Approaching the End of the Marathon (Day of Life 220)

A quick snippet from a conversation in our house the other day that took me by surprise:

Ariana (11 years old, who is helping potty train her soon to be 3 year old brother, Cale) - "Cale, don't go tee-tee on Elmo (on his big boy underwear). Do you know what happens if you go tee-tee on Elmo?"
Cale - "He tell Big Bird?" (which is funny since he's seen maybe 3 episodes of Sesame Street in his entire life)
Ariana - "Right. Then what happens?"
Cale - "Big Bird kill me!."

So our 3 year old is being potty trained in fear of being pecked to death by a 7 foot, yellow bird. What can I say, we get desperate after 6 months of trying.

We got back last week from our vacation to Alabama and Florida. Thank you so much for those who prayed for us. We had a wonderful, peaceful, and dare I say, relaxing time visiting with dear friends. The beach, as usual, was gorgeous and empty. We had ZERO issues with the pregnancy while we were gone. And I got to take my "baby" beach pictures like I have with all of our kids outside the womb (seen at bottom of email).

Coming back home has been difficult in some ways for us. Tonya is now 33 weeks pregnant. If Anastasha follows the same pattern as her other siblings, we anticipate that she'll be born in the next 3 to 4 weeks. The reality is setting in that the end of the pregnancy is upon us and we'll soon get to meet our little girl. As you'd probably expect, it is a completely different feeling than we've had at the end of all the other pregnancies. It has some of the excitement and anticipation of finally getting to hold and kiss the daughter we love. But primarily, there is heartache and deep sadness...and some fear. Not fear in what will come per se, but fear in how we will respond and stand up under the pain of watching and walking through our daughter's probable death. We have nothing in our life experience to compare that kind of pain to. I wish that we weren't afraid, but we are somewhat. We want to respond faithfully like Job, who in his moment of greatest pain, "fell to the ground in worship and said: 'Naked I came from my mother's womb, and naked I will depart. The Lord gave and the Lord has taken away; may the name of the Lord be praised.'" (Job 1:21). Please pray with us that the Lord would turn our sorrow into joy and turn our "mourning into dancing" (Psalm 30:11). And also pray that Jesus' "perfect love" would "drive out fear" in us (1 John 4:18).

We are tired, both physically and even moreso emotionally. It feels like we've been running a marathon, at times at a sprinter's pace. I've been told (will never personally experience) that the last few miles of a marathon are the hardest. When there seems to be nothing left in the tank, the runner makes the final push to the end. That's exactly how we feel. Except that it feels like the final few miles of this marathon are up a steep mountain. We know the summit of our pain and struggle is ahead of us. And we aren't anxious to run there, other than for the fact that we know that is when we can begin our descent. Please pray for our stamina, both physically and emotionally.

Let me end with something that happened on our vacation.

Our first day at Panama City Beach, the surf was VERY rough. Even for this East Coast guy, the waves were impressive. The kids couldn't wait and got in the water before the adults did. We gave our "non-swimmers" life jackets to wear, but did not to the other kids. Shortly after getting in the water, Corban, who is 5, drifted off a bit by himself away from the others. Tonya and I were talking on the shore when she noticed that he was out a bit too deep. I could see that he was panicking a bit, so I ran towards him. At this point he was about 40 yards away from me, and it took me probaly 15-20 seconds to run/swim to him By the time I reached him, he was bobbing up and down in water well above his head (about up to my chin). I grabbed hold of him and began to make my way back to the shore, only then realizing how strong the undertow was. I've been in the ocean hundreds of times in my life, and I don't ever remember being in an undertow this strong.

I started back with him and for about 30 seconds really thought I would not be able to get us both to shore. About that same time, Niyah and Amalyah drifted out to me since they were coming to see what was wrong with Corban. Then THEY got caught in the undertow. I managed to get enough footing to get the three of them out of there and back to shore. By the time it was over I was exhausted and emotionally shook up. The whole thing probably lasted a total of 3 or 4 minutes but it seemed like half an hour. It was a scary time for all of us. I really believe that if Tonya had noticed Corban even 30 seconds later than she did, I would not have been able to get him and he would have drowned.

That night I was praying and journaling and thanking the Father for His great mercy. For me it was a great tangible lesson that God is sovereign over life and death. He holds both in His Hands. He could have just as easily taken Corban from us that day, but He didn't. He could just as easily NOT take Anastasha from us in a few weeks, but He probably will. And in both situations He is perfectly just AND perfectly GOOD. He is a merciful, loving God who's way are above our ways. And we trust Him with everything we are.

Blessings to you all.

Craig and Tonya

Our Good Father (Day of Life 200)

"Which of you, if his son asks for bread, will give him a stone? Or if he asks for a fish, will give him a snake? If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!" Matthew 7:9-11

When Tonya was told by our obstetrician almost exactly 3 months ago that our child in the womb had a fatal deformity, her response through her tears was simply, "God is good." That simple phrase has been our heart cry during these last three months. It sounds simple, but it is...SO...DARN...TRUE. Our God is a good Daddy, even when He strikes, it is in love. We believe that with all our heart. We agree with the psalmist who wrote, "You are good, and what you do is good" (Psalm 119:68).

