Acceptance

Pete and I met a beautiful little boy this weekend who just melted our hearts.  He exuded joy and happiness, love and laughter.  He made quite an impression on us in just the 10 short minutes or so that we talked with him.  He told us jokes (What's the hottest day of the week?  Fry-day!) and ended our conversation with a group hug.  We haven't stopped talking about sweet little MJ, who happens to have Down syndrome, since the other night.

Over the past several months, I have come to know many other moms who are part of this journey that is called Down syndrome.  I have yet to meet a single one who would claim they didn't go through a period of shock and sadness.  All of their children are older than Luke, so they have navigated further through this long and winding road than we have thus far.  All of their children have had their fair share of  illnesses, surgeries, and health issues.  What most all of them have said is exactly the way Pete and I have felt...that going through the grieving process is not about accepting the diagnosis of Down syndrome itself, but rather accepting all of the "stuff" that comes with it. 

The myriad of health issues that Luke has had since his birth has made it difficult for us to reach that final step of acceptance.  For us, it is about accepting the fact that these issues will likely be life-long for him, which means the worry never stops.  No doubt we all worry probably too much about our children, but that worry is magnified in an indescribable way when you know what medical challenges lie ahead for your child.  Each time Luke starts to bounce back from one diagnosis or another, we feel we've reached that end destination that is acceptance.

Luke has shown immense improvement in so many ways over the last week or so.  His irritability from the ACTH injections has leveled out, he is full of personality, and he rolls and rolls on the floor like you wouldn't believe!  He'll keep going and going until something gets in his way, sometimes that being Olivia, then he'll reverse and go the other way.  Unfortunately, given the last several months, we are cautiously excited and optimistic as it seems just when we've reached that acceptance, something else gets in the way and knocks us back a few steps.  What I'm finally realizing, however, is that it does Luke no favors to be constantly afraid of what might happen next.  We know the probability that the infantile spasms might return in another form at some point.  We know the opsoclonus myoclonus might resurface as we wean him off the ACTH, thus requiring more aggressive treatment.  We know his Hirschsprung's disease will likely be a life-long challenge.  We also know that Luke is a strong little fighter who constantly reminds us to "stop and smell the tulips" and not waste time worrying about what could happen.  That's what acceptance is all about. 

Now, in honor of MJ, a big cyber group hug!