Facing your Fears

There are normal fears like spiders and snakes. And irrational fears like sharks in the lake (which I had all while growing up swimming in Lake Michigan). And then there are real fears – the kind that keep you up at night (although truth be told, I have had nightmares about sharks).

These fears usually have to do with loss.

When I got married, my biggest fear was losing Paul. To a car accident or some other tragic event.
When I got pregnant with Mia, my biggest fear was not hearing a heartbeat at an ultrasound.
Once I had Mia, my biggest fear was losing her to some tragic event like choking, kidnapping, or a fall.

I think as you get older, your fears become more real because your world becomes smaller. You start to hear these tragic events happening to friends of friends, and then in your group of friends, and then to your own family. And you realize that you are closer to the possibility of these fears becoming a reality than you ever imagined.

As kids, we are fearless. Not a care in the world. We feel safe. We feel protected. I felt this way all the way through college - one of the reasons behind some not-so-smart decision making! I think I felt this way up until I got married. Then I started to feel this fear of loss. It was as if now I have my own things; my husband, my child, my family. Things too precious to me to imagine losing. And I wanted to protect them.
But I started to hear stories of loss and started to know people personally who went through these losses.

*My friend lost her 3 year old to an act of violence. He was ripped right out of her life. That traumatized me. Really made me lose faith in humanity.
*My mom just told me about a friend’s husband who was killed in a car accident leaving her behind with a 2 yr old and 6 month old twins. Her life changed forever, in an instant.
*And now, after sharing my story, I have heard so many heartbreaking stories of loss. Of moms who lost their babies at 23, 26 or 32 weeks. Of delivering a still born. Of burying a 1 month old.

These are real stories. They are stories that become a measurement in life – life before the loss and life after the loss.

But we can't hide from our fears. In fact, there is something to be said for facing your fears head on. I have seen this on so many talk shows – of people confronting their fears of clowns, snakes, heights or whatever. Many therapists say that it works when done correctly. I think its because you figure what it is you are afraid of exactly and see your life as it can be after that fear.

So before my ultrasound on Friday, I decided to see what I was so anxious about. And it was that I wouldn’t hear Summer’s heartbeat. That the technician would move the ultrasound wand around and around on my belly and not find a heartbeat. That the baby would be lying still. Too still. My gut reaction was to shake that idea out of my head. But I decided to allow myself to ride that train of thought a bit further. Ok, no heartbeat. What would I do? How would I tell Paul? What would it be like to come home and know that this journey had ended?
And then… How long would it take to get pregnant again? When would we be ready? After thinking those last 2 thoughts I realized…life goes on. Even in my thought process, I eventually came to how do we move on?

And that’s life. We press on. We move on. We keep going. Maybe through tears. Maybe through screams of pain but we still do it. We breathe. We walk. One foot in front of the other. It’s what my friend who lost her child does daily, sometimes she has to force herself to breath from minute to minute I’m sure, but she gets up. Makes breakfast. Keeps going.

Once I sort of walked down that path of no heartbeat, I realized that it wouldn’t be the end of my world. It would be tragic. And horrible. But it wouldn’t be the end. And it could be worse. It can always be worse.

Don’t misunderstand; I’m not saying that we would get over it and move on. Not that simply anyways….but in a messy, tear-filled, pain-filled, brokenhearted way, we WOULD incorporate it into our lives …and move on.
It’s what we are made to do.

I didn’t have to face the fear. Summer had a heartbeat. But there are so many people who face their greatest fear everyday. Losing a spouse. A best friend. A child. And there are terrible ways that these events happen. The world is not a safe place and we are not exempt from these tragedies. But we can’t live in paralyzing fear of them either. It doesn’t work because then we are not living; we are hiding.

I can’t protect my family. I can’t ensure that no one will hurt Mia. That Paul won’t get in a car accident or that Summer will have a heart beat next week. I don’t have control of those things. God does but He doesn’t promise that he will protect us from losses either. God promises to be with us. To carry us through the pain. Through the loss. That’s just how it is. And the sooner I can accept that and give Paul, Mia and Summer back to God instead of trying to hold them in my own protective custody, the sooner I can rest in the trust that His presence is all I need.

“My Presence will go with you and I will give you rest.” Ex 33:14

And that Presence cancels out the fears, comforts during the times of loss, and provides the peace in spite of the circumstances.

If I have to come face to face with my fears, I sure am glad that I don’t have to do it alone.

Update

Today's appointment was a laboring 3 hours long...

We'll start with the good news...
Baby b continues to grow slowly enough that she is not causing harm to Summer. In fact, my risk for pre-term labor has gone waaaaay down! The cardiologist came in and checked every detail of Summer's heart for 45 minutes - everything looked good. Summer was squirming around quite a bit so she does want me to come back at 28 weeks for another fetal echocardiogram but everything looked good so far - no stress, no fluid, no signs of heart failure.

Then the doctor came in and did a level II ultrasound checking all the other details on Summer - her hands, her toes, every organ, every bone. It's amazing all the things you can see nowadays. For the most part, she looks great. She is measuring at 20 weeks which is exactly where she should be.

And the roller coaster continues....the doctor did find a pocket of fluid on Summer's brain. This could mean anything and could mean nothing all at the same time. It is a sign for several trisomies including Trisomy 18 which pretty much means she would not live past 24 hours after delivery. That's worst case scenario. There are typically other markers for Trisomy 18 - one of them is having heart issues which Summer does not have. The other ones will be assessed around 30 weeks. The pocket of fluid could be a sign of other other trisomies too but it could also be something that disappears on its own - so of course the later is the prayer request. It has nothing to do with brain function itself (ie doesn't cause brain damage) and is more indicative of a trisomy. (FYI a trisomy is when there is a 3rd chromosome in your cells where there should only be two. For example, Down syndrome is also called Trisomy 21 because individuals with Down syndrome have 3 copies of the 21st chromosome in each of their cells instead of 2.)

So...good news overall! Thanks for your prayers and your support! Keep them coming! :) While we are still riding the roller coaster, we are feeling good about where we are headed!

love jenni and paul

D.U.I.

I’m not cynical or even sarcastic when I say that I wasn’t surprised when the doctor told me at the ultrasound that they were looking for chromosomal anomalies. That I have a 10% higher chance that Summer will have some type of disability. As opposed to the .01% chance that I would have had otherwise (if they weren’t identical twins and if TRAP wasn’t an issue).

I wasn’t surprised because I wasn’t bracing myself for the news.

It’s kind of like a drunk driving accident. The statistics show that the person with alcohol in their system, is typically the one who walks away from the accident unscathed. Apparently it’s attributed to the slower reaction time that this person has – they don’t brace themselves for the collision and their body absorbs the impact instead of resists it. And somehow, that prevents them from the most fatal of injuries.

That’s kind of how I feel. I have been bracing myself every week to hear Summers heart, to see baby b, for the possibility of the surgery etc. And all it has done is create a brittle framework for my soul. One easily crushed by any bad news. I think that’s where anxiety comes from – bracing yourself for the bad news while at the same time hoping with all your might for the good news. The opposing emotions just create a volcano ready to erupt.

I have really been trying to learn the art of that peace, that rest that I have written about in the past. To not brace myself. To not expect the bad news. Or the good news for that matter. But instead, to pray for the good news, and rest in the peace that that is all I can do and the rest is out of my hands.

