It started when my kids where fast asleep after an afternoon full of action and activity.  My 2.5 yo (with SWCAH) was especially adorable that day, running around with the others like a big boy.  In middle of the night he woke up with the start of a sever Bronchitis and wheezing.  I kept on repeating the nebulizer on him untill morning and got in touch with his pediatrician right away.

I will go straight to the peak instead of boring you with a detailed account of the day.  Just before I went to sleep for the next night, after staying awake the entire night before, I went to cover my son up and hoped that a relaxing sleep will do him good.  To my horror I found my son in a terrible unconscious state. He was in a crib right next to me and has even spoken just minutes before, but he obviously went into cardiac arrest from one minute to the other and was gone in no time, without anyone being prepared for this final farewell.  (To set your minds at ease, this was a natural cause of death and had nothing to do with my son’s CAH.)    

A week has past since than, but the pain is so fresh and the lump in my throat wouldn’t go away.  The medical experts involved all reassured me that there is nothing that I could have done which I didn’t do.  It is comforting to have a clear conscious, but unfortunately, guilty or not, my son is not with us.   If not for my strong belief in a better life after death and in God in general, I don’t know how I would be able to continue on with life. 

For those of you who remember, we were always struggling to keep my son’s CAH and allergies under control.  In his 2.5 years, he suffered the equivalence of difficulties and pain that others experience in a lifetime.  In the past couple of month he was progressing immensely.  He became gorgeous and developed an adorable personality.  We were also in the progress of looking into new areas of treatment that we hoped would help with his growth issues.  And then, when things started to look up for us, our worst nightmare happened.

I am not questioning God’s will.  From a religious Jewish viewpoint I believe that everything that happened is really for the best.  Even from my human eye, I can see there was good wrapped in the tragedy, like the fact that it happened in a way that I don’t need to carry around with feelings of guilt and that it happened right before I went to sleep and I didn’t wake up to find him dead.  Yet, it is an extremely painful pill to swallow.  It is taking all my energy to keep going and to continue to be a strong and supportive mother to my other kids during this period of crisis.  Thanks goodness, we are managing thus far, but it is hard.

I would like to thank you all for being such a supportive group.  This website was a great source for knowledge.  It helped me be the best possible mother to my son for the time that I had him.  I would like to wish you all a happy future and that you should never learn firsthand the pain loseing a beloved child.

Yours truly

Risty