We've taught the kids that the God they love is a good Daddy. Jesus mentions that His "Abba" (Aramaic loving term for "Daddy") is a Father who gives good gifts to those who ask Him. That can be distorted to mean that He gives us whatever we want if we ask Him. Any good Dad knows that ISN'T being a good Dad, quite the opposite actually. But, like a good earthly Dad, our Heavenly Father loves to give good gifts to His children, for our good and His.

I wanted to share one very personal and profound example of God being a good Daddy to us on this journey.

In previous emails I've mentioned a book that I read, I Will Carry You, by Angie Smith. She is a well known lady who is married to the lead singer of the Christian group Selah. Her journey of carrying and losing her daughter, Audrey, had many similarities to our journey. Her book really ministered to me.

After reading the book, I really wanted to ask her a question about something she wrote. I have read hundreds of books in my life and have never tried to contact an author after reading one. I'm not a celebrity chaser and try not to idolize people (okay, Tim Tebow and Danny Weurffel not withstanding...:)).

In my efforts to contact her, I found an email address on her blog. She had over 7,000 Google friends and lots of readers. In reading her blog I noticed that she just had a newborn AND had recently moved. As soon as I sent the email, I got an automated reply back stating that she received ALOT of emails and wouldn't be able to respond. I thought, "Oh well, it was worth a try. I guess this wasn't meant to be." Case closed. No one other than Tonya knew that I tried to get a hold of her. I was slightly disappointed, but life goes on. This was on a Saturday night.

On Sunday, one of my best friends, Jon Betts, called. He is a pediatrician in Nashville and a dear brother in Christ from medical school. It was shortly after Anastasha's diagnosis, so he was calling to check on me. I told him I was doing well and mentioned Angie's book that I just finished. He replied, "You mean the lady I met this week?". I was confused, so he explained.

Angie brought her newest daughter, Charlotte, in to see Jon in his clinic. He is not their regular pediatrician, but their's wasn't available. Jon didn't know who she was, but at the end of the visit Angie mentioned something about Audrey and how they had lost her. The news of our diagnosis was fresh in Jon's mind because he replied, "Yeah, we have some friends going through something similar right now." At that point, Angie said she wondered if we knew who she was or knew about her journey. Jon asked her if she was the wife of the lead singer of Selah, to which she replied that she was. Then Jon pulled up on his computer the email I sent where I shared her daughter's song ("I Will Carry You") just days before. They were both in awe of God's sovereignty.

Jon never solicited, but Angie told him to please give us her personal email address, and that she'd love to be able to answer any questions we have or be a help to us on our journey. He gave the email address to me. I've since emailed her several times back and forth and she had indeed been a blessing to me and Tonya.

I shared this story to show the power and lovingkindness of our God. I know it may not seem like a "healing the blind man" miracle, but it was miraculous nevertheless. For the first time in my life I tried to contact an author with a question that my heart wanted an answer to. My attempts failed, and I gave up. DAYS BEFORE I was even doing this, the Lord sent this ONE SAME PERSON to the office of one of my best friends in the world to bring her in contact with me. Isn't that incredible? Jon admits that he almost didn't mention anything about Anastasha to her. In fact, he's not even sure why he did. If he hadn't, he would have never even known who Angie was. I believe the Holy Spirit orchestrated EVERY DETAIL of that encounter. I believe God did that just to bless us like any good Daddy, and to build our faith at a time we needed it.

Maybe some of you can explain the whole thing away as coincidence. If you can, you have greater faith than I do. I think it is easier in this situation to believe in a God who knows the desires of our hearts and every hair on our heads. And to trust in a Daddy who loves to "give good gifts" to His children.

Craig and Tonya

Taste and see that the LORD is good;
blessed is the man who takes refuge in him.
Psalm 34:8

A kiss from Anastasha's cute little lips

But Even If He Does Not...(Day of Life 192)

Shadrach, Meshach and Abednego replied to the king, "O Nebuchadnezzar, we do not need to defend ourselves before you in this matter. If we are thrown into the blazing furnace, the God we serve is able to save us from it, and he will rescue us from your hand, O king. But even if he does not, we want you to know, O king, that we will not serve your gods or worship the image of gold you have set up."
Daniel 3:16-18

I love this story from Scripture. You may remember that King Nebuchadnezzar had set up an idol to be worshiped by everyone in Babylon. Shadrach, Meshach and Abednego were faithful Jews, serving in his palace. Their faith and trust in Yahweh prevented them from worshiping a false God, even in the face of the penalty of death. I've read this story to the kids many times, always as a story of great faith and how to stand up for righteousness even in dire situations. But when I read it this time, something else stood out about it to me.

When they told King Nebuchadnezzar that their God would rescue them, they quickly followed up with "But even if He does not, we...will not serve your gods". This is profound to me. I really think that they truly believed that their God could rescue them from their danger and eminent death. But standing there next to the furnace, they also realized there was a really good chance that they wouldn't be delivered and would perish in flames. And they wanted the heathen king to know that even if they weren't saved, their God was still good and true and worthy of all of their worship. Beautiful faith...not presumption in what God was GOING to do, but what He COULD do. We know the rest of the story, God the Son shows up in the fire, delivers them miraculously, and the king made a decree in Babylon that they or anyone else could worship the God of Israel.

