What Can you Say?

Megan had no idea I was taking this picture. She was lying down on the bed and feeling our son do laps around her insides. I am not sure I have ever seen her so happy. She is taking care of our son. She is being his protector like no one else can. She is undoubtedly a mother. We will get to hold our precious son. We will have pictures and memories to cherish for the rest of our lives.

Mixed into these moments of joy are times of the deepest grief either of us have ever felt. We do not always anticipate them coming. For example, Megan and I were on a pleasant walk through the park near our home. We turned a corner and a young mother and her toddler were laughing as they were rolling in the grass together. It was a beautiful moment of something we will never be able to do with Joses. Yesterday was difficult because Megan was reminded that there were only sixty days until Joses' due date. Now it is just fifty-nine. While we are excited to meet our son, we dread losing him. While Megan is tired of having weird pains and the inability to bend over, she loves feeling Joses move around inside her. We are less than fifty-nine days away from the birth of our son and in all likelihood, less than fifty-nine days from having to say goodbye.

It may seem strange, but saying both "congratulations" and "I'm sorry" in the same breath is exactly what we need to hear. Megan will give birth to our son. We will have great moments of joy that only new parents can feel. For these reasons, it is certainly appropriate for you to rejoice with us. At the same time, what can you say to a couple who will be losing their son? The English language does not contain any words that can make that pain go away. Paul commands in Romans 12:15 to "Rejoice with those who rejoice, and weep with those who weep." Right now, we need both.

Many people have spoken to us about our situation. Everyone has good intentions in their words, but some are less comforting than others. Through all of this, I have learned what and what not to say to people who are grieving. If a man tragically lost his wife in an accident, no one would tell him "You can always get another wife." Our grieving is not because we are not getting to be parents, but we are parents only for a moment to Joses. We will never hear him laugh, coo, sing, or say "daddy." We will always miss his face, his voice, and his smile. We know there will be bright days ahead of us and if God wills, multiple children. However, we will always miss our Joses. No child will ever replace him. While we know that it is well intended, "you can have more children" is not all that comforting.

Some of the greatest comforters in the Bible were Job's friends. They came to him after losing his children "sat down on the ground with him for seven days and seven nights with no one speaking a word to him, for they saw that his pain was very great" (Job 2:13).  Two chapters later, they opened their mouths and gave Job bad advice that did far more harm than good. Just being their for Job must have given great comfort. Some of the greatest comfort to us have been people who have come to us saying, "I do not know what to say. I'm sorry. You are in my prayers." Sometimes all it takes is having a sympathetic eye offering a simple nod, hug, or smile.

In the three months since we learned the word "Anencephaly", we have seen several of our friends go through great struggles. Although their struggles are different, we all having some things in common. I have learned:
1) It is ok to not know what to say.
2) Say, "I'm sorry." (It is usually enough)
3) Let them vent if they need to.
4) Do not avoid them. (Even if it makes you uncomfortable, it makes them more so. Without forcing them, welcome them back into your company.)
5) Unless you have been through their exact situation, they do not need advice. They have researched their situation far more than you have. Just be there to listen. (and refer to #1 and 2).
5) Do not expect them to always be sad or happy on your timeline.
6) A hug is worth a thousand words.


Some of the ideas for this post came from another parent of an Anencephaly child.
http://brodymicah.blogspot.com/2014/03/why-its-ok-to-say-congratulations-and.html

Vicarious Love

By Seth McDonald

March 3, 2014

When I was a teenager, I typed out my life goals on my mother’s laptop. I accomplished one of them sixteen months ago when I married a woman who loves God more than she loves me. All of the other goals had to do with things I would do with my children. I have dreamed for a long time of coaching my kids’ baseball teams, leading their scouting groups, and teaching them about God. Until January 6th, I thought I would start to fulfill those dreams in May, when our son Joses is due to be born. It was on that day that we learned our son has a terminal condition called Anencephaly. The doctor told us that Anencephaly "is not compatible with life," and our son was going to die. All of those life goals I have for my children have been postponed. Joses will never play baseball, be a Cub Scout, or even call me "daddy."

