Dreams Change, but that’s OK!

When you stay in the NICU for a week, you have a lot of time to think.  Not much happens.  You don’t have a permanent place to be other than at your child’s bedside.  You watch him sleep, you change a diaper, you nurse him, you watch the monitors beep away.  Day … after day … after day.  You don’t want to leave him to do anything else and you really don’t enjoy it when you do try to go out and do something fun. 

{For the record we did get out to go shopping a bit for things we left behind and I did get one really fat piece of cheesecake at the Cheesecake Factory a few days after my birthday – it was wonderful!}

So you think.

I think all of that thinking time really helped us to get through the shock of what was happening rather quickly. It’s just part of who we are. To us, there is no sense in dwelling on the things you can’t change. It’s not helping anyone. Dwelling only makes you sad and you just have to pick yourself up and move forward and figure out  a new plan.  Enjoy these newborn days before they are all gone.  When else would I ever have the opportunity to sit in a rocking chair with my snuggly little man for hours and hours on end without any other responsibility?

One thing that I’ve read over and over on all of the Down syndrome information is that you do need to grieve. It’s OK.  It’s more than OK. You do have a loss. You have lost the child that was in your dreams. The one who is (against all genetic odds) going to be captain of the football team, top of his class at Harvard, and a musical genius, all while getting both a law degree and an MD. I know it’s irrational, but you dream that your child will have the world.

It takes time and a lot of thinking.  When you first hear the news you are looking at this child wondering who he is.  He isn’t the child you thought you’d have!  He doesn’t look like you expected, he doesn’t act like you expected, and he certainly doesn’t have the future you clearly had dictated for him, but maybe that’s a good thing.  Let God shake it up a little.  Think outside the box of what’s “normal”. 

It was hard to look at Logan in those first few days and not burst into tears.  He was so cute, and so innocent and it all seemed so unfair.  This little child did nothing but snuggle, but was in for a much tougher life than we expected.  Maybe that’s the best way to describe the biggest emotion you go through.  It’s just not fair.  He didn’t deserve to have challenges before he even had a chance to live.

But then something changes.  Then you are nursing him one day and he opens those big blue eyes and locks them with yours.  He looks up with this innocent look that says “Mom, I’m OK!  I’m right where I need to be!” He doesn’t know that he’s different!  He’s Logan.  Just Logan.  It’s the rest of us that are prepared to treat him like he’s anything other than typical.  He’ll have dreams.  He will want to play sports.  He’ll chase the dog around just as much as Jake does (poor Luke – the dog has no idea he is such a great source of entertainment!). 

He was the one that told me things were going to be OK.  All we needed to do was love him. 

So it’s OK to change your dreams.  If everyone had the same dreams, where would the diversity in life be? 

{I know this is a picture of Jake, but it’s just too cute not to share!}