We feel the same way. Our "blazing furnace", anencephaly, isn't threatening our lives, but that of our daughter. And even though it doesn't threaten to kill the rest of us, it does threaten to consume us. We believe deeply that God CAN heal and deliver us FROM this. But we also know that even if He doesn't, He will deliver us THROUGH it. Either way, we expect our Jesus to be walking with us in the flames. But regardless of what He chooses, we trust that He is good and worthy of our praise and worship...NO MATTER WHAT.

We had a 4-D ultrasound last Friday. Tonya's parents got to meet their granddaughter via the computer. The whole thing was more emotional than I expected it to be. We've seen Anastasha countless times on the ultrasound at my hospital after hours for fun, but something was different about going to a medical facility and doing it "officially". Everyone there knew about Anastasha's condition and were wonderful. Tonya cried on my shoulder before laying down for the test. It was, as she described it to a friend, "beautiful and painful". I agree. It was beautiful to see her moving around, full of life. But it was painful to see in three dimensions the details of the malformation that will likely take her from us.

Please pray for us. We are going away for a little while. Tonya is about 30 weeks pregnant now and, like all her other pregnancies at this stage, is contracting regularly. I'd REALLY rather not deliver this little one myself, 2 months premature, in Alabama or Florida. Pray that her contractions would settle down please and that she would be more comfortable as she has been having some increased amounts of "normal" pain lately.

And pray that our faith and trust in the goodness and sovereignty of God would be increased in this situation. There are days when our faith seems smaller than a mustard seed.

Craig

Anastasha's sweet little left foot, leg, thigh and hiney

The List (Day of Life 183)

Within a couple weeks of finding out that Anastasha had anencephaly, I read an awesome book called I Will Carry You, by Angie Smith. It is the story of her daughter Audrey, who, like Anastasha, was given a terminal prenatal diagnosis. Angie and her husband Todd chose to carry their daughter to term, as we did. Audrey was born and lived just over 2 hours. Todd is the lead singer of the Christian group, Selah. You may remember me sending the song (with the same title as the book) that they recorded for Audrey. Both the book and the song have ministered to Tonya and I deeply.

Angie mentioned something in the book that we thought was a great way to minister to her kids, and we decided to use it with our own. We told them that Anastasha will likely not be with us for very long or be able to grow up in our house like the other kids. Since the only time we will have with her is right now when she is in Tonya's womb, we asked them if there were any special things that they wanted to do with her before she was born. They came up with "Anastasha's List", a compilation of several things they want to do with their sister. I thought I'd share a sample.

Here are some of the things we have ALREADY DONE:

• Go to one of Charis' baseball games (we checked this one off the list dozens
of times, including the Texas state championship game)
• Go on a family bike ride (this was interesting. see picture below)
• Go to the movies (saw Toy Story 3 three times)
• Go to the chocolate factory
• Make family pizza
• Go on a waterslide (it was in our backyard, but it counts for us since we'd never get Mommy to a water theme park)
• Fly on an airplane
• Ride the glass elevator at Embassy Suites
• Go swimming (okay, so this was really Tonya jumping in a friend's pool to save Caius who dove in. I probably shouldn't mention that she went in, shoes, jeans and all.)

I wouldn't mess with this biker gang - all 9 kids!

Here are some of the things that the kids STILL WANT TO DO with Anastasha:

• Go to the zoo
• Go bowling
• Go on a carousel
• Go hiking at the state park
• Take pictures with her at the beach (we've done this we each of our infants)
• Color with her
• Read her a book
• Go to Six Flags and ride a roller coaster (probably not gonna swing that one)

One of the items on this list, flying in an airplane, is happening as I type this. Tonya is returning from her annual "girl's getaway" weekend with some of her best friends from residency (they always follow Beth Moore wherever she is speaking). She left early Thursday morning and returns late Sunday. I always tell her that it is one of my favorite weekends of the year (and not to take that personally). I get the kids, uninterrupted, for the whole weekend. It is VERY good for me, and a LOT of fun for the kids. We pitch a tent and "camp" all weekend (in the living room...it was 105 deg this weekend!). We ate junk food, went to Walmart and Sam's, got snow cones, and watched way more movies than we should have. We even went to Pukey-E-Cheese (uh...Chuck-E-Cheese) for a treat. I did manage to get the whole crew to and from church AND clean out Mommy's van. Lest I try to sound too like to much of a martyr, you realize the reason we did all of the above is because that is WAY EASIER than doing real life. Tonya rocks. I'm no competition.

This year, by mistake, the kids had their semi-annual dentist appointments while Mommy was gone. Not one or two of them, mind you, but SEVEN of them. So that was how we kicked off the weekend. We have a very accommodating dentist with great staff, so the visit went surprisingly smoothly. We pride ourselves on having great dental hygiene (I realize how ridiculous that is as I type it). In fact, with all the kids, we've only had ONE SINGLE CAVITY so far...ever, which I think is rather impressive. So here was the cavity count on Thursday.

Ariana - 0
Charis - 0
Adoniyah - 0
Amalyah - 0
Corban - 0
Caelan - 0
Cale - 9

That last number is NOT a typo (even thought 9 and 0 are next to each other on the keyboard). He didn't have one or two. He had NINE CAVITIES. Wow. Our little guy has something wrong with his enamel it appears. I think the Lord is humbling us for judging all of our friends/acquaintances over the years whose kids have tons of cavities and drink soda/tea/juice all the time. The metal mouth is coming soon. I thought you might get a chuckle out of that.

