Thursday, May 3, 2012

Normal, Sort-of

My eldest turned 14 last week.   How did that happen?  It seems like just yesterday we were all waiting on pins and needles to find out if the blue or pink stuff was going to go back to the store.  My mother who had rabidly prayed for a girl, just melted when she saw my sweet boy.  "I'll just take all that silly pink stuff back."  In one glance he owned her and still does today.

The eldest has been a blessing and a challenge.  Well really, that could be said of any child.  He has not followed the usual progression.  There have been medical problems and educational challenges that no parent anticipates when dreaming of a baby.   And if I am honest I have not always  recognized them soon enough or handled them correctly.  But we learned something each step of the way.  This child, who I dreamed of teaching so many things has taught me more than I could have believed. 

My child has taught me to stop planning.  I planned on a healthy baby girl.  I got a boy who along the way had multiple medical problems.  I planned on all the arts and crafts we would do together.  But arts and crafts were not so enjoyable with motor skill and visual spatial problems.  We learned to adapt and have very realistic expectations.  I planned on all the extra curricular activities he would participate in but those go away when the basics are already overwhelming.  We have learned to truly live in the moment.  This is a gift.  Now I recognize and fully enjoy those perfect moments in time that sneak up on us. 

Over the years we have heard a lot of platitudes from people trying to understand and commiserate on our journey with a special needs child.  I have learned to hate most of the expressions of caring while still loving the person saying them.  Some things in life you just do not understand unless you are the one sleepless and worrying in the middle of the night.  But now I can truly understand another parent's pain and uncertainty about the future when a new diagnosis is added to the list.  Now I understand why some parents know more testing needs to be done and refuse to proceed.  It is not out of ambivalence or lack of love.  It is self protection, because even parents need a buffer from the bad news sometime.

I have learned to be an advocate for all my children.  My job as mother is so much more than cooking and cleaning.  It is up to me to make sure that my boys receive the best possible care.  It is okay to question, research and if necessary fire doctors, schools and anyone else coming in contact with my children.  If my goals for the eldest are different from the group he is in I absolutely will ask, push or pull the group  to accept him as he is and not expect him to conform.  Society is full of people who have not only their own drummer but their own band.  Enjoy the music people.

Most importantly I have learned to enjoy normal, our version of normal.  You will never catch me sending out one of those phony Christmas card letters listing all the super human accomplishments of my children/family.  We are average, normal, sort of.  And I like normal.  In the last two years God has granted us two miracles.  The eldest has grown out of two diagnoses and I am incredibly grateful.  Does that stop me from asking for more miracles?  No.  But the good Lord knows that I am a selfish only child at heart and I have a feeling he is not surprised.  I will continue to ask for healing, for positive changes because these things can make his life easier, better as an adult.  But each day I will see him for the amazing young man he is becoming, the loving human being he is each day, and I will be grateful.  Grateful for my three beautiful boys, grateful for their health, their loving hearts and for our family's normal. 

No comments: