoption Day Noodle!

Two years ago our lives were forever changed with the 'surprise' blessing of a very tiny and very spunky baby girl!  Marissa has truly transformed our family, our lives and our souls.  She has changed our view of the world, our values and made us, I think, better people.  Not a moment goes by that I am not grateful for every second I'm allowed to be her mom!

This photo slideshow customized with Smilebox

How Will YOU Choose to Make a Difference?

 November 6th is Orphan Sunday

Happy Halloween!

I'm Begging for a Pie in the Face!

The Wright Family over at Act of Kindness are once again hosting the Pie Challenge for the orphans of Kyrgyzstan.  Please take some time, first, to watch last year's pie video below for a little preview of what it is all about.



Forty people have pledged to take a pie in the face this year, yours truly included, which translates into Christmas and a year's worth of vitamins for 2000 Kyrgyz orphans!  Kamila has benefited in the past and once gain, this year, she will spend her FOURTH Christmas in an orphanage, away from her family.  Folks, orphans don't get a day off; they don't get to 'forget', they don't get to turn off their loneliness; but for one day, the Wrights will bring them Christmas joy - they will be part of a family.  Better yet, for an entire year, they will receive life saving vitamins!

Please consider going over to the Wright's blog and making a donation in my name so that I can reach my goal of $500 and earn a pie.  I would be so grateful, but don't just do it for me.  Do it for Kamila, do it for the 2000 orphans left without families who will benefit, and do it for Esen because what 5-year-old doesn't dream of throwing a pie in their mommy's face?!

Gifts for the Kids (and us)

We finally got the green light to send a care package to B & H.  A wonderful, sweet family who travelled this past week for court took it along and sent us this email about their experience in delivering it:



Hi Shannon,

Yesterday we had a chance to meet H and B, they are both so adorable!

They were in school when we arrived, so we waited about an hour for
them to get home and they were really ready to have fun when they got
back.  We found it so sweet how all the kids shared together without
any direction--older ones helping the younger ones open candy and
sharing toys.  All the kids really seem like a big family.  We didn't
know much about (the orphanage) before visiting, so the small number of
children there seems to give them all lots of attention from the
nannies.

When H first came in from school she ran in with her friend S.
jabbering away and greeted us.  They both had to go change clothing
and came back dressed in pink.  H seems so happy, she loved
looking at your photos and naming who you all were (enat, etc).  As
she cuddled her baby doll she sang this sweet little song to it--very
precious.  She was very patient and looked through her whole gift with
such excitement!B was basically a bundle of energy--he ran into the room and
started kicking the balls around.  Our driver helped call him over and
his eyes lit up when he saw the truck.  He was off playing with it
quickly--racing it across the floor and laughing.  He would sit still
for short bursts of time to view the other things, but really the
truck was just so exciting for him.  He did come over by H and
look at the family book together and they chattered away in Amharic
for a bit.

Then of course he rejoined the boys playing ball and zooming his truck!
Both very sweet kids, it was great to meet them!


I can't tell you what it means to us to know that they have a piece of our family with them, that they know they have a family waiting for them.  We are entering the second week since their court case was opened and could hear any day now when our court date will be.  I'm on pins and needles - can't wait to meet them!  Of course, I'm also extremely stressed about how in the world were going to raise the rest of the funds to actually be able to get down there, but I know it just has to work out.

Becoming a Boy

Something happened over the summer – my toddler became a boy.  It happened really fast – like super-fast – like make my head spin, eyes water, wonder what year it is fast.  Six months ago I had a toddler and today I have a little boy, with grown up thoughts and attitudes; a boy who goes off down the street to his friends’ house with a watch on so he returns home on time (and he always does); a boy who is showing amazing responsibility and comprehension; a boy who asks really grown up questions and expects honest answers; a boy who shows more compassion and understanding than many adults I’ve come across.  This boy can now ride a two wheeler, hit a baseball better than any of the older neighborhood kids and read and write better than any of the kids in his Kindergarten class.  Kevin has said several times that (Seinfeld fans will appreciate this) it was “The Summer of Esen.”  I am so proud of him and yet find myself wishing I could go back a little bit, slow things down because I know time is going to continue to race by.  He is so grown up in so many ways, yet still very much my baby.  I worry about him, as I guess I should – I am his mama after all.  I see him playing with his friends and he is so much smaller.  I see him struggle with his sensory issues and worry for the day when he begins to realize that he is different.  I know that all I can do is let him be who he is meant to be and let him grow, learn, make mistakes, guide him to the best of my ability and hope that it is enough.

