A Clear Path

We have been praying from the beginning that God would make our paths clear as we care for Arthur - that we would have obvious guidance on the hard decisions we would have to make.  Yesterday we met with the cardiologist and neonatologist at the hospital where we plan to deliver.  The conversations we had with them were an answer to that prayer.  Not the answer we wanted, but an answer, and for that we are thankful. 

The cardiologist did quite a number of scans to look closely at Arthur's heart.  She reminded us that the limiting factor in Arthur's situation is his lungs.  When a child has the heart defects Arthur has, the success of the three surgeries they usually perform rests on a good set of lungs.  Because of Arthur's severely underdeveloped lungs, if everything else were normal and functioning, in the best case scenario he would need a transplant before the 3rd surgery.  However, the vein that delivers oxygenated blood from the lungs to his heart so that it can be pumped back into his body is also incredibly small.  This means that not only will his blood be underoxygenated, but very little of it would make it back to the heart to recirculate it throughout his body.  There is nothing that can be done to "fix" this.  In fact, intubating and ventilating Arthur would quite possibly cause this vein to pop due to the extra pressure.

The neonatologist had already conferred with several colleagues about Arthur's case before meeting with us, and they had all arrived at the same conclusion, agreeing with the cardiologist as well.  Unless Arthur arrives in this world miraculously better than what they are seeing on every test and scan, no interventions or surgeries will be able to save his life.  I will deliver him as normally as possible and we will get to spend a few minutes or hours with him as we say goodbye. 

For almost two months now, we have been prepared for what the doctors told us yesterday.  Neither one of us was shocked or taken aback - this outcome has been more than hinted at from early on.  There is a sense in which today's news allows us get off the emotional roller coaster of uncertainty.  At the same time, though, the clear path we have been given is not an easy one.  In the abstract, we had wrapped our minds around the fact that Arthur would probably die shortly after birth.  When we started thinking and talking about the details today, though, the reality sank in and affected both of us deeply. 

Yet another balancing act confronts us.  There are some things that we would like to plan in advance so that we don't have to deal with them after Arthur's arrival - thinking through what we want that short time together to include, funeral arrangements, some other medical decisions, and so on.  At the same time, as the neonatologist wisely reminded us, we ought to enjoy these next 9-10 weeks of pregnancy rather than spend them continually obsessing over the future. 

We covet your prayers as we seek to find that balance of preparing wisely for what we know will be a very hard time but not forgetting to live in and enjoy the time that God has given us today.  We had already planned for the rest of this week to be our family "stay-cation", so we look forward to having some fun doing things in the area that we don't usually spend time or money on.  Please forgive us in advance for not answering emails/facebook messages/calls/texts as promptly as usual while we focus on enjoying time as a family.  Next week we will begin to get ready for the school year and for Arthur's arrival and will communicate more about our situation, thoughts, and plans as it seems appropriate. 

Thank you so much for sharing this journey with us - it is far from over, although we know now where we are headed.  We are so grateful for each loving thought, prayer, word, and action.  The neonatologist expressed how important it is to be surrounded by supportive friends and family, and we smiled, knowing that God has given us an abundance!

For our citizenship is in heaven, from which also we eagerly wait for a Savior, the Lord Jesus Christ; who will transform the body of our humble state into conformity with the body of His glory, by the exertion of the power that He has even to subject all things to Himself.
~Philippians 3:20-21 (NASB)

If the Lord wills...

 Now that I am pregnant enough that everyone notices and comments, I've encountered a new difficulty: what to say to strangers and acquaintances who start up a friendly conversation about the little person I am expecting.  Right now I am able to answer the first round of questions (due date, sex, name, how far apart from big sister, etc) with a smile.  I hope that this will remain true...after all, these conversations are a sweet reminder that so many people in our community value and celebrate life, even the life of a little one no one has met yet!  Their love deserves to be met with a smile. 


It's the next round of questions and comments, though, that puts me in a quandary.  Will he share a room with his big sister?  They'll be best friends.  Better go buy a double stroller!  There are so many cute little boy clothes these days.

What do I say?  "Well, best case scenario, it will be months before he can wear clothes/sleep at our house/ride in a stroller.  His sister might not even get to meet him.  He may never come home."  Puts a real damper on the conversation, don't you think?

I've realized that, in a subconscious attempt to protect my heart, I've avoided making plans for Arthur.  I hadn't let myself imagine what it would be like to see his big sister hold him.  I haven't bought him any clothes.  I boxed up all the baby paraphernalia this summer.  But the kind questions of others have brought my fears to my attention. It's bittersweet to share in their optimistic hope for Arthur's future and to indulge in a few "plans" for our lives together, but I still can't bring myself to wholeheartedly believe that those plans will come true.  I'm holding on to them very tentatively, knowing that I may never see them come to fruition.

