Tuesday, April 8, 2014

Really, 4 Years Old

It's that time of year where I have flashbacks to the beginning of David's life and there are no good memories of the first three weeks he was in this world.  It was filled with fear, turmoil, confusion, doubt, and terrible odds of him ever coming home.  He went from a 5% chance of survival to a terrible discussion on day 2 of life that we should consider what our wishes would be if he did not survive.  They wanted to life flight him by helicopter but they didn't think he could survive the flight.  Fortunately we were able to transport by ambulance when he was 2 weeks old, unfortunately he was still on the ventilator.  It wasn't until he was 3 weeks old that his platelets started to produce and we could stop transfusing, he was also off the ventilator.  It took 3 more weeks until his homecoming when they realized they couldn't wean him from his oxygen or could he bottle feed.  By that point bringing him home on machines and monitors was a welcome relief although I was filled with doubt about my capabilities as a nurse/mother.  Somehow we survived that first few months until the oxygen wasn't necessary.  And we still survive now with a feeding tube as his only way to receive the much needed nutrition to grow and thrive.  We also went through open heart surgery when he was 16 months old to repair two holes and suture his mitral valve.  There have been minor surgeries along the way for ear tubes, tonsils, adenoids, laryngeal cleft; but we have found so much to celebrate in these past 4 years and are truly thankful for every day we have David in our lives.  When he was born so sick my only wish was for him to live long enough so I would have good memories, I wanted to know his laugh and smile and how his voice sounded.  My biggest fear was that my memories would only be of a child hooked to machines, filled with fluid, never opening his eyes,
So this past year he started pre-school learned all of his capital letters and most small letters.  He learned numbers 1-10 and is still working on counting (unless you think 1, 2, 3, ten sounds correct).  He still has a long way to go with running and jumping and writing and using scissors. 

The part that is hardest to comprehend is that a child can be verbal but can't communicate well.  He can parrot most words so you can understand them.  He can say 3 to 4 word phrases.  He can tell you he wants to go to the zoo or go swing.  If he is hurt he cannot tell you what happened.  If you ask questions you most likely will get a random word as an answer.  If he comes home with a bruise on his forehead he will answer yes to the following questions: did you fall? did someone hit you? did you get bit?  did the dog do it?  did your teacher do it?  All answers are yes.  Did you ride the bus today?  Answer may be Woody.  Did you go to school today? Pedro donkey zoo may be the answer and yest the donkey at the zoo is named Pedro but that does not answer did you go to school today.  All in good time this too shall pass.

Another difficult component of David is that he is apt to escape.  Like walk away from you at the park or zoo or crossing a parking lot.  He has no comprehension of safety issues and he does not respond to the word stop.  Very scary stuff.  These are goals we work on throughout the year in school and at home.

The joys are really too many to name.  His laugh, his smile, his hugs, his kisses.  His sense of humor.  When Zac says who thinks Zac is awesome?  David raised his hand and says I do I do.  When he says I wuv you it melts your heart.  When I don't answer to mom or mommy and he yells Adina through the house.. these are the things that memories are made of.

When you know his favorite part of the zoo is the petting area and his favorite animals are horses.  When you know he like sports and superheros.  He has favorite movies (Shrek and Toy Story).  He loves nursery rhymes (he can finally say one from beginning to end, Patty Cake).  He loves all books and music.

He is so much more than I ever dreamed of from those first three weeks.

He is so much more than that prenatal diagnosis at 15 weeks pregnant.

He is so much more than a boy with down syndrome.  He is David and he has fought Goliath more time than I ever dreamed possible.  His 4 years on earth has taught me so much.  His smile is contagious and his personality sucks in strangers of all sorts.  I can't describe my joy to be his mother.  Happy 4th birthday (April 16th) to my son we have come a long way together in this world.

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