Many people have rushed to our aid over the last couple of months. Some of our dear friends drove down from Tennessee to stay with us this week. For many reasons, we were excited that they were coming to be with us. They are planning to help us around the house, preparing meals for us both this week and freezing meals for later, and giving us a good distraction. We love spending time with this sweet couple and their three children. However, one thing was causing us some anxiety in anticipating their arrival. We knew that we were going to do some fun things with their kids this week that we had been looking forward to doing with Joses.

We went to a playground near our house today. Playing with their kids—especially their two sons—made me crave playing with my son. At first, all I could think about was how I do not get to be that kind of daddy to Joses. Then a thought came to me that I did not expect. I was carrying around and tickling their youngest son, and he was laughing and having a good time. I could not help but smile and think about what joy I was bringing to this young child's life at that moment. This may not make sense to anyone else, but instead of getting sad about the lost plans I had with Joses, I thought about how—in some small way—it was like I was playing with my son through these kids. I felt like I was displaying the love I have for my son by giving it to others.

My mind then turned to a lesson of Jesus and how much more special it is to me now. The determining factor of whether you really love God is how you show it. However, there is no way to show hospitality to God or send Him a card in the mail. There is nothing we can offer God that He cannot easily do for Himself. However, in Matthew 25:31-46, He declares what will separate His real followers from those who only pretended to love Him.

"When the Son of Man comes in his glory, and all the angels with him, then he will sit on his glorious throne. (32)  Before him will be gathered all the nations, and he will separate people one from another as a shepherd separates the sheep from the goats. (33)  And he will place the sheep on his right, but the goats on the left. (34)  Then the King will say to those on his right, 'Come, you who are blessed by my Father, inherit the kingdom prepared for you from the foundation of the world. (35)  For I was hungry and you gave me food, I was thirsty and you gave me drink, I was a stranger and you welcomed me, (36)  I was naked and you clothed me, I was sick and you visited me, I was in prison and you came to me.' (37)  Then the righteous will answer him, saying, 'Lord, when did we see you hungry and feed you, or thirsty and give you drink? (38)  And when did we see you a stranger and welcome you, or naked and clothe you? (39) And when did we see you sick or in prison and visit you?' (40)  And the King will answer them, 'Truly, I say to you, as you did it to one of the least of these my brothers, you did it to me.' (41)  "Then he will say to those on his left, 'Depart from me, you cursed, into the eternal fire prepared for the devil and his angels. (42) For I was hungry and you gave me no food, I was thirsty and you gave me no drink, (43)  I was a stranger and you did not welcome me, naked and you did not clothe me, sick and in prison and you did not visit me.' (44)  Then they also will answer, saying, 'Lord, when did we see you hungry or thirsty or a stranger or naked or sick or in prison, and did not minister to you?' (45)  Then he will answer them, saying, 'Truly, I say to you, as you did not do it to one of the least of these, you did not do it to me.' (46) And these will go away into eternal punishment, but the righteous into eternal life."

The fact is, we can tell God how much we love Him and sing hymns like "Oh How I Love Jesus" a thousand times, but it is all meaningless unless we are showing Him our love through our actions. Jesus says that we can vicariously show our love for Him by serving those He loves.

Another passage that has a deeper meaning to me today is when Paul talks about this kind of love in Philippians 4:15-18.

And you Philippians yourselves know that in the beginning of the gospel, when I left Macedonia, no church entered into partnership with me in giving and receiving, except you only.  (16)  Even in Thessalonica you sent me help for my needs once and again.  (17)  Not that I seek the gift, but I seek the fruit that increases to your credit.  (18)  I have received full payment, and more. I am well supplied, having received from Epaphroditus the gifts you sent, a fragrant offering, a sacrifice acceptable and pleasing to God.

The church at Philippi had sent money to Paul to support him preaching the gospel. The three previous verses said that it was not out of greed that Paul wanted the money, but that they were able to "share in [Paul's] trouble." They were displaying their love for Christ by supporting Paul while he spread the gospel. It was their sacrificial hearts, not the literal money, that was such a sweet smelling sacrifice. God loved the Philippian brethren because they were willing to show their love for Paul.

Like Epaphroditus who delivered the aid to Paul from the Philippians, our friends from Tennessee delivered gifts to us yesterday that were sent from many people. Not only have many of those people sent us gifts to help with the medical expenses associated with our son, they also sent us gifts to help us take a getaway as a couple and several gift cards for date nights. All of the cards, hugs, messages, and gifts have overwhelmed us. We feel such love and support from so many. It is so difficult to think of how to show our gratitude. I certainly feel like "the least of these my brethren" of which Jesus spoke. I am confident your love for us has been pleasing to God.

God has given me a heart that is capable of sharing so much love. If my son were healthy, so much of my time and energy would have been spent on him. While I may yet get a few precious hours with my son after he is born, I—and my love—will outlive him. All of the love I would have shown to him in the coming years should not go wasted on myself. If I really want to love my son, I should act like God's Son and serve others. Every time I have the opportunity to put a smile on a child’s face or offer just a cup of cold water in the name of God, I can show that vicarious love for both my son and my Lord.

Barnabas the Elephant

Many people have asked us "how are you doing?" and we have no idea how to respond. Instead of posting a religious article, in an attempt to tell you how we are doing, I want to tell you the story of Barnabas the Elephant.

Our twenty week appointment with our doctor was scheduled for January 6th. This is usually when people find out the gender of their baby. To surprise our parents over the holidays, we decided to go to "Pregnancy Treasures" in Pinellas Park, Florida to find out early. As the ultrasound technician was carefully taking pictures, I could see before she told us that we were having a son. Though I would have been overjoyed to have a daughter, I made a huge fist pump in the air when we were walking to the car. The thought of our oldest being a boy made me so happy.

Long before I met my wife, for so many reasons, Barnabas has been my Bible hero. I said a long time ago that I wanted to name my son after Barnabas, but I knew that it would be cruel to name a kid "Barney." However, Acts 4:36 says "Barnabas" was a nickname given to him by the apostles. His real name was Joses. Although we had talked about it many times before, it was this day we decided for sure our first son would be named Joses Andrew McDonald.

Later that evening we met with two of our good friends at a mall in Tampa to see the second Hobbit movie. We parked near the JC Penny entrance and went through the store. We got there early so we decided to go look in the baby section. Megan was falling in love with everything made for little boys. She especially fell in love with a blue and white stripped plush elephant. We thought plush toys might come flooding in with baby showers so we decided not to get it that night.

Three weeks later, we got the devastating news that our son has Anencephaly. He never developed most of his brain or the top part of his skull. If he survives the birthing process, it is guaranteed that he will die shortly after being born. I have never cried so hard as I did that night. Up to this point, calling our parents and siblings was the hardest thing I have ever done.

We have known about our son's condition for a month now and there are nearly four months until his due date. The emotions we now feel are everywhere. Although we have found ways to laugh every day, our son is always on our minds. All of our lost plans and dreams hurt so much.

Last week has been especially hard. Between Megan and I, we had four Facebook friends whose babies were born within a 24 hour span. Three sets of parents took their baby home. One of them also had a baby with Anencephaly. Her sweet Daniel lived 39 minutes. 39 sweet, wonderful minutes. Our heart has been breaking for our friend that we have yet to meet in person. On the same day, a co-worker asked Megan, "Don't you know what your body is going to go through? Can't you take care of that?" It is not the first time Megan and I have been asked in a bewildered way why we are not going to abort our son. We are sure it will not be the last.

