A Becoming-Famous Trisomy 18 child: Bella Santorum

Living outside the U.S. makes it more challenging to follow any U.S. political campaign, be it a Primary Election or a National Election.

Recently I´ve become quite interested in the Republican Primary Election because of  Rick Santorum, a candidate who caught my eye because his 3-year-old daughter, Bella, has the same syndrome that our baby has been diagnosed with. Of course, I don´t think that our story will turn out just like theirs...but it is interesting to see how Bella continues to defy the odds and keeps living more weeks, more months, more years than expected.

She was admitted to the hospital this past weekend with pneumonia, which can be deadly for a Trisomy 18 patient. Please pray for her and her family as they monitor her situation.

Below is a campaign video from Rick Santorum where he talks about his family and about Bella and her health situation.

Just Checking In

So, I finally have a quiet moment at home. It´s Saturday afternoon and Papa has taken "little one" to the park for a little while. I don´t have much to say, but thought I´d log in just to keep folks updated....

It´s been 5 days since my last doctor´s visit when they said that there was nothing flowing through the baby´s umbilical cord. Each day since then I´ve been very careful to notice movements from the baby to ensure that she is still alive. Ruben asked me this morning if I´d noticed anything today and I couldn´t remember....but this afternoon as I sat down to write she´s been giving quiet little kicks...*whew* and I breathe a sigh of relief. 


Earlier this week a friend recently wrote and asked me how I was feeling. This is my response to her....

Thanks for wanting to empathize. The truth is I´m not feeling much of anything, especially since everythign is up in the air. It feels a little like I´m watching a movie. Last night I cried myself to sleep. This morning I woke up and started the day just like any other, feeling the same as any other normal day. I´ve noticed the baby moving still....so, it´s a little confusing, although there is no doubt that she is not well at all.


I´ve been sad about things we will probably never do (not even thinking about lifetime milestones like learning to ride a bike, going to the prom, graduating from high school and college, getting married, etc.) but now thinking more about things like dressing her little newborn body, giving her a bottle, changing her diaper, pushing her around in a stroller, making silly faces at her so that she´ll smile. I still know that God is able to intervene and change her story completely, but I´m also preparing for Him to take her home and heal her there.


I´ve also had thoughts about the things I´ve missed since being pregnant...a good glass of wine, drinking coffee without worrying about the caffiene, going running, having days where I feel good, i.e. no nausea and being full of energy. Mostly, it´s just waiting and watching...not thinking too much about it, although we need to go ahead and prepare funeral arrangements so that we don´t have to think so much about it when the time comes.


Moment to moment, the days are pretty normal. The hardest part is when people I know, mostly acquaintances (neighbors, moms from the park, moms and teachers at Aaron´s playschool, etc.) ask me how things are going. I usually just say "fine." I am thinking about preparing a note for the neighbors on my florr because they ask with such genuineness and they will definitely find out, sooner or later, about the Trisomy 18, especially if the baby comes early and/or is stillborn. It will be easier to tell them in a letter and easier to tell them sooner than later. I just haven´t had the energy to do it yet.

What a strange pregnancy....my thoughts are not of "What will it be like with 2 children soon?" or "I wonder if she´ll have red hair and fair skin" or "Maybe she´ll have Ruben´s smile." No....the thoughts about the future just carry me to a big blank spot, a big question mark and mostly leave me wondering if her premature (and eventual funeral) arrival will come this week or next, or next month or the next....and I also wonder how it will play out when I see my neighbors, those acquaintances that I don´t see every week, who politely will ask, "How are you?" "How was labor?" "How is your baby?" What will I tell them? How will I break the news?

Does this mean that I´ve stopped praying for a miracle? No. Definitely not. I´m doing my best to call on and wait on the Creator of the Universe and, at the same time, face the hard reality of our circumstances, so as to walk through them without living in denial. I´m so glad that He´s in charge and not me.

I´ve been encouraged by friends, and even strangers, who have written and called to share support, thoughts, comments, Bible verses and reading excerpts....


