SOFT Stories – Too Many Questions

Too Many Questions

By Angie Ward, mother of Christopher (4/7/1996-2/26/1999)

The questions began the moment Christopher was born.   Why are there sores on his head?  Is he okay?  What’s wrong with my son?  What is Trisomy 13?  What do you mean he is going to die?  It can’t be true; my son isn’t going to die!  Could the doctors be wrong?  Why is this happening?  Am I having a nightmare?  Will someone please wake me up!  How will I know if his oxygen is low?  How can I tell if he is having a seizure?  Why isn’t he eating?  Why won’t he stop crying?  What is a hernia?  Should we do hernia surgery?  Why did he stop breathing?  He was so peaceful when he stopped breathing; now he has pneumonia.  Was I wrong to stimulate him to bring him back?  I love him.  Does that mean I’m supposed to let him go?  Should I use an apnea monitor?  Should we do CPR?  What if he dies?  What will I do?  I should be making funeral arrangements.  Do I want burial or cremation?  This isn’t fair!  What if he lives?  Am I strong enough to handle this?  Can I take care of him by myself?  Why is he doing so well?  Maybe he’ll defy all of the odds.  Should we do open heart surgery?  Why isn’t he sleeping?  How do I know when I should take him to the doctor?  What are myoclonic jerks?  He stopped breathing again?  Why does this keep happening?  Am I doing something wrong?  What is RSV?  Will he live?  Should we put him on a ventilator?  What should I do?  God, if he dies, please take me with him!  I just can’t do this alone any more.  What can I do?  How do I find a good nurse?  I won’t let just anyone take care of my son.  When do we start physical therapy?  Will he learn to hold his head up?  Why does he keep getting sick?  God, can’t you give him a break?  Why isn’t he sleeping?  I’m getting so tired.  We never decided.  Should we do open heart surgery?  Can I put him through that pain?  What if he dies during surgery, will I ever forgive myself?  What kind of quality of life will he have if we don’t do surgery?  Why does he keep getting pneumonia?  Why have the seizures started now?  Do the seizures hurt him?  Then why does he scream?  God, please stop this.  I’m getting so tired.  How much longer can I do this?  Does he have pneumonia?  How long will the virus last?  What antibiotic haven’t we used lately?  Will it work?  Is his oxygen low?  Why do we have to go in an ambulance?  He’s going to be alright.  He’ll pull through this time just like the rest.  Isn’t there something that we can do?  Am I wrong not to put him on a ventilator?  Is he going to die?  God, why does he have to suffer?  Couldn’t You have a least spared him the suffering?  How will I go on?  Good-bye my love.

I’m numb.  Is this a dream?  How can all these people go about their daily lives as if nothing happened?  Don’t they know that my son just died?  “Please STOP!  My son just died!  Please acknowledge him.  He was my life.”  How am I going to go on?  My arms ache.  My heart hurts.   I would give anything to touch him again.  It’s my fault.  I should have taken him to the doctor sooner.  I shouldn’t have let him spend the day with his father.  I should have known if it was pneumonia due to aspiration or pneumonia caused by a virus.  Maybe if we had used a steroid he would have lived. I should have put him on a ventilator.  I should have done open-heart surgery when he was an infant.  I should have gotten more help.   I was so tired.  How do I forgive myself?  Why did he have to die?  I wanted him to live.  When will the pain end?  Will I ever feel joy again?  How do I learn to live without him?

Too many questions…I now know that sometimes there are no right answers. I did the best I could.  I loved my son.