Enjoy the cuteness that is my little man!

Port Drama - A New Series on Prime Time

Okay, it probably wouldn’t net many viewers, but I for one sure would like to know how it’s going to play out.  Remember back HERE and HERE and HERE and HERE and I could probably go on and on.  We opted not to leave Marissa port-less at the request of pretty much everyone employed by the hospital.  The venous access team has been unsuccessful in their attempts and only one of the pediatric anesthesiologists has been successful in obtaining peripheral access and that was under general anesthesia after four attempts.  That IV lasted less than a day.  If there were an emergency or if Marissa just needed labs drawn (which she does fairly frequently), we would be completely out of luck.  When her Hickman infiltrated back in May, the decision was made to give her a port-a-cath.  Because she has no alternative suitable sites, her surgeon decided to try and place the port catheter over a wire into the vessel that was occupied by her Hickman.  He was successful and we were beyond thrilled; especially when he marched in and proudly stated “she’ll have it for at least 3 years!”  After 18 months of managing a line that needed daily flushing and every three day dressing changes, she now had a completely hidden port that we didn’t have to do anything with.  We (and she) really enjoyed the remainder of the summer.  Baths!  Swimming! No more Line tugging!

Until….we went for the first flush.  The port didn’t work.  I didn’t freak out at first, but had a sneaking suspicion there wouldn’t be an easy solution.  We TPA’d the line and were able to get blood return and even draw some labs.  We went home and returned a month later.  The port didn’t work – AT ALL!  Marissa had surgery the following the week and they used her port for anesthesia – it infused okay although it still wouldn’t draw.  We went home, again.  We returned a month later.  Do you see a trend here?  The port didn’t work.  This time, I came prepared, bag packed to spend the day – ready to stand my ground and demand answers and wasn’t leaving without some.  I didn’t have to try real hard.  When they tried to infuse – it wouldn’t even do that.  In fact, she screamed and the skin around the port began to blow up like a little balloon.  I figured it was either disconnected or infiltrated once again although I couldn’t figure out how either could possibly happen on a brand new port.  She had a chest x-ray – looked great, a line study – which showed the vessel was obviously occluded.  Under normal circumstances, the port would be removed and a new port implanted.  Of course, where Marissa is concerned, there is never a normal circumstance!  It was decided to perform an MRV and first of all assess the actual condition of the vessel the current port catheter resides in as well as whether there were any other vessels that could possibly accommodate a new port.  Then, depending on what the MRV showed, either an angioplasty to try and save her port or surgery to implant a new one. 

The MRV was performed last week and we quickly learned that the thrombus in her vessel was not something treatable by angioplasty – the current port is unsalvageable.  As for new sites, the radiologists have weighed in, but the jury is still out.  Or rather, the general surgeons are still out….at a conference that is.  Stay tuned.

Where I've Been

I promise to start updating more frequently (and with more pictures) very soon.  I suppose my first update should be this one, which is likely to be nothing more than a big 'ol pot full of excuses about why I've been too "busy" (everyone knows I HATE that word) to blog.  Basically it all boils down to the new job I took I couple of months ago.  Why the new job?  Why more hours?  Why a longer drive?  To answer, I have to back up a bit.  I've been with the same health care organization for just about five years and I've said it here before - I LOVE them!  I love the organization, I love the people I work with, the location of the particular clinic I work at is perfect and the benefits are awesome.  Last year I made the decision to give up my full-time position for a fill-in position and thus, gave up a phenomenal benefit package.  It was necessary at the time because of the extent and type of care that Marissa required.  The organization supported me completely and I have continued to work for them on an as needed basis, filling in and essentially setting my own hours.  We were lucky enough to be able to get a fairly decent health plan for Kevin, Esen and I paying out-of-pocket premiums, but they would not cover Marissa.  I take that back, they offered us a plan with a $10,000 annual deductible and no prescription drug coverage for her, which I politely declined.  Marissa is covered by Medical Assistance because her adoption was classified as a special needs adoption and because she is considered by the State as permanently disabled.  We are grateful for the MA, but it is much nicer to have her on group insurance coverage primary with the MA secondary. 

With the new children coming and even more medical issues to address; Marissa older, stronger, and more stable; I decided to return to work in a more permanent capacity.  I considered staying with my current employer and explored the possibility of a part-time position.  Unfortunately, staying with them would not afford us the luxury of choice when it came to health insurance coverage.  See, it is critical to me that each of our kids are covered at AFCH - aka our second home.  Marissa receives all of her care at AFCH and sees all UW doctors.  Esen has a UW pediatrician and sees some UW specialists.  Going with another health insurance plan would mean giving that up and I decided that there was no way I could do it. 