On the way to the mall on Saturday night to buy maternity clothes, Megan asked me if we could purchase one of those blue and white elephants. I had just been thinking about getting some kind of stuffed animal to name "Barnabas" for us to keep. I want something that can be with us for family pictures that represents our son. We do not ever want to forget him or leave him out of our family.

Unfortunately, they were out of stock of the full sized plush elephants, but we did manage to get the small one that is attached to a security blanket. Megan had the idea of covering this small one in kisses and burying it with our son. In a small way, a token of our love for him will be with his body until Jesus returns and calls for that body to be resurrected.

Holding Barnabas the Elephant now and knowing that it will be in the casket with my son is making this whole process so much more real. It is starting to sink in that there will be a point where I will have to hand him over to some medical professional I do not know and walk away. I will watch his casket being lowered into the ground. I will have to keep living my life without my Joses. The night we found out about our son's condition was the only night I have cried more than we did Saturday night holding this little elephant.

If you have asked us how we are doing, know that we appreciate your concern. Do not be surprised if we say we are doing fine. I wanted to write out what harder days have looked like for us. There is no doubt that we are grieving. Thankfully, we do not have to "grieve as do the rest who have no hope. For if we believe that Jesus died and rose again, even so God will bring with Him those who have fallen asleep in Jesus" (1 Thessalonians 4:13b-14). One day, I will be with my son "and so we shall always be with the Lord" (1 Thessalonians 4:17b). By these words we are comforted.

Edit: I posted this article and asked if people could go to JC Penny and look for the larger version of Barnabas. It seemed less than five minutes later that my brother sent me a picture in a text message of the elephant from a JC Penny in Nashville. Thanks for everyone who rushed to find one for us.

By Seth McDonald

February 3, 2014

The Problem of Perspective

 One of my greatest aspirations in life has always been to become a dad. Long before I was married, I had imagined many things I wanted to do with my children. It was not until my wife and I found out in December that we were going to have a boy that those dreams became more vivid. I could picture witnessing Joses’ first steps, reading him Bible stories at bedtime, and teaching him to drive a car. I had great joy in imagining what kind of man he would become. However, all of those dreams were crushed in January when we found out that Joses has a condition called Anencephaly. If my son is born alive, his condition has a 100% mortality rate shortly after birth. The doctors say the most we can hope for is holding our sweet son for a few moments before he dies in our arms.

It is so easy to see this just from a grieving father's perspective with all of my lost hopes and dreams of playing ball or going to a big league game with my firstborn son. Selfishly, I want to say "God! My son could have become a Christian and raised a godly family and perhaps have converted many people to you! Look at all of the good he could have accomplished!" This is David's point in Psalm 6:4-5 "Turn, O LORD, deliver my life; save me for the sake of your steadfast love. For in death there is no remembrance of you; in Sheol who will give you praise?" If my son is dead, how can he praise God to those who are living? These are the thoughts that often go through my head. It is similar to Paul’s dilemma in Philippians 1:21-24 “For to me to live is Christ, and to die is gain. If I am to live in the flesh, that means fruitful labor for me. Yet which I shall choose I cannot tell. I am hard pressed between the two. My desire is to depart and be with Christ, for that is far better. But to remain in the flesh is more necessary on your account.” While Paul is saying this after he had lived and served God for years, my son might be allowed just minutes of life.

My heart aches for the son I thought I was going to have. It is such a temptation to see things only through the eyes of a grieving father. My challenge is seeing this situation from God's point of view. Here are some points that I need to keep in perspective:

First, none of us live very long in this world. Life itself has a 100% mortality rate. “As for man, his days are like grass; he flourishes like a flower of the field; for the wind passes over it, and it is gone, and its place knows it no more. 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 to do his commandments” (Psalm 103:15-18). With eternity in mind, the moments that my son might live really are not that much shorter than a man who lives for a century. Instead of making Joses go through a life where he experiences temptation, sin, and heartache, God is sparing my son and guarantees him a place in Heaven.

