Saying Goodbye

It is still hard to take in the reality of the things taking place.  On Tuesday, Dec. 27 Limaris Santiago went to be with her Savior, Healer and closest Friend.  She passed away around 4:10 as we were all at the hospital.  

We grieve the monumental loss that we are left with - a warm and caring sister, a fun-loving and humorous friend, and a hard-working, patient and ever-loving mother to three beautiful children.  Her children are taking it in slowly and in different ways due to their ages.  I think we have a long road of healing ahead, but we are confident that the same Jesus that is holding Limaris now is the same Jesus that will be near each one of these children as they grow. 

As we grieve our loss, it is true that we are also rejoicing that she is cancer free now and that she is feeling no pain, no sickness, no pic-lines, no fatigue.  She is finally face to face with her Creator, who she worships and loves.  She had full faith that this Jesus came to rescue her from her sins and that through grace he forgave her and adopted her into His family.  She is at her true home now.

Our family is overwhelmed by the love and support that has been shown to us from many different people.  We are grateful for all of your prayers.

There will be a viewing and celebration service for her.  Here are the details:

The viewing will take place at 10:00 am 

and the celebration service will be at 11:00 am

Friday, December 30

Cornerstone Community Church 

3167 Frankford Ave

Phila, PA 19134

 

Birthday Visit

Last night we got to celebrate Limaris' birthday with her in the hospital!  She had asked for chocolate cake with chocolate icing, and while she couldn't eat it - I know she was happy the kids got to enjoy it!

Jonerik brought his guitar and worshipped with her for a little while.

Our visit with her was brief but it was full of smiles and fun.  Limaris used Carlos (the cute pig above) to wave and do a little dance.  The kids loved it.

My parents are in town and staying with us right now at the our friends home (downstairs/next door).  We are making Christmas memories by singing and dancing to Christmas music, wrapping presents and making Christmas cookies.  Despite our heavy hearts, there is a spirit of excitement in the air that the children bring and it is a joy to help them laugh and smile.

We are trying to make Christmas as normal as possible for them and to make some new positive memories in the mix.  

Limaris' birthday

Today Limaris turns 29. 

Last night Jonerik and I stayed with her at the hospital overnight while my parents stayed with the kids at our house.  We did get some sleep and were grateful to be there as doctors came around and when she was awake and aware of our presence.  We had taken our ipod and a deck in so she could have some music playing.

Today Limaris is about the same - healthwise.  We were hoping and needing to see some major improvement today to move forward and while she is not getting any worse...she is also not getting better.  The pneumonia is still a problem - and they are almost certain that the cancer that had recently moved into her atrium (the muscle of the heart, not just the tissue where it started) is now affecting the lungs.  She is sedated because of the tube down her throat but she comes in and out and sometimes is able to write, motion, or mouth what she is thinking.

Because today is her birthday and Christmas is on Sunday, we are putting all conversations about next steps on hold until Monday afternoon.  We have a plan, but we are praying that God makes things unmistakably clear and she is able to tell us exactly what she wants to happen. 

We have seen in undeniable ways that God has prepared us for many life events in the past and we pray that this circumstance will follow that pattern as well. We already see God moving in our own lives, our family, and in the friendships that have been made prior to these struggles that are encouraging and supportive. 

This situation is not all about us.  It is so vast and widespread.  Limaris is deeply loved by so many people and because she is such a giving, caring woman of God this is hard for so many.  And ultimately it is about God and bringing glory to His name.  Yes we have moments of asking Him hard questions, pleading and wrestling over and over with Him.  That is part of what it means to have a personal relationship with an infinite God that we don't understand completely.  But in the end we know that His will is what we surrender too and that He is a good God that loves His children more than we ever could.

Please continue to pray for God to move in miraculous ways.  Pray for her precious children who have a difficult road ahead.  Pray that we will have wisdom that can only come from the Holy Spirit.  That His peace, that surpasses all understanding, will guard our hearts and minds in Christ Jesus (Phil. 4:7)  We have felt His presence over the past week.

Limaris is still loving Jesus and knows that her peace comes from Him. 

Thank you again for your prayers, your love, and your support.

Check back in...

This update will be brief because it is from my (Emilys) phone.