I gotta run. We need to clean the house (again) before Mom gets home!

Craig


PS. Thank you so much for all the responses to my last email. I looked up every Scripture reference that was shared. And I appreciated the thoughts on anger. It is pretty amazing what a wide variety of responses there were among Christians on that one. But I appreciate them all. Please, if you feel like the Lord leads you to a portion of Scripture that would help us on the journey, share it with us.

My little campers (and, yes, that is hard wood under the tent and not grass)

The Work of God (Day of Life 177)

One of the graces that I've enjoyed in the last two and a half months has been time spent teaching the children from God's Word. I've asked the Lord to direct me to passages that will speak to their hearts, especially in regards to Anastasha.

A few nights ago we found ourselves in the ninth chapter of the Gospel of John. It’s a story that many of you know well. Probably the most well known healing in all of Scripture, the blind man.

As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life. John 9:1-3

We discussed the fact that in Jesus' time many people viewed illness as directly correlated to sin or judgment from God. Jesus refuted this idea, instead stating that God intended this man's life long illness, in this case blindness, to occur in order to display "the work of God" in his life.

We all know what happens next. Jesus spits on the ground (my little boys love the fact that Jesus spits), makes mud, and rubs it on the man's eyes. After the man washes, he instantly sees. The man then gives glory to God.

We talked about Anastasha. We talked about the fact that she will be blind too. We discussed the fact that her anencephaly is NOT an accident. God intended it that the work of God might be displayed in her and our lives. This may be by healing, but likely won't be. Instead, God's glory may be revealed in another way.

The account in John continues...

Jesus heard that they had thrown him out, and when he found him, he said, "Do you believe in the Son of Man?"
"Who is he, sir?" the man asked. "Tell me so that I may believe in him."
Jesus said, "You have now seen him; in fact, he is the one speaking with you."
Then the man said, "Lord, I believe," and he worshiped him. John 9: 35-38

I believe that the "work of God" that Jesus spoke about was not just the healing, but the fact that his healing lead to WORSHIP. In regards to Anastasha, we of course desire her healing. But even more so, we desire that the result of her life will be to produce greater worship of God in our lives and others.

"So...Ariana, Charis, Niyah, and Amalyah, who sinned, Anastasha or her parents, that she has anencephaly?"

"Neither Anastasha nor Mommy or Daddy sinned. But this happened so that the work of God will be revealed in her life (and ours)."

Exactly.

Craig and Tonya



PS. Please pray for one of my older children who is really struggling with anger. I know this is a "natural" response to something this heavy, but that doesn't make it any easier to deal with. I don't struggle with anger towards God, and I'm thankful for that, but I really don't know how to shepherd this child through this struggle. I can deal with sadness, fear, even despair. But anger is a tough one that, quite frankly, scares me.

PSS. If any of you have any portions of Scripture that you think might be an encouragement for us as a family, PLEASE send them to us. God's Word has been our greatest source of day-to-day strength and joy.

The kids blessing Anastasha at bedtime

Brokenness (Day of Life 170)

One thing that has surprised Tonya and I as we’ve walked through our grief during the last 2 months is how easily others are willing to share their own sorrows with us. Many people we know (friends, patients) and many total strangers seem very comfortable pouring out their pains to us in all kinds of settings (doctor's office, grocery store, ball field).

We’ve heard story after story of women losing children, mostly through miscarriage, but sometimes older children too. I (Craig) have been struck by how painful a loss this can be, even decades later, having listened to patients recalling stillbirths from thirty or more years ago that they still remember daily. This is especially surprising in light of the fact that I think the general population doesn’t regard the pain of miscarriage to be very great. Many view it as something that a lot of women experience and, therefore, just a part of womanhood. It has challenged me to treat miscarriage as a very serious loss, even of those children that are too early to be seen or felt by the mommy.

I've probably had more real, deep ministry with patients in the last two months than I've had in the last two years combined.

Uh oh, I feel a sermon coming… :)

I think that the reason our journey with Anastasha has lead to so many people sharing their pain with us is because of our brokenness. We’re broken. There’s no hiding that. People see it in us, and I think are attracted to it because they are also broken. And guess what?

So are you.

Some of you know that all too well. You don’t need me to remind you that you are broken. You don’t hide the fact, and others know it too. I encourage you that this is a healthy place to be, because that is your true condition.

There are others of you that disagree. You’ve got it all together, or so you think. You don’t need God or anyone else. Maybe you aren’t walking through deep places of pain at the moment (although someday you will), and things seem to be going your way. I think this is a dangerous place to be, one that may ultimately lead to your destruction, both now and in the life to come.

But I suspect most of you are somewhere between the two. You know deep down that you are broken. You feel like a failure or maybe a hypocrite. Your marriage stinks; your job stinks; you're a lousy parent or friend. You think if anyone knew the true "you", they wouldn’t love you or even like you. So you hide it…from others, from God, and maybe from yourself. You might be using your money, your career, your family, your possessions, or even your religiosity as a guise.

My encouragement to you is to STOP. Stop living a lie. Stop pretending. See yourself for the condition you are really in – broken and in need of “fixin” (as any good Texan would say). It's okay to let others see it too. Then and ONLY then can you allow the Healer to fix your brokenness. Run to Him, as we have.