Second, God is not bound by time. Though my son will not live very long from my perspective, God doesn't see it that way. As the apostle Peter says "But do not overlook this one fact, beloved, that with the Lord one day is as a thousand years, and a thousand years as one day" (2 Peter 3:8). God is giving my son the lifetime that he should have. In that lifetime, my son will receive a lifetime of love from his family and especially his God.

Third, God has planned from the beginning that my son would

have an impact on this world. Even though there was a potential for good to come through his life, there may yet be a greater good to come through his death. If this inspires my wife and I, our families, our future kids, and the thousands of other people we reach to "set [our] minds on things above and not on things of this earth" (Colossians 3:2), then my son's death would not be in vain. My son Joses could have a greater impact on me going to heaven than any other person I know. As David said of the son he met for just a short while, "I shall go to him, but he will not return to me" (2 Samuel 12.23b).

When I see things from God’s perspective, my son is the lucky one. He will have the prize for which every Christian longs. He will be a servant in Heaven for all eternity. While I may wish that I could hear my son call me “daddy,” God says “For my thoughts are not your thoughts, neither are your ways my ways, declares the LORD.  For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts” (Isaiah 55:8-9). Instead of blaming God for taking my son from me, I need to remember the advice of Solomon: “Be not rash with your mouth, nor let your heart be hasty to utter a word before God, for God is in heaven and you are on earth. Therefore let your words be few” (Ecclesiastes 5:2).

by Seth McDonald

I know my son is going to die.

I know my son is going to die. God knew His Son would die. If I could anything to stop my son from dying, I would. He could have done any number of things to prevent His Son from dying. Thank God that He loves me so much. 

John 3:16 "For God so loved the world, that He gave His only begotten Son, that whoever believes in Him shall not perish, but have eternal life."

Do not just thank Him. Submit to Him.

Glorifying God in Life and Death

My wife is 20 weeks pregnant with our son Joses. We were recently informed that Joses has a neural tube defect known as Anencephaly. It is a condition where my son never developed a brain. Since he has a brain stem and spinal column, he has a strong heart beat and will continue to grow while inside my wife. However, if my son survives being in the womb and the birthing process it is guaranteed that he will only survive a few minutes or at most a few days. While we are all destined for death (c.f. Hebrews 9:27) my son is destined to die shortly after being born.

A great deal of comfort has been given to me in these first few days by studying the book of Jeremiah. I first started applying it to my son when I read Jeremiah 1:5 "Before I formed you in the womb I knew you, And before you were born I consecrated you; I have appointed you a prophet to the nations." Just as God knew Jeremiah before he was formed, God has known my son from long ago.

The story of Jeremiah is a difficult one. He was given the task to preach to a stubborn and rebellious people that God said in Jeremiah 7:24 “will not listen to you.” However, Jeremiah had a purpose in life. If Jeremiah fulfilled his purpose by preaching, God would be glorified. Even when no one listened and Jeremiah was persecuted, God's name would be exalted through him.

In a prophecy talking to the remnant that would survive captivity, Jeremiah writes "'For I know the plans that I have for you,' declares the LORD, 'plans for welfare and not for calamity to give you a future and a hope'" (Jeremiah 29:11). God had a plan for them and He also has a plan for my son. According to our doctors, that plan includes dying within the next 5 months. However, just because there is death in his future, doesn't mean he does not have a purpose.

Jesus also had a purpose when He came to this world. He says in John 12:27-28 "Now My soul has become troubled; and what shall I say, 'Father, save Me from this hour'? But for this purpose I came to this hour. "Father, glorify Your name." Then a voice came out of heaven: "I have both glorified it, and will glorify it again." Instead of glorifying Himself, Jesus came like a servant to glorify His Master.

