Thursday, April 30, 2009

A Bittersweet Milestone as Becca Turns One

In just a few days (May 2) Becca will celebrate her first birthday. Her mom and I are obviously very excited. We look forward to having friends and family gather on Saturday—and to watching Becca eat her first piece of birthday cake. ☺

But as much as we celebrate Becca, we would be less than honest if we didn't admit that our hearts are a bit divided as we approach her birthday. For we are painfully aware that this is not only Becca's birthday, it is also her sister Hope's birthday, and Hope is not here to celebrate the day with us. We miss Hope a great deal and we so wish that both our daughters could be celebrating this milestone together. There is and always will be an empty place in all of our hearts and all of our lives because Hope is not here. We do our best to reconcile such conflicting emotions as we celebrate Becca and simultaneously continue to mourn for Hope. (Two days after we celebrate Becca's birthday, we will be visiting the cemetery to mark the first anniversary of Hope's death—and the first anniversary of her funeral falls on Mother's Day this year—UGH!)

The inescapable truth is that this is the first of many milestones that Becca will celebrate that will inevitably be bittersweet for her parents. Hope was a part of our story and we can't deny her existence just because others are uncomfortable with us talking about her. We want Becca to know that Hope was real. She had a twin sister whom we loved every bit as much as we love her. We want Becca to feel that it's okay to ask questions about Hope, if she ever wants to know about her sister.

Having said that, we do want this birthday (and all future life milestones) to be a celebration of Becca's life. Though we cannot and will not ignore Hope's existence, we also hope and pray that her shadow will not in any way diminish Becca's ability to live life to full and celebrate your life as the years go by. We are so ecstatic to have our beautiful Rebecca May with us—she is not a consolation prize. All that we went through was worth it if at the end was Becca...

It's hard to put into words just how much I love my little girl. Mom has commented that she is "daddy's little girl." And for whatever reason, it seems to be true. I look forward to her smiling face when I come home from work, and to our evening routine together: doing our Rebecca dance together, giving her a bottle, and singing songs as I rock her to sleep. We do seem to have developed a special father–daughter bond and I hope that our bond grows stronger over the years. I'm sure the relationship will evolve as she grows, but I hope she'll always have a special place in her heart for her dear old dad—even when she is a teenager and she might not want to admit it. ☺

Sometimes it can be a little disarming to love someone as much as I love my darling daughter. My instinct is to want to take her in my arms and shelter her from all possible harm, but I know that I cannot, and promise to do my best not to. I would mean well by my actions, but it would actually be a mistake to try and "protect" her. I've come to understand that we actually learn a great deal by being allowed to experience all of life—the good, the bad, and the ugly. From an early age, I have to begin to "let her go" and set her free to become the person that God has created her to be—which may or may not be the person I think she should be. My greatest joy will be watching my daughter grow into a strong confident woman. I pray that God will guide her steps and I promise to be there to love and support her along her journey. I pray that I as her father can help to "give her roots to help her find her wings."



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Wednesday, April 22, 2009

Safe in God's Arms

There is a song by Plumb called "In My Arms," whose chorus appears below.

Knowing clouds will rage
And storms will race in
But you will be safe in my arms
Rains will pour down
Waves will crash all around
But you will be safe in my arms

Every night I sing that song to my daughter Rebecca as she drinks her bottle and falls asleep in her father's arms. I want to assure my little girl that she is indeed "safe in my arms"... and ultimately I think I want to reassure myself that she and I are both safe in God the Father's "arms".

I've been thinking lots lately as I sit there in the darkness of my daughter's room about what it really means to be "safe in God's arms." As I sit there in that dark room I cannot help but remember that there were supposed to be two little girls occupying this space. There remains an empty space where a second crib was supposed to be for her twin sister Hope. Noah's Ark decorations still adorn the walls, a reminder of what was supposed to be. (I even recall that we played this song at Hope's funeral about a year ago and I spoke some words that day.)

Clearly whatever it means to be "safe in God's arms", it doesn't mean that if you trust God, nothing bad will ever happen to you. I've always known that truth in theory… but in recent days I have experienced it as painful reality. The rubber hits the road in living out my faith in these moments. The Psalmist says, "It is you alone Lord that causes us to dwell in safety." Notice that God doesn't promise to shelter us from ever experiencing pain and sorrow in this life, but he does promise to keep us safe in the midst of our hardship.

I realize that for me, far too often growing up, being safe was synonymous with being sheltered. My parents (and I believe my mom drove this dynamic to a large extent) certainly tried to keep me safe, but they did it by sheltering me and not letting me experience life with all of its risk, pain, uncertainty, etc. My mother meant well; she wanted to protect her beloved son from ever getting hurt—what parent doesn't have that same desire for their children? We don't ever want to see our kids hurting…

So my mom tried very hard to shield me from the unpleasantness of life. And to some extent, it worked. I did avoid some things that I am just as happy not to have experienced—i.e., I don't feel it a great loss to never have known what it is to be drunk or high.

But because I was sheltered, I also missed out on lots in life that is good and fun. On the whole, I don't think my parents particularly encouraged me to desire or dream about a more abundant life. Pursuing desires and dreams would have required risk taking on my part and the possibility that I would fail… and get hurt… so we tended to avoid those awkward and uncomfortable situations altogether.

Over time, I think, without even being consciously aware I was doing it, I started to succumb to a rather limited view of myself (and my world) that, in the words of C.S. Lewis is ...like an ignorant child who wants to go on making mud pies in a slum because he cannot imagine what is meant by the offer of a holiday at the sea. [I was] far too easily pleased. That is to say, I actually convinced myself that I was okay with merely existing. I stopped imagining anything more was possible for me. Even if more abundant life was "out there" waiting for me I wasn't particularly motivated to seek it out. I was sort of lulled into believing that when it comes to life, what you see is what you get. No use wasting time dreaming for more; it's not like I can achieve it anyway.

But of course, it's a vicious cycle. Because I was constantly sheltered from having to experience anything unpleasant in life I never developed the confidence and courage I needed to seek out that abundant life for myself. To put it another way, I never experienced the good that comes from having to learn to deal with the bad and ugly in my life.

The fact is that there are some "lessons" that only the bad and the ugly of life can teach us. As I've lived through the loss of my daughter and subsequent events this past year, I am learning lessons that only this unique "curriculum" could teach me. They aren't lessons I would've chosen, because they are painful and difficult, but nevertheless they are lessons I need to learn. I'm not even sure I can clearly articulate exactly what exactly the lessons are just yet, but I hope that in time, I will gain more clarity.

But I honestly have to wonder if my experience the past year has been even more difficult precisely because I was so sheltered growing up. For so long, I was protected from ever having to experience anything unpleasant in life. As a result, when I do experience hardship and pain in my life it seems particularly harsh and unfair to me, and I often don't know how to effectively give expression to what I feel.

As I was growing up, I'm not sure I ever really developed confidence in my ability to get through bad and ugly life circumstances, so when they come my way as an adult they inevitably throw me for a loop. Oh I keep my composure outwardly (Jack Ward's son is well-schooled at that!) but I retreat inward with my thoughts and feelings. I have a tendency to want to avoid dealing with or talking about the unpleasantness because I am so unfamiliar (and uncomfortable) with having to process these kinds of feelings. I "push it down" and move on hoping it will go away. I crack jokes to hide what I really feel inside. I smile outwardly but my tired expression belies how I really feel.

I constantly struggle with a haunting, nagging fear that I, "don't have what it takes," to get through the critical moments of life. In short, deep within, I feel handicapped when it comes to living life to the full. Even though God has never let me down even once (not even when Hope died) I still struggle to trust myself in every new situation I encounter. The message of my childhood wounds plays repeatedly in my mind and is hard to overcome—I struggle with the fundamental feeling I am forever flawed as a human being and thus it's foolish for me to hope for more than mere survival. I know it is a lie of the Enemy, but it can seem so true to me at times.

So I definitely want my daughter (and my son) to always feel "safe in my arms," but I don't want to repeat my mother's mistake and shelter them excessively. And finding this balance is hard, especially when you've already lost a child... and Brady has also had some health concerns. There is a tendency to want to "hold them close" and shelter them from all possible harm. I would have every good intention but I know deep down that this would be a mistake... and I really couldn't "protect" them from the unpleasantness of life even if I tried. Life happens... and sooner or later they must learn that lesson the same way I have.

I want my children to have a healthier sense of what it means to be safe than I did. I want them to be free to experience life to the full—which includes the good, the bad, and the ugly—so they have opportunities to develop confidence in themselves and in their ability to handle whatever life brings their way. I want them to know that mom and dad love them and that it's precisely because we love them that we will not shelter them. We will do our level best to be with them on their journey and keep them safe, but inevitably, in this life they will experience pain, suffering, and hardship. While we won't be able to (and probably shouldn't try to) shelter them from it, we will always be there to "hold" them when they need us, cheer them on, and pick them back up when they fall... and when they ache, we will ache.

I hope they come to know that God ultimately feels the same way about all of creation that we who are parents feel about our children. We are probably never closer to experiencing how God loves his beloved children than when we are when we experience the love that we have for our children—whether those "children" share our genes or not. God loves us enough to let us live life to the full. So God does not shelter us from experiencing pain and hardship in this life, but God promises to be with us in the midst of our struggles and promises that we are indeed "safe in God's arms". I hope that as we come to understand the reality of that promise, as it sinks in deeper and deeper to the fabric of who we are, that we are truly transformed and set free once and for all to live life to the full and become the people God created us to be. As Dallas Willard says it, for those who truly know and experience this reality, "The world is a perfectly safe place to be."



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My Own Great Sadness

[WARNING: The following paragraphs contain slight plot spoilers for William Young's novel, The Shack. If you have not yet read the book, and don't want any plot details revealed, read on at your own risk...]

The Great Sadness is the term the author of The Shack uses to describe the feelings that the main character (Mack) experiences following the abduction and murder of his daughter (Missy). The author himself probably had experienced some kind of intense sadness or grief in his own life that tested his own faith, and was sharing how it made him feel. How else could he have written such an effective work of fiction that challenges us to think about how God relates to the suffering and evil that seems an inescapable part of our life here on Earth?

I relate to these kinds of feelings as well; I suspect most of us can. We've all experienced grief and sorrow in our lives—or if you haven't, you will… Maybe this is what makes The Shack such a popular book that, though undeniably written from a Christian perspective, seems to have universal appeal? It seems to touch on issues that at the very core of human existence—i.e., What do I do with the evil and suffering that are so prevalent in the world… and are often part of my own personal story?

I definitely feel my own version of the Great Sadness—I suspect that though they may have similar elements everyone's Great Sadness is unique. Almost a year ago now, I lost my daughter Hope two days after she was born. They told me everything was fine; I believed them. Unfortunately, they were wrong. I was blindsided… totally unprepared for what happened that day at Franklin Square Hospital. That day, a wave of sadness swept over me like a flood and I was sent spinning like an autumn leaf before the gale of a Noreaster. I've been struggling to find my bearings ever since. A year later, I begin to find some grounding again and healing has begun, but my new tether is not secure yet…

I think I was so numb at first that I didn't realize just how much what happened disrupted my life. It's almost a year later, and the initial shockwave of grief has passed, and my wife and I begin to settle into a new "normal" mode of living. That new normal includes the fact that one of our daughters only lived for two days. After almost a year of doing not much more than surviving each day, Laurie and I can actually start living again. And as we do we stop and ask: "What the heck just happened?" In other words, after what I have just lived through, how goes it with my soul? And the irony is that now that I finally can ask the question… I find it hard to give an answer.

I've certainly done a lot of thinking and praying about what has taken place. I struggle so hard to make sense of something that is totally senseless. Many times I process what I am thinking best through the written word. Out of my pondering this came two descriptions of how The Great Sadness has felt to me…

A wet blanket or wet clothes. Think about how you feel when you go outside in the wintertime to work or play in the snow? At first you feel comfortable and warm but eventually the heavy clothes you wear to stay warm get wet as the snow and cold penetrate the layers. Now you aren't warm anymore, you are wet and cold and the clothes hang on your body and weigh you down—in short, you feel pretty miserable. You pretty soon want to go inside and get out of the wet clothes and snuggle up by the fire with a cup of hot cocoa. The grief and sadness I have felt in recent months can be a little bit like that. The major difference is that there has been no obvious "warm fire" or "hot cocoa" for me to retreat to—or perhaps they are just harder to "find". I often just feel alone in the cold with the heaviness hanging over my body refusing to let go. I struggle to give it expression… but it is my constant companion, always lurking not far away from the surface of my thoughts.

Oppressive humidity. Think about one of those days we sometimes have around here (in the mid-Atlantic) in the summertime when you almost feel like you can cut the air with a knife. They always say that it's not the heat so much as it is the humidity that gets to you—usually they are right. On those hazy, hot, humid, stagnant days the slightest exertion begins to take its toll on you; it takes nothing to break out in a sweat. The Great Sadness kind of feels like oppressive humidity; it sort of hangs over your life and slows you down. Though you still manage to function and do the things you have to do, it just seems to take more energy than it did in the past. I often feel like my energy for life is completely sapped; I feel tired all the time, and I wonder if I am "okay." But honestly, I think it's the impact of the grief and sadness that has enveloped my life in recent months—this improves with time, but restoration of Spirit comes slowly especially when you have two children under the age of four who make it difficult to get that much time alone (or with my wife) to contemplate what has happened to me (us).

It's sometimes hard for me to give expression to what I feel about all that has happened, but I know that am still "sad" in my Spirit. This really came into my mind as I was praying at the altar on Good Friday this year. The closing scene of The Passion of Christ was playing on the screen, and Jesus was saying "My God! My God! Why have you forsaken me?" I have so related to that phrase this year. At the altar, I just kept thinking and praying: "God I am so sad… I am so sad. I don't want to be sad anymore." (And I begin to realize that the sadness of Spirit I feel is not just about losing my daughter, though that has been the event that brought it to the forefront of my thoughts at this moment in time.)

I can so relate to the kinds of questions that Mack asked in The Shack: How could a loving God allow all this pain and suffering into our life? In my specific case, I often find myself thinking: "My wife and I give so much of ourselves to serve God's Church, how could God do this to us?!" Kind of presumptuous of me I suppose, but I still go there. I act as if God has capriciously singled us out for hardship. In my head, I know this isn't the case… but my heart hurts, and is not as easily convinced. Healing comes… but once again, the journey to restoration and wholeness is painful and long.

Like Mack, all I have lived through has shaken my faith in God to its very core—I hope that's okay for a pastor's spouse to admit ☺. It has been a difficult road to walk to say the least, and I have been worn down by the journey. I don't understand the way things have unfolded in recent years, and it causes me to question God… even doubt his nature at times.

But at the end of the day there is one thing I don't question. Deep down at the core of my being, despite the fact that I don't understand many things right now, I still know I believe. I continue to lift up God in praise every Sunday and help lead our congregation in worship. I am thankful to God for giving me the strength to move forward day-by-day. I am thankful to my family (and church family) for their continued love and support during difficult days. I am certainly hoping that "better" days lie ahead for my family, but in the meantime, I want to learn the Apostle Paul's secret—he seemed to have learned how to trust God no matter what his life circumstances were.

Hope's death was, is, and will always be tragic, but I hope and pray that God can somehow bring good out of tragedy. I begin to see glimpses of how that might happen in our lives. It's probably too early to say much definitive but I do believe things are beginning to happen for both Laurie and me. For example, I think that as a result of living through the great tragedy and sadness of losing my daughter, God is gently leading me to accept and admit the significance of the true Great Sadness of my own life to date—the impact that growing up with a mentally ill mom from a very young age has had on the entire trajectory of my life. I pray that in time, I will be able to learn more of the "lessons" that the hardship and suffering in my life is trying to teach.



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Saturday, April 4, 2009

Reflections on Brady's Diagnosis

While we're certainly relieved and happy that there is no malignancy present in Brady's brain (we were pretty sure there wasn't) we so hoped they would tell us it was "nothing"... and we could be done with it.  But life circumstances  are often not so "neat and tidy" are they?  There's an awful lot of ambiguity in all of human existence.  Much as we wish things could be "black" and "white," more often than not we end up with varying shades of "grey" that we have to try and make sense of. I probaly always "understood" that was true, but the past 11 months, I've "lived" it.  I don't necessarily like it; I may never really like it, but somehow I do have to learn to "make peace" with it, because it's not likely to change and it can drive you crazy if you expect to "get control" of it. (And who among us doesn't want to be "in control" of their life?)

At the end of the day, we obviously still have a great deal of concerns.  Since there is such ambiguity over exactly what caused the cysts in Brady's brain in the first place, it's hard to tell if there is danger of more damage happening. Frankly, when a well-respected pediatric neurologist at Hopkins says, "You know... I'm just not sure what to tell you..." that gives you pause.  I mean, at least they are honest, but you turn to the so-called expert to tell you what's wrong... and in this case she is trying to figure it out along with us.  Just goes to show, once again, that doctors don't know everything.  Sometimes there "guessing" just like the rest of us...

I guess our best prayer at this point is that this is in fact "old" damage and that it was a one-time thing, and of course that the damage done in the past isn't causing some of the developmental issues Brady has had to date. 

In short: We just want our boy to be "okay" but for now, we're going to have to "wait" and see how things progress.


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More on Brady's Diagnosis

Below is an expanded explanation of Brady's MRI diagnosis that Laurie sent out in an e-mail yesterday for those who would like to see....

As most of you know, Brady had an MRI this week to investigate further a cyst that had appeared on his brain on a CT Scan recently.  This afternoon we got the results and it is a mixed picture.  The good news is that there are no tumors or malignancies.  The less good news is that Brady appears to have a number of cysts on his brain in addition to the one they originally saw.  They appear primarily on his parietal lobe and in the periventricular region.  Neither his pediatrician or his pediatric neurologist at Hopkins is certain about the origin of the cysts.  They are fairly sure that they are 'old' in nature, meaning they occurred at some point in the past vs. recently.  They likely occurred in response to some sort of brain injury or infection.  The neurologist feels that they may have formed in utero but she is not sure.  There are some issues he is dealing with (speech delay, seizures, minor gross motor issues and various other things) that may or may not be related to these cysts.  

Because they are not sure of the origin or reason for the cysts, at this point they cannot say what the long-term implications might be or whether he is at risk for more to develop.  Both the pediatrician and the neurologist are currently doing research and talking with other experts in the field.  The neurologist will be presenting Brady's case at a Neuroradiology Clinic at Hopkins in two weeks.  We also may be asked to see a Developmental Pediatrician at Kennedy Krieger. 

For now, we wait.  The pediatrician will be calling back on Monday to let us know where we go from here.  Please continue to lift our family in prayer.  On this the eve of the 11 month anniversary of Hope's death, we rely strongly on your prayers and the strength that only God can give.






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Friday, April 3, 2009

Brady's MRI Results


After a much longer wait than we hoped for, we got the results from Brady's MRI...  The delay, as we thought, was because the pediatrician and neurologist needed to talk to one another before they contacted us.  So, it's not a simple diagnosis...  (At this point I come to expect this.)

The good news is he does not have any "mass" which means no malignancy -- i.e., nothing that is growing or spreading.  But... (yes, unfortnately there's a but...) he does have, not one, but several "cysts"  on his brain.  (So in that sense, it's good that we happened to discover this during a cat scan in January and, despite the difficulties getting it done, went through with the MRI to examine it further.)

The neurologist's best guess, and that's what it is right now, is that these are "old" injuries to the brain -- i.e., might have happened at or before birth.  But frankly, they are a little uncertain about exactly what caused this, so can't say for sure it couldn't happen again. 

We simply don't know what if any impact this might have on Brady.  He's a little delayed with speech and a bit clumsy, but who knows if these two issue are related or not.  (I was pretty clumsy as a kid and still not all that graceful today.  He might just be like his dad...)  He has also had some seizures over the past couple years, but we think those are related to when he has a fever, especially given that I had similar seizures as a child. 

At the end of the day, we are relieved ... but still left with a fair amount of ambiguity over what might be going on with our son.  I'm learning that such is life... I don't have to like it, but I have to learn to "make peace" with it because it is not likely to change. 

Thanks to everyone that has been thinking and praying about us. Keep it up; we sure can use it. 




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Thursday, April 2, 2009

New Blog Site with Creative Writing

FYI for those that may be interested. I started a separate blog for me to post some of my "creative" writing (http://centurionstale.blogspot.com) . I picked the name since right now I am writing a third person omniscient acount of a certain Roman Soldier's experience of the events we now know as Holy Week, I can change the site name to something more generic later if needed. As time allows I hope to add some more... The first couple posts sort of set the stage for the events of Palm Sunday. My hope is to post some more throughout the week... We'll see how much time I get/make for this.

The link over on the right to "A Centurian's Tale of Holy Week" will take you to where you can view the story if you'd like to read it.

This TIme It Worked... Thank Goodness!

Just a quick update... Brady's MRI is now complete and we are back home awaiting results. Once they finally came out for us, they took him back quickly and got started.

Brady did great. (I really think he did better with general anesthesia than with the IV sedation, which makes me think we should have done this in the first place... Oh well...) This time, he was out in seconds, they put the IV and tube in after that, and did the scan. He did not wake up until just after the procedure, which was perfect. He is recovering from the effects of anesthesia now... and we will see how that goes this time. He was a "drunken sailor" last week for a little while.

Thanks for everyone who has been thinking and praying for us. I feel like the support helps us. Now we wait to hear back from the pediatrician later today with results. Probably, that won't be til the end of the day when she has a chance to look at the results herself.

Sitting At Hopkins Waiting for Brady's MRI

Hi Friends:

I'm sitting at the MRI lab at Hopkins waiting for Brady to get called back. We showed up at 10 AM just as they asked us to... we were even early. If you look at the time of this post you will see that we're still waiting at a little past 11!! Of course, this is typical for doctors... Our time means nothing to them, but let us be a few minutes late and they would probably cancel our appointment. Not much consideration for the fact that he was here last week... and both he and his parents are on edge.

The anestheseologist just came out to see us, so perhaps we are making progress. He's supposed to be "put under" and then they put the IV in, and by the time he wakes up, he is in recovery. We certainly pray it works out this way.

Please keep us in your thoughts and prayers the next couple hours. I hope we'll have a result later today... and prayerfully things will be okay.

Thanks,
ALAN