"The Lord is close to the broken hearted and saves those who are crushed in spirit" Psalm 34:18

The fact that many don’t believe or acknowledge that fact is really the foundation of pride. We pretend. We act like we have it all together. We work harder when the going gets tough. And when we hurt or screw up, nobody knows except us.

But your Father does.

Believe it or not, I firmly believe that the Lord LOVES our brokenness. I think He even DESIRES it. And that is because it is only in that place where we see our great need for Him. If we don’t know we are broken, we don’t acknowledge our need for help.

"A man's pride brings him low, but a man of lowly spirit gains honor." Proverbs 16:18

The gospel (the word literally means “good news”) is that there is a Fixer named Jesus. I need Him desperately. My whole family needs Him desperately. And so do you. And not just to fix our hurts and pains that come from this life, but to save us from Hell. Only He can do that. He's always loved messed up people. Even a cursory look through Scripture demonstrates that - swindlers, prostitutes, sailors, adulterers, liars - these were the people He chose to hang out with and change the world forever through. And the sooner you and I admit that we don’t have it all together, the sooner He can bring you and I to wholeness.

Brokenness is an awesome and terrible place to be. Terrible because it usually comes only through trials and pain. Awesome because it is probably the only time we are viewing ourselves and God in the right perspective. We remember all too well feeling this way almost a decade ago when Ariana had leukemia. Being broken was beautiful to us then, and it is again now. I only wish it didn't take earthly tragedy to lead us here again. One of my prayers is that we will be "given over to death for Jesus' sake, so that his life may be revealed in our mortal bodies." (2 Cor 4:11) - that as we die to ourselves, Christ would be glorified in us. And we pray for each of you that you would acknowledge the true state of your condition and come to know the Savior intimately as you put your trust and hope in Him.

Craig and Tonya

The sacrifices of God are a broken spirit;
a broken and contrite heart, O
God, you will not despise.
Psalm 51:17

Father's Day 2010 (Anastasha’s the round one in the middle)

The Constant Reminders of Life (Day of Life 159)

Because your love is better than life,
my lips will glorify you.
I will praise you as long as I live,
and in your name I will lift up my hands.
Psalm 63:3-4

Loved ones,

These days Tonya and I frequently find ourselves doing things we never wanted to do – namely, working on details of Anastasha’s funeral and burial. We are trying to get as much done as early as possible, so that we can spend our mental and spiritual energy on loving Jesus, loving one another (although we seem to fail miserably at this so often), loving the kids and loving Anastasha. But there are simply some practical things that need to be done, and are much better accomplished now instead of during the more difficult days ahead.

Twice in the past couple of weeks something happened that stopped us in our tracks.

The first time was when we had just left the headstone store (they call them “monuments”). We drove to the cemetery to try to find a plot and to look at some old headstones that we liked. We were fully engrossed in things like the shape, size, stone type of the headstones…err…monuments. And focused on the location of a burial plot – under a tree, far away from “gaudy” monuments, etc.

The second time occurred a few days later when Tonya and I were standing over our oldest son, watching him sand the wood that will be used to build our youngest daughter’s casket.

Both times, Anastasha chimed in.

She began vigorously kicking Tonya from within, as she has done so many times before, as a constant reminder of her LIFE. But to do it now, while we were picking her grave and building her casket, made it feel…well, wrong. Not that we SHOULDN’T BE doing it, like it was a wrongful act. But like we SHOULDN’T HAVE TO BE doing it.

Here we were, walking headfirst into our pain, telling “death” that we will not fear Him and that Christ will be victorious in us. And there she was, telling us, “I’m still here…fully alive.” For me, it was a great reminder for us to not focus so much on the death that is coming, but to embrace the life that we have right now. Especially since we don’t know how much longer we’ll have her.

We feel blessed in some ways that we know ahead of time what is probably coming (I say "probably" because we know that God can still show Himself to be mighty through healing her). We’ve seen several friends lose children unexpectedly. In a flash, they’re gone with no time to prepare. The shock and pain is indescribable. But the foreknowledge of Anastasha's likely death is also very difficult in other ways. Most days around our house are pretty “normal”. But deep down Tonya and I both know that hell is coming. I can’t really explain what this is like. I have no reference point for it. Tremendous joy today knowing that terrible pain is coming tomorrow. We don’t want to drown in the pain before it comes, but tasting the grief early is unavoidable, at times consuming the joy of today.

Incidentally, her casket is coming along well (Charis and our friend are making it to look like a cradle), and I think we know what we want her headstone to look like. And both of these things make me want to vomit.

Grace for each day, Father. That’s what You promise us.

Craig and Tonya

PS. A well known physician, author, and friend of mine, Dr. Walt Larimore, has been posting my emails on his blog. You can see the most recent ones here:

Good shot of Anastasha's arms, legs, and face (kinda curled up in a ball)

What is Life? (Day of Life 149)

Viability.

This week Anastasha is 24 weeks old in Tonya’s womb. This is (roughly) considered the time when a baby’s lungs are at the minimum maturity for her life to be sustained outside the womb. Anytime before 22/23 weeks is considered incompatible with survival if an infant is born. In medicine, we call milestone this "viability".

It may seem arbitrary, but this is when many people, including many ethicists and physicians, consider an unborn child a "person". To kill a baby before this time, many argue, is morally acceptable because it could not otherwise survive. To do it after this point is morally objectionable because he or she could live. Does this seem subjective to you? It should because it is.

