Luck, hope, and knowing

Recently I wrote a paper about adjusting to disabilities in parenthood.  It was eye opening.  To be able to recognize and understand personally the struggles that the parents in the studies were going through made it truly meaningful.  There was even a couple that had Bridger's disease in it!  Which made me realize how lucky we are.  There are hundreds of babies with infantile spasms who never recover.  Their seizures never allow them to walk, sit, eat, talk, play, or even hold their own head up.  Thousands of babies have multiple medications being jammed down their throats that do little to nothing for them.  Many parents are constantly having their hearts broken.  Infantile Spasms is a disease with almost no hope it seems.

I do not know how we got so lucky.

Are we actually that lucky?

Bridger continues to amaze me each day.  He laughs, he eats, he babbles, he even crawls!  In his darker days I never thought I'd see him like this.  I had no hope.  Only the drive to survive.  I'm not alone in this.  In the research I did the will to survive seemed to be the only thing that kept many parents going.  Not the hope that their child may get married, or walk, or even go to college.  Survival through another day was all that mattered.  Eventually as parents simplify their expectations for their child hope begins to glimmer.  But only then.  I remember a point when I welcomed Bridger's seizures.  About 30 seconds before he had one he would snap out of the fog he was always in and he would smile at me.  It was like HE was trying to comfort me each time!  Those smiles are what I survived for.  All I wanted was one smile.  How amazing that day was when I got two, then three...and then smiles every day.

I have hope.  Bridger has a 24 EEG next week and I have hope that he will come back clean.  I have hope that we can take him off his medications and I have hope that we will never see those horrible seizures ever again.

Aside from hoping I know that my son will walk someday.  I know that one day he will understand his name.  I know that one day he will be able to say mama and dada.  I know that he will look us in the eyes one day and say "I love you."  So many parents of children with IS cannot say this.  Not in this life at least.

I do not know how we got so lucky.  There are many good parents who suffer much more than we did and I do not understand why.  Why does it have to be so hard?  Perhaps it will be harder for us again.  I deeply hope that it is not.  It is hard for us in other ways.  I'd take the struggles we have now over the seizures any day though.  May we all remember those parents who are are not so lucky and keep them in our thoughts and prayers.  Trust me.  They all need it.