"My peace is the treasure of treasures: the pearl of great price." Also, " Thank Me when things do not go your way, because spiritual blessings come wrapped in trials. Adverse circumstances are normal in a fallen world. Expect them each day. Rejoice in the face of hardship , for I have overcome the world." -Jesus Calling  


"The power of praise... it releases God's goodness in your life! Just remember when Paul was sent to prison for witnessing.  He was placed in the deepest prison cell - as though he were a criminal.  He, then, together with Silas, began to praise Him.  So loud that the other prisoners were able to hear them.  It was so loud (figuratively) that their praise reached Heaven...  And God released His power.  The doors of the prison cells (plural) opened up (they were not the only ones who received God's benefits) and they all were free to go.  But none had left just yet.  They were still in the prison cells.

God's power opened the doors for Paul, Silas and the other prisoners. So, if the circumstances try to imprison us, the power of Praise will release God's gift of freedom (the expected answer, healing, etc.) in our lives!! I will praise Him regardless of my circumstances.  Every problem is temporary.  God is Eternal.  His Word is Eternal.  His Love for YOU is Eternal."


Although I´m very tired as I write, I´m still encouraged.

Physically, I´m getting to that point of starting to feel  uncomfortable with the size of my belly and, while the terrible ongoing nausea that I experienced for the first 4 months of the pregnancy has subsided, I still don´t feel 100% better every day. The last two days I have been dragging a bit. And, while Aaron tests us with his 2-year-old tantrums, he is still and always be a complete blessing to us.

Ruben starts his night shift this week. It makes for a long week and usually tired conversations between us.

Please pray for kindness in our household this week and grace for each day. 

Thank you!

Her Going Home Could Be Nearer Than We Thought

(Prayer requests at the bottom of the page.)

As I waited for the bus among the dozens of other passengers-in-waiting at the hospital bus stop, I had to wipe away the tears I had tried to hold back...I wasn´t sobbing yet, but doing some deep swallowing to maintain composure. I faced the warm, Mediterranean sunshine with my eyes closed and felt the cold, winter wind at my back.

I had just come from my latest ultrasound with our doctor, a specialist in genetic abnormalities. I watched as she measured the head, the legs, the torso, etc. and as she closely examined the heart, the spine, the intestines, the umbilical cord. There was a younger doctor there too, observing, learning how to recognize birth defects and typical Trisomy 18 symptoms, like her clenched hands. "Are they fused together?" she asked the experienced doctor quietly, without referring to the body part (but I knew she was talking about the baby´s fingers.) "No, they aren´t fused together. They are just like that, always clenched." (A typical sign of Trisomy 18.)

When the doctor finished the exam, I asked, "More problems?" because with every visit and further development of the baby, more developmental problems have been revealed. To my surprise she said, "No, no changes since the last appointment." In some ways, I breathed a sigh of relief...at least there´s nothing additional. Last time they had identified the poorly developing placenta and the reality that it is not functioning well. I asked about the baby´s growth because during the last visit we saw that she was two weeks behind on her growth. Today the ultrasound revealed that she is now three weeks behind.

The biggest news, the saddest news, however, is that there is nothing flowing through the umbilical cord now. (The umbilical cord is what connects the baby to the placenta, which supplies the baby with nutrients and oxygen from the mother and transfers waste products and carbon dioxide back from the baby to the maternal blood supply.) So, nothing good getting to her and nothing bad is able to get out of her.

In my mind, this news signals certain death...it´s just a matter of time. I´m only 5 months pregnant. We knew that there was a strong possibility that the baby would not make it to the end of the 9-month pregnancy to be born; but I have started to get used to the idea of at least carrying her to term. 

Although it seemed strange to ask, I had to know...."So, how will I know if the baby stops living? If she dies, I mean?" The doctor said that if we go 24 hours without noticing any movement, that´s usually the sign.

The baby has seemed so lively lately, wiggling and punching. It´s so fun to know that she´s there, alive and kicking, despite however uncomfortable I feel. And then I had to ask the next question, "So, what do I do if that happens?" "Come to the emergency room, straight to the delivery area and we´ll do an ultrasound to confirm." "And then you´ll induce to cause the baby to be born, right?" I asked, "Yes," she replied.

So, we´re watching and waiting, just not sure how things will go. Thoughts passed through my head as I walked from the doctor´s office to the bus stop..."Noone is promised tomorrow." "Our children are not our own. They are on loan to us to care for them." "Jesus loves the little children."

Also, Colton Burpo´s story of his trip to heaven and back in Heaven Is For Real came to my mind. Among his many encounters, one was with a little girl who told him that she was his sister. Months after his life-after-death experience, Colton came to the kitchen and told his parents, "I have two sisters. You had a baby die in your tummy, didn´t you?" Being so young, Colton was not told by his parents about the miscarriage; so they were very surprised by his statement. "In heaven this little girl ran up to me and wouldn´t stop hugging me....She said she can´t wait for you and Daddy to get to heaven." pp. 94-96, Heaven Is Real.

While this is merely one 4-year-old´s personal account, his words echo what Scripture tells us in Ecclesiastes 3:11..."He has made everything beautiful in its time. He has also set eternity in the human heart; yet, no one can fathom what God has done from beginning to end." We have been designed to live for eternity. The reality of eternity and the hope of the goodness of God have held me steady this afternoon...and will surely hold me to the very end. This is real. This baby is real...and I WILL see her again. This is not the end.

And so, to talk of death, such finite-ness, doesn´t seem to be the most adequate perspective. As I think of this empending moment, the death of our baby, for me, I can only consider it a going home, a passing to eternity where she will be in the best care with Jesus and where I will meet up with her again one day.

When I arrived at home, I tried to share the news with Ruben. The words wouldn´t come out, only tears. Please know that I´m normal. I have grieved and will be grieving. I´m not trying to stuff this down. I know there will be many more tears and maybe long weeks and months of darkness in the aftermath of her departure...but right now, I am also experiencing peace, knowing that God really is in control and that this pregnancy has not been a waste, by any means. There is a little girl that has been given to us by the Father for a short time...and she will be there in heaven, waiting to greet us when we arrive.

In addition to this long-term perspective, I also received an extra poignant reminder today that God is here with me. Each day I read a different Bible verse that comes to me on my Android cell phone (so convenient) through the "Daily Bible" application for Android phones. These words enveloped me as I waited alone in the sun with a tear-stained face....

"Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me." Psalm 23:4

He is with me. He is with us. He has not abandoned us. He will comfort me. So, I am not and will not be afraid.

Please pray for us in the next few days and weeks. If God chooses to rescue this little one so that she can spend some more time on earth, we will rejoice! If He chooses to bring her home now, we will worship Him too. Pray for wisdom, courage, peace. Pray that we could take care of all the necessary details surrounding a birth and a death which could potentially come in the next few days or weeks. Thank you!

Loving Me For Me

Lately when I listen to music, I think of it in light of this baby growing in my womb. I don´t really know her yet. I know her because of the HORRIBLE nausea and/or vomitting I´ve experienced almost every day since September. I know her through blurry ultrasounds. I know her through glimpses of her heart beat during a medical exam (woau, woau, woau, woau). I know her in light of her list of birth defects, which seems to grow every time we visit the doctor´s office. I know her because of her little wiggles from inside.

While I might not ever really get to see her personality develop here on earth, might not ever get to hear her voice or see the true color of her eyes, my love for her is growing--not for anything she has done or could ever become. I love her because she was GIVEN to us. Therefore, I choose to know her for as long as possible, even if that´s only during these months of gestation. And the love? Well, I imagine that the love will go on long after.....

The following is a song by J.J. Heller (subtitled in Spanish) that talks about a pure, unending love that loves "in spite of me" rather than "because of me." 

Thank you, Lord, for Your unearned, inexplicable love for us. Teach us to love others as you do.

Saying Goodbye Before Saying Hello

Recently we picked up a brochure, which when translated to English, is titled, Guide to the Municipal Funeral Services of Terrassa: All that you need to know in case of death.

It´s a booklet that we´ll soon need to leaf through. Even though funeral planning, especially of one´s child, is is a terrible task to have to deal with, I´m grateful for these weeks and months of relative peace beforehand to be able to prepare these details....so that when the time comes, it will already be done.

I´ve also started to explore to see if some kind of service similar to Hospice exists here in Spain. I think it does. It´s called palliative care. The world "palliative" comes from the Latin word "palliare" (the Spanish word is "ocultar") which means to cloak. 

I´m not sure what I think about the cloaking thing. It connotes covering, even hiding....but to me, it also connotes a protection, an assitance. 

When baby #2 arrives, if she lives for any time, unless the Lord heals her completely before she´s born, she will have serious health problems. Having professional medical assistance on hand could be a great help. I just hope that they will be kind too.

When Aaron was born he was in the infant ICU for 3 days. The nurses in that unit were sooooo helpful and I with all the nervousness of a new mother, I honestly felt grateful for such great attention and kindness.