This is despite the fact that the baby’s heart has been beating for 4 months, she has fingernails and toenails, feels and withdraws from pain, can suck her thumb, hear noises, and even hiccup. Sound alive? Yeah, she does to me too.

A very important and related question is this - "When is an unborn child truly human or alive?" Or, another way, "What makes a child’s (or man’s) life have value?"

If not mature lungs, how about when the heart starts beating? Anastasha's heart has been beating since 25 days post conception. This is about the time most women realize they are pregnant. Is a beating heart what gives life?

If not the heart, how about brain activity? This higher level thinking is one thing that separates us from animals. Maybe this is what gives a child or man his/her worth. Anastasha doesn't have higher brain activity. So is she "dead" for all intents and purposes? If it is higher level thinking, then what about someone who is severely mentally retarded? Or someone in a coma? Or an eighty year old man in a nursing home with end stage Alzheimer’s disease. Are they alive? Do their lives have value?

What about the ability to love? This is obviously a progressive thing. Newborns certainly can't. And children learn this over time. And some people chose to never love.

What about the first breath? This is when children begin to have protection under the law and are considered citizens. Killing them in the womb is legal, even at term in many states, up to this point. But once the first breath is taken, they are considered a human being, and killing them is murder. So is inhaling oxygen for the first time what makes us human?

As you can see, there are many different answers that many people consider. And these principles don’t just apply to babies. They apply to the elderly, those in comas, and those who are severely mentally handicapped.

My point is that these are all arbitrary, man-made attempts at defining something endowed to us by our Creator – life. He made it, so He defines it. Not us. And what is His definition of when Anastasha’s, and every other child ever created, life began?

From birth I was cast upon you; from my mother's womb you have been my God. Psalm 22:10

For you created my inmost being; you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made. Psalm 139:13-14

Before I formed you in the womb I knew you,
before you were born I set you apart. Jeremiah 1:5

Surely I was sinful at birth, sinful from the time my mother conceived me. Psalm 51:5

When Elizabeth heard Mary's greeting, the baby leaped in her womb, and Elizabeth was filled with the Holy Spirit. Luke 1:41 (John the Baptist responding while in the womb to Jesus in Mary’s womb, shortly after Jesus was conceived)

I think there is only one consistent answer in this world with so many subjective, seemingly arbitrary alternatives. We are FULLY HUMAN and ALIVE, at the moment of conception when our Creator endows us with an eternal soul. I think this is really the only Biblical answer to the question.

I agree that a two week old, microscopic baby that is known only by the faint "positive" line on the pregnancy test doesn't "feel" as human or alive as a baby in our arms after birth, but I believe that he or she is. The difference is really only in our subjective experience of the child at that point. This experience changes radically over time, but our perception of how much we love the child DOES NOT CHANGE HIS OR HER INATE WORTH. Just as the fact that a child in one family is unloved by his/her parents doesn't make him or her any less valuable than one who is deeply loved by other parents.

So what changes from that time when a baby is conceived to when he or she is born? Our experience of loving him or her changes. Just as it changes from when they are a helpless infant to when they are an older child who can relate and reciprocate love. Over time our love naturally deepens and the character of that love changes. But does the value of person we love change? Is their worth greater because we love them more or differently? No, it isn’t. I believe that we wrongly interpret that deepening love as defining a greater worth on the life we are loving. But it is all subjective, based on our experiences or emotions. I believe this is NOT God the Father's perspective.

So are babies that are miscarried early in pregnancy of the same worth, in God’s eyes, as a life lived fully for Him for 80 or 90 years?

Yes.

Is a mentally retarded child’s life of the same worth in God’s eyes as that of Albert Einstein?

Yes.

Is a person in a vegetative state (like a coma) for months or years have the same worth to the Father as the President of the United States?

Yes.

Does Anastasha, although she will probably never ride a bike, speak a word, hold our hand, think a thought, or love in this world have the same worth to God Almighty as my life or Tonya’s or any of our children’s lives?

Yes indeed.

Our value isn’t based on what we do, but rather who we are and by Whom we were created. Just like a painting by Picasso isn’t valued by what it does (nothing) or how beautiful it is (let's be honest), but is valued because of who the artist is. Our Artist, God Almighty, puts His signature in our souls. And because of that, we are each worth more than all the riches in the world.

Even Anastasha. Especially Anastasha.

So when many of you wonder why (few have asked us directly) we are carrying Anastasha to term rather than ending her life now, this is the reason. The truth is that her life is just as valuable as that of all of our other children, or my life or yours. She is right now FULLY HUMAN and ALIVE. She is created in the image of God Almighty. And she is our daughter. Will she live when she is born? Most probably not. But that does not, IN ANY WAY, change who she is right now. We feel no more like we have the right to kill her than we have the right to kill Charis or Ariana. I know that is a terrible mental image, but the repulsiveness of it is the same in our mind as aborting Anastasha.

Heavy duty stuff, I know. But we believe it to be God's perspective and, as such, to be true. We are challenged to love Anastasha deeply despite the fact that she will never love us back on this earth. And maybe many of you will be challenged to see ALL LIFE as created by God, for both His temporal and eternal purposes, and NOT ONE of those lives as being more valuable than another. And NOT ONE of those lives is a mistake.

Not ever.

Bless you all.

Craig and Tonya

Anastasha crossing her ankles like the lady that she is

One Month Later (Day of Life 131)

Yet this I call to mind and therefore I have hope:
Because of the Lord's great love we are not consumed,
for His compassions never fail.
They are new every morning;
great is Your faithfulness.
Lamentations 3:21-23

Loved ones,

It has been one month exactly since we found out that Anastasha has anencephaly. This has been a hard month, probably only second in difficulty to the month that Ariana was diagnosed with leukemia back in 2001. We’ve walked through the initial shock and terror where things felt more like a dream than reality. Now we’re moving into a place of acceptance and greater peace, despite the continued pain.

We are exactly halfway to Tonya's due date (20 weeks). Anastasha is about 6 inches long and weighs 6 ounces. She is already developing fingerprints and toeprints. She can blink and has a complete circulatory system. With the exception of her brain, all of her parts are fully formed and appear perfect.

Even though we are halfway through the pregnancy, there is no guarantee on how long we will have Anastasha. She could die in the womb at any time. She could be born very preterm. She could survive until term but die during the delivery. Or she could survive the birth process and live for some (way too short) period of time. We don’t know. We so deeply desire that Tonya will carry her until term and that we will get to hold her alive in our arms. But that is not promised to us. We just have today. And we do trust that her loving Father, Who created her, knows when her last heartbeat will be, whether in the womb or in our arms. And we know that He is good and will give us grace to endure the pain of her loss whenever and however it comes.

For now though, we are rejoicing in Anastasha’s life. It is of great worth, to us and to God. We’ve seen her several times on ultrasound. She is active and beautiful. We got a great picture of her hand with her index finger pointing the last time we did an ultrasound (attached below). We think she was reminding us to “look up”, which we’ve been doing a lot these days.

Father's Day last weekend was bittersweet. I always love that special day with the children, and this year was no exception. I got my 2010 addition of the "handprint shirt", which I always look forward to. But it was hard knowing that this was the only Father's Day that Anastasha would be here with us. I spent extra time in bed that night snuggling up with Tonya's belly, talking to my daughter and telling her how much I love her and how thankful I am for her life.

We are beginning to plan Anastasha’s funeral. It has been surreal at times and at other times nauseatingly painful. We are going to do many things non-traditionally and will try to include the kids in many aspects. As of now, Ariana (10) is probably making the burial gown, and Charis (9) and a good friend will be making the casket. That may sound a bit morbid, but we think it is good for them to give of themselves to their sister, and we hope it will aid in their own grieving.

The kids are doing well, we think. We talk about Anastasha constantly. It’s hard not to since Tonya and my thoughts are consumed by her. The kids bless their sister and sing “Jesus Loves Me” to Tonya’s belly before bed each night. We’ve had some heart-to-heart talks with the older kids, and they’ve shared their hurt, disappointment, fear and frustration.

Many of you have been praying for Anastasha’s healing. We welcome this. We’ve prayed for this and so have the kids. We know the Lord can do ANYTHING, including grow a brain for our daughter. But we don’t expect that He will. The Lord chooses when and how to perform miracles. But they seem to be the great exception, not the rule. We just make our requests known and let Him decide how to answer. Many of you may disagree with us theologically, and that’s okay. We’re not just guarding our hearts against disappointment. No one would rejoice more than Tonya and I if the Lord chose to heal her. But please know that our biggest desire is not for her earthly healing, but that the greatness of the Lord would be MAGNIFIED in Anastasha's life – whether in life or in death. May His glory shine through her for the world to see, whether it be for 80 seconds or 80 years. This is the prayer for all of our children, incidentally.

We want to thank so many of you who have supported us, mostly from a distance, with kind words of love and support. And also thank you to those of you who have been near to us and have supported us tangibly or with an embrace or tears. Romans 12:5 says “Rejoice with those who rejoice; mourn with those who mourn”. We are doing both, and so have many of you. Please know that this ministers to us deeply, probably more than anything else.

May the Father's tender mercies, which are new every morning, be with each of you.

Craig and Tonya (and the rest of the DeLisi crew)

Anastasha pointing upwards reminding us where our hope comes from

Introducing Anastasha

For you created my inmost being;
You knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made.
Your works are wonderful, I know that full well.
Psalm 139:13-14

Before I formed you in the womb I knew you,
Before you were born, I set you apart.
Jeremiah 1:5

Loved ones,

We are proud to introduce to you the newest member of the DeLisi family, our daughter, Anastasha (an-na-STAH-shuh). It is a Greek name that means “resurrection”.

Many of you didn’t even know we were pregnant. Anastasha hasn’t been born yet. She is nearly 5 months (19 weeks) gestation in Tonya’s womb. The reason that we are introducing her to you all so soon is because the day she is born is also likely the day she will go home to be with Jesus.

We found out two weeks ago that our baby has a birth defect called anencephaly. It is a serious malformation of her brain and, unfortunately, is incompatible with life outside the womb. As long as Anastasha is in Tonya’s womb, she is thriving, healthy and active. We’ve seen her several times on ultrasound. She is moving constantly and her heart is beating. Assuming the pregnancy goes as expected, she will be born in October. But barring a miracle, she will likely die during or shortly after birth.