This has made me realize the wisdom of James 4:13-15

Come now, you who say, “Today or tomorrow we will go to such and such a city, and spend a year there and engage in business and make a profit.” Yet you do not know what your life will be like tomorrow. You are just a vapor that appears for a little while and then vanishes away. Instead, you ought to say, “If the Lord wills, we will live and also do this or that.” (NASB)

Christians quote this verse all the time, but I believe that we don't really mean it.  We actually live our lives and talk about them based very much on the presupposition that we know what they will be like tomorrow. When we tack the godly-sounding phrase "Lord willing" onto a plan, it is a plan that is a little "unsure", or one that we recognize as having elements that are fully outside of our control.  We expect the majority of our plans to come about in reality looking mostly like they did in our minds.

When I talk about Arthur, though, I understand this verse much better than I ever have before.  I have no idea what his life will be like from the moment he emerges from my womb.  I am much more aware of the reality that he is just a vapor.  That phrase "If the Lord wills" comes to life when I put it in front of my "plans" for Arthur - plans I really haven't even dared to make.

If the Lord wills, he will live.  I'll take each day of life God gives him as an immeasurable blessing, one I know I can't count on.  

If the Lord wills, he will live and his big sister will move into a toddler bed so that he can have the crib.  

If the Lord wills, he will live and I can push a double stroller.

If the Lord wills, he will live, and he'll wear one of those cute baby newsie hats.

But then I realize how audacious I have been in so many other thoughts and plans.  I don't really grasp the uncertainty that all of life holds.  I take for granted the normalcy that God usually provides.  I'm a planner (just ask my family and friends...) who likes to have her ducks in a row.  Every Sunday I plan out what chores and errands I'll do each day, what we will eat for lunch and dinner each day, and what work I need to accomplish each day.  I keep a myriad of to-do lists: ones for during this naptime, this day, this week, this month, this year, and even beyond.  

Obviously James 4:13-15 does not forbid planning.  In fact, it presupposes that we will plan - even a year or two in advance!  But when I fail to recognize that my plan for dinner tomorrow is just as shaky as my plan for Arthur this Christmas, the next verse in the passage (James 4:16) calls my attitude out for what it is:

But as it is, you boast in your arrogance; all such boasting is evil.

So, I'm glad that people have asked me about the future so that I can make a few "plans".  It's probably healthy to have become aware of my unwillingness to count on anything being certain in Arthur's future.  I'm also glad that this has helped me understand the fragility of every single one of my plans, the ones that I am "sure" of as well as the ones I haven't been willing to voice because I am so afraid they will never come to pass.

Most of all, I'm thankful that I can rest in the One who knows what my life will be like every day until I die, and whose word endures forever.

"As for man, his days are like grass;

As a flower of the field, so he flourishes.

When the wind has passed over it, it is no more,

And its place acknowledges it no longer.

But the steadfast love of the Lord is from everlasting to everlasting on those who fear Him,

And His righteousness to children's children,

To those who keep His covenant
And remember His precepts to do them."
Psalm 103:15-18 (NASB) 

Whack-a-mole

Faith is like a game of whack-a-mole.  You know, the arcade game where the funny little fake animals pop up at irregular intervals from a variety of holes and your job is to firmly bop them on the head with a foam hammer.  It takes both single-mindedness and multitasking abilities to succeed at this game.  Stop for a moment to glance over at the skee-ball machine, and you will miss several cheeky little rodents.  Stare too long at one hole that has been the location of many mole appearances, and you will be caught by surprise by the speed at which the moles rear their heads from every other hole.

The single-mindedness required by faith is great!  Let down your guard for a moment, and the ugly pest of worry will make you feel like that frantic child wielding a foam hammer against a horde of mocking moles.  As the very wise guest speaker at our church last Sunday said, muscular faith requires a moment-by-moment choice to trust God rather than to be overwhelmed by our circumstances.  (Listen to the amazing sermon here: http://sitedata.countrysidebible.org/avmedia/se/gs140713a.mp3 ) Stop making that choice for a moment, and you will begin to lose the battle.  Constant vigilance is absolutely necessary.  No wonder the Bible compares the Christian life to the life of a soldier.