So, I kind of feel like I´m walking in the dark with this topic...but I know it´s necessary and think it´s better to think through early on. Once it´s prepared I can put it in a drawer until it´s time. My hope is that we will have lots of time with our little girl before we have to say good-bye.

Somebody´s Been Praying For Me

A couple weekends out of the month Ruben works 2 days of 12-hour shifts. These make for VERY LONG DAYS.

So yesterday one of these shifts was on the schedule. Yuk! It was one of those days where you have to drag yourself out of bed to greet the day. I was soooo tired and felt like there was a cloud of general depression hanging overhead. Needless to say, it was a "pajamas-all-day-long" kind of day. Aaron loved it because he got to play all day long with his cars, building forts from sheets and creating highways from DVD covers. (So glad my Gilmore Girls series has been put to good use.)

By the end of the day I was stir-crazy and determined to have a more joyful and more productive day tomorrow. And I did. Filing, sweeping, organizing, laundry, blogging, emails, cooking, dishwashing....are among my list of accomplishments.

However, the highlight to my day was a walk to the park with Aaron. Even though we have to battle the winter cold, it´s so great to get out of the house! We got to ride the children´s train (open only on Sundays) and we even saw there a friend of his from school. Later we spent a good hour at one of the playgrounds where Aaron moved his cars around for what surely equals 100 miles!

Throughout the afternoon, via internet I listened to klove, a Christian radio station from the U.S. I could really tell what a difference it makes to continually renew one´s mind with the perspective of eternity and the character of God. The dj´s share news stories and personal anecdotes from listeners. It was a good reminder that life is hard, not only for me, but for lots of people....and also that God´s love for me is immeasurable and His strength and His commitment will carry me and my family through the months ahead.

So, the day ended with order in the house, hope in my heart and joy in my soul. What a difference one day can make....and the prayers of many, carrying me through from one day to the next. Thanks for praying!

The Last 24 Hours

One of the challenges of moving forward with a Trisomy 18 pregnancy is not really knowing how to feel, how to share, how to respond in each situation. The last 24 hours have presented a mix of situations and emotions.

Yesterday on the street I ran into a lady that I met recently here in our city. She has a child Aaron´s age and just recently had a baby girl. She knew I was pregnant and out of politeness asked about how it was going. As most of you know, I´m pretty transparent...but at the same time I don´t want to overwhelm people with our news. Depending on the person and the amount of time I have, I try to give a general answer, "I´m hanging in there."

With a genuine heart, she delved deeper. As I revealed the news that our baby has Trisomy 18, the expression on her face passed from confusion to sadness. "I´m sorry. I don´t know what to say." She began to tear up. I felt bad that I´d dropped this bomb on her and tried to comfort her by telling her not to worry....there really is nothing that can be said. She apologized saying that she should be strong and should be the one encouraging me. She was so kind, so sensitive. I felt like the insensitive one, just standing there with a matter-of-fact face, awkwardly trying to console this new acquaintance of mine.

Then, last night I had a weird dream. I drempt that I started bleeding. I was losing the baby. All I could think of was, "No! Not yet!" It was a strange, vague, fuzzy dream. What I do remember is being in a labyrinth of a hospital and being confused because I didn´t know any of the doctors and didn´t recognize where I was. When I woke up I was still pregnant and my son was calling for his morning cup of chocolate milk.

After dropping him off at playschool, I swung past the post office to pick up a package my mom had sent. She often sends envelopes and boxes of books and videos for Aaron. I thought it was a package for him. When I opened it, I found this sweet pink jumper (pictured above in Aaron´s hands.) She had mentioned it to me on the phone. Ever-supportive, my mom had taken the time to learn more about this syndrome on the internet. She even went to visit and talk with a local family whose baby had had Trisomy 18. Without having to explain it to her, she understood that we want to look for opportunities for joy and hope in what might be viewed as a hopeless situation.

The jumper is for a 3-month old baby...much too big for a Trisomy 18 baby, who are often born much smaller than healthy babies. Sadly I thought, "she may not ever be able to wear this gift." And yet....I´m working hard not to be overwhelmed by the Trisomy 18 statistics. We don´t know exactly how the syndrome will play out. The only thing we DO know is that God is good and that He cares soooo much about us and about this baby. So, we walk forward, step-by-step. As the due date draws closer I think it´s going to be more and more difficult to keep moving forward....but we´ll cross that bridge when we get there.

Caleb´s Journey

As I´ve begun to investigate more about Trisomy 18, I´ve been moved and inspired by a number of families. I want to include their stories here....to remind me that we´re not the only ones, to keep good models before me, to share with you how others have walked through this.

The first family I discovered was the Adamyks, Jeannette and Steven, parents of Caleb. I have included here a video about Caleb´s journey.

To read the blog that chronciles Caleb´s life click here: Caleb´s journey.

Heaven Is For Real

In December a friend recommended this book to me. So, last week I took advantage our new Amazon.es here in Spain to try to order it there. They had it, I bought it and it came in the mail just yesterday.

Heaven Is For Real is the story of Colton Burpo, an almost 4-year-old who goes into surgery after 5 days of a burst appendix. Apart from the drama of the crisis itself, what shines through is Colton´s experience during the surgery....a visit to heaven. 4 months after the surgery, he makes a comment about sitting on Jesus´ lap and hearing the angels sing. His parents are surprised. Over the next 2 years, more bits and pieces about his experiences with Jesus and Heaven come out. His father, a pastor, recorded Colton´s experiences as an eye-witness.

It is an easy read, informal but well-written. I read the whole book in just a few hours! What a great encouragement it was to read this story....and really a powerful and vivid reminder of the Scripture and creeds that I have claimed as my own.

In some ways, the idea of heaven seems more like a fairy tale than reality...but I know that what the Bible teaches about heaven is much more real and definitely more permanent than many of the things we live out here on earth.

One of the significant points that Colton makes and reiterates to his family is how much Jesus loves the children.  (He repeats it SO much that his parents finally have to thank him and tell him that they understand....and still, he emphasizes Jesus´ love for the children.)

What hope we have for our baby girl, remembering that she is greatly loved by Jesus; that she will be whole one day; and that if she goes to heaven before us, she will be there waiting to see us again.

What We Want You To Know

Ruben and I think it´s important that people understand where we are coming from in regard to Baby #2 and how we are approaching the days ahead.

1) There is nothing you can say to make it any worse or any better.
As you seek to sympathize and comfort us, we know it is difficult to know how to do that or what to say to us. Therefore, be relieved and know that your presence, phone calls, messages and support are what we need. Just the fact that you show us you love us DOES make it better.

2) We´re praying for a miracle.
We are praying (and ask you to join us) for healing. We are praying for the life of this baby. We know beyond a shadow of a doubt that our God is able to heal our child. And, in the same breath, we know that He is worthy, no matter the outcome.

If you do want to pray with us, here is what we would ask you to pray for:

I. For healing. II. For life and time with this child. III. Most importantly, that God would equip us for the days ahead and give us the strength to say, "not our will but Your will be done."

3) We are excited to have a baby girl!
We could not express how important it is for you to understand that we are not in despair. Rather, we are excited to have this baby at this time...and it´s a girl! Of course, we would do anything in order for her to be healthy, and we have cried enough to last a while; but we feel the Lord is sovereign and, therefore, has given this baby to us and specifically chosen us as her parents. So, we anxiously await our gift, for as long as the Lord would share her with us.

4) We are not strong.
If you happen to think that we are handling this well (and there are many moments I would argue that point) and see any strength in us at all, please know that it is from our Father and not due to anything having to do with either of us.

5) What can you do? Pray for all four of us.

(Much of this information was taken from Matt and Ginny Moody´s website about their son Eliot. They have already put into words the things that are in our hearts as Trisomy 18 parents.)

When the Support Is Not There

Yesterday evening was hard.

Some people, very close to Ruben and me, have chastized us (mostly Ruben...and I heard it from him) for choosing to carry out this pregnancy. They called us, mostly Ruben, irresponsible.

It was unsolicited advice.

It was very hurtful, especially since they have done no research of our baby´s diagnosis, no investigation of other cases of Trisomy 18. They did not ask us about how we are doing, about how we came to our decision. They did not ask about anything really.

I took it very personally and became VERY angry. The good thing is that I walked out before opening my mouth.

This couple is currently experiencing lots of stress due to a recent death in the family and another gravely ill family member.

Later, as I was washing dishes the Lord whispered to me last night very clearly...."They do not understand what is happening. They are weary. They too are afraid. Don´t take it to heart. They´ll come around."