Everyone in this life has the same broad purpose: to glorify God. My son's purpose is no different. The details of that purpose are unclear. God is certainly capable of miraculously and instantly healing my son and then use him as a servant in this life. It is easy in my mind to see how this would be glorifying to God. Selfishly, this is what we would love to happen. However, it is not our place to ask why. Romans 9:20 teaches “But who are you, O man, to answer back to God? Will what is molded say to its molder, ‘Why have you made me like this?’" My son's purpose is to glorify God. If it glorifies God more to take my son home, that is what we want to desire. Perhaps his death will lead people closer to God. We hope that it will bring my wife Megan and me closer together and make us more like Jesus. Perhaps through our example of faith someone else will be brought to the Lord. We desire the same faith as seen in Paul when he said “for I know that this will turn out for my deliverance through your prayers and the provision of the Spirit of Jesus Christ, according to my earnest expectation and hope, that I will not be put to shame in anything, but that with all boldness, Christ will even now, as always, be exalted in my body, whether by life or by death” (Philippians 1:19-20).

Jesus said that the Pharisees and the lawyers in Luke 7:30 "rejected God's purpose for themselves." If God chooses to take my son in these next five months, Joses will have no control over fulfilling his destiny or not. He will do everything God wants him to accomplish. On the other hand, I have the option to reject God's purpose for me. Figuring out what my purpose is and how to fulfill it has been so strongly on my mind lately. Now, more than ever, I want to go to heaven to first meet my Savior but also my son.

First I realize that I have been created to be a servant. I have a Master who created me and has the authority to tell me what to do. My job is to serve the Father. I want to be like Jesus who said "For I have come down from heaven, not to do My own will, but the will of Him who sent Me" (John 6:38).

One way I can serve my Master is by serving the people He loves. Passages like Mark 10:42-45 and Philippians 2:1-8 use Jesus as the ultimate example to show me how to unselfishly, humbly, and without conceit see others as more important than myself. Not only is service what I am made for, but also what will give me the most joy in life. Worldly wisdom doesn't understand because it does not grasp the initial premise that man is created to be servants. However, even Lumiere from Disney's The Beauty and the Beast understands, "Life is so unnerving, for a servant who's not serving! He's not whole without a soul to wait upon." When I am not serving others I am not doing what I was made to do.

Second, I am created for "good works". Ephesians 2:8-10 says "For by grace you have been saved through faith. And this is not your own doing; it is the gift of God, (9) not a result of works, so that no one may boast. For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them." While this passage clearly says that we cannot earn salvation by works, it also teaches that we are "created in Christ for good works." It is only by God's grace and mercy and our faith that we can be saved. But the question is, what kind of faith do I need?

Jesus "gave himself for us to redeem us from all lawlessness and to purify for himself a people for his own possession who are zealous for good works" (Titus 2:14). This passage does not teach that we save ourselves through works, but that Jesus saves His people through His sacrifice. His people are those who are "zealous for good works." God wants people who are "zealous" to serve Him. This is more about what kind of heart you have and less about the details of the work you do. God does not need us to do anything for Him. For example, why do we give money to others and to serve the purposes of the local church? He does not need money (He is the Creator after all), but He does want giving hearts. The reason we give, attend worship, pray, sing, are baptized or do anything that can be called a "work" is to display our willing hearts to Him. True faith in God submits to His will and causes the faithful to do anything they can to make their Father happy.

Instead of going into details about more specific works, we should step back and see what Jesus teaches about the purpose for works in Matthew 5:14-16:

You are the light of the world. A city set on a hill cannot be hidden. Nor do people light a lamp and put it under a basket, but on a stand, and it gives light to all in the house. In the same way, let your light shine before others, so that they may see your good works and give glory to your Father who is in heaven.

When people in the world see our works and our attitude toward them, they will give glory to God. This should be my motivation to work hard for my Father. I should live my life as if Jesus were living in my place.

"Therefore we also have as our ambition, whether at home or absent, to be pleasing to Him" (2 Corinthians 5:9). This is my purpose.

By Seth McDonald

January 12, 2014