Thank You!

The only thing I can really say when I stop and think about all of you who are coming here and reading and praying for us is “Wow!” I am so blown away by it, and so grateful! I tell you what, if I ever start thinking “I’m not half-bad at handling crisis” or something ridiculous like that, all I have to do is think about the countless prayers that are being lifted up for me, and I know without any doubt that I am being carried by your prayers with God’s strength. To say it is humbling wouldn’t quite cover it all. It’s also convicting! Now that I am depending not only my own prayers, but also the prayers of others to help get us through this storm, I feel a sense of sadness that I have not had the urgency in my life before this to pray fervently for others when they are going through a crisis. In fact, I think in the past I have found myself analyzing the individual situations that come across the prayer request sheet more than actually lifting them up to Jesus and asking Him to carry them through and give them what they need. I pray that this will not be the case anymore, as God continues to give me new eyes for viewing the world around me.

Yesterday I was reminded of Frank Peretti’s books This Present Darkness and Piercing the Darkness. It has been years since I have read them, but I remember so vividly the powerful picture he paints of prayer warriors. He helps us see the work of prayer with human eyes by envisioning the demons and the angels gearing up for battle and being ever present in our daily lives. If you have read the books, you know that the angels are always praying to God and asking Him to lift up saints to give them “prayer coverage,” and as people pray, more and more angels are allowed to come and do literal battle with the demons who fight so desperately against them. I can picture a similar thing going on right now in our lives. I can see the demons like Despair, Anger, Bitterness, and Jealously all vying for the opportunity to sink their claws into us, but they can’t because the angels of heaven are standing guard around us, protecting us from their poison. I don’t know if this is exactly how it works, but I also don’t think it’s too far off the mark, and I take comfort in it!

I want to leave you with a few more things that I would like to ask you to pray for. I haven’t really doubted that God was going to use Poppy and her life in a beautiful way, but I haven’t given a lot of thought to how He was going to do that tangibly. Then yesterday it hit me that, in my eyes, the most amazing thing that could come out of this would be for someone to come to know Jesus as a result of Poppy’s life. This is going to be one of my prayers from this time forward. Also, please pray that God will give me wisdom in knowing how to share what is going on with people who haven’t yet heard. Just a few days ago I ran into a girl I used to work with, and she asked me what was going on. I froze. I didn’t want to just unload on her, yet at the same time the classic “not much” just didn’t seem to cover it. I know that I will face more situations like this in the future, so please pray that God will show me how to deal with this in the right way. Thank you, thank you, thank you for your love and prayers!

Thinking..

It hardly seems possible that only two short weeks have passed since I sat down to write the first post for this blog. I’ve easily learned more in these past two weeks than in the months or possibly years preceding this news, but that is only confirmation to me that Jesus is using this in my life, and for that I am grateful. One thing I have been doing a lot of in the past weeks is thinking. I feel like I think and think and think until sometimes I wish I could stop thinking. I know that the extra thinking just comes with the territory, but at the same time I’m facing the struggle of “taking every thought captive” as my 12th grade Bible teacher stressed so regularly. I know thinking in of it self isn’t bad, yet I know that it can also lead to anger and frustration as I try and understand God and fail. I can remember my grandfather saying that he wouldn’t want to serve a God he could understand because then that would put God on our level. I believe that with all my heart, and I want to continue walk in the knowledge that I won’t ever be able to comprehend or work out logically in my mind all of the ways of God, and that’s just the way it should be.

That being said, what has been most prevalent in my thoughts, not surprisingly, is suffering. I’ve kind of categorized it into three broad groups: 1) suffering brought on by your own sin 2) suffering brought on by other people’s sin 3) suffering that is apart from human control. God allows them all, and I don’t think any kind is easier to deal with than another, but I feel like I at least understand the suffering from the first group. It makes sense in my mind that actions have consequences, even if they are devastating. The second group has always been harder for me. I know that I will never be able to understand events like the Holocaust, the Crusades, or the terrible genocides that plague history. My heart aches when I think of the suffering that humans have endured at the hands of other humans, and so much of me wants to question how God can allow it. But whenever my mind wanders to this point, I remember that above all else, it breaks God’s heart. What comfort there is to know that Jesus knows more than any person who has ever walked the earth what it means to suffer, and He cries and hurts with His children when they suffer at the hands of evil.

