From the Heart of a Daddy

The Bitterness of Insensitivity and the View from Eternity

Insensitivity. I’ve tried ignoring it. I’ve tried confronting it. Either way it’s making me bitter; bitter because I’ve allowed myself to be insensitive, and bitter because confronting it frustrates the motivation to change right out of me.
On June 22, 2009, the momentum of my life came to a lurching halt. Someone pressed “pause”, and I suddenly became strangely conscious of the beat of my heart as I listened to a diagnosis I didn’t want to hear. And when that diagnosis was finished being laid out like a cadaver on a cold table, the dissection began. What happened? Did we do something wrong that caused this to happen? What’s next? What will happen from here?
I walked out of a building that day with the new and unwelcome knowledge that my daughter, whom I had yet to meet face to face, would not live the life I desired for her. In fact, she wouldn’t live to see her first birthday. On top of that, a very strong chance existed that the date of her birth would also be the date of her death.
Three months have now passed and someone has yet to press “play”. I’ve been circling in this holding pattern whose monotonous existence seems to be numbing my ability to feel. Initially, right after the diagnosis, emotions flooded my life until I was so saturated they could do nothing but poor out of my soul like blood from a fatal wound. And when my body was completely drained, insensitivity began to set in like decay. I stopped confronting my feelings. I didn’t try to deal with them. I became insensitive to my wife and to others. My answers to the question, “how are you all doing?” became contrived. I stuffed my feelings into a dark attic and neglected them like an apathetic parent neglecting his child. Hmm…there’s an interesting metaphor when you consider the fact that I could turn it around and still be defined by it. I’ve been neglecting my child, my unborn child, like an apathetic man neglecting his feelings.
That needs to change because I’m running out of time. It’s been a long pause, but inevitably “play” will be pressed again and I’m going to enter an entirely new stage of life. So, let’s take a look at some emotions.

Guilt
Now that’s a feeling I know. Obsessive Compulsive Disorder seems to be quite fond of this one lately. I feel guilty for doing things I haven’t actually done. This is a long-standing problem which is a discussion reserved for another time. Regardless, for me guilt has many facets. I know Adelle’s condition is not my fault, and not my wife’s fault, so I’m not going to feel guilty for her condition. What I feel guilty about is the fact that I’ve neglected my wife in her time of need, my daughter in the short time that she has here, and my feelings about this entire situation.

Sadness
I wish I felt this one more, but it takes effort. I don’t bond well with my children until they’re born, so I’m sure my sadness will increase uncontrollably after Adelle’s birth. In the meantime, I have to put forth the effort to really think about what I’m not going to have in Adelle. I’m not going to see her first smile, her first steps, her first words. My sons follow me around as I work on the house, yard, and so forth, trying to be just like me, doing the things I do. Charlie even has a toy power drill that looks just like my drill, and when the two of us embrace our power tools, he replaces my shadow as my most loyal follower. But I won’t get to watch Adelle follow her mommy around adorably as she tries to be just like mommy. I won’t get to watch her enter her teenage years and be there for her during that time as her protective daddy who greets every boy at my door with a firm handshake and a shotgun. I won’t teach her to drive. I won’t see her graduate high school. And I won’t be the first to walk her down the aisle. Perhaps these things are a good lead in for my feelings of selfishness.

Selfishness
God is sovereign. He is perfect, and He is good. His love is perfect and eternal. His grace is undeserved. In knowing these things I also know that it is completely His right to determine how long lives are lived. And let’s face it, every human life is short when viewed from eternity. Eighty minutes and eighty years really don’t seem so different from each other compared to how different each is from eternity. But alas, I am selfish. My Lord wants Adelle in heaven far too soon for my liking. Her beauty and her created completeness must be something extra special if God needs her in heaven so soon. I know I should be grateful that He is blessing me with any time at all with Adelle, and I am grateful for it, but I feel I should be more grateful and stop wanting her all to myself. Hey, look at that, we’re back to guilt again. But let’s talk about anger and frustration.

Anger and Frustration
This pregnancy is taking a major toll on my wife. I’m a fixer. I like to fix things, and when I can’t, it frustrates me and even angers me at times. I want to fix this pregnancy, but I can’t. Fine, if I can’t fix the pregnancy, I want to fix my wife who is broken from this pregnancy. She is sad, angry, frustrated. She feels guilty, although not for all the same reasons I do. And what I want is for her to be happy. But just as I can’t fix the pregnancy, I can’t fix her either. I know it’s not my job to fix her, it’s God’s. But here comes selfishness again, making me discontent with waiting on Him to fix her in His timing. I would much rather fix her myself in my timing (like I would have any clue how to do that anyway).

Here’s the bottom line. I want a daughter who I can watch grow up. I want her for longer than a few hours or a few days. I want her for as long as I can get her, and I definitely don’t want to outlive her. I love my boys, don’t get me wrong. But I can also say that, as a teacher, I usually bond with female students better. I definitely have, and have had, some great male students, and the student that I’ve been the closest to is a male. But for whatever reason, I’ve bonded well with more female students than male students. Maybe it comes from my desire to protect. I love being responsible for the well being of the girls I’m in charge of teaching, and I love being sensitive to their needs. When these things happen, I don’t feel the bitterness of insensitivity. And when we serve others by being responsible for their well being and sensitive to their needs, we are conscious of the fact that although human lives are short when viewed from eternity, they are not insignificant or unimportant. As I said, I want a daughter that I won’t outlive and that I can love being responsible for the well being of and whose needs I can love being sensitive to. But I am thankful for Adelle. I will love her for as long as God let’s me have her.

-Jason

Hope and Healing

Hope is a tricky thing. I have always known that I am a pessimist (although I would rather call myself a "realist," as most negative people say!). And for some reason, I have always struggled with hope. It carries so much risk for me. Hope means there stands a very real chance that I will fall on my face with disappointment.

Luckily, I know that there is One Hope, that does not disappoint. And I chose to put my trust in Him. But honestly, I still struggle with the little aspects of hope. The daily choices and decisions. Do I hope my husband gets a job? Do I hope I get to buy the house I want? Do you hope your child gets well quickly when they are sick? Do I hope I get hours with Adelle instead of minutes, or that her delivery will go quickly, or that God will orchestrate the events so that her grandparents will get to hold her while she is still alive? What do I risk hoping in, and risk being disappointed with? Isn't it better to just be realistic and put off hoping at all? I guess it is often times easier to hope on a larger scale, than it is to hope for small things.

On that note, I have been receiving some feedback lately from various people about why Jason and I haven't been praying (or hoping) for Adelle to be healed. Let me warn you first of all, that I am no theologian. (Sorry Dad) These thoughts are just what Jason and I are experiencing...and I am not always sure of their Biblical soundness.

Jason and I consider ourselves (somewhat) well read and educated on the disorder we are dealing with. In fact, you could say it falls smack into my area of specific training and "expertise." (using that word VERY lightly, of course, as I am NO expert at all) And I know that anencaphalic babies will not survive. Education and science teach us that humans cannot live without brain tissue to manage all the body systems. Since the very beginning, I have not questioned this at all. Adelle will die, the question is merely how much brain tissue she will develop, and whether the amount she has will keep her alive for minutes, hours, or days.

That being said, I do NOT question God's ability to heal her. Trust me, if he can part the seas, raise people from the dead, and forgive my sins, healing my daughter would be a piece of cake for Him. So the question is, how do you combine your trust that God is all powerful and capable to heal, with your belief that it won't happen? Why would He not do it, if it was just that easy?

Here is the part where I may be on shaky theological ground. But, it is what is in my heart right now, and I want to try to explain it, if I can.

I believe God wants us to live in the world. What do I mean? I think He asks us to live in this world that we (cause you know as well as I do that you would have eaten the fruit too) created. And unfortunately this world involves pain, disease, discomfort, disappointment, and sin. It cannot be avoided or erased. And God doesn't chose to rescue us from all of it's consequences. And Adelle's disorder, is a consequence of this world. Spontaneous genetic mutations happen. God will someday create a new world for us, but for now, He asks us to live within the constraints of our current environment. And quite frankly, it often sucks.

And I know I might be treading on thin ground as it is, but I am even going to go so far as to say... that I think God is more interested in our reactions to the events in our life, than with the actual events themselves. That is not to say the circumstances we face in our life are not important. They are. And God can (and does) intervene to change those circumstances at times. But, I think He desires more for us to react to our life and the things that happen to us in a way that promotes our growth, promotes Truth, and glorifies Him. And perhaps (although who can ponder the mind of God?) that is why He chooses to leave us in our unpleasant circumstances, and instead teach us to react with trust, grace, and reliance on Him. Let's just say that the longer I work on my salvation with "fear and trembling" the more God seems to change in me the desire to be "rescued" from life's unpleasant circumstances, and instead teaches me to focus on how I need to be dealing with them. Prayer requests become more about my heart and attitude, and less about changing the circumstances. My concentration seems that it ought to be how to change my heart, and not how to change my world. Perhaps a changed person is a bigger miracle than a changed circumstance?