So when they starting naming various trisomies, conditions, and possibilities, I didn’t start crying. I didn’t feel nauseous. I just paused, prayed, and listened. Admittedly, I probably was a bit in shock and my mind might have allowed me a few moments to not process the information in an effort to protect myself.

Maybe because of my profession or maybe because of the conscious effort to keep my emotions in check, my rational mind took over. And I started asking questions...

What are the most common trisomies? Are they the kind that is compatible with life or the kind that means I will lose her a few days into her life? Is there thickening of the nuchol folds in her neck or any holes in her heart, both of which are indicative of Down syndrome? Are there any indications that her hands or feet are malformed, both signs of Trisomy 13? What is the biggest concern we are facing?

Truth be told, I was more comfortable with this topic than all the other ones we have been faced with up to now. Maybe because it’s what I do on a daily basis – work with families and individuals touched by disabilities. It’s something we consider a privilege to do. I knew what questions to ask, what things to consider, and what emotions to expect.

But in the background, I felt God saying to me “just because this is your arena, doesn’t mean you don’t still need me. My peace. My rest. My control.” And that’s so true. Just 1 week after saying I give up, I give it to you, God because there is nothing I can do, I was ready to take the reins back again. I thought, ok, this part I can handle. This part I know more about and can figure out on my own. But I have done that enough times to know that the end result is coming back to the same place. The same place of exhaustion, confusion, lack of peace. So why continue to go in circles?

I need to deliberately give back those reins. To just sit at His feet and thank him for being in control. For reminding me that there is no need for me to try and do it on my own when the very One who created Summer is watching her every move. Is aware of her every chromosome and has created her exactly as she should be. How can I compete with that? Why would I want to?

So I’m trying not to brace myself. And to not resist the trials because I know they are going to come. I’m going to get drunk on the peace from God that will allow me to absorb the impact of life. It doesn’t mean I will walk away unscathed, unscarred or unhurt. In fact, I will probably feel all of those things, but they won’t be fatal injuries.

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.” James 1:1-4

Faith in Numbers

The first time I felt Mia kick, I was 20 weeks pregnant and reading a book in bed. Paul was in Canada on a fishing trip and I noticed a fluttering in my stomach. Like butterflies. I didn’t think much of it and then it got stronger, and I put my hand on my stomach, right over my belly button and sure enough was given one strong kick. I called Paul and told him and while I’m sure he was excited about it, I don’t think he really understood how exciting it was until he was able to put his hand on my belly and feel it himself.

At about 30 weeks, the doctor told me that I should feel around 10 kicks every hour. And that if there was a long time without feeling kicking, to call him. My mom laughed when she heard that and said it’s amazing that we all survived without the knowledge that they have now.

I felt Summer kick this week. It was just a little tiny ‘bump’. But it was her. And it made me smile. It was as if she was just reminding me that she’s there, she’s focusing on growing, and, well maybe it was also her letting me know that I shouldn’t have had that cup of coffee that morning. (I almost always drink decaf, I swear!) Because I get to see her weekly on the ultrasounds, I see what a feisty little thing she is already -constantly twirling and squirming and kicking her tiny little arms and legs.

But then…I didn’t feel her for a few days. And I got nervous. And then started to panic. And then…looked it up on the internet. Yea, you’d think I would have learned my lesson about that by now. As I was getting ready to call the doctor, I felt her kick again. Relieved, I put the phone down.

But right alongside her kick, was God nudging my heart.

Really? You are going to put your faith in the number of kicks? Haven’t I shown you that I will carry you through this? Whatever the outcome?

Humbled, I began to think about how often I do that. And it always seems to be a numbers game. Yes, I thank God for providing a job but I still find comfort in watching my savings grow, or get stressed when we dip into it. Yes, I believe that God will protect me and yet get anxious as I read the statistics that threaten my unborn child. There seems to be a point of just a little more, or just a little less, and then I will be safe. But that is never the case. Just look at how many people have their hope in the stock market. I was shocked when I read about how many suicides there have been after stock market crashes. It’s truly heartbreaking – and it’s because they had their faith, their hope, in the numbers.

I should have known better. God doesn’t work like we would expect Him to. In fact, the Bible is full of stories of Him doing things the opposite way that we would do it. David and Goliath. The walls of Jericho. These are all stories of overcoming the odds that can only be attributed to God. One of my favorites is the story of Gideon.

Gideon, the man God called a mighty warrior even as he was hiding out, was scared of his enemies. God finally convinced Gideon to assemble an army of Israelites to face their enemy. I am sure Gideon was pleased and surprised when 32,000 men responded to his battle cry. I imagine the strength of their numbers was a comfort to this less than confident soldier.
And then God told him to cut the army down in size. Then cut it again. God cut the army's numbers from 32,000 down to just 300. Contrast that with the enemy troops described as "thick as locusts." I can only imagine what Gideon was feeling. He had to think that more was better, that surely having a large army to count on was a good idea. But God had his own plan. And sure enough, they won the battle.

Hmm. Point taken. Sometimes I feel like “Ok God, I get it. Can we take a break from the life lessons for a few days?” I mean is it really necessary to turn everything into a teachable moment? Everything?

As the child in this relationship, I have that perspective. But as a parent, I realize that it is my job to take advantage of every teachable moment with Mia. Because that’s how she will learn to develop the character traits I want her to have – compassion, kindness, goodness. It’s how she will learn what is appropriate and what is not. It’s how I can guide her on the path to becoming the woman she is created to be. And I do it because I love her. I love her too much to let her grow up without any guidance.

So why would God, my very Creator, be any different? Didn’t He create the model of parent/child? Of course He is going to use every teachable moment to help me become the woman He created me to be. In fact, that’s His only goal with me. For me to get to know Him better by drawing close to Him in my every life situation - both the good and the bad.

Sometimes, just sometimes, I am too exhausted to follow thru on a teachable moment with Mia and I might let it pass. Truth be told, it can be exhausting to utilize every single one that comes up. So my human nature thinks, God can’t you just give me a break? Aren’t you tired of teaching me something all the time?

But he is not going to get tired of teaching me – He IS patience. He is not going to give me a break because he knows it’s not what’s best for me. Where I fail as a parent, He never will. Does he bring these troubles upon us? I don’t think so. He doesn’t seem to rescue us from all of them either. But thankfully, he doesn’t sit back and watch us struggle through them alone. He carries us through, provides the strength, the comfort, and the place of rest.

I will continue to count Summer’s kicks but I won’t put my faith in them. And as I gear up for an ultrasound this Friday, complete with a fetal echocardiogram, I am trying to remain wrapped in His peace. Knowing that that’s the only place I can put my faith – not in numbers and not in medicine. I thank God for every kick. And thank Him for using all the teachable moments in this situation.

It just means that, He loves me too much to leave me the way I am.

And I’m ok with that.

Heart of the Sea

Dear baby B,

Before I even finished the salutation, the tears formed. I’m not even sure what they mean anymore – the tears of frustration have dissolved into resignation, the tears of fear have melted into stillness, and the tears of confusion to acceptance. I think today’s tears are for finality. For this letter, which in essence, is saying goodbye. I will still see you on the ultrasounds but I think this is separating my emotions from the cells on the screen. Your soul is no longer there anyways. It just took me a while to accept that.

The sadness, that’s still there. It’s the sadness from losing you at 10 weeks. Those tears are ones I know well. They are justified tears. You were my baby.

You did nothing wrong. You did just what you were created to do. Nature took its course and you got to meet your heavenly maker early. Too early in my book, but that’s irrelevant.

Thank you for growing slowly enough that you haven’t brought harm to your sister who so valiantly and unselfishly pumps her heart for both of you. I know neither of you had any conscious effort or control into these scenarios, but I still want to thank you for that.

You brought confusion and chaos to my life. During a time that was already a bit chaotic. But you know what, I think that’s what makes us alive. The chaos. The drama. Life. Thank you for the craziness you brought into my life. I mean that sincerely. You also reminded me of how much I love to write. How therapeutic it is for me. How words can touch other people as they deal with the dramas of their own lives.

You were a dream of mine – twins. But dreams change. They get bigger. Get crushed. Or remain a dream. Sometimes we don’t find out until the end of our lives how the dream turns out.

I imagine that throughout your sister’s life, I will look into her shining face and think of you. Maybe it will just be a fleeting thought of what it would have been like to have 2. Or maybe it will make me send up a prayer of thanksgiving that everything worked out ok. Most likely, there will be a twinge of sadness that pricks my heart even as I experience the joy of Summer.

Although I thought I’d never get to meet you, in a strange way I will. Your identical twin will have your face, your smile, your laugh.

We decided to name you because even though you left us at 10 weeks, you have still been a huge part of this journey and baby b just doesn’t quite fit anymore. It didn’t take us long to find a name that fits you. We knew what we wanted your name to mean. What you mean to us.

Cayden Marie.

That’s your name, baby girl. Cayden means heart. You have made me think about what it means to have heart. What it looks like to have heart. You have made me want to have heart. Cayden also means companion. I think both of those fit for what you have represented to us in the last 20 weeks.
We will be your heart. You will be our silent companion.

Marie. It’s my middle name. It’s part of your grandma’s name and now it’s your twin sisters middle name. It means of the sea and I can’t think of anything that goes better with Summer than the sea. You are already a forever part of our lives and with ‘Marie’ being both Summer’s middle name and mine, it’s a forever reminder of you.

We will see you one day and you will meet your sisters, Summer and Mia. Until then, precious little life, our heart of the sea, know that you will always be loved.

love,
mommy

A goodbye letter

My dad’s biggest piece of advice growing up was ‘write a letter’. Seriously – that was his answer for everything. When they cancelled my favorite tv show, he said ‘write a letter’. When things were crazy at work and I felt people were being treated unfairly, he said ‘write a letter’. Whenever I had any complaint about a policy or other issue he said…you guessed it, ‘write a letter’.

So to take my dad’s advice, today I am going to write a letter. It’s actually a goodbye letter. A letter to my unborn baby. My baby b. It’s the only way I know how to separate my emotions from the baby we lost at 10 weeks, whose soul is in heaven, and the baby that we see on the ultrasound. And so, I am writing baby b a letter.

I don’t think it will be the last letter to her. We are halfway through this journey (assuming I go full term, which I probably won’t) and I imagine things will change in the next 20 weeks, just as they did on a weekly basis up to now. But this letter is signifying a turning point. If only in my mind.

This journey has been one of conflicting emotions. Of celebrating a life while at the same time mourning the loss of a life. Of looking forward to seeing growth in baby a while at the same time holding my breath for lack of growth in baby b. Of being both excited and anxious. Full of faith and full of doubt.

This letter signifies the beginning of embracing the one emotion that can calm conflicting emotions. Peace. The kind of peace that can only come from God. The kind that comes only from letting go. From acknowledging that He is in control. And I am not. And realizing that that is actually a good thing. I say the beginning because I believe it’s a process. I don’t know how to just give it to God and never take it back. ‘It’ being the emotions, the fear, the doubt, the anxiety. But I think if I do that a little bit each day, and just remain conscious about that desire, then I will get better at it. And God will give that peace. As a covering.

I see it as a blanket. The kind that you swaddle a crying baby in so tightly that they can’t help but be soothed. Be comforted. To the point of calmness that they fall asleep. I remember telling Paul once that I felt bad that every night I would fall asleep while I prayed. He told me that he believed that sometimes God gives us peace in the form of rest. Maybe that’s why when I wake up in the middle of the night with my head spinning with scenarios, I can start to pray and soon I am asleep again. It’s that reminder that I am not carrying these burdens alone.

This letter signifies a change in me. In my heart. In the way I view her, God, and myself in this journey. I see her as my baby. Nothing more, nothing less. I see God as in control. I give up. There is nothing I can do anyways.

And I see myself as a mom.

To Mia. To Summer. To baby b.

I am both strong and weak at the same time.

And that’s ok.

So now, I turn my thoughts to her. To what I want to share with her. What I want her to know. I think this change in my heart means that the term ‘baby b’ no longer encompasses what she means to us. She needs a name. That we can cherish for life.

If I asked my dad how I could tell her that name and all the other things I want her to know, he would say…write a letter.

Thank you

Throughout the past month, we have received so many words of
encouragement. It’s been a blessing to have these words to go back
to as well as the people behind them. I wanted to share some of them
in a spirit of gratefulness for the support you have given our
family.

Here are just a few of the stories, perspectives and encouragement that we have been blessed with from so many of you….

**It occurred to me that Baby b kind of mirrors my relationship to Jesus Christ. Just as Baby b is nurtured by Summer's heart, I need God's heart to nurture mine. What a beautiful reminder that we are nothing without Him. Maybe the "b" in baby b stands for Beautiful Reminder.

**Someday Summer will want to know how special her and her sister are. You can let her know that she tried to help baby B and in the opposite way, her sister did all she could to save Summer’s life. So I guess you can't have one without the help of the other even if the help is by not growing so Summer can survive. Just a positive way to look at it:)

**I wish there was something magical I could say that would make you feel better, but what I'll offer instead is to keep you in my thoughts and prayers. And I agree, there is nothing better than a little Summer in the winter.

**I feel your pain and appreciate your willingness to share this experience with us. I can relate to searching the internet for answers, weighing the odds and still being left with so many questions. I pray for Summer's health but, also for you to have peace with your pregnancy. Every good and perfect gift is from above...(James 1:17)

**No matter a person's degree of faith, family support, or courage, this is a really difficult and painful scenario for you guys to walk through. So many of the sentences you wrote are made up of words I spoke 7 years ago when faced with a similar situation. I don't know about you, but I remember that time being physically exhausted from the pregnancy, emotionally tired from decision making and spiritually stretched thin. It was difficult for those around me to appreciate what it was like to anticipate the birth of a baby while grieving the loss of another. It is so complicated and they are completely intertwined. While I am still not at the point where I can purely rejoice that this happened in my life, I do not wrestle with it as I did...and I will pray the same for you! Just a few years ago, I had some quiet time with God. I had been encouraged to get out anything hindering my relationship with Him. In the quiet, I heard the words, "who are you to hold a grudge against the God of the universe." How silly I was for attempting to reject him because it didn't go according to my plan...and while I still can't answer "why", I stopped asking. Now I'm okay with the idea that I'll probably never know.

**I remember when I lost my brother, someone who understood grief told me there was no "right way" to grieve - no timeline. I have no way of telling you what you "should" do, but i don't think anyone else can tell you either. As to "getting past" - I didn't want to move on/past him. I had to incorporate him and the loss into my life. I see you doing that. "Spending time" on her is important for your grief process. And if you know of people who have gone through this kind of loss, they will be the ones who will help you most.

**After reading "You've Gotta Have Heart," I have to say, Baby B was created by two hearts loving each other. Baby B was sustained by your heart feeding her. Baby B is right next to Summer’s heart. No matter what anyone says she is missing, Baby B is perfect in heaven and has had many hearts contributed to her short life. She will always be your baby… your baby that was taken too early. Love her, miss her, and remember her as your deeply heart-felt baby . Again, thank you for sharing your life in such an intimate way with the world. I will certainly be praying for all of you.

Thank you for your love - we can feel it!
love jenni & paul

Dry Land

I heard of an experiment once where scientists placed a group of mice in a tub of water. The mice were not able to swim and after struggling to tread water for several minutes, they gave up and drowned. Then they took a new group of mice (obviously) and put them in the tub of water. This time, however, after 30 seconds or so of letting the mice struggle, they picked them up and gave them a break. A while later, they put this same group of mice back into the tub of water.

What they found was that these mice did not give up after just a few minutes of struggling. In fact, they continued to tread water for hours. They were saved once and had faith that they would be saved again.

Ok, not sure how much the mice really had faith, per se. But I get the point of that experiment. And I understand the results. The mice in the first group had no reason to believe that they would be saved. Those in the second group had no reason to believe that they wouldn’t be saved.

Sometimes I feel like those mice in the second group. Treading water for hours. Struggling to keep my head afloat. Trying not to drown in whatever circumstances are surrounding me. But then I remember that I have promises, that I know to be true, that can save me.

Here are some of my favorite promises lately…

A friend loves at all times, and a brother is born for a time of adversity.

My friends, old and new - even strangers- and my family have really been encouraging and supportive of us through this craziness. It’s a great support system to have and as much as facebook is not my primary way of communicating with friends, it’s truly allowed friends from the past and others to reach out and share their stories as well.

Do not be anxious about anything but with prayer and thanksgiving, present your requests to God and the peace of God will guard your hearts.

I have so found this promise to be true – rather than be anxious before each ultrasound, I ask God for that peace that comes only from Him. And by cushioning my prayers in words of thanksgiving, it keeps my perspective focused on all the amazing blessings in my life instead of the alternative.

He is before all things, and in Him all things hold together.

This was the verse we read at our wedding. To me, it’s a reminder that God is in control. Not only did He create it all, but He literally holds it all together. I’ve been singing that familiar childhood song to Mia and I have to admit, I think it’s more impactful on me than it is on her…

He’s got the whole world in his hands,
He’s got the whole world in his hands,
He’s got the whole world in his hands,
He’s got the whole world in his hands.

I made up the second verse…

He’s got your little baby sister, in his hands…
And so on.

These promises bring me comfort. They calm my heart. I think they might even lower my blood pressure. And when I stack these promises, one on top of the other, I can firmly place my feet upon them. And when I do, I look around and see that no longer am I near drowning. I’m not even struggling to keep afloat.

In fact, I am on dry land.

The Roller Coaster Continues

I was told recently that when I go into labor, I will need to decide if I will take Baby b’s body home and have a burial for her, or if I will donate her body to science.

What?!

What kind of question is that? Even as I write it, my mind can’t quite comprehend the absurdity of it. It’s the kind of question no parent should be asked. It’s the kind of question that I don’t even know where to begin to answer. I guess that’s why they told us at 15 weeks, so that we would have several months to think about it.

(Although, it would be nice not to have to think about that for the next several months.)

If you’re wondering why so many posts have to do with Baby b instead of Summer, the daughter I will actually have to love and cherish, I’m asking myself the same question. It’s a bit exhausting to continue to circle back to the same thing. And it’s truly amazing how many dilemmas, even if they are just in my mind, that Baby b has brought to us. Of course there are the ‘real’ ones – her impact on Summer’s life and the entire pregnancy. But there are also so many emotional dilemmas that it seems she takes more of my focus than Summer does.

Like I have said before, we already mourned Baby b. We already dealt with losing her. So we had no intention of naming her let alone having a burial service for her. And yet, we can’t move past her because every week, there she is. Every week, as much as Summer’s health is who we are checking on – those answers all depend on what Baby b is doing. And so, the focus is still inadvertently on Baby b.

And now this question? I don’t even know where to begin to process.

Initially my gut reaction was that we would donate her ‘body’ to science.
I put body in quotes because up until this point, her body is a mass of tissue. There are a few distinct parts, yes, but it does not resemble a human body. Yet. However, the pics online (that I am no longer allowed to look at), do show a human body. Disturbing, but looking very human.

So if she looks like that, like a baby, do we bury her? What if she is just a mass of tissue?
Should our decision really be based on what she looks like? (Especially when our whole profession is based on the idea that everyone is created in God’s image regardless of what they look like, or their cognitive/physical ability etc.?)

Paul says that for him, it will be based on the size.
But when is she big enough to bring home?

I’m all about being an organ donor and saving lives. (Not sure that is relevant in any way but it kind of makes me think of that). If donating her little body would allow research to take place that would help determine how this happens – maybe that would save lives in the future. Even to put this case on the internet to allow other moms to know that it’s possible for Baby b to grow slow enough not to harm baby a (assuming that’s how my case will end up). Then it would be worth it to me.

But how will we know how we will feel in 4 months? Can we even make that decision right now? How will we feel when I deliver her and see her? Hold her? See her next to Summer and have all those feelings of having twin girls come back? Will I be so willing to donate her body to science then?

I sit here and just shake my head. Tears stream down my face. My fingers ache from typing so hard, clearly this topic has brought out some of the frustration I thought I had already released. They told us about this circumstance a few weeks back. It wasn't until this week that I really started to process what it means and begin to feel the emotional turmoil of the decision. It just seems that we can’t get past Baby b. And it makes me feel bad that I want to get past her. I want to focus on Summer. On getting all the baby girl clothes back out and getting the bassinet ready. But I don’t dare just yet.

Someone told me that I should just not see her (Baby b) when I deliver. I wish that I was that type of personality but I can tell you right now, it will be the opposite. They will probably have to pry her away from me because I will be so intrigued by her. That this tiny little mass has turned my whole world upside down. And not all in a bad way. She really has brought perspective to my life, re-ignited my prayers and hopefully has touched other people out there reading about our experience as well. And whether or not I want it to be this way, Baby b has consumed most of my thoughts in the last several weeks and I imagine she will continue to do so through delivery. I don’t think I can pass up the opportunity to ‘meet’ her. Maybe it’s because she will only be part of me for the next 20 weeks. At most. Then never again on this side of heaven.

Exhausting. That’s the word that describes what it’s like to go through the mental exercise of deciding what to do with our stillborn baby. That never had a heart. That may or may not be more than a mass of tissue and body parts. That may or may not resemble a baby. And what do you do if you bring her home? Actually have a service? A burial? The circle of maddening questions continues.

Many people have been telling me to just focus on Summer.

I agree.

I just have to figure out how to do that.

You Gotta Have Heart

Acardiac. What a cold term. It literally means, no heart. Maybe that’s why it bothers me so much. Heartless.

Acardiac twin. That’s what she is referred to now all the time. No more baby b. No more Summer’s sister. Just the acardiac twin. The heartless twin.

I think it bothers me because of what the heart means to me. Yes, its literally the lifeblood of someone but in more ways than just sustaining life. I think being called heartless is one of the most hurtful things you can be called – and that’s because in my definition of heart, it’s what makes you alive. Not a living being. But ALIVE.

The heart is the only organ in the body that is used to describe such a variety of ideas and feeling besides being an organ and a shape. And there are so many phrases that we use with regard to heart; each with a slightly different definition.

Just to name a few….
*after one's own heart
*break someone's heart
*by heart
*from the bottom of one's heart
*have a heart
*near and dear to one's heart
*wear one's heart on one's sleeve,

Here are some definitions I like…
*the center of the total personality, especially with reference to
intuition, feeling, or emotion
*the center of emotion, especially as contrasted to the head as the
center of the intellect
*capacity for sympathy; feeling; affection
*Spirit, courage, or enthusiasm
*the innermost or central part of anything
*the vital or essential part; core: the heart of the matter

That’s what heart means to me. Having heart is about having passion. Compassion. Love. Courage. Faith. Stubborn determination. It truly is the center, the very core of who we are. Our heart. It’s our enthusiasm, our emotion – where both our deepest pains and greatest joys reside. If you’ve ever had a broken heart from losing a loved one through life circumstances, death or otherwise – then you know the pain really is in your heart. It actually hurts on the left side of your chest; where the very organ that is pumping blood is located, is also the site of the emotional pain of a broken heart. It’s not just a romantic notion. Not just a theatrical, literary term – broken heart. It comes from the fact that the pain really is where your heart is located.

Working with people with special needs on a daily basis, I see what it’s like to have heart. My friends with Down syndrome have more stubborn determination than I have ever had. (I can just be plain stubborn). The parents of many of these babies have more courage and faith than I have seen elsewhere. And the entire world of special needs demonstrates more love and compassion than I have witnessed in the general population.
These families are faced with challenges that they respond to… with heart.
Individuals with special needs face their everyday circumstances… with heart.

I did a quick search of the Bible to see what it had to say about heart. There were 725 references! I didn’t read them all but got a general sense of the importance of ‘heart’ in more ways than one.

There are many references to specific people’s hearts; Pharoah, Saul, Hannah, Judas, even God’s heart, just to name a few.

It mentions the many ways our hearts are involved in feeling and action;
Hearts of desire, love in your heart, obstinate heart, hardened hearts, knowing in your heart, seeking with all your heart, taking heart, fearful hearts, the eyes of our hearts etc.

But the main principle was about where to focus your heart. What to keep your heart engaged with, in order that you, through your heart, are not led astray – into fear, discouragement, disappointment and all the other slew of emotions that comes with having regrets. It was about staying the course with knowing right versus wrong. With choosing right versus wrong. It reminds us to keep our hearts aligned with God’s purpose for our lives – to know Him, to love others.

Here are some of my favorite verses about heart….
**Men looks at outward appearance but God looks at the heart.
**Where your treasure is, there your heart will be also.
**Love the Lord your God with all your heart with all your soul with all your strength and with all your mind. (Side note – it’s interesting that when Jesus was asked what the greatest commandment was, he answered with this verse – to love God with all your heart. And to love your neighbor. I think that speaks volumes about how powerful our hearts really are.)

Life is all about heart. And not the kind that pumps blood through your body. While you need that to be considered alive, in my definition of being alive – it’s feeling alive. It’s that feeling of being on a rollercoaster (yes, even the kind I am currently on). When you laugh so hard your stomach hurts (or you wet your pants). When the pain of losing someone you love makes it hard even to breathe. It’s the adrenaline rush after completing something that takes courage – running a marathon, giving a speech, getting help when you need it, giving birth.

Being alive is feeling all of these things. And to feel them, you have to have heart. What that heart is full of is what determines your actions – it might be a heart full of compassion that drives you to help people. It might be a heart full of insatiable desire to learn – that’s what drives you to become a CEO, or continue schooling. It might be a heart full of maternal instinct which makes you want to raise a family or be a teacher. It doesn’t matter what your heart is full of as long as it is full. (Caveat - as long as it's full of life-giving traits and not deceit, jealousy etc.) Full to the point that it drives you to action. To do something. Even if it’s just the next load of laundry for your family, or giving those extra clothes to the homeless, or getting on your knees for that family member that needs help. Where your treasure is, that's where you heart is also.

I was particularly impacted by all the verses that talked about God changing, touching someone’s heart. While I don’t pretend to know why he hardened Pharaohs heart, or why he softened someone else’s heart, I like the fact that He is close enough, involved enough in our lives to touch our hearts. It’s good to know that He can change us. When we are powerless (which if we are honest, we usually are) He can change that. He can give us the courage to get help for the failing struggle with addiction. He can remove the guilt from our past. He can open our eyes to see beyond ourselves and to the needs of the world around us. He can give Summer’s heart the strength to pump for both her and baby b.

It’s important to me to have heart. To have passion. To have compassion. To feel – both the pain and the joy in life. I want to live my life with heart. I don’t know about baby b, but I think Summer has enough heart for 2. And I just can’t wait to meet her.

Quick update....

Today's appointment was another confirmation that your prayers are working! Summer looked great - nice and strong! Baby b was there but has grown slowly in comparison to Summer's growth. They said we are not in the clear yet but definately on the path towards that! I go back in 2 weeks for a level II ultrasond and an EKG of Summer's heart to make sure she is not under too much stress, pumping for both babies.

Thank you for your prayers, comments, texts and calls. We appreciate all the support! Thanks for reading the blog - it is amazing how helpful it has been for me to get my thoughts out on paper. And the emails I get from people around the world with their personal experiences with twins and other pregnancy complications has been impactful for us as well.

We will continue to share our journey as we navigate through this pregnancy, the thought processes that go with it, and the emotions that come with this pathway as well.

Blueprint

It’s funny how you can allow yourself not to think about certain things. To not delve deeper into a topic that makes you uncomfortable. Or makes you feel like you are doubting something that you are ‘supposed’ to believe. For me, I am an extremist. I either have to ignore it completely and not think about it and go into my own version of denial, or I have to do the opposite and learn everything there is to learn.

But sometimes, its nicer, easier to go the denial route. To ignore the question so completely, it’s as if the situation doesn’t even exist. I do this every time it rains. I honestly don’t want to know if my basement flooded so I refuse to go down and look. (Of course, my husband does but I’d prefer not to even know.)

But some questions are unavoidable. Sometimes, they keep resurfacing. Like the one haunting the background of my pregnancy. I come face to face with it every Wednesday at 9am. When the ultrasound technician comes in, turns off the lights, puts warm gel on my belly, and suddenly I see my babies on the computer screen. The question surfaces once again.

Was it a life?

There is Summer, kicking, turning, and generally dancing around showing me her strong heartbeat and developing body. I see her brain, her heart, her limbs – each measuring as they should at 18 weeks of age. Her stomach, her hands and fingers, her feet and toes – all shown clearly on the ultrasound. And then, there, sort of hiding in the background is baby b.

I told my grandma who recently lost her husband, my grandpa, that he was the first one to meet baby b. We both smiled and felt good about that sweet notion of them together in heaven. But after I hung up the phone with her, I asked Paul once again, “Do you think she really is in heaven? Was she really ever a life?” I nearly whisper the question – I feel bad just thinking it, let alone speaking it out loud. But Paul and I have had this same conversation several times. And we still don’t quite have an answer.

I have always believed that life starts at conception. But I have never really thought about it. I mean really thought about it – about what defines life. What has thrown me off is that baby b…has no heart. The fact that they call her the ‘acardiac twin’ reminds me every week that she doesn’t have a heart.

Can you be a life if you have no heart? If you were never going to develop a heart? It’s one thing to have developed a heart but it never started beating. Then maybe I could reconcile that it was a life but didn’t develop as it should. But baby b….never had a heart. Is a heart what defines being a life?

So I did some research to learn about when people think life begins. I wasn’t looking for prolife/prochoice type of information. I truly just wanted to learn the scientific aspects of a baby as it develops. (Although, I have to admit that I had to hunt to find somewhat objective information that wasn’t pushing one side versus the other.)

Here is what I found…
Over the centuries, they have looked at several bases for determining human life; viability, brain waves, movement, and heartbeat.

Viability:
They used to think that a baby’s life was determined by the age in which it was able to sustain life outside the mothers’ womb. But it turns out that that age changes based on the medical interventions available. 40 years ago it was 30 weeks, 20 years ago it was 25 weeks, now it’s 20 weeks. The babies aren’t changing; it’s the medical know-how that changes.

Brain Waves:
We don’t know when they start but they can be measured at 6 weeks.

Movement:
These are first seen around 6 weeks.

Heartbeat:
This starts around 3 weeks.

So how do we determine when life starts? There are religious views that base it on the beginning of the soul but that is immeasurable which makes it hard to prove. And scientifically, each of the aforementioned developmental stages seem important but how do we decide which is most important? A heartbeat? Brain waves? Breathing?

So they began to look for a single event, a time that could definitively say that before this, you did not exist, but after this…you did.

And what they landed upon was…conception.

Before conception, you did not exist. It is at that moment that the unique combination of chromosomes that define you first came into existence. This is what differs from another group of cells that replicates with no purpose (ie. a tumor). (The “they” referred to above, is the medical profession over the last few centuries – before legal, government and state legislation got involved in determining life).

Hmm, that’s interesting. But it doesn’t quite answer what it means if the baby, that chromosomal blueprint for a life, didn’t include a heart in the plans, (something undeniably required for life). But it does give me a sense that she was a life, she was supposed to be a life.

Actually…I don’t know. I know I’m supposed to believe that she was. And I want to. And probably will if for no other reason than I’d rather believe that than the alternative. But I will admit that it’s hard for me to comprehend that. And that’s why Paul and I go round and round on this topic – both of us have a hard time with the acardiac part. Life begins at conception. Yes. But it needs a heart to be a life. Yes. So did she die? How could she die if she never had a heart in the first place? And the unending loop continues. (Side note: I told Paul that I would start this blog but that I wouldn’t be PC. I would write how I feel. It’s the only way I know how to write.)

It bothers me. This whole heart/no heart life/not life issue. It gives me a stomach ache to think about. It brings tears to my eyes. Of frustration. And since I have given it so much thought, I am forever unable to go back to the bliss of denial. Of ignorance. And that’s ok. I might have to accept that my thoughts are not God’s thoughts, my ways are not His ways. My sister in law sent me a bible verse that read “Trust in me, not in your own understanding.” That’s hard for me to do. It’s easy for me to have faith in the big things, creationism, Jesus, even miracles. But the little things. The things that seem like they should have a definitive answer – those ones trip me up. Especially when it deals with something so personal. So raw. So deep in my core. My own child.

I guess that’s what faith is. That’s what trust is. It’s the hard part, but I think it’s the part that gives you peace. And through this search for answers, through the scientific and faith parts, I think I do believe that she was a baby. A mass of cells that had the blueprint to become a life. My baby. Instead, she met her creator first. And my grandpa. And that brings me peace.

Butterflies

My father in law recently told me about the butterfly effect. Of course I had to look it up on the internet to see if it was true. And sure enough, it said that if the conditions are right and a butterfly flutters its wings, it can start a hurricane on the other side of the world. How they prove that, I don’t know. But they did explain it on Wikipedia - so it must be true.

The very next day, my mother in law sent me a story about butterflies...

A man was observing a cocoon as a butterfly was struggling to emerge from it. When it stopped, the man wanted to help and took a small scissors and cut the butterfly free. He snipped the cocoon to make the hole bigger and the butterfly quickly emerged! As the butterfly came out the man was surprised. It had a swollen body and small, shriveled wings. He continued to watch the butterfly expecting that, at any moment, the wings would dry out, enlarge and expand to support the swollen body. He knew that in time the body would shrink and the butterfly’s wings would expand.

But neither happened.

The butterfly spent the rest of its life crawling around with a swollen body and shriveled wings.

It never was able to fly…

The man, in his kindness, thought he was helping but what he didn’t know was that nature’s way of strengthening the wings of a butterfly is through the struggle to emerge from the cocoon. By struggling, the fluid in the butterflies body is forced into the wings, giving it their strength.

There are so many examples of this – of strength coming through struggle. Even trees get their tremendous strength through withstanding the force of the wind. This was proven by an experiment to grow trees in a greenhouse. They all were soft and wilted as they didn’t have any wind resistance to develop their strength.

I asked Paul if he thought Summer was the strong one struggling through this or if it was us. It sure didn’t feel like us. Of course, Paul being the diplomat that he is said it’s both of us. All of us. “Maybe Summer will have an exceptionally strong heart since she is pumping her heart for two.” Paul said, “Kind of the what doesn’t kill you makes you stronger idea.”

I don’t know but it makes sense to me. And I think Summer will be the kind of life that has strength. Maybe it won’t be physical strength, maybe it will be emotional strength. Or spiritual strength. Or the kind of strength that her friends will draw upon when they need help. Or the kind her mom will get just by looking at her and being reminded of Summer’s struggles for life before she was even born. She has already created a powerful hurricane in our lives – besides the chaotic, stressful and anxious aspect that has come from TRAP sequence, Summer has given us a new perspective, a desire to support other parents in similar situations, and the humbling position of asking for prayer from anyone who will listen.

By helping the butterfly by easing its struggle, we actually steal its purpose in life from it. But by allowing it to go through its struggle, it is given the power to create hurricanes.

I want to be like that. I want to be that butterfly that gets through struggles and has the power, the strength in my wings, to create hurricanes. I want to not take the easy way out - in my current situation, I have no choice, but in other life situations I certainly do.

Like the man who watched that butterfly, I can take comfort in the promise that God gives us; that he won’t allow us to go through more than we can handle. He can only promise that if he is acutely aware of every single struggle that we go through. I think he is aware. And he watches. And, instead of cutting us free from our cocoon, he allows us to develop strength. The kind of strength that can start hurricanes.

Gaper's Delay

Cases like mine don’t make the internet. That’s what the doctor told us on Wednesday. This was good news actually. Because when I researched about TRAP sequence, all I read was horrible statistics, heartbreaking stories, and gruesome pictures. And of course, I was convinced that each of those was applicable to me. But the doctor told me not to read about that.

Cases like mine don’t make the internet.

At first I was so relieved to hear that. But the more I thought about it, the more I realized how unfortunate that was. I can’t tell you how many times a day I go online to learn more about something. Whether its for work, for my own personal knowledge, or to settle an argument. It’s such an incredibly helpful invention, knowledge literally at your fingertips. But why, when you look up something about a disease, condition, or disability does the information seem to always omit the positive side of things?

I work at a national Down syndrome awareness center (www.gigisplayhouse.org) and one of the things I do on a daily basis is deal with new parents. Parents who just received the diagnosis of Down syndrome for their child, either in utero or a few days old. The first thing I say to them is “Congratulations!” Not because their baby has Down syndrome but because they just had a baby. And that’s what you say to someone who just had a baby. The response I nearly always get back is “Wow, that’s the first time someone has told me ‘congratulations’. Everyone else says ‘I’m so sorry’”. It’s hard for these parents not to view their child as a diagnosis instead of a baby when people keep apologizing to them.

And when those parents go online for information, the websites that come up have nearly all medical information. Nearly all facts and statistics about disabilities. Limiting abilities. “Your child might get autism. Your child might have celiac disease. Your child might develop leukemia.” But isn’t that true of the general population? My child might get autism. My child might get celiac disease. My child might have leukemia. A doctor, regardless of the amount of medical training, can’t predict that – not for my child or any other child.

I recently saw the results of a survey where parents indicated that they would like to see potential and quality of life rather than only the medical consequences associated with a diagnosis.

We tell parents of babies with Down syndrome not to look up the info online (though it is certainly getting better and having more positive information out there). Just like my doctor told me not to look online. But the problem is our human nature. Some of us are strong enough and rational enough to not look at the information. To not search for hours, reading the same negative statistics and the same difficult outcomes. My husband is one of those strong people. I am not.

It’s like a car accident holding up traffic. Usually, by the time you get to the source of the accident, the cars involved are pulled over to the side, help has arrived and traffic actually could flow normally. But it doesn’t. Why? Because people want to see. There’s even a term for it – gapers delay. The definition is ‘a traffic jam caused by slowing down or stopping of cars to look at an accident on the side of the road.” And it’s so annoying when you are just waiting and yet once you are up to the site of the accident, you tap the brakes a bit as you look to see the taillights crushed on the ground, the stretcher being put into the ambulance, and you assess the situation and come up with your own version of what must have happened. You might send up a prayer, but you still crane your neck to take in all the details you possibly can.

That’s how I felt. I couldn’t tear myself away from the internet – I was causing my own personal traffic jam, not allowing myself to move forward. From the negative statistics and the gruesome photos. But then the doctor told me that cases like mine don’t make the internet. Why not? In all reality, all I was searching for was a case like mine. All I wanted to read was that it was possible for baby B to grow slow enough to not warrant surgery. All I wanted to know what that it had happened out there to someone else – if it happened to just 1 of those other moms out there, then there’s full reason to believe it could happen to me. But it wasn’t there.

Here’s how the doctor put it…

If there were 100 women that came in with TRAP syndrome and 80 of them needed surgery, then the medical journals would write about 80 women who had TRAP syndrome. There would be no mention of the 20 who didn’t. Who went on to have their babies, maybe prematurely but still healthy.

I know I’m not in the clear yet. And I know that things can change at literally any moment for my situation. But it’s still comforting to know that there are those other moms and dads out there going through this who will have a positive outcome. I’m not saying that I, or parents of children with a developmental disability, should see the world only through rose-colored glasses. But I believe you can be positive and be realistic at the same time.

I just think that instead of only representing the negative part of the picture, add the human side. Instead of just including the research on the outcomes of those that needed surgery, include the ones that didn’t need surgery at all. Instead of just saying that a child with Down syndrome will have trouble learning, say that they can learn, they will learn, and that they can do nearly everything you and I can do.

Picture this…you are recently diagnosed with breast cancer so you go online with a heart full of fear and anxiety. You click on the first breast cancer link that comes up. But instead of reading about how the disease metastasizes, or how great of a hospital XYZ is, what if it showed the picture of a woman and her children and then described the incredible story of how she beat it and is now fully living life again. THEN, when you read the rest of the info about the disease, you are reading it through the filter that it is a beatable disease. They say that a positive attitude is one of the most important things to have when battling a disease so why not give people some reasons to have that positive attitude?

What if when you find out that your child is going to have Down syndrome, instead of reading about the disabilities that he/she will have, what if you saw a video of an adult with DS talking about how she works, lives on her own, is married – is more like us than she is different! Then you would view your baby as your gorgeous precious gift. Not as a diagnois. Not as a burden. But as potential.

What if a case like mine was in the internet, and a mom finds out she is pregnant with twins, then loses one, and then finds out that she has TRAP sequence. What is she goes online and sees a case like mine, and finds the hope that she so desperately needs to hold onto as she prays for her baby in her belly.

Hopefully, that will soon be true. I know the world of Down syndrome and other intellectual disabilities is really doing a great job with trying to put the human face to the diagnosis instead of just a medical statistic. That’s why I love my job. Everyday, we get to help parents reframe their mindset and see their baby as a precious gift of potential.

I know this altruistic wish for life isn’t necessarily going to happen overnight or worldwide but if we are able to take that split second when we hear the bad news to remember the disclaimer; that cases like mine don’t make it on the internet. A disclaimer that says, the information found here does not always represent the whole picture. It can cause gapers delay - a personal traffic jam preventing us from moving forward in life. The disclaimer that works best for me is to remember that I don't have to trust only in the internet. There is a much more powerful, more knowledgeable and more trustworthy Source to place my trust. To draw my Comfort from. I rest in that Truth.

Roller Coasters (appt. part II)

I’ve always been a fan of roller coasters. It’s because of that feeling you get in your stomach when you are on the top of the track, looking over the thousands of people below, strapped into a mass of metal, knowing what’s coming next. You put your hands up, and begin screaming as the wind splashes on your face and your stomach does flip-flops in turn with the track. There are a few key elements that makes this fun; Number 1, you are strapped in. Number 2, you know what to expect – you know where the turns are, the flips, and where it ends. Sure, you are having faith that the brakes will work, but other than that, you are pretty sure of what’s going to happen.

Paul told me today that he feels like we are on an out-of-control roller coaster.

A month ago, we were told that we were keeping an eye on baby B to see if it was growing. The Dr said she was 99% sure it wasn’t connected because she couldn’t find a blood supply – this was good news because a connection was worst- case scenario. When we went last week, the u/s technician said that she didn’t think baby B had grown at all in the past month. I felt like a huge weight had been lifted off our shoulders. This was the confirmation we had been waiting to hear. However, it came with a small caveat; “but the doctor will be in to take a look herself.”

The rollercoaster began its ascent uphill.

When the doctor came in, I smiled at her and said, ‘since baby B isn’t growing, am I no longer considered high risk?’ She looked at me with the kind of look that you don’t want to get from a doctor. The kind that says, I hope you’re enjoying your ignorance because I’m about to change that. She took the ultrasound handle and said, ‘I want to show you something.’ Paul and I both drew in a deep breath. As she navigated around baby A (we hadn’t named her yet), the screen came to a rest on a large dark circle.
“See this? That’s a skull. See this? That’s a spine. That wasn’t there before. So to answer your question, the baby is still growing. In fact, it has doubled in size since the last time you were here.” The tears started coming. This was the part of the track we weren’t expecting. Just a few minutes before, we thought we were getting off the ride altogether.

“So what does that mean?” I asked as she handed me a tissue.

“Well, we would refer you to Cincinnati. They will discuss a procedure with you that consists of searing the connection between the babies.” Cincinnati? Another unexpected turn in the rollercoaster track.