However, I've been struck this week more by the multitasking that faith requires.  You see, the sheer number of holes from which my worry can pop up really impresses me!  (I do acknowledge that I am an above-average worrier...)  There's of course Arthur's physical condition, although that mole is simpler to catch - I find it's easier to trust God when it is abundantly clear that only He can intervene right now.  Then there's having true thoughts about God...easy this week as I taught about His character and attributes during VBS.  From there, though, the diversity of my worry-moles leave my head spinning.  Logistics, finances, family, there are so many facets to our situation!  And of course, it is the moles out of the blue having nothing to do with Arthur that most catch me off guard.

So, I'll be gripping that hammer more strongly and watching out of the corners of my eyes for the feisty fellows. 

28 weeks

Wiggly baby toes!

Well, I'm officially in the 3rd trimester, and it's officially summer in Texas.  Arthur is a very active fellow, and while I am trying to stay active as well, sometimes the siren call of the couch and the air conditioning wins!

This week I got to meet the doctor who is my new OB and perinatal specialist.  Two for the office visits of one...what a deal!  They have an excellent ultrasound machine, and I got to watch Arthur try to put his hand in his mouth, open and close his eyes, and kick all over the place (I wasn't surprised to see the latter...I am feeling it quite often these days). It is so amazing what God does in growing a little life and what man can do to peek in on the process!

The doctor is very kind and professional at once.  He confirmed that things don't look good (his words - "not very reassuring."  I should start a list of all the doctor euphemisms for bad news...).  The next steps are for us to meet with the pediatric cardiologist and neonatologist at the hospital, at which point we will begin making plans for delivery and what may lie beyond.  He anticipates that Arthur will need to be immediately placed on a heart-lung bypass machine called ECMO, and then said, "But whether he can come off of it..." and trailed off. 

After a respite of purposefully not dwelling much on the future, as we move closer and closer to Arthur's arrival, we have started reading more about his conditions and what to expect.  We've begun again to try to picture what the future may hold, not to worry but to try to be prepared.

The hard part is, the future may hold such disparate realities.  We may be by Arthur's side in the hospital for months, fighting for every day, or we may say goodbye very quickly.  It's hard to think and plan for both at once.  In mundane terms, how do you pack a bag and set things in order at home, not knowing if you'll be gone for 24 hours or for weeks and weeks?  Emotionally, how do you hold on to your baby so strongly that you are ready to fight through heart/lung bypass machines, multiple surgeries, and so much more and yet hold on so loosely that you are ready to let go almost immediately?

The funny thing with grief is that you never know what ideas or images are going to hit you the strongest.  As I looked through blogs of families who have gone through similar situations, the first thing that struck me was the scariness of pictures of little babies with huge scars and several machines keeping them alive.  But then, on the blogs of the families whose babies make it, there are always the pictures several weeks later of the baby, still with lots of tubes, wires, and scars, but with a grin on his or her face.  I realized that as much as I have been preparing myself for the worst, I want so badly to see my baby smile.

Beyond praying for Arthur's body and our hearts and minds, we would appreciate prayers that the upcoming important appointments, especially with the neonatologist, would fall at a time when both my husband and I can be there - by mid-August there will be some very inflexible times in his schedule.

God has been answering our and your prayers for a sweet time of being together as a family this summer and the ability to enjoy each moment as He gives it to us, so thanks to you and praise to Him!

10 Reasons for Thanks

I have run two marathons, and I think that a marathon can serve as a good analogy for the journey of waiting for Arthur.  Running a marathon is anything but easy.  At the same time, though, there are a multitude of things that can make completing a marathon as smooth and enjoyable as possible.  Good weather, shoes that protect your feet and body, hydration, fuel, people to cheer you on and tell you to keep going, porta-potties…

Anyway, I’d like to list ten things that have made the last two months so much easier than they might have otherwise been and that I know will continue to make the rough terrain ahead seem a little smoother.  I am incredibly thankful for each one of these tastes of grace.

1. My husband
He was the first to cry when we found out that something was wrong with our little baby.  At the busiest time of his work year, he took time out to go to appointments with me so that I wasn’t alone.  He listens when I need to talk and talks when I need to hear from him.  He pitches in on housework without being asked.  He prays for us, for me, for Arthur.  All in all, he is a great picture of the sacrificial love and leadership that Christ demonstrates toward the Church.  I am SO glad that I get to walk through all of life, this part included, at his side.