The third group is where I find myself right now. I know that God chose to allow Poppy to be created with an extra 18th chromosome, and that is hard. There is no one to blame or point a finger at but God, and I know that is what Satan is tempting me to do each and every day. If just for a second I start walking in my own strength and wisdom, I can see so clearly where the path will lead: straight to bitterness, anger, and depression. But, thank you Jesus, I am not bound to that path! God has been so clearly impressing the depth of His love for me in this situation that I am getting to the point where I can truly say “Thank you for the suffering!” because I know it is not without purpose.

Illustrations have always helped me grasp difficult to understand concepts, and I feel like God gave me one the other day to help me get my mind around the kind of suffering we are going through right now. He showed me that it is similar to me taking Marianna into the doctor for her vaccinations. I know that there is no way that I can explain to her ahead of time why the pain of the shot is necessary to keep her healthy and safe, so I don’t even try. All I do is hold her tight while the nurse stabs the needle into her soft skin, and then comfort her until the sting of the shot goes away. When we walk out of the office together, I know that she doesn’t understand why I let the nurse hurt her, but she doesn’t dwell on it. She just knows that she is safe and that I love her. I know it must be the same way with God. My mind cannot understand the “why” behind the hurt, and so God doesn’t tell me what I couldn’t possibly comprehend. Instead, He loves me and puts His arms around me and gives me strength that I don’t have on my own. Just like Marianna, I want to be able to say in my heart, “It is enough, Jesus, to know that you love me, and that I am safe in Your hands.” Psalm 55:22 says "Cast your burden upon the Lord and He will sustain you; He will never allow the righteous to be shaken." Amen!

A Moving Picture

Yesterday, we were driving while the sun, still high in the sky, was behind us. The pavement was bright with the light of the sun and was blotted out in but a few places where tall trees cast their shadows on it. I really wouldn't normally notice this sort of brightness because it's not unusual. What was unusual was the enormous, looming cloud before us. The cloud was just close enough to us that I couldn't see blue sky out of my windshield, but it was far enough away from the sun so as not to darken the trees around us and the road ahead of us. As we drove toward the ominous sky ahead, the visible light of the sun gradually paled and the road became dark while a few raindrops splashed on the hood of the car.

God has greatly used some precious friends in my life this past week. They have taught me that as difficult as this journey has been for us this past month, the way will get darker. I have learned from them that it is so vitally important to focus on the source of the light even when the light itself seems hidden from me. I am beginning to comprehend that my greatest hurt and my deepest grief is yet to come.

That moment in the car was a time of great revelation to me. It is as if God chose to metaphorically unveil this journey that I will travel as I wait to kiss Poppy for the first and last times. I certainly believe that the grief which I've felt to this point has been serious and deep, but those friends have shown me that I'm just on the edge of the storm. In fact, I believe that I'm still on the sunlit path and that the deepest darkness, while plainly in view, is still before me.

If not for the sufficiency and wisdom of the Father, I can tell you that I would be overwhelmed with great fear and terrible depression. I saw the storm on a radar just a few minutes later and it was but a small blemish on an otherwise clear and beautiful world; the storm was so tiny compared to the rest of it all.

The Lord's kindness is evident to me in innumerable ways, two of which are the lesson that He taught me through my wonderful friends and the living picture of that lesson that He painted when He allowed for a brief moment that everything around me should appear strikingly similar to everything inside of me.

