By Marianne

Tyler was born January 30, 1999 at 12:05 A.M.  I remember my biggest worry at the time was how the new baby would affect our 13-month-old child at home.  Would they like each other?  Would anyone in my family ever sleep again?  It was all so blissful.  That changed five hours later when our pediatrician came in to say Tyler would be flown to the NICU at the University of Chicago.  This is a summary of the months that followed.

Months 0-6 “Coping”

Down syndrome.  Physical therapy.  Speech therapy.  IFSP.  Laws.  Rights.  Books.  It is all so overwhelming at first!  I don’t remember much about the first six months because it was filled with doctor appointments, specialist appointments, and appointments with our service coordinator.  Tyler was about to start the first of many therapies.  Only this is clear about this time.  Everyone, including me, fell in love with Tyler instantly.

Months 6-12 “Grieving”

At some point during this time period the reality of Tyler’s diagnosis set in.  I remember vividly the day I realized, “This is something I cannot change!”  Sadness became a normal part of my life. Tyler’s first birthday was approaching and I didn’t feel like celebrating.  My focus was on what my baby couldn’t do.  Not crawling?  But he is almost 11 months old!  Will he ever talk to us?  Should we start sign language?  All this sadness was intensified because I had had a baby the year before and knew what a “normal” child should be doing.  Now I know it is OK to grieve for the child you thought you would have.  It is an important step towards acceptance.

Months 12-18 “Joy”

With the help of a great family and a supportive husband, I can now focus on the pure joy of Tyler.  He is the best thing that has ever happened to my family and me.  He makes us laugh or smile every day and his triumphs are our triumphs.  Tyler crawls, climbs, cruises and even talks a little!  He drinks from a cup, feeds himself and loves to wrestle with his big brother.  Sure there are tough moments, still moments of sadness.  However, I am finding out that the happy times are much more frequent!

 

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