As of today Limaris' health has not changed drastically. She is still strong in spirit and her heart is full of love.

The initial plan was to re-evaluate next steps on Friday. This has now been shifted to Monday. Her birthday is tomorrow and with Christmas on Sunday she has asked that we keep this phase going until Monday. We are all peaceful in that decision.

I will let you know more as we go along these next couple of days.

We brought all the kids for a visit last night and it went as well as it could have gone. A social worker helped us out and that was great.

She knows that lots of people are praying for her.

Tuesday Night Update

First I want to express our deep gratitude for all of your supporting emails, calls, texts, and most of all prayers.  This is a very difficult time for our family as we do not know what to expect.
Here is the latest update:

At 11:00 this morning it was determined that Limaris needed to be intubated (a tube was put down her throat that would help her breath).  This was not the way we wanted things to go, but it was necessary.  The average person takes about 10-14 breaths per minute, she was taking 40-50 small breaths.  She fought through this up until this morning and then her body started to get tired.  Before she was at a crisis level of fatigue we all agreed that she should have the procedure done.  The procedure itself was very risky because her heart is not strong and the didn't know how her body would handle it, but she pulled through fine and they got her stablized. 

She is currently sedated so her body can relax, regain some strength, and so she doesn't fight the tube.  The ventilator is breathing for her at this point, which again will allow her body and muscles to recooperate. 

They anticipate that this scenario could go one of two ways, and the odds are unknown.

1.  She could start to show some improvement, the antibiotics could fight the pneumonia to the point where she is able to start breathing on her own again and she could be weened off of the ventilator.  We would then make plans to keep her stable and would go back to fighting the cancer.  In this case we would hope that she wold get to the point where she could return home to her children and we would make living arrangements to accomodate her needs.

2.  She does not show any signs of improvement.  After 72 of no improvement we will move to a phase of making some difficult decisions.  This is pretty much the last option of getting her back on track, so if she is not able to breath on her own we will need to make a different plan.  One that would keep her comfortable and at peace as she works to live the rest of her life to its fullest.

Jonerik and I are taking all of this in slowly as it comes.  We are trying to be strong at the right times and to express our heart's emotions at the right times.

Limaris' birthday is on Friday, the day that some big decisions may need to be made.  We are praying for clarity and wisdom in knowing God's will.

Several people have asked how they can help....honestly, I don't know.  We need your prayers. 
We have faith that God hears our prayers and answers them. We need a strength, peace, and endurance during this time that we have never needed before.  We do have some family and some close friends who are helping us with the logistics of scheduling things and some practical needs.

Visit this site again for more updates.  I will try to keep it updated as much as I can.  This is especially helpful so we don't need to repeat all of this over and over to people.

Please Pray

We are asking that you pray with us as things have taken a turn for the worse over the past few days.

Limaris was taken to the hospital yesterday and it was concluded that she has pneumonia in both lungs and it is possible that the cancer is continuing to spread.  She is currently in the ICU so they can monitor her more closely over night.

She is struggling with her oxygen levels and her main goal right now is to be able to breath on her own without her oxygen levels dropping.

I realize this is a brief update, I will post more as they come.  Please pray for her healing and restoration as well as praying for our family as we ache to help.

"In the same way, the Spirit helps us in our weakness.  We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express.  And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will."  - Romans 8:26-27

Two Updates for the Price of One!

The last post that was written was on the benefit for Limaris.  We had a great turn out and we had a great night with Limaris, the kids, and lots of friends and family.  A good amount of money was donated for her medical expenses, Christmas shopping, and life expenses.  She was so touched by the effort and love that went into this event.  A couple of doctors that she worked for and even the CEO of Rothman Institute was there to support her.  Here are a few pictures:

A big thank you goes out to all of our family and friends who came out to show some love and support and to those who weren't able to come but shared their love as well.

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I also want to share a special opportunity that Jonerik and I had recently.  The MOPS (Mothers of Preschoolers) group at Bible Fellowship Church contacted us and told us they wanted to "adopt" our family this Christmas.  We went to their last meeting and shared more about who we were, what our ministry with Cornerstone was about and our family situation.  

I was able to share a little more on what God was teaching me through this process and to encourage these mothers that whatever task they are doing can be done to the glory of God, even if it simply the 5th load of laundry or washing the dishes yet again.

They had collected gifts for each of the kids, Jonerik's sisters, and a couple for our house.  We had mentioned somewhere in the process that we were looking for a good video camera.  The president of the group came up to us after the meeting and said there was a camera a the church that was donated and we were welcome to have it.  I was so excited because this will help us convey what our ministry is about and to capture fun family memories.

THANK YOU to the MOPS groups!

Benefit for Limaris

Some friends and former co-workers of Limaris have organized an amazing benefit for Limaris!  It will include a delicious buffet, drinks, a DJ, a RAFFLE!

They have truly been amazing in pulling this together, getting donations, and using their creativity to have a fun and positive night to show Limaris that she is loved and supported.

If you are interested in attending, let me know so I can get you tickets.

November in a Nutshell

Here we are in November, and Fall is in full swing.  I always notice the (very small amount of) trees in our neighborhood the most in the Spring and the Fall.  In the Summer and Winter, for some reason, they just blend in.

We have been busy with fun events like a Fall Festival at a friend's farm in the country....

Jonerik went on a fields trip with Jonerik to a pumpkin patch....



We went trick-or-treating with some friends that live North of the city.  Yes we got way too much candy and we are still deciding what to do with it.  We were not as prepared for this as we could have been =)  Send me your ideas on what you do with an over-abundace of halloween candy and how you distribute/give it away. 

As you can see the kids have been with us a lot this Fall.  We are having fun making new memories and creating possible traditions.  Limaris is currently in the hospital for another round of chemo and we are praying she will be out of the hospital for Thanksgiving.

Please continue to be in prayer for us as we support our family. 

Pray for strength and healing for Limaris.

I will post more on our ministry and new and exciting things happening there soon.  We are also working on getting our newsletter out in the coming weeks.  If you are not on our mailing list/email list and would like to me - send your contact info to emily.santiago109@gmail.com

October what?

Oh how fast this month is going!

Our house (aka 2 BR apartment) has been a whirlwind of activity.  We have had the kids here much of September and a good portion of October as well.  When Limaris is home and feeling good, they are with her and when Ruby (Jonerik's other sister) is not working her kids usually stay with her - there is not pattern to scenario.  Someone asked me today how we do what we do, and I just laughed.   I really have no idea how, but it really does all work out. 

Some keys to keeping my sanity:

-I finally bought and use a good old-fashioned calendar which is now filled and color coded!

-Noting ways to feed lots of people with little notice - keep cooked pasta on hand in the fridge...have more meat ready to thaw and cook-it can be stored for another meal if it turns out to be just the 2 of us and we have extra - I am always open to suggestions!

-My coffee supply is fully stocked =)

-I try to keep my Bible in the center of our house (the shelf in the kitchen)...and open!

-Prayer, prayer, singing, prayer, singing, and more prayer.
(I can usually gauge the level of happiness vs. stress in our home by the amount of singing going on... when things are going well our life is typically a musical)

Limaris has another test tomorrow that will help us know where things are at with her cancer.  She will most likely go to the hospital again for treatment on Monday and will be in for about a week. 

When the kids off  from school recently, we went to one of our new favorite (very small) parks for a picnic lunch.  It is settled right under one of our bridges and isn't too far from our home. 

Poem by a friend...

A friend of ours approached me recently and asked me to share this poem in hopes that it may help someone else struggling in a hard place:

Antifreeze is to cool an engine down.

I drank antifreeze down cup after cup.

Then went to sleep with antifreeze running through me.

My husband died.
I lived!

A true miracle of God.

I can speak!
I can see!
I can hear!

I can actually write this down due to God alone.

I live because he chose for me to live.

Why he chose to intervene?
I know not why.

It goes beyond understanding and knowledge.

I am walking with the Lord now.

God is the only one who can truly love us.

He can give us a peace beyond understanding.

He can reach through pain that no one else can get too!

To invite him into your life changes your life.

It brings breath to life.

Why he chose me is a mystery to me!

Many choose suicide as a way out.

My own father chose to shoot himself.

The cost of suicide is a high price!
It’s a ticket straight to hell not death or rest!

So before you try to kill yourself why not invite the Lord your personal savior into your life!

-Anonymous Friend

Bridge of Hope LCC

Before I (Emily) came to Philly and married Jonerik, I worked for a non-profit organization called Bridge of Hope Lancaster and Chester Counties.  The mission of Bridge of Hope LCC is:

"to end and prevent homelessness for women and children with the help of trained mentoring teams within congregations. Single mothers achieve permanent housing and financial self‑sufficiency through employment and attain stability and enhanced self‑esteem through ongoing mentoring friendships. Our goal is to exemplify Christ’s love and to promote physical, emotional, social, and spiritual wholeness."

Does that sounds amazing?  Because it is!  This organization's goal is to assist single mothers who are facing homelessness and to do through the church and through trained professionals.

My role with Bridge of Hope LCC in Lancaster was direct work with the mom's in the program.  I met with women on regular basis and we worked through budgeting, life skills, finding resources, more education, ect.  I did this for 3 1/2 years.

When we got married, I commuted to Coatesville part-time to work in the Chester County office as the Program Administrative Assistant.  I did this for about 6 months.

My current role with Bridge of Hope LCC is "Program Communications Coordinator".  I write for a few of their publications, handle press releases and do other communications work.  The benefit of this role in our current situation is that I can do 95% of this work from home (the closest office is in Chester County)!

Check out the website to learn more:  Bridge of Hope LCC

We are also on Facebook and soon we will be on Twitter!

If you aren't on the mailing list and want to be, just let me know!  It will be well worth your time.

Fall Updates

A lot has been going on this month.  I always heard mothers speak about how crazy September was and how busy they were as school started, but I never shared in the beginning of school craziness until this year.  Now I have a better understanding...I've got you!

Due to Limaris' health, treatment, and appointments, we have had the kids staying with us for a good portion of the month.  We are SO grateful for our mini-van!  Emily got a part-time job that allows her to work from home for an organization that she loves (more to come on that soon!) and that has been a big blessing in many ways as well.

Through A LOT of answered prayers, the kids are attending the schools we were hoping for (ok our first hope was to get them into a good charter school, but that wasn't realistic for this year).  Gigi is in a headstart program M-F (it's growing on her).  Dante, Bubba, and Damian are at the schools they attended last year (2 different elementary schools close to us) and Lymary...

is enrolled in PA Cyber!

If you are not familiar with PA Cyber, they give you all the supplies you need (and more) for FREE including a computer and printer.  She has 4 virtual classes with real teachers and classmates as well as two self-paced classes.  She is loving it so far!

We decided to pursue this for her after a lot of prayer and we are excited about how it is working out.  She is in 7th grade this year and we wanted to offer her an alternative to the public middle school that she attended last year.

As crazy as this process has been we consider it a huge privilege to have the kids with us.  We would obviously choose full health for Jonerik's sister and for the kids to be with her all the time, but this is the plan God has laid out for us as of today and we choose to be joyful.  I heard a quote this past week that says:

"When you go through something hard

it will either make you better or it will make you bitter."

We are praying that God will continue to make us better through this.



Exciting News!

Great news!!!  For all of you who have been following our updates and emails you know that we have been asking the Lord for some specific things this summer.  One of our desires was to make our home more kid-friendly and a welcome space for our nieces and nephews that are here frequently.  God blessed us in a big way and we are so thankful.

Another request that we've had is to buy a minivan that would better suit our families needs.  When we were transporting 5 kids, our Ford Focus just didn't make the cut.  To safely and legally take the kids places we had to get creative.  God provided money for us to buy a minivan and this week we found one that fit our needs!  Here she is:

This is not the actual van we bought, but it is a picture of the same model.  I don't have a picture of the outside of our van yet, so this is as close as I could get.  Here is a picture of the inside:

That's right, we broke her in this past weekend when our family went to Camp Greenlane with our church for a retreat!  We had a blast all weekend out in nature with another partner church.  From what I heard there were over 100 people from Cornerstone at the retreat for at least part of the weekend!!

There were a lot of outdoor activities!

This was our cabin (there were two more sets of bunk beds)

There was lots of down time to just catch up.

And Dante's birthday was on Sunday!!  Of course we had to embarrass him with a cake an loud singing!

For more pictures go to:

Camp Greenlane

Spreading the Love

This past week a group of fantastic teens and adults came to Philly all the way from Faith Fellowship Alliance Church in Butler, PA to serve God and love on people.  They partnered with some friends of ours, the Varaso family to work on an abandoned lot that they are transforming into a place to host, serve, and play.  They also interacted with people in our neighborhood - praying over them, giving out food and socks, and playing games with kids.

Here are some pictures that they captured of our neighborhood:

We had a great time partnering with them to spread the love of Jesus to our neighborhood and to the streets of Kensington.  We were blessed by their encouraging attitudes and their boldness to share Christ.  We were led to remember the goodness of God and to see Him working in the midst of so much struggle around us.

They did activities with kids like tye-dyed t-shirts, football, cupcake decorating, and games!  They talked and listened to the people around them - offering to pray with them and they were able to meet some practical needs like food and other items they were able to give out.

Jonerik was refreshed through leading them in some worship and prayer this week.  They took time each day to seek the Lord's leading and to praise Him for all He did.  Music is always a great way for us to connect and this was no exception.  We enjoyed spending time with the group and hearing more of their stories.

This was not a ministry opportunity through Cornerstone Community, but it came at a great time during the summer when we had fewer responsibilities.  Thanks to all of the team members that came to Philly and to the Varaso's for a great week! 

Beautiful Chaos

As I sat down to update our blog this morning I was interrupted with two requests to come join the fun in the back bedroom.  As much as I was wanted to stay on task I couldn't resist the laughing and giggling that was being heard in the distance.  I stuck my head in the door and found 5 little ones and my sweet husband in an all out pillow/stuffed animal fight!!

This is one example of how our lives have changed dramatically in the past few months.  Changes like finding baby shampoo in the shower, a booster seat at our table, mini clothes in the laundry basket, and the timer on our microwave is getting more of a workout now that the kids take turns on the computer.

Jonerik's sister is scheduled to come home today from a week's stay at the hospital.  We have had all five kids most of the week (we were down to 2 for one night) and we are not sure how long or how many we will have over the weekend and next week as she comes home and works to bounce back from her treatment.  A brief update, she still has a mass on her heart and that has now spread to the wall of her lung. Her lung is still filling with fluid regularly and she has a nurse help drain that every few days.

This summer we have watched the kids a lot and while we are honestly LOVING it, it has stretched us in new ways.  I have never been in a parenting role before and while I have worked with kids a good deal and led lots of activities - I haven't had this role of constant modeling, teaching, correcting, feeding, and cleaning.

God has been gracious to us and has provided for us in so many ways.  One way He provided for us was by gifting us (through others) with beds for all of the kids in our second bedroom.  No, it's not an ideal long-term solution, but it is SO great to be able to tell some of the kids to go play in the back room and not have to worry about breakable things I used to store back there.  Our storage is mostly on some new shelves by our front door which works great!

So it's ok for the kids to have a pillow fight with Jonerik back there and I can rest easy that it is their space for play and sleep and reading.

Another fantastic new addition to our apartment is a paved backyard!!!  Our housing situation is a little hard to explain to people who haven't been here or don't know our living situation, but we rent our apt. from our neighbor's (and fellow staff members) parents.  We share their backyard and this past week they had a team help them pave it!  This week it has become our own little water park/skate area/sidewalk chalk canvas.  It is so great to be able to take the kids outside to play while something is cooking or we just need some fresh air.

Some friends from the church were I grew up generously sent some clothing for the kids.  This was one of Gigi's favorites (all of the dresses fit into that category!) which she loves and asked if me if she could wear it to VBS this week!  Thank goodness for the "out of sight, out of mind" concept!!

We are so grateful for these ways that God is walking through this journey with us.  It is still so hard to be strong.  To hear a little 4 year voice ask God to heal her mom and ask that she will be done with cancer.  But through it all it's like He is holding my hand and whispering, "I've got this.  Trust me."


Thank you for your prayers and for your love as we follow one day at a time.

Where to begin...

A lot has happened in the past month and there no good way to fill you in on all of it, but here are some awesome highlights and a few pictures!





- Cornerstone's Annual Block Party - where we host our neighborhood and give out free food, kids games, inflatable games, face paint, a t-shirt giveaway, and we preach the good news of Christ.  Jonerik got to take turns preaching in Spanish while another pastor preached in English.  We had a great turn out and despite the weather predictions, we had beautiful weather!  They predicted thunderstorms beginning at 6:00 and I looked at my watch at exactly 6:00 as the sun broke through the clouds (there is a picture in the slideshow).

- One of our nephews graduated from Kindergarten!

- Beach Vacation - Emily's family goes to the beach for a week every year and we were able to take 4 of the kid with us this year.  We had a blast together.

- Our church had a swim party at a Christian school outside of the city.

- Jonerik and I help kids from our church get to a summer camp each summer and this past week we took 7 kids up to camp.  This next week we will be take more kids to camp.  They loved learning new songs, experiencing new things like the zip line and giant slip and slide, and learning more about God.

- We have also had lots of great times with our 5 nieces and nephews in our apartment and at other church events like VBS' and a basketball camp.

We are half way through the summer and it has proved incredibly busy and full of events.  God has been gracious and give Him all the praise and glory for each day.  Every tear.  Every smile.  Every laugh.  Every correction. Every goofy face.  It is all for Him.

If you want to see the pictures in a web album with captions go here:

Summer 2011

Crazy Ride!

God brought me a sweet encouragement recently and it is a great testimony to how God's plans are not our plans and His ways are not our ways - they are much, much better!

The story begins in 1998 - 13 years ago.  I was in jr. high and was going on an adventure with our youth group.  For the first time our church got connected with an event called JAMS.  This is where jr. high youth groups come to PBU and are trained in how to share the gospel with kids.  They stay there all weekend and it is more like a retreat with a missions trip added.  On Saturday kids are bussed in from the city of Philly and they have an interactive day, being partnered with a jr. higher - there are games, puppets, singing, etc.

The little girl I was partnered with that weekend was a little blonde girl from an area of Philly I had never heard of - KENSINGTON.  She prayed with me to accept Christ at the end of the day and scribbled her address on a corner of pink paper that I had.  She had written the city name as Kensington (which is why I remember this so vividly).  

I wanted to write to her and follow up but at the time I had no idea how to write to her without a zip code and it took me a while to track down the info needed.

>> Fast forward a few years to the summer of 2001.  I signed on to work at a camp called Victory Valley Camp that summer before my Senior year of high school.  When I got to camp, I met lots of fun people including two guys named Jeremy and Jonerik.  (Does that name sound familiar?)  When I was talking to this kid named Jonerik I learned he was from KENSINGTON!  I told him about the little girl and he explained that it was the neighborhood that was called Kensington (I was still a country girl).  We became good friends at camp and I didn't know when I would see him after the summer was over, but we kept in touch through Instant Messaging.

I soon learned that Jonerik was going to Lancaster Bible College - where I was going!

>>Fast forward another 5 years to 2007 - Jonerik and I had kept in touch after college and that Fall we started dating.  I had no idea what a beautiful thing that would turn into, just simple hopes and dreams.

>>Fast Forward 3 1/2 years to 2011 - Jonerik and I are married and where are we living?  KENSINGTON!

Why am I writing about all of this?

Because in May, just a few weeks ago, I had the privilege of helping take a group of children (including my 5 nieces and nephews) from Cornerstone to that very same event at PBU - 13 years later.  Our church takes kids every year and the little girl that I was partnered with 13 years earlier was a little girl who most likely came with our Cornerstone.  Sunbury Bible Church still takes a group of jr .higher to JAMS every year and this year was no exception.  Kids that were just preschoolers and toddlers when I last saw them are now in jr. high and they are sharing the gospel with our kids!

The other fun piece to the story is that one of the couples that worked with the jr. high youth group from SBC when we went to JAMS are still working with the youth group and they were there!  They have known me since I was born, but it is a fun circle to see how God has used them in my life and continues to use them in a ripple effect to now reach kids from Kensington!

The jr. high group from Sunbury Bible

Here are few more pictures from Kid's Day this year -