I have had anger issues for a lot of my adult life. Maybe this journey of discovery and brokenness will help me grow in that....help open up a new channel for grace instead of unforgiveness and condemnation.

One of my favorite Trisomy 18 stories is that of Eliot and  his parents Matt and Ginny Mooney. They seem to be an amazing couple.

Since Eliot´s passing, they have had one daughter, one son and have just adopted a girl from Ukraine. They have had a lot of support on their journey. I´m praying that the Lord will raise up the emotional and practical support that we need for however long our baby is with us.

(To read more about Eliot´s life, click here. To read more about this family, click here.)

Putting All Your Eggs In One Basket?

This is our little girl. We haven´t discussed a name for her yet...but I would really like for her second name to be Grace. We´ll see what we decide.

This image was not easy to come by. I finally got this picture on our 4th sonogram appointment because I specifically asked for it. I had had 3 other sonograms done, each appointment getting longer and longer as the doctors began to discover more and more problems. By the third appointment, the room had become filled with 5 or 6 different doctors  (or some kind of medical personal, all women, by the way) looking, whispering, being a little too nosey for my preferences.

At any rate, there was not a single moment where they asked me if I wanted an image of the baby. Maybe they assumed that since there were so many problems I wouldn´t want a picture. Maybe it´s a difference in cultures. Later, a Spanish friend explained to me that it is VERY taboo to talk about death here. I can be kind of obstinant sometimes...but my thought was, "Regardless of her health and development, why wouldn´t I want some kind of image to remember and appreciate this little one?"

During these early days following the Trisomy 18 news, I´ve been reticent to speak with those around me about the situation because I haven´t wanted to be negatively influenced by a limited perspective. I want to stay positive. I want people (the physicians, our neighbors, our family) to see more of who God is as we walk through this process....and yet God has asked me twice through 2 different people if I can really do this if my view of Him is at best hazy and at worst incorrect....

The first asking moment came 2 days ago when our pastor José Luís, who married Ruben and me, and was with me in the ICU after my car accident, and his wife Eva were in town and they dropped by in the morning for a quick visit to talk about this latest challenge. They were here for just an hour...they were gracious and kind and listened until I had said all I had to say for the moment. (Ruben missed the visit because he had worked the night shift and was sleeping.)

When I had finished, José Luís, quite gently asked me if I had considered, in my prayers, asking the Lord for healing....It was a little convicting and a good reminder that God REALLY IS bigger than everything and hindered by nothing.

The second asking moment came today. In response to my latest message to a group of close friends, one of the ladies, who is ont he other side of the ocean and has never met our pastor, asked me if I´d conisdered asking the Lord for the impossible to heal this baby within the womb.

Honestly, among the things I have asked for, I have not really considered asking for complete healing from Trisomy 18 because it seems like such a final diagnosis. She has Trisomy 18 and that is it. She´s going to die and that´s it. There´s nothing that can be done. I´ve believed that way because, from all that I have read, this syndrome affects every cell of the baby´s body, from its very beginnings. Since chromosone 18 carries a lot of important information about the body´s growth and development, having an extra 3rd chromosone 18 confuses her development throughout her entire body.

Until now my prayers, mostly silent and whispered in those very few quiet moments that I have to reflect, have been for mercy, for wisdom and for grace and comfort to make it through this upcoming horrible experience, knowing that it will surely end in premature death....admirable, but a bit narrow, if God really is as big as He says He is.

My question for the pastor was, "How do you ask and truly trust for complete healing and also protect your heart from complete disappointment and devastation if God chooses not to heal the baby here on earth?" "I don´t want be a fool before God and others by putting my hope in something that He is not going to give." The pastor understood and added that he didn´t want to creat false hopes...but simply wanted to remind me of the true character, power, glory and "almighty-ness" of our God. Keep it even in mind! Scripture says, "nothing is impossible with God."

This morning, almost by accident, I found this Scripture which speaks of investing in many ventures....

"Ship your grain across the sea;
   after many days you may receive a return.
Invest in seven ventures, yes, in eight;
   you do not know what disaster may come upon the land.
If clouds are full of water,
   they pour rain on the earth.
Whether a tree falls to the south or to the north,
   in the place where it falls, there it will lie.
Whoever watches the wind will not plant;
   whoever looks at the clouds will not reap.
As you do not know the path of the wind,
   or how the body is formed in a mother´s womb,
so you cannot understand the work of God,
   the Maker of all things.
Sow your seed in the morning,
   and at evening let your hands not be idle,
for you do not know which will succeed,
   whether this or that,
   or whether both will do equally well."  --Ecclesiastses 11:1-6

So, my desire today is to earnestly seek God and pray for His will, which could include the possibility of healing...it must not be ruled out completely because it is within the realm of His power, His goodness, His glory.