2. Our daughter
It would have been easy to live the last 2 months totally consumed with fear of the future.  But when your days are filled with an adorable 15-month-old who constantly lives in the moment, you too live in the moment.  It’s hard to NOT be joyful when I see the sheer glee on her face at the sight of her daddy walking in the house, or when she starts dancing to her favorite songs, or when she gasps in wonder at the sight of the playground or a dog.  When a snuggle from Mama, her thumb, and her shra-shra (the flower on her blanket) are all she needs to feel better, it’s hard to be sad.  When her face tells me nothing could possibly make her happier than (insert simple item here – popsicle, swimming pool, juicebox, getting to hold my telephone), I too have to screw up my face in a grin.

3. Our families
All those doctors’ appointments would be a lot harder with a toddler in tow – it is so nice to know she is off having a blast with Grandpa (PaPa) and Grandma (MuhMuh), who drop everything to help us by taking care of our little girl.  When I call and say “Can I come over?” because I really don’t want to be alone at that moment, they always say “Of course!”  They never question my need to talk about Arthur or about everything BUT Arthur.  When I have those odd, awkward questions you never ask anyone else, they listen and give such wise advice.  Even though I don’t always see and hear, I know that their prayers on our behalf are even more frequent than their service that I can see.

4. Our doctors
The doctors we have seen have been uniformly thoughtful, professional, and candid yet compassionate.  The cardiologist ran to get different colored highlighters to show oxygenated and deoxygenated blood flow on her little diagram when I started asking more questions .  The perinatal specialist didn’t blink an eye when we told him that we wanted to continue the pregnancy.  He nodded and said “Many women make that choice.  If it’s their only time to love their baby, they want to love it for as long as they can.”  My OB called me in between appointments to make sure I was doing all right and spent 30 minutes during a routine checkup talking to me and answering all the strange questions that had arisen in our minds as we bounced from specialist to specialist.  I am so grateful that God has surrounded us with skilled and sympathetic doctors!

5. Our friends who are medical professionals
These friends from church have been incredibly helpful and supportive in very practical ways.  They have quickly found time to talk with us in person and on the phone/internet.  They have taken time at work to talk to doctors and specialists they know personally and then given us feedback to help us choose hospitals and doctors and start thinking about what to expect when Arthur is born.  They have explained which doctor to talk to when and how to get an appointment with them.  They have very practical advice and also words of spiritual wisdom.  Since it comes from friends who see babies and parents go through similar situations often, you can imagine how helpful their support is and how timely and appropriate their advice is.

6. Everyone who has wept with us
I hate crying.  Even more, I hate crying in front of other people.  I hate being the reason someone else is crying.  But so many times over the last 2 months, as friends have spent time with me, listened to me, and prayed for me, they have cried.  There is something poignantly sweet to knowing that so many people love me so much that when they hear what is going on, their eyes well up with tears.  I am well aware that for each dear one who has cried with me in person, there are many of you whose tears I haven’t seen.  Thank you for loving and caring so deeply!

7. Everyone who has served without being asked
One of the hardest questions to answer has been “How can we help you?”  For several weeks we didn't really have the time or mental energy to figure out what to say.  So, to those of you who didn’t wait to find out, who thought of ways to serve us and then just did it, we are so grateful.  A couple people have prepared dinner for us.  Someone came and deep-cleaned my kitchen with me.  Many people have had my daughter and I over for a day or met us at the park, made lunch for us, entertained us, listened to me, and kept me from being alone when my husband was working long days and nights.  A few people bore the burden of praying for us early on when we didn’t know the full extent of what was wrong and were waiting for more appointments but didn’t want to tell everyone.  The sweet cards, texts, phone calls, and more have been encouraging as well!

8. Summer!
My husband and I are both educators, which means that the school year is busy at best, and at worst means we had more time to talk when we had a long-distance relationship in college because now our days and nights and weekends are filled with working non-stop under a time crunch with people.  Especially in May and early June.  So, these last few weeks have been a welcome respite.  We have always loved our summers, but after an emotional 6 weeks between when we found out about the baby’s problems and when school let out, we were especially ready for some quality time together.  We have been able to eat dinner together as a family almost every night (*gasp*), sleep in (as much as you can with a toddler!), and run errands and work on house projects together.  We’ve even had a few date nights!  We are planning a “stay-cation” at the end of this month and are already looking forward to it.  Plus, summer means ice cream.