She then left to call ‘Cincinnati’ to discuss my case. When she returned she said that based on the size of baby B, they recommended I be monitored weekly and when it gets to a certain size, then I would go to Cincinnati.

Just as quick as we got on that turn in the track, it straightened out again.

The next week was spent asking for prayer, trying to figure out what we were praying for (that Baby b stops growing, that we can have the surgery which has a high success rate, that the doctors were somehow wrong?), and scouring the internet for information. I had done so much research on the procedure, that I had braced myself for the news that we would be going to Cinci.

We went in this morning, anxious to hear Summer’s heartbeat. When we heard that sweet sound, I let out a breath I didn’t know I was holding. Then the doctor came in and changed the roller coaster track once more. “I am not impressed by the growth of baby B relative to baby A. You do not seem to be on track to need the surgery.”

While this was good news, at that point, Paul and I weren’t so quick to allow our emotions to feel his words without some skepticism.

“Are you sure? How do you know? What about what the doctor said last week? What about the scary things I read online?” We were once again brought into the conference room where we talked at length about all possible outcomes. By the time we left, we felt like we trusted his assessment albeit with a certain amount of hesitation. In the car Paul said, “It’s hard to know how to react when every week we hear something different. What will they say next week?”

On the other hand, with all the prayers that we know are being raised on our behalf, why should we doubt God’s answer to them? If you are one of the ones that pray, please continue to do so. The doctor told us that right now, we are in the best possible situation with regard to the size of baby B. He didn’t think that we would need surgery and he was hopeful that baby B’s growth would be slow enough that Summer would not have complications enough to send me into preterm labor. This is a huge answer to prayer! I will continue to be monitored with weekly ultrasounds and fetal echocardiograms.

We are still on the roller coaster ride. And while we don’t know where the next turn is, if we are on the way up with a scary plunge in our near future, or if we are nearing the end, the one thing that we do know is that the straps that are holding us in tightly, are the hands of God. We fully believe that He is not only holding us in this situation, but that He will carry us through it, whatever the outcome. We can have faith that He is driving the roller coaster, He knows the track, and He has control of the brakes. (That’s more than you can say for the rides at Great America!)

Life is crazy enough without riding the emotional roller coasters too. I haven’t figured out how to do that (I’m the kind that literally cries at commercials. The same ones. Every time I see them), but I’m pretty sure it starts with faith. With trusting in God’s plan for our lives, even when we don’t know what it is. So while I can’t quite say at this point on the roller coaster, let’s sit back and enjoy the ride – I can say that we are in good hands, and as promised, we will be Held.

baby B (appt. part I)

At 10 weeks, I lost baby B. I only knew for 2 weeks that there even was a baby B. I had actually prayed for twins (I know, who does that), but I have always loved the idea of having twins, so I was certain that it was meant to be. Sort of a 'you asked for it!' from God that I was happy to take on. So when I found out that she died at 10 weeks, I cried. I felt a loss. I felt sad for her twin sister for what could have been. I went for several ultrasounds after that and every time, I asked if they heard a heartbeat on baby B. Rationally, I knew that it wouldn’t just somehow appear, and yet part of me still held out hope that maybe, just maybe, the ultrasound technician had missed it.

Since then, I have tried to focus on baby A, baby Summer. And yet, in every ultrasound I see baby B and part of me is saddened by it. Now that we know that Summer is a girl, baby B has become Summer’s twin sister. We haven’t named her (which apparently many parents in this situation do), but just knowing that she is Summer’s twin sister has changed something about the situation.

The tables have turned now, and it’s hard to reconcile the right emotions to go along with that change. Baby B, the same baby that I cried over, the same baby that is (was?) Summer’s sister, is now described as a parasite. As an ‘acardiac twin’ that is endangering Summer’s life. When I read about TRAP sequence and read about acardiac twins and how they harm the ‘pump twin’, the rational part of me prays for Summer – that she would be strong, that baby B would stop growing, that God would produce a miracle. My rational side makes me devour the information that is on the internet (to the point where Paul had to take the computer away) and learn everything there is to know about TRAP sequence. I created a list of questions - which could more accurately be considered a list of fears that I needed the doctor to alleviate. My rational side wanted answers, wanted statistics, wanted to know how to protect Summer from the acardiac twin. (by the way, acardiac means ‘no heart.’)

I walked into the ultrasound today with my list of questions in hand, a stomach full of butterflies, and holding my breath until I heard Summer’s heartbeat. Once I heard that proof of life, and saw that she continues to grow, my eyes shifted to baby B. My list of questions faded away. My butterflies were replaced with…silence. With a silence of what could have been versus what was.

As I watched baby B, which looks like nothing more than a conglomeration of body parts, I began to struggle with how I felt about her. No longer am I hoping for a heartbeat. And yet, I can’t quite view her as a parasite. My rational side knows that this being that started out as a life is now really just a mass of tissues that is connected to a blood supply – that’s the only reason it’s growing. Like a tumor. And yet, just a few weeks ago she was my baby that I cried over losing. And last week, upon learning the gender, she became Summer’s twin sister. And now I am supposed to see her as a parasite? How do you reconcile those emotions? How do you feel loss and sadness, fear and anxiety at the same time – about the same thing? Is she my baby that died or is she a threat to my yet-to-be-born baby? Can she be both?

As it turns out, my rational side didn’t stand a chance against my human side - the side that still sees baby B as just that. My baby. Not as a parasite, not as a leach. Yes, she is threatening the very life of Baby Summer but not on purpose. Not with malicious intent. The doctors can call her a parasite. A mass of cells that will continue to grow until the blood supply disappears (at delivery). But to me, she is baby B. A baby that Summer is risking her own life for by pumping her heart for both of them. Will we name her? Maybe. Not right now. Right now, she will be our baby B.

Held

Sometimes a little perspective is all you need to bring yourself out of fear, depression or self pity. Perspective means ‘the ability to perceive things in their actual interrelations.’ The danger of losing perspective is that you see your experiences in relation to YOU, to YOUR life. And that’s not reality. It feels like reality, but it’s not.

When I first heard about TRAP syndrome, I read that this rare condition happens to 1 in 350,000 women. It came after a week of crazy not-so-good-news and I thought, “What in the world is going on? Why is this happening to us?” It wasn’t that I wanted it to happen to someone else instead of me, I just never expected it to happen at all.

I heard a song yesterday, Held by Natalie Grant, that reminded me of the promise that God gives us – the promise not to spare us from pain, but to comfort us in the midst of it.

This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive.
This is what it is to be loved and to know
That the promise was that when everything fell
We'd be held.

I was quickly reminded of, and humbled by, situations of people I know and love around the world.
*Of friends who can't get pregnant at all.
*Of my grandma who lost her best friend/husband and can't seem to find the
joy in life again yet.
*Of a friend who lost her 2 yr old son to a senseless act of violence
(does it get worse than that?).

Rather than being 1 in 350,000 women with a rare pregnancy condition, I could be 1 of 7 - the number of people in the world who go to bed hungry. Mia could be 1 of 50 – the number of American children that are homeless each year.

A little perspective reminded me that my blessings far outweigh the challenges in my life. That I don’t have any reason to complain. To ask for prayer? Yes. To complain? No. I was talking to Paul about this and he said the best way to keep your perspective is to be thankful. He’s right; it’s hard to complain, be in self pity, or be depressed when you look around you and see all the gifts you have been given. When you begin to count your blessings.

I don’t think I could ever count that high.