5 Years Ago

As I stood looking at the calendar this morning, taking note of what this week entails, todays date jumped out at me.   Five years ago, April 23rd, was a very significant day in Jalayne's life.  It was the day of her open heart surgery, a day that we had dreaded, yet looked forward to from the day we brought her home.
Laynee was born with a very large Atrial Venticular Septal Defect.  I have always been thankful for this defect for it is because of this that she was born in Peoria and found her way into our home.  Her mother was unaware of the fact that she was pregnant.  When she went to the emergency room with severe cramping, she learned that she was in labor and would soon deliver a child.  An ultra sound revealed that the baby had a heart defect.  Laynee's Down Syndrome was not detected at this point.  Because of the defect, birth mom was flown from her area to OSF Saint Francis in Peoria in order to deliver in a hospital that had a NICU and surgeons who could perform surgery immediately if needed.  Jalayne was delivered by C-section and spent several days in the NICU before coming home with us. 

We knew from the start that surgery was imminent.   They really hoped that the surgery could wait until she was at least 5-6 months old.  We saw the cardiologist frequently and kept a close eye on her.  She was pretty weak those first few months, eating was difficult and her coloring was poor. Then, on April 19th, just shy of three months old,  she was sleeping in her infant seat when she started making little squeaking noises.  When I went to take her from her seat, her lips were blue and her skin had a sickly gray palor.  I was scared, to say the least.  In moments she went from sleeping peacefully to looking as if she was fighting for air.  Moise was home with me at this time and I knew I needed to get her to the hospital fast.  I called my friend Karen, and she happened to be close by my house, she stopped by within a few minutes and was also worried about the way Laynee looked.  Karen and her daughter, Jenna, stayed with Moise and I loaded Laynee up in the car and headed to the hospital.  I had called her cardiologist and thankfully they did not make me go through the ER but I took her straight to the office so that she would not be exposed to any viruses in the ER.   It was quickly decided that she would not be able to wait until 6 months for the surgery.  She was in congestive heart failure and needed the surgery soon.

With surgery scheduled for the next morning, I took her home with the prescribed Lasix to keep the fluid from around her heart.  I sat up with her most of that night, too afraid to be away from her, too afraid she would stop breathing.  We checked into the hospital early and waited, and waited and waited.  Our friend, Matt, came up and sat with us most of the day as we waited.  The hours slipped away and finally, late in the afternoon, they came and told us that the surgeon was working on an emergency cardiac patient and we would need to reschedule for Monday morning.  Poor Laynee was starving as they wouldn't let her eat anything before surgery.  She was never keen on a pacifier but that they she sucked on it as if she might swallow it whole.  After giving her a bottle, we went back home to wait two more days.  I was terrified that she would pick up a virus and would not let anyone in or out of the house. 

Monday morning, on the 23rd, we were back at the hospital and this time she was taken immediately to surgery.  How well I recall the fear as Jim and I handed our beautiful baby over the nurses.  We knew she was in good hands but we knew also that she was very sick and that things don't always go smoothly.  Jim and I alternated between sitting and pacing for several hours before the surgeon finally came in to talk to us.  The defect was large and she couldn't have waited much longer but it went off without a hitch. 

Then began the long road of recovery.  We had been told to expect her to be in the Peds ICU for about 4 days.  Four days came and went but the rhythm of her heart would not synchronize.  I watched that monitor hour after hour, day after day.  I had a couple of dear friends who took turns going to the hospital and holding her so that I could spend some time with my other children.  Laynee appeared to be healthy, her color was much better, her appetite was good, her breathing was good.  Still, the numbers on that monitor told an entirely different story. 

I recall standing over her bed as the doctor's came in on their rounds each morning. They were clearly at odds over the best course of action to take.  The cardiologst wanted to wait it out, the surgeon wanted to go ahead and place a pacemaker in her little heart.  I was afraid of the idea of another surgery and pleaded with the monitor to give us the numbers we needed to see.  Finally, after two weeks, the chief cardiac surgeon came in and with a tone that pracitically dared someone to argue with him, announced that "this little lady needs a pacemaker.  What are we waiting for??"  Just like that, it was settled.  They would cut into the same incision the next day to place her pacemaker just below her sternum. 