9. Technology
Ok, this one could go either way.  Knowledge is at the same time power and a burden.  I, however, prefer knowledge to obliviousness.  (I wrote a paper on this topic for a philosophy class!)  I am so thankful that we can prepare ahead of time for Arthur’s arrival, both emotionally and practically.  Without ultrasound machines, MRIs, and so many other advanced technologies, we would have no idea what is going on with our son or what level of care he may need and how to get it.  Without advances in surgery techniques and life support machines, nothing could conceivably be done for him.  Without the internet, we would be in some school library trying to arm ourselves with enough information to carry on intelligent conversations with our doctors.  Without social media, we would have to rehash the same painful news over and over with each individual family member and friend.  Yes, there are downsides to them as well, but I am thankful for these innovations.

10.   A God who gives good gifts
Philosophers, both genuine and armchair, love to discuss why bad things happen.  Fewer treatises, however, have been written on why there is pleasure and joy in life.  We wonder why there are tornados but not why there is chocolate.  Why babies develop with birth defects but not why they usually develop perfectly.  Perhaps since we enjoy nice people and things and circumstances we don’t stop to question why they exist.  But if we think about it, good is just as remarkable as evil…perhaps more so.  I’m thankful that God has given me the 9 gifts above and so many more!

“Every good thing given and every perfect gift is from above, coming down from the Father of Lights with whom there is no variation or shifting shadow.” James 1:17 (NAS)

The Struggle

Have you ever stopped to wonder why suffering and death are so awful?  After all, they are a ubiquitous part of the human experience, and have been for as long as we know.  On what basis do we judge them as wrong, unnatural?  How do we know things shouldn’t be this way?  How dare we fight against what seems to be the natural order of things?

One of my favorite books asks this very question.  In The Plague, by Albert Camus, a mid-20^th century city is stricken by the bubonic plague.  Each of the main characters grapples with himself, his deepest beliefs, and his understanding of human existence.  

One character, after observing the tireless yet futile efforts of the doctor and the priest to stop the suffering of so many, comes to a startling conclusion.  The plague, he realizes, is the normal, natural state of affairs.  If no one fights it, it will take over.  Health is only to be achieved through ceaseless struggle against the plague.  Doing nothing will result in things getting worse and worse.  Doing something may not accomplish much, but it’s the best course of action to take.  At least then you know you tried.

“Yes, Rieux, it’s a wearying business, being plague-stricken.  But it’s still more wearying to refuse to be it.”

What I find most profound about this story, though, is that the characters acknowledge they are caught in an irrational position.  They don’t know why they are so sure that the plague is bad, given that it is the natural state of affairs.  And yet, they are strongly compelled to fight against the plague with all their might, even if they will never win.

As I become more aware of the world of people whose lives have been touched by serious congenital defects, I have been reminded of The Plague often.  Parents, doctors, nurses, patients, support and awareness groups are fighting with all their might.  For what?  A cure?  While medicine has rapidly found ways to save more and more little lives, there is a limit to what we will be able to fix.  Money for research, more awareness, better education will only be able to accomplish so much.  They know this, more profoundly than anyone.  And yet they fight!  Because even though what has occurred in the child’s development is “natural”, they have an overwhelming sense that it should not be so. 

They are right, of course.  Things are not as they should be.  Our world was not created to be full of evil and suffering.  And yet it is.  

Some people, in their crusades, seem to honestly think we can defeat evil and suffering once and for all.  These humanists set much stock in the ability of mankind.  More medical intervention, more living naturally, more guns, fewer guns, more education, more research.  But, if they were to stop and ponder for a moment, I wonder if they would acknowledge what the characters in The Plague understood:  their fight will never ultimately succeed, and yet the only other alternative is to let sickness and death run amok.  And so they fight.

While the humanist tendency can be to put trust in man’s ability to overcome evil and suffering, the Christian tendency can be to face pain with pessimism.  After all, if sin has corrupted the entire natural world, including the hearts of each person, what’s the point of fighting?  We will never truly succeed. 

The Bible speaks to this tension in Romans 7 and 8.  Romans 7 deals with the struggle against the evil in our own hearts while Romans 8 covers the struggle against the evil in the world around us.  Our own hearts and our world are still in some way in bondage to sin, even though we don’t want them to be.  In both instances, however, Romans preaches a balance between fighting and waiting.  Fighting, because that’s what we have to do.  Just like the characters in The Plague realized, to not fight is to give in.  When we know something is wrong, our best response is to seek to eliminate it, even if we know we won’t fully be able to.  But there is a peace in Romans 7 and 8 that is not there in The Plague.  A peace that only comes from realizing that, however futile the fight may seem, there is certain hope that one day the fight will be won.  Not by our own cunning and strength, but by the redemption of our bodies and of all creation that Christ purchased.

“But if we hope for what we do not see, with perseverance we wait eagerly for it.” (Romans 8:25 NAS)