Papa

Any of you who know me well, know that my grandfather meant the world to me. There is no one else who can ever possibly fill the special place he had in my heart; there’s nothing else to say except that he will always be irreplaceable. It’s been 21 months since he’s been gone, but I’ve been thinking about him more than usual since we’ve known about Poppy. On that day in July when we got the news, I began missing him all over again. At first, I was sad because I wanted so badly to be able to tell him, and hug him, and have him just to be there. But since that initial wave of emotions, I’ve been struck on several occasions by the fact that even though he’s not here, he still teaches and encourages me by the example he set for me all my life.

There are so many things that could be said about Papa, but to me one of the striking characteristics of his life was his positive attitude and his determination to have joy in every situation and circumstance. When he was in the hospital for gallbladder surgery, he was found jumping up and down in the bed. When he was recovering from open-heart surgery, I never once saw him down. When he was undergoing chemotherapy for colon cancer, he took me out in a speedboat and drove like a wild teenager and laughed until tears ran down his cheeks. When speaking of his chemo he told us, "It's kind of like a hobby for me." He had a gift. His enthusiasm and love for life were contagious, and they drew people to him.

When I was about seven, my mom and sister and I went through a crisis in our lives, but through that very dark year, I remember so clearly how much fun Papa brought to my life. We would race home from church, watch silly movies, play monopoly, watch his favorite cartoon “Roadrunner”, and just plain have fun. That’s not to say that Papa ignored the seriousness of the situation or looked down upon crying or expressing grief, because no one could have been more compassionate. He simply taught me at an early age that even in the times of greatest sadness, it is okay to laugh and live life.

All of this came rushing back to me a few days ago when I realized that I had subconsciously been walking around with an obligation to be somber. At the doctor’s office when I walked in and the receptionist asked me how I was, I found myself responding in a subdued tone that I was okay. When I went about my errands, I realized I felt a need to let the weight of the situation filter out into my mannerisms and expressions. There’s no other way to say it except that I felt that I needed to maintain an attitude of gravity. Then all of the sudden while I was driving in the car, something in my mind triggered a memory about Papa, and everything about his love of life and laughter flooded over me. In fact, I started laughing at myself as I drove along. It dawned on me that God has been giving me a supernatural peace and strength, and to ignore that by trying to put on a seriousness that I wasn’t even feeling is just plain, ugly ingratitude for what He is doing in my heart. The truth is, I am experiencing a wide gamut of emotions, but throughout most of my days, the primary emotion is not grief. It comes in waves and it hits me at unexpected moments, and in those moments, I know it is okay to cry and call out to Jesus. But, in the meantime, I feel such a freedom in knowing that God wants me to live. He wants me to have happy and wonderful moments in the middle of this dark time in our lives. I feel it from the bottom of my heart, and so now, I’m focused on just being honest with my emotions. When I am happy, I want to be happy without any guilt, and when I am sad, I want to feel the freedom to express that as well. I read a verse that confirmed this in my heart this morning. It is from Psalm 116:9, and it says “I shall walk before the Lord in the land of the living.”

There are dark moments ahead of us, and I pray God that He begins right now to prepare us to handle the force of those waves of grief that are to come, but for now, He has given me Poppy, and I want to rejoice in the time I have. I don’t take one little kick or movement for granted. I don’t know how much time God will give us with her, but I know I have her today. And when Jesus takes her home, I already have a comfort in knowing that Papa will be there to welcome her to heaven.

Great News!

I read this today and it really lifted my spirits...

You will make known to me the path of life;
In your presence is fullness of joy;
In your right hand there are pleasures forever.
(Psalm 16:11)

Here's what I think that means:

You will make known to me the path of life;
God knows it all; there are no mysteries to Him. Furthermore, He will reveal His plan to us in His time. I can't understand why this is happening to my family, but I rejoice in knowing that He is in control.

In your presence is fullness of joy;
Our source of comfort is Jesus Himself. The comfort is not partial because it lies with a perfect Savior; He is complete and total and His comfort is beyond sufficient. Despite this present pain and the looming loss that I so greatly fear, I am provided for and I need to lean hard on Jesus.

In your right hand there are pleasures forever.
Our Lord holds all that is good and that supply is not limited. Poppy's condition is temporary and He plans to unleash on Angie, Marianna, Poppy and me all that is perfect.