Anencephaly occurs in roughly 1 in 10,000 live births. It wasn’t caused by anything Tonya did or neglected to do. It has nothing to do with her age, her thyroid, or the fact that this is her 9th pregnancy. For those of you who want to read and understand more about it, there is a great website that answers questions and even shares stories of some of the families who have given birth to babies with anencephaly.

Our hearts are heavy, and we are grieving for the life that will not be lived and the hopes we had that will be unfulfilled. Be we are determined along this journey to praise our Father through this storm. We know He created her and loves her. And in the same way, we love her. She is our child and feels as precious to us as any of our previous children. Her value to us isn’t because of what she will become, but because of the fact that the Creator of the Universe loves her and called her by name. She is an image bearer of God Almighty. Her life, however brief on this earth, has great worth in His eyes and in ours.

Some of you may be wondering if the baby is going to die shortly after birth regardless, then why don’t we just deliver her now (have an abortion) instead of waiting the entire pregnancy. The simple answer is because we believe that God created this life, and it is not our choice to end it. He gives life and takes away. It is no more our choice to end it than it would be for us to decide to prematurely end the life of one of our living children. The other reason is because this is the only time we get with Anastasha, while she is in the womb. As a family we want to cherish every kick, every heartbeat, every movement we see on ultrasound since we will unlikely have many, if any, of those things once she is born. Her life as part of our family will be brief, but we wouldn’t trade any of it to shorten the pain that is coming. We couldn’t even imagine such a thing.

“Is she even alive?” you may be wondering. Yes, she is. She is the most active child we’ve had at this stage in the pregnancy. In fact, Tonya felt her in the womb earlier than the previous 8. Her heart is beating. And even more important than that, she has been endowed with an eternal soul by God, which means she is not only “alive” right now, but will truly “live” forever when her life here ends. She was created, like all of us, to glorify God now and in eternity. And we believe she will do both.

We feel privileged that God called us to be Anastasha’s parents. We know He has good things in store for her life, as well as for ours because of her. And we know that in all things God works for the good of those who love him, who have been called according to His purpose. Romans 8:28

We are not angry. Like nearly a decade ago when Ariana had leukemia, we do not question God’s purposes in all of this. “Shall we accept good from God, and not trouble?" Job 2: 10. But make no mistake, we don’t want to be here. Neither of us feels like we have the strength, physically or emotionally, to get through this. We would gladly let this cup pass from us if He would allow. But at least for now, it appears He wants us to drink of it. The Lord has been gracious to deliver us FROM great trials in our lives (Ariana surviving cancer, Tonya’s thyroid mass being non-cancerous last August). But He also sometimes delivers us THROUGH great trials. And if He has chosen for us to walk down this path, we are confident that He will walk with us and sustain us.

Please pray for us in the days and weeks ahead. It has been a very difficult last two weeks, and we know that as the time nears for her birth and death, it will become much harder and more painful. Pray that our faith would be strengthened. Pray that we would never doubt the goodness and perfect Love of our Father, who is a good Daddy. You are good, and what you do is good. Psalm 119:68. Pray for our physical stamina, especially Tonya's. And pray that we would fix our eyes on Jesus and spend more time learning and growing in our love for Him as opposed to drowning in the difficulty of our suffering.

Pray for the children. Pray that their formative minds and hearts would not doubt the goodness of their Heavenly Father. Pray that they wouldn’t be angry with God if He chooses not to affirmatively answer their fervent prayers for healing. Pray against fear. The oldest four children took the news very hard. Pray that the Lord gives Tonya and I grace to shepherd them on this journey in a way that both acknowledges their honest feelings, and also points them to Jesus.

Please pray for those whose lives will be touched through Anastasha’s life. Pray that they would see the goodness and love of God in the face of hardship. Pray that others will be challenged to see her life the way we do and the way we believe the Lord does – as one of immeasurable worth and value, not because we love her or because of what she will ever BE or DO, but simply because the One who created her and loves her endowed her with such worth.

Finally, pray that Christ would be glorified in us and through all of this. We know that our brokenness produces a sweet dependence on the Lord. It is the Father’s design that trials and afflictions would lead us to rely not on ourselves but on God who raises the dead (2 Corinthians 1:9). Pray that the Lord does a good, everlasting work in Tonya’s and my life. We desire above all else that He be glorified.

Thank you for your love. We wanted each of you to be part of our daughter’s life from very early on. I know many of you will want to help in tangible ways. Mostly right now we just want you to pray for us as we press in to Jesus and to one another. You are welcome to share with others to pray for us as well. As time gets nearer to the end of the pregnancy, we may call on some of you for practical help.

May our Lord, who is a good Daddy, bless each of you. We love you.

Craig and Tonya

Anastasha's sweet little foot with 5 toes

In my distress I called upon the Lord; to my God I cried for help. From his temple he heard my voice, and my cry to him reached his ears. He brought me out into a broad place; he rescued me, because he delighted in me.
Psalm 18:6,19

Sing to the Lord, you saints of His;
Praise His holy name.
For His anger lasts only a moment,
But His favor lasts a lifetime;
Weeping may remain for a night,
But rejoicing comes in the morning.
Psalm 30:4-5

PS. Here is a perspective of a family who had a son with anencephaly that ministered to Tonya and me.

Chase's Story

PPS. We’re sending another email with a song attached that has blessed us these past few weeks. It is a Casting Crown song from a few years back. It reflects the desires of our heart.