Abrams Journey

Someone requested that I write a little post about my youngest son, Abram, and his journey.  I have been having a hard time with his "problems" lately. So, I agreed to do it because I think that it could help my mental health as well as meet this persons request.  So, here is a little peek into Abram's journey....

Oh, where do I begin?  Abram was born at 36 weeks in a small town hospital.  He had a few breathing issues and was then transferred to the NICU at a hospital that could better manage his breathing.  He spent 9 days at this hospital and then we transferred him to an Intensive Care Nursery that was a little closer to home.  He was diagnosed with Ehlers Donlos Syndrome shortly after his birth (but our insurance company would not pay for that diagnosis---so generically he is diagnosed with hypotonia.)  We were blessed enough to bring him home, which I will be forever thankful for.  He had a regimen of tube feedings and medications and doctor appts.  He has been through physical therapy and occupational therapy.  Within the first two years of his life he had two surgeries and was in five different hospitals (I have the grey hair to prove it.)



Abram in an Intensive Care Nursery a couple of weeks after he was born.
When he saw this pic a couple of weeks ago, he asked, "Am I dead in this picture?"




Abram at six months old, he had no muscle tone.  He was floppy like a rag doll.


He has always progressed well, very rarely regressing.  But, he will always have physical issues.  For instance, he has scoliosis (which in my opinion is due to having hypotonia) and has to where a back brace.

Abram's back brace is called a TLSO.  Lately, it is his arch nemesis.


He can run with the boys, but has a hard time keeping up, getting tired easily.  Those who are closest to him, know what he is capable of.  Our family has kept him very close, never really going to daycare or being with strangers.  So, when he started preschool he had a difficult time---emotionally as well as physically.  That was my fault, I admit it.  I should have better prepared him for this huge transition. 

First day of preschool, it was a grim day.

Parent-teacher conferences rolled around, and his teacher tip-toed around the issue of his disability.  She is an amazing teacher, and I could tell she was very nervous.  "Don't be nervous.  Just tell us what you think he needs and we will do our best to meet in the middle," I told her, my husband by my side rolling his eyes. I could tell he was thinking "Oh crap, here she goes..." He gets embarrassed when I get a little bucky with people, but I am Abram's advocate and I will do what is best for my son.  It does not matter what the neurologist thought (whom I fired) or what the geneticist thought (I also fired her) because my son is not, nor will I ever allow him to be, a science experiment.  Sitting in numerous doctors offices, having complete strangers examine and oogle over my little boy has taught me that.

Surprisingly, I really valued what the teacher thought.  The look in her eyes told me she really cares about my son.  He is not a statistic to her.  He is her preschooler and she is advocating for him.  Abram will have struggles for the rest of his life.  But, he is very fortunate to be able to do the things that he can.  He has worked very hard for his accomplishments, nothing has been handed to him.

It is easy to make a quick judgement or an unintentionally rude comment about someone who is "different."  I have learned that people do not think before speaking (example:  someone who I love dearly, told me that my son looked "retarded" when he was little---she clearly did not think prior to speaking.)  Please think of little Abram and his journey to reach four years if unkind thoughts drift into your head or out your lips about someone who is different.  Then, say a quick prayer for them, because they need all of the help that they can get. 

Noah has always helped to guide his little brother.  He is a vital part of Abram's life.

"Kindness is the language that the deaf can hear and the blind can see"---Mark Twain