I had committed to being a chaperone for Jade's fifth grade class trip on that day.  While I am sure her teacher would have understood my predicament, I was unwilling to miss it. The fact was, I needed to be in two places at the same time.  The surgery was scheduled for the afternoon so that morning I followed behind the school bus knowing that the trip home would be much faster by car than bus and every second would count on this day.  After spending the day with Jade's class I sped home to arrive just in time to see Laynee off to surgery again.  This surgery was quick and as soon as she was back in her room it was easy to see that the pacer had worked a miracle, her heart's rhythm was perfectly in sync.

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Two days later we brought Laynee home and she never had any other problem's with her heart.  Each month we would do a check to make sure the pacer was doing it's job and send the results to the cardiologist by phone.  All in all, it was not nearly as big a deal as I thought it would be to have the pacer.  The only problem was that our busy little lady loathed sitting still for the few minutes it took to check the pacer.   She sported a scar that ran down the center of her chest.  It was angry looking at first but in time it faded until it was barely noticable.

As I look back at this day five years ago.  It hurts to think of all that she went through, only to be taken far too soon.  I've questioned God a million times on this matter.  In my mind, I imagine that any death would have been easier to take than drowning, and so I ask, "Why God?"  "Wouldn't it have made more sense to have her pacemaker quit working?"  Yet in my heart of hearts, I know that there is no such thing as "easier" in reference to the death of a child.  There is no good timing, no good way to say "good bye" to the little ones we hold so dear.  Laynee was a fighter, a brave girl who feared nothing.  I cherish those days when we fought with her, when there was something that we could do to help her, to live out, on a daily, hourly basis, our love for her. 

I miss her.  I miss her so much. 

Get Up and Do Something

Yesterday I participated in a half marathon in Saint Louis, an unprecedented experience for me.You can read about it here . It was one of the experiences that can only be described as wonderful and awful at the same time.  Throughout the weeks of training, and again during yesterday's run, I have pondered, on many occasions, the question "why am I doing this?'  I know also that there are many others who wonder the same thing.  The question does not have a simple answer but there is, indeed an answer. 

I have always enjoyed running, or rather, the feeling I get from running.  I don't think that any runner really and truly enjoys the actual act of running, especially distance running.  For years I have been an off an on runner, running when time and circumstances allowed.  During the years that I was bringing up small children, I wasn't able to run much.  But when Laynee died, I suddenly found myself with extra time on my hands.  Time that I did not want, time that I had no idea how to fill.

 As expected after the death of a child, depression seemed to be constantly trying to suck the life out of me.  My doctor suggested anti depressants, which I tried, and they helped to an extent but I didn't like the way that the pills made me feel.  I was terrified of the prospect of becoming dependent on medications.  Because of my profession, I have come to learn that medications are widely misused.  It is so easy for people to just pop a pill.  I see countless patients who are on cholesterol meds and/or anti depressants.  While I absolutely believe that some of these patients truly need the prescribed meds (my intent is not to shed a negative light on medication) I know also that proper diet and exercise would go a long way in helping many of our patients to feel better.  Reality is that, in today's society,  people like instant results and taking a pill is easier than exercising.