So, many months ago I began searching for the perfect job.  I wanted 20 hour weeks with inexpensive, full-coverage insurance that would allow the kids to stay at the UW.  I knew changing employers meant taking a pay cut, likely increasing my commute and starting over, but for the right insurance plan, I was willing.  Well, I found it and was so lucky to find it within one of the top health care organizations in the area.  The job itself is something totally different from what I've done before, challenging, and really enjoyable.  The people I work with are great and other than the commute, there is nothing I don't love about it. I also kept my fill-in position, so I really have the best of both worlds!

That brings us to now (and here come the excuses) - the last month, I have been training - full time.  I'm also keeping my part-time hours up at my other job.  I'm trying to manage the house, the kids' schedules, Marissa's therapy and doctor appointments, working on three adoptions from two different countries, and desperately trying to fundraise. Then, there was the stomach flu of the last week - I'll spare you any further details on that.  I also sit on the Patient Family Advisory Council for AFCH and I'm participating in several upcoming events - The Patient and Family Centered Care Conference  - where I'm sitting on a panel of 4 parents talking to over 400 participants (yes, me who can't stomach public speaking) and also this Wednesday's Child Health Advocacy Day at the Capitol.  I have an annual post placement report to write, AVON books to assemble and get out, and of course tons of stuff to do around the house.

Most days I feel like I don't know whether I'm coming or going.  I feel like I'm not being a great mom, wife, employee, volunteer, or anything else.  I kind of feel like I'm just getting by.  My 'to do' list is a million miles long and there is so much that needs to be done around the house before the kids come home.  I know it's going to get better.  November will bring a somewhat calmer schedule and I know it doesn't really matter if Kevin and the kids have to eat Mac n Cheese a few more times or if the papers lay on the counter another couple of days.  Knowing it doesn't make it any easier to tolerate, though.

So, there you have it.  That's where I've been - nowhere really.  Just working and living and getting by.  I promise to update and each of the kiddos soon. 

We Opened Court!!

FINALLY - the kids' case has been opened in the Ethiopian court.  It should've happened months ago and we should've already been docketed, but, in true Fenske form, we've hit every snafoo possible.  So, two days after H's birthday, the case has been opened.  We're still very guardedly hopeful for a court date before the end of the year and we could hear as soon as the next couple of weeks.  YAY for progress!

4 - again.

Happy Birthday to my oldest daughter  (and my husband - yes they share).  This is the fifth birthday we've had to celebrate in the past three years with the guest of honor missing.  I really hope it is the last.  I want nothing more than for all of my children to be home...where they belong.

Want to Win a $500 Gift Card?

UPDATE:  WOW - A TON OF AMAZING NEW STUFF HAS BEEN ADDED TO THIS GIVEAWAY.  HEAD OVER TO ADEYE'S BLOG TO CHECK IT OUT AND PLEASE DONATE AND ENTER!!

Beautiful Adeye over at No Greater Joy Mom has initiated a fundraiser to help bring home 40+ waiting orphans.  This woman has an amazing heart and an incredible spirit.  She dedicates her life to God and to serving those who need her help.  WE are one of the blessed families who could benefit from her current fundraiser.  All you have to do is visit this post for complete instructions.  You can contribute to our Chip in to the left sidebar or to From HIV to Home in our name in any amount over $10 and then leave a message on Adeye's blog that you did it.  You will automatically be entered for a chance to with a $500 Target Gift Card!!  Make the contribution and then share the link to Facebook or your blog and you'll be entered twice!  Good Luck!

From the Heart

I've been quiet.  It's not my nature, I know this.  My heart has been heavy.  My head has been FULL!  The weight on my shoulders almost unbearable.  I owe you an update, though, and I'm going to focus on our pending adoptions for now.   For some of you this is redundant, because I have also send this via email.  Sorry for that, my energy has been zapped.  More soon, I promise!

The purpose of this update is two fold.  A lot has happened recently with regard to our pending adoptions so I thought a detailed update might be in order.

Purpose One - Adoption Updates!!