So, although I think God is capable, with a mere wisp of his hand to create brain tissue from nothing, and completely heal Adelle, I do not think He will. (hoping lightening isn't going to strike soon.) I think He is asking Jason and I to live within this world and trust Him even while we are hurting and grieving. I think He is asking us turn our broken hearts towards Him, rest in Him, and understand that He loves us and has a plan for us, despite the fact that life is not going as we would choose, and that our daughter will not have the life we hoped for her.

Do I ever hope that He will heal her? I guess at times, you could say I wonder... I wonder what His plan is. I wonder what I am supposed to learn from this. I wonder what in my heart needed to be changed so badly that it took something this hard to shed light on it. I wonder why He chose me to carry her for such a short time, on such a long road. But my hope is not dependent on her miraculous recovery. My hope remains embedded in a Person. The one Person I know loves my daughter more than I do, despite what emotions and events are happening.

And lastly, let me say this. Adelle will be healed. God will make her whole. He will end her suffering, and make her life longer than we ever thought possible. I just have to wait until Heaven to see it.

Where is this coming from?

I am no longer handling things well. I am not sure when the change occurred...probably around 30-32 weeks. When I realized I was not going to be pregnant forever.

I am not overly teary, or crying all the time. I am mad, frustrated, impatient, moody, and unable to handle normal life without yelling. I am not angry at God, or even at the idea that my daughter is going to die. Everything else is what I get mad about! I know, it doesn't make much sense, and I don't claim to understand it...or even excuse it.

But my kids, husband, job, most everything else...seems to be on a very short lease. Everything makes me explode. Then after the explosion, I dissolve into tears at what a horrible person I have become. It seems a weird way to handle things, and I am not sure why instinctively I have landed here. I am trying to pick myself up and get to a different place. And I am finding it difficult.

When people ask how I am doing, I don't know how to answer. I just say "it is getting harder." But is it just me that is no longer handling it well, or is it really getting harder the closer we come to seeing her...and losing her. I can't tell you.

I guess all I can say right now is...I am sorry. If I have bitten your head off, been short, or just look generally annoyed, I am sorry. I don't know where all this is coming from. I feel very empty, unable to summon up energy for everyday life, and yet, out of the blue, anger rises quickly, bringing more energy and life with it than I could conjure up to do the laundry.

I am hoping this is a stage, and I will move on to the next stage quickly! Right now I feel I am being eaten alive by this demon inside me.

The Weight of a Baby

I have been spending a lot of time in the Newborn Nursery at work lately. When it is slow, I go over and feed and hold babies.

My husband doesn't think this is a good idea. I am sure he is right. But...I am drawn there. To hold the new little babies brings reality to me. To feel the weight of their little perfect bodies in my arms brings clarity.

I am drawn. Every time I walk into work I want to just walk past the nursery and stare. I want to hold them, calm their crying, smell their heads, and rhythmically rock them back to sleep. I am not sure why, exactly, but it feels...right.

On one hand, it brings with it a sadness. A true realization that I won't be rocking my darling girl to sleep, or smelling or head, or calming her fears. But honestly, it doesn't really land there very long. It doesn't make me cry or feel depressed. Those thoughts, that reality, is present, but not dominant.

In fact, it feels more...healing. It helps me to connect with her. It reminds me to talk to her. It makes me think of what it will be like to hold her precious, soft body. It forces me to think past her "fate" and to the fact that she is a baby. My baby. It makes the slightest hint of hope and anticipation grow. I will get to hold her, to rock her, to sing to her, to talk to her. I will get to see her. It may not be for long, but I won't miss it.

I have felt more comfortable talking to her after these encounters. Each time I am rocking a baby, I find myself talking to them. Telling them it will be all right, telling them to relax, sleep, that I am here. And for some reason, it makes it easier to say those things to her now. To picture her beyond "a pregnancy" and to...an infant. To imagine her tiny hands and feet. To wonder how she will physically feel in my arms.

Like I said, I am not sure why I want to, but more than anything in the world, I want to hold babies. A new baby, one completely dependent on me. One small and precious. And at work, when I get that chance, I go...every time. It is almost like I need it. My soul needs it.

And with each encounter I feel warm. Whole. Filled.

