Silicon Valley Down Syndrome Network Membership


29 Sep 2011 1:08 PM | Anonymous

This is a personal story about my wife.  To abduct a quote from a movie I saw once “she is my true North”.  She is also a hard driving and caring woman.

We certainly didn’t anticipate a child with special needs, and we never went through the tests that most doctors encourage during pregnancy.   After a long delivery process she lay exhausted and concerned.  Her child had a disability that she didn’t know much about and information was always the best way to comfort her.  And, unfortunately at this moment she didn’t have any significant tools to disseminate what just transpired so there we sat, part joy, but mostly uncertainty.  After a bit of time I asked her why she was so concerned.  She began asking questions like…How do we tell our friends?  Is he going to live with us forever?  I don’t know anything about Down syndrome.    We quickly determined that our partnership was unified and our love toward our new boy unconditional.

I asked her recently to reflect back to the beginning and give me some insights into her thoughts.  Now guys don’t take this personally, but motherhood is much more difficult than fatherhood.  The social burden is on the mother.  The scars are worn on the inside by mothers and the tears come in spurts throughout the child’s development.  Men typically move on and don’t fret about what someone thinks about their special needs kid, or they just move out of the child’s life for good.

She said the first week was extremely traumatic for a gauntlet of reasons.  Sleep deprived and endless doctor visits, lactation nurses, meeting with social workers, and every other type of professional.    She became aware early after Brandon’s birth about all the potential challenges, most health related.

One troubling thought that she echoed time and again was “will he live with us for his entire life?”. My words were not enough to help her because mother’s by nature can’t allow themselves to become comfortable.  Their plight is perpetual worry and anxiety about could be, should be, and will be, scenarios.  As a dad, I am not consumed by these prospects.

A great deal of time has come and gone since Brandon’s birth and those long lost thoughts were not out of pity, but a feeling of sorrow for Brandon because the answers to life’s questions were yet to be known.   The tears of any mother are not out of selfishness but rather, out of anxiety and fear that their child fit into society and have friends.  Teresa’s concerns were genuine and heartfelt.  As we watch a bouncy young boy, we both embrace all that he is and what he will become.  I do my part by being the best dad and husband.  I carry my share of fears…what will happen to them if something happens to me?  The rock is never as strong as it appears when it comes to human imperfection…rocks do crumble.

I recognize that the burden of so many unanswered questions along with life’s simple skills which are not so easily attained by our children keep my wife up at night.  It is clear that motherhood is one step below deity.  For all she is and ever will become Brandon and I are grateful.  I’m a father who loves his son…my wife is a mom who cares for him, a distinctly tougher job.

Silicon Valley Down Syndrome Network

 SVDSN is a program of Valley Medical Center Foundation who is a 501(c)3 non-profit organization

 2400 Clove Drive, San Jose CA 95128

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