Hopes

Happy New Year!  Every year it is a relief to see January 1.  We all feel it.  It is a fresh start, a new beginning.  We wait for this time to try new things, set new goals or imagine great achievements yet to come.  We try so hard for a few days, weeks or even sometimes months to just fall back to the old things that work or are comfortable. 

My beautiful son will be turning 5 soon.  He is a gift.  I am thankful every day for him.  I am thankful for his smile and laughter and hugs.  I am thankful for how fast he moves and thinks.  I am even thankful for the strange and wonderful world of sensory processing.  It is a look at life and everything in it, with new eyes, sometimes through crazy glasses.  I am thankful for the challenges that go beyond being a parent.  Our lives are strangely different then so many others. 

There are not enough words in the dictionary to describe the internal conflict that sometimes comes along with having a son like mine.  Confusion and regret are often so strong you can feel them in the room like old friends.  Longing for a regular life, full of normal family activities for Espen and for us all.  Wishing we didn't have an escape plan every time we went some where or a change of underpants in my bag (and lately, an entire outfit, even shoes).  Sad that our lives are imperfectly perfect.  It is hard to make friends, hard to keep friends and hard for people to understand.   The pain of telling people "I'm sorry we can't be there, do that, go".  I regret all the times I thought I could do something and then couldn't at the last minute. 

 

We get to the point of just closing ourselves off because we can control our surroundings better and make things less stressful.  It is easier to not explain or apologize. So as the year started I had hoped, like everyone, for a fresh start on expanding our comfort zones to include friends and a support system so that we could face new challenges.  And just 4 days into it, I am drawn into the most comfortable behavior, when the freak out happens, mommy makes it better.  We do things we know we can handle, go places we know we will succeed, stay home when the stress gets intolerable.  And I make apologies when we miss things. 

The hardest part is the feeling of isolation.  The feeling that we do this on an island and it is so hard for people to understand.  Loved ones may have an idea but not the whole picture of our lives.  We don't ask for help.  We are not just a normal family.  We have some special needs.  We don't need to be told we are just normal and that we are putting to much pressure on ourselves.  We are trying.  Every day we try something.  Imagine the pain and discomfort from being over stimulated and that leads to fear and panic, which can lead to tears or running or other "non acceptable" behaviors.  As parents we have to handle that in every situation.  And it is not getting any easier. 

 

It is hard to manage on an island.  I hope people don't give up on us.  We need the support even if we seem like we don't.  We need the attempts of friendships even if we are hard to understand.  We need an occasional person to listen to our concerns and fears without passing judgment.  We need people to see past the messy hair, dirty clothes and wild running behaviors to our hearts that are full of love and hope and honesty.  We need patience. 

 

We will make it through this year.  We always do... it may not be what I imagined it to be three days ago, but it will be as it should be and we will be happy.  And maybe, just maybe, we will make some new friends and try some fantastic activities and go to wonderful places!