Thank you, Jesus, for this wonderful passage!

Blessings Abound

I will sing to the LORD,
Because He has dealt bountifully with me.
Psalm 13:6

OK, you're going to have to hang in with me for a minute because what I'm going to say isn't going to seem rational. Here it is: Poppy's situation is a wonderful blessing. I know, I know, that's crazy. I'm supposed to say, "this is a blessing in disguise," not "this is a blessing." I don't want to call it a disguise, though, and I'll try to break this apart for you.

As well as I understand the adage, "a blessing in disguise" refers to finding something of value somewhere unexpected or receiving something good because of something not-so-good. One weak example might be fretting over and looking for a lost Lego piece and stumbling upon a $20 bill in the process. Or maybe being delayed in getting home because of a car wreck instead of being in your house when a storm destroys it. I think that the keyword is probably surprise; it's about expectations.

Now, to Poppy. For me to call her situation "a blessing in disguise," I'd be placing the focus on circumstances revolving around her instead of simply on her. While I have been greatly blessed because she has Trisomy 18, I think those are secondary blessings. The primary blessing, the real object of value in all of this, is our fragile baby.

Greater than the lessons from Poppy's disease is my daughter herself. Poppy is a child and children are a gift from God. A child's sickly condition does not make her less of a gift. The very fact that God has allowed me to be her father is so amazing. I may never see her personality develop to its finished state, but I have no doubt that she would be every bit as wonderful as her mother and sister are.

Call me stubborn, but this is why I won't say "a blessing in disguise." Jesus loves Poppy exactly as she is and not because of how she can bless me or others or because she has particular physical needs. Her value is not in how she can be used or in her fragility, but in that she was made in God's image for His glory. Yeah, I'm going to hurt and losing her will be terrible and excruciatingly painful, but isn't God bigger than my anxiety and my fear?

So, I'm singing that Psalm with David. God has blessed me greatly and perhaps the greatest blessing in my life is my family, of which Poppy is an integral part. When I think of her, I refuse to make Trisomy 18 the focus. Instead, I choose to fix my heart on my precious and wonderful daughter.

It's All a Matter of Perspective

For I proclaim the name of the LORD;
Ascribe greatness to our God!
The Rock! His work is perfect,
For all His ways are just;
A God of faithfulness and without injustice,
Righteous and upright is He.
From the Song of Moses (Deuteronomy 32:3,4)

Have you ever experienced that sinking feeling when the front end of your car crashes into another vehicle? ("Oh no! This changes everything.") Or perhaps have you ever been the subject of a dull headache when something that you'd forgotten to do comes to mind and you then hadn't the time to finish it? ("Well, this messes it all up!") Or the 'classic:' you're sitting in the car or airplane, well on your way to your destination, and that "What did I forget to pack?" thought finally dies away when you remember what you did indeed forget? ("There's a wrench thrown into this vacation.") The troubles that come with these instances are usually trivial and, at worst, inconvenient. They are also a weak comparison to my recent shift of perspective, but I hope that they will help you begin to understand what happened in my own life on July 25, 2007, a day I'm sure I will never forget.

Wednesdays are usually very uneventful for me: I go to work, I eat my chicken sandwich for lunch, I go home and hug my wonderful girls. This Wednesday was different, though; at the doctor's office we would learn whether Marianna's new sibling was a boy or a girl! I left the office before the morning was in full swing and Angie called my cellphone; we love to talk to each other when we're both in the car, so this was normal and fitting. Other than both of us fretting over whether I'd make it to doctor's office before Angie was taken to the ultrasound room, I don't remember much of our phone call. But I do remember one thing: Angie expressed concern and said, "I hope everything is OK." Stepping into the "everything will turn out fine" shoes that every husband wears from time to time, I appropriately told her, "everything will turn out fine." I wouldn't say that I was wrong in fact, but I would say that I was wrong in my perspective...