KYRGYZSTAN: As you know, we began the process to adopt again from Kyrgyzstan in January 2008. We received Kamila's referral July 12, 2008.   For 3 years, 2 months, 17 days, we have waited, fought and prayed for her to come home! We have never given up on her. It has been a painful journey, but one we have had to take. I'm sure you would agree that no matter what happened to your children, you would never turn your backs on them. It is no different for us. The good news - finally - is that Kyrgyzstan has signed the necessary amendments to the Family Code and Parliament has passed all of the regulations into law which will allow adoptions to proceed. The bad news is that we will be required to start the process completely from scratch. Only 3 of the current 5 agencies will be allowed accreditation in Kyrgyzstan. Families who end up with the two non-accredited agencies will likely have to be "picked up" by the accredited ones. Families will have to re-do their dossiers and be "re-matched" with their children. This is a risky process, but one we have been told should go smoothly. Families will also be required to make TWO trips to Kyrgyzstan to complete their adoptions. What this boils down to, unfortunately, is not only yet a longer process, but a much more expensive one. We will need to raise at minimum $15,000 to complete her adoption.  This is merely an estimate and as is the case with any adoption, but especially this one, things could change at any minute.  We are very hopeful (cautiously) that she will arrive home in very early 2012!

ETHIOPIA: In March of this year, we committed to the adoption of two beautiful toddlers with minor medical needs from Ethiopia. They are unrelated siblings living in an orphanage in Addis Ababa. We have worked so hard to save and raise funds for their adoptions and we have been incredibly successful. Throughout this process, we have been blessed by a grant, by the generosity of many during a fundraising event we held in June, by the selfless generosity of friends and strangers, and by the ability to pick up extra shifts at work. We committed to these children knowing that it would not be an easy road, but that it would be worth it! In just a couple of weeks, we will be notified of our court hearing date. We hope that it will be in December. We will travel to Ethiopia for the court hearing and spend a few days with our new children. B, the boy, repeatedly asks the orphanage workers why people keep coming to take the babies home and why no one wants him. It breaks my heart to hear this and breaks my heart that he doesn't yet know he has a family waiting for him; a family that loves him already. No child should have to live even one day feeling unloved or unwanted, much less years of their lives. Both B and H are in desperate need of medical resources that simply cannot be offered in Ethiopia. They need to get home!! After the court hearing, we will return home and wait to be invited back to Ethiopia for Embassy clearance at which time, the children will be free to leave Ethiopia and begin their new lives here with us! Currently, we still need to raise approximately $22,000 to complete their adoptions and time is quickly running out!!

Purpose Two - On My Knees, I Humbly Ask for Your Help!!

For those of you who have stuck with me this long, thank you for continuing to read on. You are under absolutely no obligation to make any sort of donation or anything. I am reaching out as a loved one, a friend, a fellow human being who needs help. Our children need help. Some of you have already reached out to us and offered support and for that we are more grateful than you will ever know. Perhaps you know someone who might be interested in one of our fundraisers. Perhaps you or someone you know might be interested in hosting a bake sale at Church or has a youth group that needs a holiday project. Every single dollar that we can raise is an absolute miracle to us. We have so far to go and so little time to get there. Our children cannot wait.

It's not easy, especially in today's society where we are expected to be strong and self-sufficient, to admit that we need help. It's not easy or even acceptable to ask for help. I certainly never thought there'd be a time when I would be pushed to do it. But, here we are, in a position where we do need help. I have found something that is worth setting aside pride for - actually, not something, rather five little someones. There is nothing I wouldn't do for my children. So, I come to you, my heart open, my soul bared, asking for support whether it be in the form of a financial contribution, prayer, or simply forwarding this message or links to our fundraisers.

I get that the economy is terrible. I get that everyone is struggling in their own way. I get that no one really has "spare change" lying around. But, I also know that none of us is suffering as much as any child who is stuck in an orphanage. We have several ways that people can help if they feel compelled. All I ask is that you consider passing our info along to friends, family, church members, coworkers, anyone who you think might listen. Please encourage people to visit our blog, friend me on Facebook, email me, snail mail me, whatever. I would love the opportunity to educate and advocate if anyone wanted to learn more about adoption or specifically adoption of children with special needs. The Holidays are rapidly approaching and we want nothing more than the gift of our family to be whole!

Ways to Help:

Visit our blog: www.chaoticandcomfortable.blogspot.com

Tax-deductible, secure donations to: www.fromhivtohome.com click on the Network for Good icon and designate the donation for The Fenske Family OR mail to From HIV to Home, PO Box 19212, Denver CO, 80219. A tax receipt will be sent to you by mail.

Handmade Tutus: Any size, any color shipped direct to you - only $20 each! Perfect GIFTS!

AVON: http://www.youravon.com/sfenske GREAT GIFTS!

Fundraising Events: You can set up your own fundraising event at your church, school or youth group - let me know and I will be happy to help!!!!