Sesame Chicken Stir-Fry

Ok, I don' t post recipes often. I am not a fabulous cook by anymeans. I am a "follow the recipe" girl. Jason mixes things together from scratch and creates these meals that are divine, but can never be duplicated, because he has no idea what he actually put in it. But me, I make casseroles, recipes, anything written down. But lately, for whatever reason, I have fallen off the cooking wagon. I have had little motivation to cook, and unfortunetly have left the brunt of the work in my husbands capable, but tired hands. Well, in an attempt to rally my motivation, I spent an evening (one night at work around 2 am) searching and sharing recipes with my coworkers. I needed something new, something more exciting.

And I happened across this stir-fry recipe. I was very hesitant to try a chinese food recipe, since my experience with them is not good. The pre-made sauces are horrible, and any other recipe for sauces are so laden with garlic and ginger I can't taste anything else. But, this recipie looked different, so I figured I would give it a try.

It was fabulous! It is one we will definitely add to our "regulars." It was fast, cheap, and it will be easy to keep the ingredients on hand. Hope you enjoy it as much as we did! (PS. Our kids even ate it!!!)


Sesame Chicken Stir-Fry

2 tsp. oil
1 lb. strips of chicken breast (uncooked)
3 cups frozen stir-fry veggies (we used 1 16 oz. bag)
1/4 cup KRAFT light Asain Sesame Dressing
2 Tbsp. soy sauce
1 Tbsp. honey
1/4 cup Peanuts (we used cashews)
4 cups white rice

Heat oil in large skillet on medium-high heat. Add chicken; cook and stir 7 min. or unitl no longer pink. Add vegetables, dressing, soy sauce and honey; mix well. Cook an additional 2 min. or until heated through. Sprinkle with nuts. Serve over rice.

I am going to make twice the sauce next time, cause it was so yummy. And I used a bit more honey than it called for. ;0)

Hope you like it! And Yay for small battles won...one meal cooked, one day feeling somewhat normal again...

Updated Prayer Requests

As we draw nearer to the due date, some of our prayers have changed slightly, or become more important. We are trying fervently to stay focused on God's faithfulness and provision, but it seems (at least for me) to be getting harder the closer we get. Thank you so much for those of you that lift us up in prayer. It is more than we could ask, and everything we need. And please remember, this is by no means the only things you can pray for us. They are just the things on our hearts now, so please continue to pray as God leads you.

-Please pray I go into labor on my own. It is common (apparently) for those carrying infants with anencephaly to not go into labor. But, because of my previous c-section history, there are very few medications I can take to induce labor. If they cannot get me to go into labor, I will have to have a c-section. And the fear (of mine) with having a c-section is that while I am finishing surgery, I might be missing the only minutes I have with Adelle.

-I am having trouble sleeping again. Pray that I am able to sleep in larger chunks of time, nap, or just sleep through the night. It is hard on Jason and the boys when I am overly tired.

-Our A/C unit broke last month. And we drained our burial/maternity leave savings to pay for it. My maternity leave is unpaid. I know God will provide, but pray for our stress level as we are trying to figure out where the money will come from. I am required to take 4 weeks for physical recovery, but really have no idea how I will feel emotionally/mentally to return to work. I am worried I will have to go back when I am not ready because of money. Or I am worried things will have to be put on credit and that we will build up debt. God has already provided some unexpected and wonderful things, so I should be more trusting that He is going to provide. But, I am weak. I know that earning extra money falls on my plate, and I am stressed out trying desperately to work more shifts. Couple that with the not sleeping well, and I am feeling very tired and burdened by it all.

-And of course, please pray we have as much time with Adelle as possible. It could be 20 minutes or 2 weeks. We are praying we have hours or days to study her, love her, experience her. Again, my mind knows that her hours are already written, but I am begging God to let us have her for more than an hour. I want to be able to be settled, cleaned, and removed from the birth and get to sit and hold her. If we have 20 minutes, I will barely be cleaned up after delivery. I want more than anything to be cleaned, done with delivery, and be able to sit in a rocking chair and hold her. Pray that I can trust God to do what is best for her and us, and that I rest in Him.

A chubbier Adelle

Once again we had the wonderful privilege of peeking into Adelle's secret world for an entire hour this week. Not only did we come away with some precious new pictures, we got to watch in wonder at how whole, and healthy she really is right now. She is getting chubbier (did we have doubts, now that Nestle Tollhouse cookies are back on the shelf?), and she is still so very active. She constantly has her hands in front of her face, and is snuggled so low and close to mom's pelvis that you literally can't tell where she ends and mom begins. It makes me smile, like maybe she is trying hard to be close to me, as I am trying hard to hold as tightly to her as possible. At the very end, she cooperated and let us have a little peak at her face. Her lips are so precious and sweet. Enjoy.