While I´m still not sure how to find the balance of praying with great faith without demanding things from God, what I DO know is that I do not know what will happen. So, my prayer investments or prayer ventures must be prayed, not staring into the face of the Trisomy 18 facts, but rather in light of the FULL character of God (not merely selected aspects of His character), holding out my desires loosely and completely abandoning myself to Him and His goodness. 

Would you consider sowing a variety of seeds with me regaring God´s will for this little life? I´ll be happy to have your company on this journey. :-) 

What the Ultrasound Revealed: Trisomy 18 Symptoms

By its very name, Trisomy 18 indicates three (tri) copies of chromosome 18. The amnioscentisis can confirm this syndrome scientifically.

However, before we ever agreed to do an amnioscentisis, it was clear from the first ultrasound that there were some concerns.



What has shown up on the various ultrasounds that have been done include:
-umbilical hernia  (part of the intestine has entered into the umbilical cord)
-Ventricular septal defect (VSD) (a hole in the heart)
-diaphragmatic hernia (a hole in the diaphragm that allows the content in the abdominal cavity to enter into the chest cavity)
-clenched hands....a telltale sign of Trisomy 18

These are some of the visible symptoms created by Trisomy 18 or Edward´s Syndrome, results of the confusion created by the extra 18th chromosome.

Searching for Grace

I found out I was pregnant in September. It´s been a difficult pregnancy due to constant and ongoing nausea and vomitting. (Yuk!)

In November we did the first sonogram. There were some concerns...but the doctors said that we would wait to see how the baby developed. Over the next few weeks I went in for a couple more sonograms. Every time we went, the doctors found some new problem.

I was very resistent to doing a CVS (biopsy) to detect genetic problems, not because I didn´t want the information, but because of the slight risk of abortion. I knew that regardless of the information we discovered through the biopsy, it wouldn´t change our decision to carry the pregnancy to term. So, why take the risk?

In December the next sonogram revealed more serious problems which were strong indications of a genetic problem. The doctor said that if we could rule out a genetic problem we could move forward in considering possible treatments for the problems that had been discovered.

(The main problems discovered are: a hernia in the umbilical cord, a hole in the lower chamber of the heart, a hernia in the diaphragm which has allowed the stomach and the intestine to move upward inside the body, up to where the lungs are, and finally, permanently clenched hands, which are a very strong sign of Edward´s Syndrome or Trisomy 18.)

So, reluctantly we scheduled an amnioscentisis for Dec. 28, just a week ago. The initial results came back on the evening of Dec. 30, just 2 days before the New Year. Our baby girl has Trisomy 18. (We´ll have the full results some time next week.) As the doctor described the sitaution, "it´s very serious." As we left the office, wewere asked to think about and consider what our next steps will be. Among the options put on the table was the option to "interrupt the pregnancy" as they say in Spanish.

What does this mean for us? I believe that ending the life that God initiated inside this womb is up to God, not us. So, we´re planning to move forward, trusting Him. At the same time, this is scarey. As we processed all of this, one of Ruben´s comments was, "We´re not prepared to handle this." My response..."Noone is."

So we search for grace. We breathe in and out. We take one day at a time. Live moment to moment.

In the last month I´ve shared the news with a few close friends who have kept up with the situation, praying, emailing, calling, continuing to ask about the pregnancy, for which I´m so grateful.

One habit that I´d like to pick up this year that has popularized by Ann Voskamp  involves giving thanks daily and looking for God´s good gifts of grace throughout the day, the simple graces that He sends our way each moment. This discipline helps us to slow down and reflect, helps us not to miss His goodness, His ongoing presence in our loves and the overwhelming love He showers on us as His children and it guides us to experience His holiness.

I invite you to come with us on this new journey in 2012 as we learn to see more of God´s grace, moment by moment, as we discover more about our little girl, as we experience more about Trisomy 18, as we glimpse more of God´s character and His will, as we live with joy and grief, as we rise up anew to walk by faith.