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.

Monday, February 13, 2012

Relief, Denial and Changes

Life with Michael was great.  He was fun, playful, and loving, and he had the sweetest little smile that could charm the socks off of anyone.  He was rolling over, then sitting up, then crawling; doing all the things a baby should do, and in my head I knew this boy was healthy, but my heart needed convincing.  Still, the nagging doubts and fears would come in. When he was about one year old, I had to call the Pediatrician; I think Michael had an ear infection at the time.  I gathered up my courage and asked her the question I feared the most;  "He doesn't have Pompe's, does he?"  With almost an audible gasp she replied, "NO!  If I had thought you were worried about that, I would have said something a long time ago!"   What in the world do you think I would have been worried about?  Of course this was on my mind. Even though my head knew he didn't have it, my heart needed to hear it spoken to remove any doubt, to get a professional decision on it, so I could finally lay it to rest, and to resolve it in my heart, not just my head. I began to relax with the knowledge that this horrible disease would not take this baby from me.

However, every time he would get sick, the same nauseating knots would still constrict my stomach, and fear would circle round me once again.  God had promised me another child, but He hadn't said the child would be healthy or live a long life.  God's promise to me now began to have limitations in my mind.  There are other diseases, other accidents, multitudes of things that could happen which could still take this baby from me.  I was living in the terrifying realization that I was vulnerable; I was not exempt from pain or death.  Bad things happen to good people;  I just never thought I would be one of them...ever.

In spite of the inner turmoil I was experiencing, I was outwardly showing a lot of strength. It wasn't a show, or some kind of cover; I really believed that I had walked through the grief and had won.  I believed all of the platitudes we speak when someone suffers, and seldom let myself question them.  I believed that I was "normal" again, and so did everyone else.  That chapter of our lives was over, and we were moving on.

When Michael was 9 months old, I applied for a change in my job.  I had worked on Med-Surg for over 3 1/2 years, but now, having been through the loss of a child, I had a desire to work on Post-partem; a generally happy place, where I could help other mothers, especially the occasional ones who lost a baby, or were given some kind of sad, unexpected news.  I could relate to those experiences, and I felt it was a good move.   I interviewed with the manager of the unit, only to find out they weren't hiring.  I felt deflated and disappointed.  But then she said to wait; the manager of the High Risk Obstetrics department was hiring, and given my story, maybe she would interview me.  She did, and I was hired.  I hadn't even know there was such a department, and now I would be working there.  High Risk OB, or OB Special Care, is a place for pregnant moms experiencing any kind of health issue while pregnant.  It could be hyperemesis (excessive morning sickness), preterm labor, diabetes, any kind of medical or surgical issue while pregnant, and so on.  It was also the unit where moms were placed when their babies had died in utero and would be stillborn, or where other conditions led to the death of the baby.  It was not as happy a place to work as Post-partem, but it was incredibly fulfilling.  I met several women there who I am friends with still to this day because we shared a common's who had lost a baby.  I believe God positioned me there for a purpose;  to minister His love and compassion to other moms, and to help bring healing to my own heart.  

Mike was 1 1/2 years old when we were able to purchase our first home.  It was a great little house in a good neighborhood with kids about the same age as Mike, so it was nice that he would have friends to play with as he grew up.  Our life dream was unfolding once again as we had envisioned, and things were good. 
A few short weeks after we moved in, I began to suspect that I might be pregnant.  It was unexpected and unplanned, this little "housewarming gift", and I chose to deny it for quite awhile.  One day at work I was sharing with my co-workers the fact that I hadn't had my "monthly" in over 2 months.  Everyone was convinced I was pregnant.  "Just because I haven't had my period in over 2 months doesn't mean I'm pregnant.  There can be a lot of other reasons why you don't have it besides being pregnant", I quipped.  An OB doctor was standing at the counter and overheard my comment.  He stopped, looked at me point blank and said, "But not likely", with a smirk on his face.  I went home and made the appointment with my OB; there could be no more denial.
The day came when I went to see the Doctor.  The usual exams, the peeing in the cup, all seemed routine and kind of silly.  I was highly suspicious that I was pregnant, but I kept telling myself I wasn't.  I sat in the waiting room watching the other moms holding magazines over their ballooning bellies reading articles on breastfeeding and child-rearing, whilst their toddlers ran around the place tearing it up.  Finally, the nurse stuck her head through the door, looked at me with this huge grin and said, "it's positive!"  I must have looked a bit shocked, because she asked me if I was okay.  I was, but then again, I wasn't.  This wasn't the unbridled good news that one runs through the streets and shouts least not in my world.  This news meant we had to face the possibility once again of having a child with Pompe's.  It meant having to live with the anticipation of joy of a new baby, but with the terror of knowing we could feel the sting of death once again.  No, this news wasn't something to celebrate about, it was something I would have to contend with for the next 7 months, and beyond.


  1. Thank you dear friend for your courage to write with gut wrenching honesty. Love YOU always