*Pass this along to friends, family, coworkers, post links to your Blog and Facebook pages*

 

Thank you so much and God Bless!!

The Fenskes

September is Hydrocephalus Awareness Month

Kinder - What?

I thought I was ready - I really, really did.  We bought supplies, talked about it for weeks and yesterday went to orientation.  We toured school, did a few "dry runs" of drop off and pick up, met Esen's case manager, teacher, the school psychologist, and spent some quality time in his classroom.  He seemed very excited and very open to the transition.

Today, we were in the drop off line of cars (about the fourth back) and Esen decided that "Mama, you should probably walk me in, today."  I pulled out of the line, parked and we walked up to the drop off door where the outside TA was waiting to shuttle kids into the Gym.  We started talking to her about the process so he'd be ready for next week.  I had my camera in hand so I could get some pictures of him in front of school and walking off into school.  Then, his buddy arrived and they RAN OFF into school together.  No tearful goodbye, no pictures, nothing.  I guess I have to be happy that he's well adjusted and confident, right?

His first day went really well.  He was happy and exhausted!  I absolutely cannot believe he is off to school already.  It really doesn't seem possible.

Heading to Orientation

Testing out his seat

Ready to learn.....I think?

First day as a Kindergartner

Special "First Day" after school snack

It's a sick, twisted world when money is the only thing that stands between a mother and her children; when money is the only thing that stands between children having a life and not having one. 

Sad.

Sick.

Devastated.

Defeated.

iMarissa

All of us are born for a reason, but all of us don't discover why. Success in life has nothing to do with what you gain in life or accomplish for yourself. It's what you do for others.    ~Danny Thomas

Many months back, I made an announcement here that Marissa was named as one of 40 recipients of an iPad through a 'contest' hosted by another blog.  Without drudging up all of the ugliness that has ensued over the past several months surrounding this 'contest', I'll just say that the promised iPad was never received.  I have no idea the real circumstances and although I have my own personal feelings and suspicions on the subject, I'll keep them to myself because I am no more qualified to act as judge and jury than anyone else.

Anyway, back to the purpose of this post.  Some other contest 'winners' decided to take it upon themselves to right some wrongs and single-handedly restore the faith of the special needs community as a whole and created Mission iPossible.    This group of folks is truly amazing and took on this task with nothing to gain for themselves.  They had no idea how they were going to do it or how long it would take, but decided that their mission was to get an iPad into the hands of every kid who was promised one and whose family still wanted to proceed.  Selfless - yes!  Compassionate - yes!  Crazy - totally!  Ken, Heather, Maureen and Darcy have given birth to something big and I don't see it ending with these 20 iPads.  Recently, they have also partnered with The Gwendolyn Strong Foundation, another incredible organization dedicated to improving the lives of others.

Honestly, I didn't expect to receive an iPad for Marissa, at least not for a very long time.  Not because I didn't trust Ken and crew.  I just couldn't imagine four people getting together on a whim and making this happen.  Heck, I know how hard it is to raise money.  I know how hard it is to try and convince people that what you're doing is worthwhile and important.  It's nearly impossible.  Truthfully, being a small part of this mission (as a recipient), watching iPads land in the hands of deserving children has meant so much more than getting something.  It has given me a renewed faith in humanity.  It has reminded me that goodness still exists in the world.  TRUE goodness - you know, people who not only talk the talk, but actually walk the walk!  Those people are hard to find nowadays.  I have 'met' some truly amazing new friends through this experience.

Well, this week, it was Marissa's turn!   I've pretty much been speechless since I got the email from Ken that funds were secured and Marissa's iPad was due to be purchased.  We all know speechless is something that I'm usually not.  It's "just" a computer, right?  To us, it's a door opened for ALL of our kids.  When I think of what this piece of technology might be able to provide for Marissa, Esen, Kamila, B & H with all of their unique needs; it brings tears to my eyes.  This is not something we would ever have been able to justify spending money on so it is truly an incredible gift!  I will admit, I'm a wee bit frightened of it - after all, we still live in the land of the free flip phones and yes, there is still a walkman hanging around our house.  No, we don't have an iPod, MP3, XBox, or any other type of gadget; heck we just finally bought a laptop less than a year ago!  But, we're eager learners and I'm pumped to find an 'app' that might just do the laundry for me!

So, on to the million dollar question - how do you properly thank someone who has changed the lives of your children for the better?  I don't have the answer yet, but knowing the Mission iPossible team, I think, for now anyway, this will suffice just fine: