Hannah Update

Hannah has been home for a few days now. The doctors are amazed at the speed of her recovery. She is bouncing around, full of life and vigor. She is picking on her little brothers again (always a good sign) and rolling her eyes in disdain at pretty much anything I say (not a good sign but normal, I'm told, for a 13 year old). The scars are large and ugly and still a bit painful to the touch. She has taken to wearing hats when in public until the affected areas are covered with a new crop of hair. Despite instructions to "take it easy" for a week or so, she is running and jumping, or trying too. Her mom and I have done our best to clamp down on that. Last night she was playing in the house, ran around a corner in the hallway, and ran smack into a door, sending her spiraling to the floor. Vickie and I freaked. What if she had hit her head? Thank God the worst of it was a mildly bruised elbow.

You know, it's interesting, looking back on all of this. Hannah has had it pretty rough for her short life and had to endure more than most, though I know that there are others who have suffered and are suffering far greater. Despite all of her challenges, though, God has been there, not necessarily to remove the challenge, but very much present to help her (and us) through the challenge. Things could be so much worse. I guess the very fact that they are not is proof that God is good.

Today marks the eighth day that Hannah has been seizure free. Her doctors, fine men and women all, remind us that it may takes years to really be sure that Hannah is free from her epilepsy. Knowing this is true, we rejoice more with each passing day. She hasn't gone eighth straight days without a seizure in a very, very long time. Thank you God! Thanks, too, to Hannah's physicians: Dr. Valencia, Dr. Narayon, and to the army of nurses and techs who encouraged her, nurtured her, and ministered God's healing to her. I remember in particular a young tech named Andrew on whom, it seemed to Vickie and I, Hannah had a bit of a schoolgirl crush.

Hannah has a follow-up appointment with Dr. Narayon this coming Friday.

Thank you for reading and we will keep you posted.

Hannah Update

I just got a call from Vickie at the hospital.  Hannah is coming home!!

Hannah Update

Shabbat shalom!

That's the traditional greeting between Jewish people on the sabbath, today being Saturday and hence the sabbath.  It means roughly "rest and peace [to you]".

Hannah is spending her second sabbath in the hospital today.  The wound from her most recent surgery is healing well, thank God, but she is still flirting with a low-grade fever, hovering around 99-100.  Her prior fever of 103 lasted only one night.  Yesterday she was moved to a different room, one step closer to being released.  I'm not sure, however, if they will let her go with her fever.  We should find out today.  We hope bring her home soon.  Today marks her 11th day in the hospital. 

For those of you praying, thank you!  Please continue to do so!

I'll keep you posted.

Hannah Update

It's Thursday night. As I type this I am sitting in my daughter's hospital room watching her sleep. The past couple of days have been rough. The large eight inch scar curling it's way across the left side of her head is healing nicely, although it will ever stand as a reminder of her ordeal. The drainage tube that was in her head after the surgery on Tuesday was removed today, an event that brought not a few tears due to the discomfort. Morphine destroyed the pain but a new enemy has reared it's ugly, if not unexpected, head: Hannah came down with a fever this morning that has only gotten worse as the day has worn on. The risk of infection has always been present. Now we are increasingly concerned. The staff here at Saint Christopher's Hospital for Children are watching her closely. As with everything else, we wait and pray.

What can we do in life when we can't do anything? How do we handle it when what we need to handle is beyond our ability? This whole experience with Hannah's epilepsy and surgery and follow-up is so big, such a large impossibility, that her mother and I find ourselves overwhelmed by the sheer size of both the reality and the "what if's". We have no choice but to lean on Y'shua (Jesus) and remember that Hannah, as all of us, are in His hands of mercy and justice. We pray, we wait, we try to keep the rest of the family going, and we surrender, every day, sometimes every hour of every day, to the Lord. He is bigger than our biggest challenge and stronger than our impossibilities. I know most of you know this but I, for one, am grateful for the reminder.

I'll keep you posted.

Hannah Update

It's Tuesday again. A week ago Hannah finished her first surgery, miraculously coming through with flying colors. This morning she is scheduled for her second surgery. She will have part of her left temporal lobe in her brain removed, the part, we hope, that is responsible for her seizures. If everything goes well, she will be seizure-free for the rest of her life.

I spent last night with her at the hospital. Mom and I have been taking turns, essentially each rotating through every other night, sleeping in those notoriously uncomfortable hospital chairs and subsisting on hospital food, trying to be there for her while balancing time with the boys at home. This is a dance we have done before. I recall the time Hannah was hospitalized for three months in 2004 also because of her epilepsy.

As I write this from that plastic-covered chair Hannah sleeps, any apprehension she might have about this second procedure hidden in the bliss of unconsciousness. IV tubes and heart-monitoring wires snake their way away from her body to machines on the wall reducing her life-signs to bouncing colored lines and persistent electric blips. Her head is still wrapped lightly in gauze to cover the wires from the internal monitoring strips coming out of her brain. These will be removed today in the course of the surgery.

