Motivational Mondays - Maripili Araya's Journey

I 'met'  Maripili Araya within days or maybe weeks of her TTTS journey coming to a tragic ending.  Right from the first moment we met I knew that she was a momma who wasn't 'going down without a fight'.  Her attitude amazed me.  She had just lost her boys and was saddened that there seemed to be nothing that could be done in her country to save babies who experience TTTS...but she wasn't angered so much as she was empowered.  She began, right away, asking for ideas and help to get more awareness to her country but moreover to get something in place so the next time a patient presented with signs of TTTS their case would be managed better, treatment would be available, hope would be found.
Here is her story....

I was 36 years old when my husband and I decided we wanted one more child. It didn’t take us long to get pregnant, and we were the happiest couple in the world.

I started spotting early on, so I was on bed rest for the first 12 weeks because of that. We knew at week 5 that we were having twins and we considered ourselves so lucky and blessed. Bed rest? Who cares I thought, I can handle this! Then at 15 weeks we found out they were boys, the same day we found out there was a size difference and could be related to TTTS. My Dr then said not to worry too much so I didn’t.

We picked out names, it took us a while but finally we both agreed on each name! Noah and Gael. My husband and I were beyond excited about meeting them face to face! Pain came and went every day all of a sudden, the most pain I have ever been in. Dr discovered I had a fibroid that was degenerating, and eventually the pain was so strong that he suggested terminating the pregnancy because of the fibroid. I am not one to judge termination, and I believe each case is unique and incomparable, but under my circumstances I ignored his suggestion and was even offended by it. There was nothing wrong with either of the babies or with me, it was just pain, I could suck it up. But it was so bad I couldn’t even focus on the possible TTTS for weeks. Then the size difference became a worrying 30% and we could not ignore it any more. My OBGYN then said that there were no treatments available for TTTS in Costa Rica. I asked what was I supposed to do?

“Just wait.” he said “There’s nothing else you can do.”

I went home and read everything I could about the illness, I kept reading that there were treatments for it, and felt so frustrated to be so far from the places that offered them. I decided I needed a second opinion, so I found a wonderful MFM, Dr. Joaquin Bustillos, who explained that he was the only one here that was trained (in Spain) to do laser surgery but that there was no machine in Costa Rica. Frustration and sadness again… He said my one option was amniocentesis so we would do that when necessary, I figured something was better than nothing. My plan was to keep those boys in there as long as I could and I kept reading so many survival stories in the internet and not so many losses, so I figured the odds were in my favor.

After more than 20 weeks on bed rest, the horrible fibroid pain and nights of endless tears from worry and fear, I did my first amnio on January 3d 2012. I was almost 27 weeks pregnant. I figured if I had survived all that pain and the boys had held on for that long, I was just a step away from meeting them! I entered a public hospital to get the treatment. Babies were looking good, and they insisted I stay so that on January 5^th they could do another amnio it was just 2 days later… plus!! “if I was at home and anything happened no one would know it was happening” So I stayed THERE, in what I would later nickname: “HELL” because of what I went through in those 3 days.

They did so many tests on me, checked my babies heartbeats with Doppler machines but NO ultrasounds, an ultrasound would have changed a whole family’s story.

 Two days later on January 5^th, I was supposed to get a second amnio, the Dr. began the procedure with an ultrasound, and that was the moment that changed our whole lives forever.

After a thorough examination Dr. looked serious and I knew something was wrong, he said Noah was not going to make it, but he was being polite, I later learned he had already passed. He said Gael had only a 50% chance of surviving and that I had to go to an emergency c-section immediately. I started shaking and crying and screaming, I had never felt so alone, so abandoned. How could this happen while I was under the careful watch of nurses for the past 2 days? I was hysterical, grateful when they completely put me under for the surgery.

When I woke up I kept wishing it had all been a nightmare. And I guess it was, it was my own personal brand new forever-nightmare. I asked about Noah and they confirmed he was dead, then I asked about Gael and they said he was not doing too well in the NICU.

The whole time I was alone because in CR you cannot have your family stay with you while you are in a public hospital, you can see them only one hour per day. So I called my husband after the ultrasound and he came right away but I had not seen him yet.

I wept in his arms.

I wanted to die.

I could not believe what had happened in a matter of hours.

I felt cheated, and in complete and utter shock.

I wanted to die.

But Gael was still here, as is our beautiful 15 year old daughter Eva, so I knew I had to survive this somehow. I went to see Gael in the NICU and he looked so motionless, I had no idea that that would be the last moment I would spend with him while he was still alive.

I did not hold him.

I barely touched him.

I regret that 100%.

I wish he would have died in my arms, where he was supposed to be.

Not alone in a NICU.

He lived for 12 hours and then joined Noah in heaven. Noah, whom I was never offered to see or hold in the hospital. The day of the funeral the pastor suggested I see them both in their casket and say my goodbyes. I am, to this day, so grateful for that advice.

I was in such a state of shock… Then coming home was part II of the nightmare.

Seeing their room full of things they would never get to use, feeling the milk in my breasts, all those flowers in my house and my empty arms.

My hollow heart.

I cried day and night. Words fall short when I try to describe the months that followed so I won’t even try.

At every Dr’s appointment I insisted on the same recurring theme… how can there be no laser machine here? I decided this had to change, for the women and babies to come, for me, for Noah and Gael. We searched high and low for ways to fund a machine. I told everyone I knew about the fact that the laser machine here was inexistent. We started finding out if other laser machines in CR could work, or even if we could build a home made one. Nothing worked, but my Dr. was determined and so was I.

One year, one month and 16 days, that’s how long it took.

My Dr. Joaquin Bustillos was finally lead to a machine that seemed like it could work so he rented it and decided to do the first laser surgery for TTTS on twins in Central America, on February 21^st 2013 which just happened to be my 38^th birthday!!! It was the best gift I could have received! AND it was successful!! Two baby girls now had a better chance at living because my Dr and I, amongst other awesome people including some other doctors and TTTS parents, had decided to fight this awful disease in CR on the day my boys went to heaven.

Bittersweet.

Today: We finally have a machine for private use in a clinic, still need to find one for public use to make it accessible for everyone, even in THAT hospital (“Hell”) But we are so happy it has begun! Quite a start too, my Dr. did the kindest, most beautiful gesture ever when he asked me if he could name the Fetal Therapy Center in the private clinic after my boys.

Soon we will be inaugurating the first of its kind in Central America: The Noah and Gael Fetal Therapy Center.

Bittersweet.

I don’t think everything happens for a reason, I believe I will never find a reason for losing our two sons. What I can find is purpose for their short lives and meaning for their being so as to keep celebrating their short, but life-changing presence in this world, until we meet again.

Maripili Araya, mother of twins in heaven

Surgeons Dr. Joaquin Bustillos and Dr. Ronald Salazar during the first TTTS laser ablation surgery in Central America, done on February 21^st 2013.

Love is NOT a feeling

Right now our pastor is doing a series based on Guardrails by Andy Stanley.  

Guardrails is a series that basically shows you the importance of setting up boundaries, of protecting yourself from crossing a point and looking back later with regret, of not stopping yourself soon enough, getting too close to temptation and then living with the consequences of stepping over the line. 

Anyway, two weeks ago and this past week Pastor Jeff spoke about the guardrails needed around marriages, around couples.  It gave me lots to think about, most that doesn’t really relate to what I normally write about here but what he did say that relates here, that I want to reflect on here is that love is not a feeling.

Wow… it’s not???  I sure thought it was.  I thought that love was something I felt, that I needed to feel in order to experience life to the fullest.  It’s not a feeling ? It’s not an emotion?  Most of the world would disagree.  Ask any ’lovestruck’ young adult , ok any young female, LOL, early on in a relationship and you will probably get an enthusiastic answer filled with  the affirmation of how wonderful it is to ‘be in love’ and ‘how amazing they feel’…might even be enough sweetness in the statement to cause you to go into sugar shock. Ask anyone who has been in a relationship or married for a while though and  the answer may not be quite that certain, quite that positive.  Most will quickly tell you that yes love includes emotions but not exactly the emotions people always associate with the common understanding of love. Yes, most certainly emotion, feeling, plays a big part in what we call love but is it all there is? Do we even realize the forms of love that have been spoken about since biblical times?  Do we remotely understand the ‘love’ God built into each one of us….

Here is what I found on ‘about.com’

Eros is the physical, sensual love between a husband and wife. Although this Greek term does not appear in the bible, eros, or erotic love, is portrayed in the Old Testament book, The Song of Solomon. God is very clear in his Word. Sex outside of marriage is forbidden.

God created humans male and female and instituted marriage in the Garden of Eden. Within marriage, sex is used for emotional and spiritual bonding and for reproduction.

The Apostle Paul noted that it is wise for people to marry to fulfill their godly desire for this type of love:

Now to the unmarried and the widows I say: It is good for them to stay unmarried, as I do. But if they cannot control themselves, they should marry, for it is better to marry than to burn with passion. (1 Corinthians 7:8-9, NIV)

Storge is family love, the bond among mothers, fathers, sisters and brothers. Storge is the natural love and affection of a parent for their child.

As with eros, this Greek term does not appear in the Bible. However, many examples of family love are found in Scripture, such as the love and mutual protection among Noah and his wife, their sons and daughters-in-law in Genesis; the love of Jacob for his sons; and the strong love the sisters Martha and Mary in the gospels had for their brother Lazarus.

The family was a vital part of ancient Jewish culture. In the Ten Commandments, God charges his people to:

Honor your father and your mother, so that you may live long in the land the LORD your God is giving you. (Exodus 20:12, NIV)

Philia means close friendship or brotherly love in Greek. It is one of the four types of love in the Bible. It is the root of the name of the ‘city of brotherly love’, Philadelphia.  Philia and other forms of this Greek noun are found throughout the New Testament. Christians are frequently exhorted to love their fellow Christians:

Love one another with brotherly affection. Outdo one another in showing honor. (Romans 12:10 ESV)

Agape is selfless, sacrificial, unconditional love, the highest of the four types of love in the Bible.  This Greek word and variations of it are found throughout the New Testament. Agape perfectly describes the kind of love Jesus Christ has for his Father and for his followers:

Whoever has my commands and keeps them is the one who loves me. The one who loves me will be loved by my Father, and I too will love them and show myself to them. (John 14:21, NIV) 

And the more I thought about the various types of love and Pastor Jeff’s comment that love is not a feeling I began to wonder just what we really understand about love and feelings.  There are likely hundreds, if not thousands of references to love in the bible. 