You know what happened. After visiting two different doctors and crying many tears, my perspective changed. Not, of course, like my earlier examples, but in a way where the norm of everyday life comes wildly and painfully screeching to a halt. Not trivially, not inconveniently, but totally. My morning perspective had been happy and excited and carefree; my afternoon perspective became sorrowful and nervous and anxious. We couldn't yet put a name on our dear Poppy's condition, but we could clearly see that she was not as we expected. Everything had changed.

I've since thought about Psalm 139, where David speaks to God:
For you created my inmost being;
You knit me together in my mother's womb.
I am fearfully and wonderfully made.

I have always believed those verses, but I've never believed them as now. Poppy herself is no accident; her condition is no mistake. Sure, this disease is the result of sin, but God Himself has formed our baby with His wisdom. Much as a skilled artist's practiced hands weave a beautiful tapestry, but far better, is how God's hands have woven our dear daughter.

So, I was wrong about what I said. Everything had not turned out "fine" as I had meant it. But, everything has turned out "fine" considering God's plan. Moses wrote, "His work is perfect," remember? I believed that before, but it's changed me now.

I was wrong about my perspective, too. Not everything had changed, just everything that Nathan had planned. The doctor's findings hadn't changed Poppy. Truth hadn't changed. God's plan hadn't changed. God's provision hadn't changed. Neither had His word, or His strength, or His comfort.

Poppy is beautiful. I don't care what anyone says, she's perfect and she's whole. I might have thought before July 25th that I wouldn't want her to be the way she is, but she is the way she is and I can't change her. God has made her, and I don't want her any other way.

specific prayers

I wanted to give a quick list of specific things we would like you to join with us in praying for.

1) I have felt very unsure since we went to the original ultrasound exactly what I wanted to pray for, other than an all out miracle. To be honest, I originally prayed that they would find her brain dead so that I would not have to carry her to term. Already, I’m grateful God did not answer that prayer! Since Monday’s confirmation of trisomy 18, I’ve really felt at a loss of what to ask for. Of course I know God is still completely capable of working a miracle, but aside from healing, I’ve been torn as to which scenario I would choose if it were totally up to me. At first I thought I would pray that God just give us what we need, and in way, that will continue to be my prayer throughout each step of this journey. But, I believe that God loves it when we pray specifically, and I have decided that what I want is to pray that Poppy gets to live long enough for everyone who loves her to get a chance to hold her. I want her to make it to birth, and I pray God will give us enough time for each person who is a part of her life to be able to spend some precious time with her.

2) We have still not decided how to approach talking with Marianna about Poppy. Up to this point, we have chosen to really say nothing at all. I have thought through the different options, and so far I just don’t know which one is best. I realize that she is just 21 months and so her level of comprehension is going to be minimal no matter what we decide. But I want to do what is best and healthiest for her. Please pray that God will show Nathan and me exactly what to say and when to say it.


3) There are so many unknowns ahead of us in the next months, and my natural impulse is to want to plan, plan, plan. I know we need to be prepared, yet at the same time I realize that one of the most difficult parts is going to be the waiting. I am praying every day that God will teach me that it’s okay to just take things a day at a time. Because of the uncertainty of the situation, the only option is just to bring each concern to Jesus and let Him take care of each one in it’s own time. Pray that God gives Nathan and me the grace to do this daily.

I am so grateful for each of you. Please know that each thing you have done, big or small, means so much! Most of all, your support in just reading and praying and caring is so important to us! I am truly thanking God for you each day!

Provision

This morning when Marianna woke up, instead of calling out her usual “Mommy, where are you?” I heard her little off key voice singing through the monitor. The sounds were too muffled to understand until I walked in her room and heard the four words that have become a refrain for her over the past few days. She was singing loud and clear “God is So Good.” Those four words are the only ones in the song she knows, but she has begun to sing them in various rhythms and tempos all throughout her day. She has known the words for several weeks, but she did not take to singing them on her own until just moments after the doctor called me Monday morning to give me the news. Through my tears, I sang those words with her until I felt like I had what it took to start making the phone calls nobody wanted to hear. I know that Marianna doesn’t have a clue about the words she is singing, but I also know that it is no coincidence that she has begun singing simple song over, say, “Old McDonald had a Farm,” which is an equal favorite of hers. To me, it has been God’s clearest and most beautiful reminder that He is indeed good, and He will never suffer me to be harmed.