It's interesting to me how self-absorbed health issues can make us. During the past week that Hannah has been here I have focused heavily on her and our family. I have done no synagogue work whatsoever. Thank God for our assistant rabbi who has kept the congregation running during my physical and emotional absence. He's a good man. Meanwhile my immediate family has contracted, if you will. We have moved closer to each other to offer support during this time of need. Even Hannah's little brothers, usually a source of constant irritation to her, have offered their stuffed animals to their big sister. Their sudden kindness and concern for Hannah was a bit unexpected but certainly welcome.

Our larger family, the local Body of Messiah, has also moved toward us with support, meals, and prayers. We are daily humbled by the kindness, shown in so many practical ways, from dear brothers and sisters in the faith. I wish I could somehow repay each person for their generosity but I know that will be impossible.

Most of all God Himself has been good to us during this time. He has so obviously been with us during Hannah's previous procedure, during the ensuing week-long hospital stay, and I know He is present even as I type this, preparing us for today's rigors. I am also reminded that He loves my daughter more than I. He doesn't guarantee that everything will turn out as we hope, but He does promise to be with us through it all.

I'll update you later today after her surgery.

Hannah Update

Shalom everyone.

Hannah went into surgery on Tuesday, June 14th.  We showed up at the hospital at 6:00 am and went through the typical preparations:  registration, last-minute tests, and endless questions about allergies and medications.  Hannah changed into those famous hospital gowns, the kind that are always a bit drafty in back, and was given some Versed to calm her down.  Two hours later she was wheeled into the operating room.  Vickie and I said goodbye and, after a healthy dose of laughing gas (and the ensuing burst of giggling that erupted from my daughter), the procedure began.  The operating room team called us every hour with updates.  "Things are going fine."  "She is doing great."  "She is stable."  Easy for them to say.  It's not their daughter.

After six troubling hours Hannah was wheeled into recovery, then moved to CT for a scan, then sent to ICU which has become her home away from home for the next couple of weeks.  She has multiple small metal probes wrapped around parts of her brain.  These probes should delicately detect the slightest seizure which, in turn, should reveal which parts of her brain to remove during her next surgery, said surgery being about a week or so away.  

Words cannot adequately express my thoughts and emotions watching my daughter slumber fitfully after coming out of surgery.  Her eyes were heavy.  Her head was wrapped in a turban-like bandage covering the broken places in her skull where foreign plastic and metal probes monitored her every brain blip and wave.  I wanted to scoop her up like she was two years old again and hold her tightly, promising that dad would make the boo-boo go away.  But she's not two years old anymore and this was no simple boo-boo.  When did my liebchen become a young lady?  And when did the trauma and terror of life interfere with the warm and loving world that her mom and I tried to create for her?  

It's not even really about "fairness".  Is it "fair" for my princess to suffer as she is right now?  Is it "fair" for our family to be going through this during such a time of transition and change at home and work?  Is it "fair" for my three sons to feel a bit put-out because big sister is getting all of the attention?  As difficult as it is for us to accept sometimes life is rarely, if ever, "fair".  We roll with the punches and begin to learn that bad things happen to good people and good things often happen to bad.  But, if we are honest, even God isn't really "fair", is He?  I mean, really, is it "fair" that Y'shua (Jesus) should suffer and die for our sins?  Not really very fair to Y'shua, yet He willingly did it for all of us.

So I have stopped asking questions that often have no answers and instead am learning to accept, with God's grace, the full sphere of human experience, not just the good.  I don't know what will happen to my daughter Hannah but I do know this:  God, and God alone, is the only unchanging and certain thing in life.  Though He slay me yet will I trust in Him (Job 13:15).

I will keep you posted.

I'm afraid

As I get older I've begun to notice that life rarely comes at us at an even pace, a smooth series of events that we can handle as they march toward us in orderly succession.  I've learned instead that life seems to happen in chaotic bursts, sudden explosions of reality that, good or bad, rain upon us like machine gun fire interspersed by brief periods of uneasy peace. 

My thirteen year old daughter has suffered from epilepsy for seven years.  After truck-loads of medicine and a small army of doctors from multiple disciplines, we have arrived at the truth that her only natural hope is surgery.  So this coming Tuesday morning, June 14th, my only daughter is going to the local children's hospital to have both sides of her skull cut open and parts of her brain examined, monitered, then excised.

Now I know that thousands of children and parents have walked down this path before and come out far better for it.  I know that I should be grateful that things are not worse than they are.  I know that I should be counting my blessings.  As a rabbi I am reminded, also, that God is near, that we are not going through this alone, and that everything will eventually work out for His higher good purposes and will.  I know all of these things are true.

But I'm still scared.  Is that wrong?

I'm scared that things may not go as smoothly as they should.  I'm scared she may die, or have a stroke, or become profoundly disabled.  I'm scared that the surgery may make her already violent seizures worse.  I'm scared that her follow-up care may be compromised because of our impending move to Kansas.  I'm scared that the cost her care may spiral rapidly out of control and swallow our family financially.

The current religious climate in Western culture often dictates that we should not be people of fear and, to an extant, that is true.  I firmly believe that we should never let fear become either our sole or primary motivation for anything.  I'm also learning, though, that fear is a reality with which we all must cope, a companion that, at inadvertent (and usually inconvenient) times crops up and demands our attention.  I'm learning that God will always help us deal with fear but He may not always take it away.

I must go now.  I'll keep you posted.