Sometimes, we as parents are continually focused on how we can improve upon our parenting skills.  Believe it or not, we are probably doing as good a job as anyone else – but, our expectations of ourselves is set astronomically higher than necessary…….

See…when you have a special needs child – which by definition is a legal term that references anyone (child or otherwise) that requires additional measures to care for that child…mentally or physically – it is a constant reminder to the parent that we must do our “best” if we want our child to succeed.

Thus, we strive to put our best foot forward and set expectations upon ourselves to ensure that our child (or children in some cases) is  getting the best education, the best physician, the best medical plan, the best therapies, the best environment and of course, the best love we can possibly give.   Are you tired yet?

What we as parents sometimes fail to remember (yes fail) – is the ability to give ourselves the “best” of everything as well.  I truly don’t believe that God intended us to suffer for our children.  I believe God gave us great gifts because He knew we would be able to endure the demands of our own expectations – but, also because we are the best.

LOL – no – we don’t have big heads.  We are not better than others.  But, I try to remember to tell parents – that we are the best at making decisions for our children, the best at finding solutions for our children, and the best at ensuring “the best” for our children – God knows – and we need to remind ourselves.

I entitled this blog Loss – because I’ve come across so many parents in the beginning of stages of their children’s diagnoses who tell me that they feel not just overwhelmed by the magnitude of care their children require – but, that in some cases, their children are “just fine”.  Yes.  They believe that they will grow out of their diagnosis.  They believe that some of the symptoms their children exhibit are “questionable”, or “temporary”, or “not well understood – so, he/she must be okay”. 

Denial.  It’s real.  Loss.  It’s real.  What we are (have) suffered really is LOSS.  When we are faced with a diagnosis – we seek to understand everything about our journey.  Our hopes and dreams for the future are shattered – so, we become focused on what our child “doesn’t have” so that we are better able to handle the situation.  All natural reactions.  ‘My child doesn’t cough all the time – he probably doesn’t have reflux like some of the other children.’   And my answer always is….”no – maybe not”.  But, if the child has a “symptom” – you will do the child and yourself more good – if you confirm the symptom as a definite sign of the characteristic of that particular disease is either there or “not” – then, rather if you make yourself beleive it doesn’t even exist.

More importantly, I try to remind the parents that what they are truly experiencing through all of these denial-like episodes and later the need to be perfectionists to their expectations – is the feeling of “LOSS”. 

When we have a child born into our families – single, divorced, female, male – or whichever….our children are supposed to be “normal”.  They aren’t supposed to be too tiny and unable to eat.  They aren’t supposed to have malformations.  They aren’t supposed to be blind, deaf, or with deformity (not related to RSS).  They are supposed to have ten fingers and toes, beautiful, sweet smiles, hungry appetites, and normal sized bodies!  So, when our child is different – we are not only surprised – but disappointed, confused and somewhat frightened. 

We’ve LOST what we believed was our right to a beautiful, healthy child.  And let’s be realistic – Loss is referring to someone that has been denied or taken from us.  We HAVE been denied a normal child.  We have exprienced a LOSS.  Then, we go through the grief processes…shock, denial, bargaining, guilt, anger, depression, and hope…….

Shock.  What?  My child has what?  Denial. Are you sure?  But, he doesn’t have all the symptoms….  Bargaining.  Well, if we do this treatment – he will grow out of it – right?  Guilt.  I must have eaten the wrong things while I was pregnant – or – it was definitely that ONE glass of wine.  Anger.  I can’t believe that Doctor thinks he has Russell-Silver Syndrome.  Why doesn’t she give me the information?  Why can’t you help me?  Depression.  Crying – that’s all I remember.  Hope.  Maybe this is a blessing. 

Acceptance.  I’m finally here.  It took 4 years – what a process.  I’m no longer a perfectionist.  I’m no longer searching for my LOSS and I’m finally content.

Now, I’m faced with helping my child through his LOSS.  I pray I do as well with him as I did for me.

Russell-Silver Syndrome

Copyright 2010 – Heather J. Earley