In fact, in a time where circumstances seem to demand despair, I find that we are being pumped through with hope and peace everywhere we turn. Out of the woodworks it seems, people have come forward to share their love and support in so many wonderful ways. My amazing grandmother, the rock of our family, created a hand written collection of verses for us pertaining to encouragement in times of trouble. People who have experienced heartaches, both similar and unrelated, have shown us their deep and empathetic love. Many who I have never met, and likely never will on this earth, have taken the time to tell us that they are praying for us. My sister created a beautiful collection of verses, one for each day of the month, that I can pray and lift up in Poppy’s behalf. Perhaps best of all, God brought me encouragement in a most unlikely way through connecting me with someone who I can share “fellowship through suffering” as Paul says in Phillipians.

Each of these provisions has been perfectly timed to help me face what is next. Today when I went to my doctor’s appointment, I felt that all of the promises sustained me on what was the first of what I’m sure will be many very difficult visits. It’s not easy seeing the words “has chosen to keep pregnancy” scrawled on my chart, or to realize the simple routine things such as measuring my belly don’t really matter. It was hard to hear my doctor gently encourage me to begin considering what life-saving measures we will and will not allow the doctors to take if Poppy makes it to birth. But, while difficult, it was not defeating!

All of this has opened my eyes in a new way. It has caused me to be aware of suffering outside of my immediate sphere of relevance, and it has even given me a strong desire to be able to lift others up who are suffering, no matter what the cause. Jesus knows that we need each other for encouragement and love, and I can only think that He must be pleased to see how His children have reached out to love us. I hope I can do the same for many, many more people throughout my life.

First thoughts

Yesterday I received confirmation from my doctor that what he had feared was indeed true: our precious little girl, Poppy Joy, has a chromosomal abnormality known as Trisomy 18 or Edward’s Syndrome. What this means is that she has an extra 18th chromosome, which consequently puts her little body at war with itself. She is, as the medical world deems her, “incompatible with life.”

It’s hard to put into words what you feel when you hear the news that, barring a miracle from God, your baby does not have a chance to live. Already we have experienced shock, grief, and such an intense sense of loss. I feel loss at the thought that I cannot joyfully tell people when little Poppy is due and enjoy each stage of pregnancy. I feel loss knowing that Marianna will not have a little sister close in age. Most of all, I feel the loss of knowing that Nathan and I will not be given the opportunity to raise this little girl and watch her grow up. That is definitely the hardest reality of all. But in the midst of that, we are so grateful to God that He has given her to us. We have been praying for a miracle since we received the news that the ultrasound results did not look good. I know with everything in me that God has heard every one of those prayers, and He is answering us with a miracle. I know that however long she is here, Poppy is a miracle.

Do we understand why this is happening? We don’t even begin to. Yet, even without the understanding, I know that Jesus chose to give her to us for a reason. It wasn’t a “freak” occurrence, but rather something that God wanted for us. That doesn’t mean I would have chosen it on my own, because it would have been the farthest thing I would have ever allowed. But there is great peace and joy in knowing that God has a plan for her that is beyond my human understanding. It has already occurred to me that she is going to be able to point people to Jesus in a way that a “normal” child never could, and that thought makes me so glad.

It is my hope that through this blog our friends, family, and anyone else who wants to be part of our journey will be able to better understand what we are feeling and thinking and know better how to pray. I know we can’t do it on our own, but maybe that’s the whole point. Maybe one of the biggest lessons Poppy will teach us is daily dependence on Him. As a precious friend told us last night, God just asks us to go in the strength we have. That’s what we plan to do each step of the way. Thank you for walking this road with us.