 Depression creates a vicious cycle and I recognized this cycle in myself.  After Laynee's death I didn't want to do anything.  Too often I would find myself sitting, doing nothing, staring into space.  The less I did, the less I wanted to do and the less I did, the deeper the depression......an ugly, vicious cycle.  One that needed to be broken.   I took the meds for a while but they made me feel disconnected and tired.  I tried different meds but they gave me a complete "I don't care attitude." I didn't like the way I felt.   And so it is that I decided to get off my rear end and get serious about exercise. A few walks and a run here and there were not enough to battle the degree of depression that Laynee's death was causing.  During the winter of 2010-2011, I did a 13 week, intense exercise program called P90X.  I was committed to this program and I did complete it but I can't say that I enjoyed it.  Then, in early spring of last year, I committed to run in the first Tremont to Peoria St Jude run.  I started increasing the length and frequency of my runs.  The St Jude Run in August was a beautifully motivating experience, in addition to being for the cause of beautiful children fighting a beastly disease.  The running made me feel so much better physically, emotionally and spiritually.  It causes me to crave better, healthier foods, it clears my mind and helps me to sleep less fitfully at night. I suppose that I could be accused of using running as a form of "self medicating" and that's okay, I'll take that accusation.   After completing the run, I began to notice that it was easy to skip out on running from time to time. Without the motivation of  something to strive for,  I became a "fair weather runner".  Around the time of Laynee's birthday this year, I felt the depression starting to creep back in.  The holiday's, her birthday, and the winter weather seem take their toll on me.  I am a purpose driven person.  I needed something to strive for, something to force me to get out and run.  I began to entertain thoughts of  running a half marathon. 

I was used to running 3,4 or 5 miles but 13????  That was some serious mileage and I had no idea how to train for it.  Sitting at one of Jamee's track meets with her former high school coach, I told him what I wanted to do and a couple of days later an email appeared in my inbox.  It contained a half marathon training program and said, in essence "I've done my part, now you do your's," which was to say,  "get out there and run."  So I did.

Yesterday's half marathon was likely one of the most physically difficult things that I have ever done in my life.  Running and it's many challenges closely parallel life.  I will share more on this later but for now, I leave you with a challenge.  If you struggle with depression, get up and do something.  Commit to something that's hard.  I know that you don't want to but do it anyway. 

Incomprehensible

Two years, seven months and seven days...........that's how long we were blessed with the pleasure of holding our Laynee.  And now, today, we have lived two years, seven months and seven days without her, with that vacant feeling in our hearts. 

It is incomprehensible.  The fact that she is gone, that she's been gone so long, that time keeps rushing on, that the aching never stops, that we had her such a short time, that our "bigger than life girl" is no longer here...........it is incomprehensible.  There is just something about this that seems so incredibly unfair.  I didn't want to give her up so soon.  I never wanted to be this long without her. 

This morning I woke to the early morning light just beginning to filter through the windows.  My first thought, as it is every morning,  was that Laynee is gone, that it will be another day without her.  My second thought was that it is Easter, a day set aside to remember the death and resurrection of our Lord and his amazing gift of salvation to all mankind. I lay there in the morning light with a grateful heart, knowing that it is only by this gift that I have a hope of seeing her again one day.  My heart felt heavy as I thought of Mary, mother of Jesus, as she watched her son die in such a heinous way.  My brain cannot wrap around the joy there must have been on that resurrection day.  So much emotion, for all who loved him,  must have been packed into those three days and the days that followed. 

Since Laynee went to heaven, Easter has always been an especially emotional day for me.  It is a day filled with gratitude but also a day of intense longing for her.  I wish for pretty dresses,  new shoes, dye colored eggs and excitement over Easter Egg hunts.  I have Easter Baskets filled with candy and other good things for all of my children, all except one. I fill her basket, and will take it to her burial site.  A green rubber duck, a stuffed bunny, a chocolate bunny and plastic Easter eggs fill her basket.  I do it because it fills an inherent need to remember my child.  I do it because to not do it feels like forgetting.   I do it, knowing that in a few days I will go back and get the basket and that it will remain untouched.  I do it, even though it hurts, because to not do it will hurt as well.   I do it because the missing her continues day after day without relenting. Yet, even as I hurt I know that because of this, because of Easter, because of the resurrection, one day the pain of missing her will end.  One day, because of Jesus, she will run into my arms again.  But until then............

HAPPY EASTER MY SWEET LAYNEE GRACE