Blog Introduction

This blog is the story of how my husband and I faced the illness and death of two of our children. Each blog post is essentially a chapter in the story, so in order to truly understand it, you are going to benefit by starting at the beginning.
I hope you find our story touching, and in some way find comfort and hope through it as you face your own storms in life.

Tuesday, February 14, 2012

Feelings of Impending Doom

Work continued to provide me with an outlet for caring and the expression of the hope I felt in God.  I had many opportunities to share my own loss with others there; it was incredible what doors were opened by a shared grief.  There is great comfort in knowing we are not alone in the journey of pain and suffering.

As my own belly began to expand with the new life growing inside, I began to have fears that all was not well.  This baby did not kick as strong or as often as Michael had.  He or she was quieter, more like Sarah had been.  When I made comment of this at work one day, the nurses all said to me, "don't worry.  God wouldn't do that to you again."  I was silent.  First of all, I didn't want them to say that.  It was like tempting fate, although I didn't believe in "fate".  My vulnerability at this point said to not push any wrong buttons, whether I believed in them or not. I was on a tightrope of doing, saying, and believing just the right things so I would be saved from falling into the pit of grief again, somehow believing I could manipulate the future by my own actions.  Secondly, how did they know what God had planned?  Maybe this was part of His plan for us- to have another child with Pompe's. How could they presume to know God's plan for me? After all, God had promised me another child, not other children.  And lastly, did God do it to me the first time?  That opened up a can of worms all in itself.
It didn't matter what words of reassurance were given, or by who.  I had that maternal, "gut instinct", nagging at me day after day; the unconfirmed knowledge that this baby had Pompe's, too.  That lingering, subtle suspicion  couldn't be talked away, and couldn't be prayed away.  Although I said nothing, I knew this baby was going to die, too.

I was awakened with the feeling of a little "prick", then the swoosh of water.  I had only been asleep for about 4 hours after having worked a 12 hour shift, and at 38 weeks pregnant, I was tired.  But the sudden realization that my water had just broken caused me to quickly swing  my arm around and slug Rob across his sleeping body.  "Get a towel!  My water just broke!"  The poor guy about hit the ceiling, probably most inspired by the beating he was just alerted with.  With matters quickly under control, and a phone call to the doctor placed, we called Grandma and Grandpa to come in and watch Michael while we ventured off to the hospital for the birth of this new little life.

It took awhile to get into a good labor pattern, but within a few hours things began to progress, and at 1:05 pm on April 29, 1989, our son was born.  He weighed 7 pounds, 3 ounces, and was 18 1/2 inches long.  They thought he was a few weeks early, so when he seemed to be a little stressed, the doctors were not overly concerned.  I was worried.  He didn't come screaming into the world as his brother had, but was quieter, and showed less effort to cry.  When it  came time to go to my room after recovery, they wheeled me past the nursery.  Working there, I knew they always brought the baby to the mom and let her hold him for a few minutes before getting her settled into her post-partem room.  As we approached the nursery, I was told  I wouldn't be able to hold him because they were giving him a little oxygen.  His respiratory rate was up a little bit, and his blood sugar a little low.  These can both be relatively normal after a stressful delivery, but in my eyes, they confirmed what I knew in my heart- he was dying.  Everyone, including Rob, continued to encourage me and reassure me that things were going to be fine...that he was going to be okay.  I could only reply with a half-hearted, "I don't know"; teetering between the hope I was being handed, and my gut that kept telling me otherwise.
He was eventually wheeled into my room, and I was afraid of what I saw.  He seemed to look blue to me.  I suppose I was over-reacting at this point, but his color wasn't the best.  They told me he had some facial bruising, which would explain the discoloration.  They were monitoring his blood sugar frequently, so his little heels looked like pin cushions.  As I examined this new little creature with a head full of dark brown hair, I couldn't let myself get too close.  I held him and loved him, but there was an emotional distancing.  I was already beginning to grieve what I knew I was going to lose.
Sleep was elusive that first night.  I kept thinking and praying, hoping that my instincts were wrong.  Was God really going to allow this again?  I prayed more.   I suppose I bargained with God, yet I believed that if this was indeed God's plan, there was a reason for it, and He would give us the strength to get through.   Since I couldn't sleep, I got up and walked the halls.  It was pretty quiet in there at 3 am.  Most moms and their newborns were sleeping.  I wandered over to the nursery window and peered in at my son lying in the bassinet sound asleep.  I just stood there and looked at him.  He was mine.  I can't put into words how I felt in that moment.  I wanted him, but I didn't want him at the same time.  The nurse caught my eye and asked if I would like to have him out in my room.  I smiled weakly and nodded no.  I didn't want him with me now.  I was still trying to sort out my emotions and feelings and thoughts toward him.  I loved him, but I was afraid to allow myself that love.  Subconsciously, walls were beginning to be erected around my heart. Slowly I walked back to my room, and as I crossed the threshold, I was keenly aware that, in a way, I had just rejected my own son in order to protect myself.  Guilt walked in the door with me.