1 John 4:7

Dear friends, let us love one another, for love comes from God. Everyone who loves has been born of God and knows God.

Matthew 22:37-39

Jesus replied: " 'Love the Lord your God with all your heart and with all your soul and with all your mind.'  This is the first and greatest commandment.  And the second is like it: 'Love your neighbor as yourself.'

It says love God, love your neighbor, do this with all your heart and soul. It doesn’t say when your neighbor makes you ‘feel’ angry that you don’t ‘feel’ love towards them.  It is pretty simple…love and never stop because God loves us and never stops.

1 John 4:18-19

There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love.  We love because he first loved us.

Exactly…we know how to love because God first loved us.  He didn’t teach us to ‘feel’ love, he taught us to love… no conditions.  He showed us that there is no fear in love and fear is a feeling…

1 John 3:16-18

This is how we know what love is: Jesus Christ laid down his life for us. And we ought to lay down our lives for our brothers.  If anyone has material possessions and sees his brother in need but has no pity on him, how can the love of God be in him?  Dear children, let us not love with words or tongue but with actions and in truth.

Love goes beyond ‘feelings’ it doesn’t’ get trapped by feelings.  It doesn’t say ‘yeah well that guy looks like someone I can’t trust, he does things I don’t believe in or agree with, he isn’t a Christian’… no where does the bible tell us those things but everywhere it tells us to lay down our lives for those God loves because Jesus did that for us.

Ephesians 5:33

However, each one of you also must love his wife as he loves himself, and the wife must respect her husband.

Hmmm…and now we get into a real tough area.  How often have you heard someone who is struggling in their marriage say ‘well I love her but I am not IN love with her’ or ‘I just don’t feel like I love him anymore’.  God never said it would be easy and he also NEVER said love was about feelings.  He said it was about commitment, about dedication.  The most common scripture read at a wedding is likely this one…

1 Corinthians 13 4-8a, 13

⁴ Love is patient, love is kind.

It does not envy, it does not boast, it is not proud.

⁵ It does not dishonor others,

it is not self-seeking,

it is not easily angered, it keeps no record of wrongs.

⁶ Love does not delight in evil but rejoices with the truth.

⁷ It always protects, always trusts, always hopes, always perseveres.

⁸ Love never fails

¹³ And now these three remain: faith, hope and love. But the greatest of these is love.

Anyone read in there anywhere ‘love is like this until you don’t ‘feel’ it anymore and then it just goes away’.  Yeah…nope, not there.  This ain’t Hollywood folks, this is no Harlequin romance.  It’s life, it’s real and nowhere has it been said that it should be a walk in the park.   Hollywood paints love ‘as  a sensational, sensation demanding, self-centered, self-fulfilling, demanding kind of love. A lazy form of love that places the responsibility on others. True love is so much more. It is noble and pure in the truest and most undiluted sense.’

Is the above passage a tall order, a lot to live up to? Heck yes! Difficult? Intensely so!  But is it impossible?  Well I guess the answer is yes, if we leave it up to us and our strength, but we were never asked to do that.  Never did God say ‘here is what I command you to do in regards to love.  No go and do it and don’t you dare come to me for help with it’ .  If we learn to rely on Him, to lean on him and the power of the Holy Spirit then the task of loving others is not so daunting.

 True love is work… whether that is the love for our partner, our spouse etc or the love for a family member, a child, a co-worker, a neighbour…the list goes on and on.  God never promised us a life of ease but he did promise us salvation.  Scripture is clear that we cannot gain our salvation by what we do but Scripture is equally clear that living for Christ as His witnesses and followers includes being willfully obedient.  And being willfully obedient includes following what God says about marriage and divorce…

Matthew 19:6

"Consequently they are no longer two, but one flesh. What therefore God has joined together, let no man separate."

Matthew 19:9 ESV / 86 helpful votes

And I say to you: whoever divorces his wife, except for sexual immorality, and marries another, commits adultery.”

Malachi 2:15-16 ESV / 4 helpful votes

Did he not make them one, with a portion of the Spirit in their union? And what was the one God seeking? Godly offspring. So guard yourselves in your spirit, and let none of you be faithless to the wife of your youth. “For the man who does not love his wife but divorces her, says the Lord, the God of Israel, covers his garment with violence, says the Lord of hosts. So guard yourselves in your spirit, and do not be faithless.”

Love endures all things and it is a commitment, not a feeling.  You can’t just ‘bail’ when it gets too tough, you can’t just find another when you aren’t getting what you thought you would from the love commitment you made before God.  I am sure it was no mistake that this sermon was presented on Mother’s Day…a day to celebrate the love that we have for our mother’s and, usually a day for families.  Traditionally families come together from the love of a man and a woman, a husband and a wife.  Two people who made a commitment to each other…a commitment to love, honour and cherish each other to the end of their lives.  Two people who committed to love each other enough that they would, together, raise a child or two or more together.  When love becomes a feeling and not a commitment, a thing of patience, kindness, perseverance hope, trust and honour, then we hear ‘we are doing this for the kids, we fight too much to give them the life they deserve’.  But the life they deserve involves love and love involves commitment…you can’t just give up. 

I pray that each and every one of you can find love, can make a commitment to love others as God requires us to and that you can put feelings aside, no, that you can take them out of the equation and follow the instructions of God, honour the commitments you have made. 

P.S.   

All of this seems to tie into marriage and relationships and that is very much what this is sermon was about but it also made me think about love in general and how hard it can be for people to understand love.  Those 4 types of love that I researched are a vital part of each of our lives and given that this sermon was presented on Mother’s Day it did make me think of the love we have for our children.  Mother’s Day, as I said before, is a day to honour mother’s… and a day for mother’s to focus on how awesome it is to be a mom.  And like so many other moms out there I can’t help on Mother’s Day but reflect on the fact that all who call me mom are not with me here on earth.  For some reason it is day that I find harder then some, that I miss Cole more then on the average day.  That Storge love, that natural love and affection of a parent for their child, just seems to creep up on me on days like that.  Most just don’t understand that either I don’t think.  They understand Storge love, that love for a child that is so intense, so unending, so all consuming.  Butt tey don’t understand that Storge love always protects, always trusts, always hopes, always perseveres, that Storge love never fails even  if that child that is so loved isn’t here.  They are forever here in our hearts.  If it is to be understood that  love is something that has to be worked at and is never easy then it should be equally understood that learning to live without someone you love is also something that has to be worked at and is never easy. 

I am so blessed to have been given these four gifts of love and I vow to put in  the effort that love requires everyday.  

Motivational Mondays - The Smith Family's TTTS Journey

So I am finally getting to the project I began dreaming of almost two months ago.  If you don't remember what that project was, please reread this post  . The basis of that post was that, after being featured in another blog and being told how 'inspirational' I am to others (which I really don't get but that is a topic for another blog) I decided I wanted to do a weekly feature on those people who have taken crisis and trials by the horn, turned it upside down and come out on top.  Those people who have endured some of the toughest things life can give and chosen to do great things with that, chosen to let it motivate them to change things for others, support others, do great things to honour those they have lost etc.  
My first Motivational Monday feature is the most suiting I could possibly find...because this person was and is my inspiration.  I know that I have spoken of Fetal Hope (now called Fetal Heath) on my blog before but I am not sure if I have told the story of how I 'met' the folks there.  Someone in my real life (I think Tania Davies, a past co-worker but don't quote me on that) did some research after TTTS became 'the word of the day' in my life.  Within days of us being diagnosed and losing Cole she sent me a link to this amazing website and message board.  There I 'met' two amazing people who I have come to know as friends.
I remember, clearly, my first few posts on the Fetal Hope message boards.  I was devastated, confused, lost, angry, sad and just plain 'a mess'.  I posted about being some many days into the 'hell that is TTTS' and not really even understanding what happened.  Within hours I had a response of support of a lady named Tammy.  She shared a bit of her story with me but moreover she shared her support, her heart and her prayers.  She offered to call me and asked for my phone number.  Within an hour of me sending it to her she was calling me from Colorado.  I think we spent well over an hour on the phone that first time.  She answered so many questions and made me feel like there were no stupid questions.
Over the next few months I exchanged many messages and phone calls with her.  I wasn't in the hospital 24 hours after my water broke and she called to share her support and concern.  In the following weeks/months she helped me prepare to welcome my boys into this world.  She shared the most personal and private part of her life... she shared stories and even pictures of her angel, Nicholas, with me.
And as life moved forward and my boys were born she continued to support me.  She called a few times and when I seemed ready to support others she helped me connect with others.  She encouraged me to share my story and she helped me to understand why others didn't always handle hearing me talk about our journey well.  
Tammy's support, dedication and kindness inspired me to be a 'Tammy' for someone else...and now, literally, hundreds of someone else's.  Together with the founder of Fetal Hope, Lonnie, we have dreamed up a few wonderful ideas to raise awareness and support for TTTS.  Each time I question what I am doing, especially when I've been burned by those in other support organizations who disagree with my approach, with my beliefs, with my alliance with Fetal Health, Tammy is there to encourage me, to tell me how proud she is of me and how I have allowed God to move in my life through Cameron, Cole and TTTS.
Today I want to share this motivational person with you and thank her for all she has done and continues to do.  



The Smith Family TTTS Journey - by Tammy Smith
Our journey to get pregnant had been a long one.  We had tried for four long years to have a baby.  The struggles of family bugging you at every turn.  People telling me I was getting old.  I finally had to tell my family of our difficulties so they would stop pestering me.  We had testing, we had treatments and we had a simple surgerical procedure, after all of this my husband and I were informed that it was unlikely we would get pregnant on our own due to endometriosis. We were devastated and heart broken by the news. It felt like someone had punched me in the gut.  At the same time we were told that we were perfect candidates for IVF. After much thought and deliberation we chose to risk everything to have a family. We sold our house to have enough money to do go for it and were able to start the IVF process in July 2004.
After a hard and long journey... after shots, and ultra sounds, and meds, and limitations and so much more ...Only a woman who has been told she has two tiny heartbeats can imagine the bliss of being pregnant with twins. I was in awe. My husband was a little shaken. We had two tiny heart-beating peanuts in one tiny sac. We were having identicals. I had hoped for a girl and a boy in this process however my siblings assured me this was so much cooler.  We were besides ourselves and so were our families and friends.
At sixteen and a half weeks we were going in for our third ultra sound; this one to find out the sex. We were having boys. I loved watching them move around and my friend was in awe. We never realized they were concerned and taking extra long until the doctor came in. We had TTTS or Twin to Twin Transfusion Syndrome. As they explained the difficulties of this syndrome, I felt like I had an enormous slab of concrete sitting on my chest. I maintained my composer in the office, but I’m not sure how. I felt anything but calm. My miracle pregnancy was in jeopardy and the long battle was about to begin.
Every appointment there was more devastating news. We had to make the most difficult choices of our lives. As they struggled, so did we.  I continued to be strong and positive despite everything. As their tiny hearts began to give out we were sent to a fetal center to save our babies... Only our doctors could not save both lives and we lost our sweet donor Nicholas.  It was and still is the worst day of my life.  Yet I was still pregnant .  Zachary, our survivor and recipient had done well  and the procedure went as well as could be expected. Zachary’s heart and blood flow weren't affected during the procedure and the following morning he was already starting to show dramatic improvements in his heart and blood flow. My heart however almost broke when I watched him on the ultra sound trying to get his brother to interact with him. I would never get to see them interact again.  I would not get to see them grow up together, play together, fight and just be brothers.  Our angel had gone to be with our maker.  I had to be positive for the child still fighting for his life. We returned home with bittersweet hope and sorrow. I had to stay calm and focused and most importantly positive. Our battle had just begun as I had an ever shortening cervix, constant contractions and a long tour of bed-rest to face in the hospital. 
Finally, the day had come to deliver these sweet babies. We had somehow, by the power of prayer, made it to 36 weeks. Not even my doctors could believe it. You cannot imagine the power of this bitter sweet moment; the bliss of delivering a baby that has struggled so hard, have him snuggled even for a moment in your arms and know he is safe (yet his journey was far from over), and the shear devastation of delivering a baby so tiny, so still and holding him in the palm of your hand wishing things were different. The pain is unbearable.  It was the most bittersweet moment of our lives; to have one baby so small and fragile, still fighting for his life and the other, barely a handful, who will always be a part of our lives even though we would not get to watch him grow up. We wanted each of the boys to have something of their brother’s so we gave them each others middle name by naming them Zachary Raymond Dane and Nicholas Dane Raymond. I held Zachary for all of one minute before he was whisked away to be transported to Children’s hospital where he spent his first 3.5 weeks. Where he underwent two cardiac catheter procedures in hopes of ballooning open his pulmonary valve. They finally sent him home on oxygen. Unfortunately, just five short weeks later he was not improving the way the doctors had hoped and he had open heart surgery at eight weeks old to remove his pulmonary valve.

We held Nicholas after he was born and we both sobbed. We sobbed for our loss and for Zachary’s loss. We wouldn’t get to watch him change and grow and Zachary would never get to hold his hand or snuggle up with him at night. Nicholas was so small and so perfect – just like his brother. We took a couple of pictures of him all wrapped up in his tiny blanket. These are the only pictures we will ever have of him. Nicholas was cremated and we spread his ashes in the place we exchanged our wedding vows. Every year we will light a candle in honor of the son we won’t get to see however he will always be part of our lives.
Time heals all wounds they say, however as a wound heals and begins to close it is often jagged, rough, red and ugly. It is often raised and occasionally even painful or sore. Over time though it softens, flattens out and fades but it never disappears. It leaves a scar.  That has forever changed us.  It is always there to remind us of our battles and our losses.  
I was often shocked when people would say with the best of intentions,   “Well at least you still have one baby.” As if this was some sort of consolation for my troubles. You would never say to someone who has lost a leg, “Well at least you still have the other leg.” Yet I have now met families who went home after their long toils with pregnancy empty handed and with not even one of their babies to raise.  So I know  I am blessed that I do still have one single TTTS survivor.
A few months later I began to do more research on TTTS, that’s when I found a reference to the TTTS Race for Hope. I immediately contacted Lonnie to find out if they were doing the race again that year in Denver. I was elated to discover not only were they doing the race again but they would also like some help. I felt it was a great way to celebrate all that Zachary had been through and to honor my little angel Nicholas. I helped put together a few minor things before the race and was amazed by the feelings of joy I felt helping during the race. It was a wonderful yet difficult day in November because it was very hard seeing all those identical twins. I loved being part of something so important however it nearly broke my heart as well. I went home after the race and cried. I had spent so much time trying to get Zachary here and get him well that I really hadn’t taken the time to truly mourn our loss. I actually started that process after the race.
My son is now 8 and doing great.  You would never know just looking at him that he had ever had to fight so hard to be with us. He is all boy and moving from the moment he wakes until his little head hits the pillow. His doctors couldn’t be happier. Sometimes when I look at Zachary I wonder what it would be like to have both our boys in our everyday lives. I love him with all my heart, however there is always something missing.  I don’t get to know what it is like to hear them giggle together or wonder what trouble they are conjuring up together. I don’t get to watch them both blow out their birthday candles together.  I truly believe we did what we thought was best for us and our sons. We had numerous families and total strangers praying for us. Although some things are still a struggle we love Nicholas as much as we love Zachary. Zachary does know all about his very amazing struggle and how miraculous he is. He will know all about his little twin.   

I am the mother of a single TTTS survivor. I continue to celebrate and honor both my boys by actively participating in the Fetal Health Foundation which I fully believe has and will give hope to tons of other families.  I help spread awareness. I provide support to families who have lost one or both of their babies. I help organize events to raise money to help other families save their babies. I help provide hope!!  Knowledge is power and we have the power to save these tiny lives.

I am the mother of Twins!!





Thank you Tammy Smith for being my first guest blogger.  I invite anyone reading this to share it and to consider sending me your story or the story of someone who has taken a trial and used it to inspire themselves.  Please send stories to jodietummers@gmail.com

Why the Sky is Blue... the faith of a child, the doubts of an adult,

Last Sunday at church our pastor spoke about Thomas.  Good ol famous 'doubting Thomas'.  I am pretty new to this whole 'bible thing' (and yes, I can still poke fun at myself for my lack of knowledge, for my ability to miss almost everything I ever was told in Sunday School, church and even in my work in Catholic schools for the last 18 years...I am sooooo pathetic!!!) so I really didn't know much about Thomas but after Sunday's sermon I have grown to love this disciple for the 'real' character he was... so much to identify with.

John 20: 24-25

²⁴ One of the twelve disciples, Thomas (nicknamed the Twin),^[c] was not with the others when Jesus came. ²⁵ They told him, “We have seen the Lord!”

But he replied, “I won’t believe it unless I see the nail wounds in his hands, put my fingers into them, and place my hand into the wound in his side.”

And for eight long days Thomas was filled with doubt, with questions.  And who wouldn't be...what a miracle, what a concept to grasp.  Most of the disciples, Thomas included, deserted Jesus during the crucifixion.  They had seen the miracles Jesus performed first hand but they were confused by what was happening and it was easy to let doubts invade their minds.  They all did it but only Thomas put that doubt into words.  

Our pastor gave us much to think about regarding Thomas and his doubts.  As Pastor Jeff said, perhaps Thomas's nickname should not be 'Doubting Thomas' but rather 'Honest Thomas' because that is what he was... honest.  

How often do you have doubts about things in your life?  Do you believe those doubts make you weaker, make you struggle with questions?  I know that for years I have had doubts and for years I have felt that these doubts dragged me down and more recently, that these doubts were a sign I didn't trust God or that I wasn't willing to accept that God had my back.  But the truth is that all Christians have times of doubt and to deny this is not something that will move you forward.  God knows we have doubts and being honest with ourselves, with others and most importantly, with the Lord, is the key to being reassured.  

John 20: 26-29

²⁶ Eight days later the disciples were together again, and this time Thomas was with them. The doors were locked; but suddenly, as before, Jesus was standing among them. “Peace be with you,” he said.²⁷ Then he said to Thomas, “Put your finger here, and look at my hands. Put your hand into the wound in my side. Don’t be faithless any longer. Believe!”

²⁸ “My Lord and my God!” Thomas exclaimed.

²⁹ Then Jesus told him, “You believe because you have seen me. Blessed are those who believe without seeing me.”

Jesus did not condemn Thomas for doubting, he did not ridicule him or push him away.  What did he do instead?.... He went to Thomas and gave Thomas the proof he needed and instructed him to believe.  

So if it was okay for Thomas to have doubts then it must be okay for us to have doubts don't you think?  

Sometimes I think that the faith of a child is the way to go.  Before your mind is clouded with the busy-ness of life, before the realities of life cast doubts in your mind...before all that you belief because you belief.

Recently I read a line in a novel by Susan Meissner that really put this in perspective and she touched my heart in a way that it hadn't been in a long time....

"But don't you wonder why God let it happen?" I asked. 

"For a long time I did want to know," she finally said.  "It seemed to me I deserved an answer.  Your daddy was a good man and a good father.  And he loved God. But deep down, I knew that sometimes God's reasons for doing things or not doing things are as deep as His character.  Being supplied with a reason when maybe I wouldn't have been able to understand it might have made it worse for me". 

She drew me close and said "Sometimes asking God for a reason for something is like asking Him why the sky is blue.  There is a complex, scientific reason for it but most children, including you, are content with knowing it is blue because it is.  If we understood everything about everything, we would have no need for faith".

The author goes on to have this character reflect on the words of her mother.  She says she never looked at the sky the same way after that and although she had many questions for many years she learned to be at peace with a sky that is blue for no given reason at all.  This character had been raped which resulted in the conception of a child.  She laments about the 'stupid things people say'...

'Well meaning friends would feel compelled to say, "We know God has a good reason for this" or "God must have a wonderful reason for allowing this to happen." And while I didn't doubt their sincerity, I did wonder if they had stopped to think .  Obviously they had never stopped to consider if God had a wonderful and good reason for making the sky blue instead of red.'

How often have you done just exactly this...asked why for questions that there just weren't answers for, searched for answers to the 'whys' of something that just makes no sense at all?  How often have well meaning people done just exactly what the friends of this character did....offered words like 'Everything happens for a reason' or better (okay much much worse) 'God must have had a wonderful job for loved one,  must have really needed them in heaven more then He needed them here'???  

So often the only reason that makes sense is just as simple as why the sky is blue...because it is, because we have to just have faith, just trust God and eventually, like a child, accept it.  It might seem impossibly hard but  no one ever said that life would be easy.  

Impossibly hard doesn't just belong with acceptance of why things happen but it also goes hand in hand with making decisions, knowing if the choice you are making is the right one, knowing if you are really hearing the voice of God in answer to your prayers for guidance or are you going down the path that seem right to you, is what YOU want.  Choices can be impossibly be hard but, even more so, is accepting the message, the guidance from the Lord when you need to make a decision.  

This too came up in this novel and I just felt like I had to share the others thoughts on choices and making decisions.  

"How do you know this is the right thing for you and Dad to do?"

How indeed? She was asking the question that sooner or later everyone who believes in a sovereign God asks.  Assuming God is the God of right things, how do you know the right thing from the wrong thing when both choices seem practical?  Does it matter to God which one you choose?  Has He chosen already for you but waits to see if you agree with His choice?  Then when you choose, does He thwart the plan He will not bless?  Or does He allow you to make a choice you will regret so that you will become wiser by experience? 

I bring this up, I was keyed into this passage, because it hits home.  There are so many decisions in my life to make these days it seems....well maybe I should say 'our' life.  I have really been turning to prayer to help make those decisions and just when I think that I heard God's voice correctly and/or God heard mine then something happens to make me doubt, make me question, make me wonder.  And like Thomas, I feel like I need proof, need better, stronger signs.  I can't just accept the answers that I am given sometimes or maybe I just can't figure out if I am hearing the answers or making them up myself.  And like Pastor Jeff said about Thomas, being honest about your doubts is better then pretending you never question anything, never wonder why things are happening.  

Do I think it matters to God what choice I make?  Yes.  Does it matter to God if I question my choices or His answers?  No...not really.  He expects it and He knows I am human.  Does He allow me to make mistakes?  For sure...ever heard of sin???    Whatever happens will happen and it will work itself out through God because ultimately it is His will, not ours.  When both of the choices seem practical and you can't decide what is right, when you are full of doubts I think you just have to go back to acceptance of your youth....the sky is blue because it is.  If we understood everything about everything, we would have no need for faith. 

Give it to Him, question Him, trust Him and accept the blue sky for what it is. 

Healing, Hope and the time we have

“I wish it need not have happened in my time," said Frodo.
"So do I," said Gandalf, "and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.”
― J.R.R. Tolkien, The Fellowship of the Ring

Doesn’t this just ring so true.  When a life ends, especially unexpectedly or if it’s a child, we wish with all our hearts for it not to be true…some even plead with God to make this not their destiny.  But all the wishing in the world can not change what has happened.  All the planning in the world cannot decide your fate.  We have but the time we are given to achieve greatness and fulfill the purposes for your existence on earth.
Last week this reality hit me full in the face or rather, the heart.  Another angel twin joined so many already heaven.  Cayson Sailor Page was only 7 months old but he achieved greatness in his life, he changed the lives of so many people…so many who he never even met in person.

Cayson’s mom, Elizabeth, and I became acquainted last May when she was only 18 weeks pregnant or so.  She was seeking support, answers even, for the mystery that seemed to surround her twins.  One of them, Cayson, was so much smaller then his brother and his fluid levels were very low.  But his twin, Mason, had no affects at all…everything was fine, normal.  Further investigation showed multiple complications in Cayson’s heart and some shadows in his bowel that were markers for a few disorders.  The doctors told Elizabeth that he would never survive, that she should plan his funeral. 

As time went on it became very apparent that Cayson had not heard what the doctors had determined was his fate.  He was thriving.  He was growing and he was doing great.  His health problems didn’t go away but he didn’t any sicker either.  The doctors discussed many scenarios and proposed many plans for treatment and for the timing of delivery.  In mid-August Cayson and Mason were born.  Cayson was only 1lb 11 oz, his twin was over 4 lbs I think.  Cayson was alive and he was doing well for such a small baby with a serious heart condition.  Time went on and Cayson had various struggles…but he always managed to defy the odds and keep going.  He had two heart surgeries and eventually made it home in December I believe.  He was a typical baby…laughing, smiling, enjoying time with his family and friends.  He just seemed to have a zest for life. He showed the world that we can never give up, that doctors don’t determine our fate.

Children with this type of medical history seem more susceptible to infections, viruses etc and this was true for Cayson.  Around a month ago he ended up back in the hospital for a virus or infection… something wasn’t right for him.  Once again his health went up and down but they managed to discover what was wrong, he had a strain of influenza.  And then suddenly one day he coded and needed CPR to be revived.  Things were so bad that he was put on life support.  And sadly, he never recovered. 

In those last few days there was a huge online community praying for him.  So many people prayed for a miracle, prayed for healing.  One day Elizabeth posted that after long talks with Cayson's doctors and, seeing that there were no changes in him other than the rapid decline in his limbs, they believed that Cayson's body is trying to tell them no more machines. They made a heart wrenching decision. They believed that if it is God's will for Cayson to survive, he would make it without machines. But if God had other plans, then what was meant to be, would be.  It was all in God's hands.

I struggled in what to say, how to react….especially with so many people praying for a miracle, saying that God would heal Cayson and send him back to his family.  It’s not that I didn’t believe that was possible, not that I don’t believe in medical miracles…Cameron is one…  but the reality was that it just might not be.  I know that people turn to faith at times like this, people pray that God will intercede.  And when the outcome they didn’t want, they didn’t pray for happens then they question their faith, their beliefs, the question if God really exists.  I wanted to share words that would give hope but also prepare people’s hearts but I was afraid.  I didn’t want to offend anyone, didn’t want anyone thinking that I wasn’t hoping for the same miracle they were, that I was ‘writing  Cayson off’.  I was so uncomfortable in sharing my thoughts but I knew I had to….not really for Elizabeth because I think she had come to terms with this but for all those who were praying for Cayson.  And so I sent Liz this message….             

I think we pray for healing for our sick children and so often assume that our version of healing is what God can do. But sometimes the only healing that God has is the ultimate healing in paradise. Being able to accept that and place it in God's hands takes great courage.

God decided before the doctors did that Cayson had a job on earth to complete, he knew that Cayson would change lives, impact those he and his parents met. Perhaps his job here is done or perhaps it's barely begun...that is for our Lord to decide.

Cayson changed the world and will continue to impact it for a long time to come.  He chose to do amazing things with the time he had here... or God chose to work through him to make that happen I guess.   His time on earth is over…as Vince Gill once sang… "Go rest high on that mountain. Son your work on earth is done” but only Cayson’s earthly life is over…God has great things planned for all of us from conception, through our life here on earth and into our time in heaven. 

Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning.
Winston Churchill

Perfectly worded Mr. Churchill… our lives on earth are all we focus on and we search for their meaning, our purpose.  But perhaps our lives here are just the beginning, just training for the life God has planned for us after our work is through.

Sharing this kind of thinking, especially the part of God’s version of healing not being the same as our version of healing, has led to much thinking about what God wants from me, what I am to do and say, how I am to help…and if I am really ready to do what he is asking. I attended a bible study two days after Cayson passed away.  We are studying the book of Jonah.  Now there’s a guy who didn’t want to do what God was asking.  He ran, he hid, he refused…but he continued to pray.  We talked a lot about consequences at this study.  How the choices we make have consequences and so often they are not anything we would have wanted and not anything we think we could possibly learn from.  The author of the study series gave us this to ponder…

The more vast the consequences you have had to bear the more vast the work he has for you afterwards

Now I am not going to say that I made choices that lead to the consequence of losing my son…because that is NEVER a consequence God wants for us.  But I do know that I made horrible choices after he passed away in how I dealt with others, especially Geoff.  I said awful things and I was so very selfish.  But in all honesty when I read this passage and didn’t focus on it as a negative thing but rather just how vast the consequences of a life lived can be.  I have experienced a lot of death in my life…of very young people too.  I lost a boyfriend, friends, a child I worked with and a child of my own.  That is a vast amount of grief.  In the midst of this bible study about the consequences of my sins I began to drift to this thought of why I have experienced so much of this…why I had to lose my son especially and why so many people I have connected with have also lost a child.  I have to say that it is very clear to me that the vastness that I had to bear there has lead to such a vast work, so much that I believe God has directed me to.

A few days ago I sat in on a Gr. 7 religion class.  The group was watching Touched by an Angel and this episode was a perfect fit for the week before Easter.  It's from season 7 and is titled Netherlands. In it Monica questions her job as an angel, questions where her heart is because she sees such sadness, such loss on earth.  After a bombing that takes many lives she questions her faith so much that she is tempted by the devil and she ends up in the dessert asking God if this is really her fate.  There is much more to the the story but the part that really made me think about my heart was this....

“You will never understand Love on Earth until you understand death."

Followed by.... 

"Why does He allow suffering?"

"  Because He allows free will.  If there were no free will there would be no choice to love."

 Love is a choice and understanding love is so hard sometimes.  But understanding death is even harder.  Asking why can drive you insane.  But Tess was so right when she said that you can't understand love if you don't understand death.  To love someone, truly love them from the depths of your heart, means that you are willing to accept death as a part of life and that you won't run from it or shelter yourself from it.  Loving someone is a choice and we make it freely at times and with such hesitation at others.  When death comes and takes someone we love we do question God but deep down we know that this was part and parcel of the love we gave freely to that person.  They are intertwined, they are part of each other.  

Stepping into a world of death to offer support is hard, it's risky. You begin to care for those you help, you begin to love them.  You see the love they have for the person they have lost and sometimes you see death consume them.  But really what you are seeing is love and life consuming them.  Knowing that each time you offer support you open up your own heart wounds, remember your own times of love and death intertwined and relive the nightmare that may well be a part of your loss story...well it's tough.  But it's a calling that God has for some of us and for me it comes as a result of consequences and it's job is vast for me.  Each time I speak of faith with death I feel comfort, I feel peace and I feel hope.  I am so glad that I can share Jesus and his love with those who are suffering, who are lost, sad, hopeless.  It's not always easy but since I can't decide how death will happen or to whom, then I must be content and empowered by what I do with the time I have been given by God.