Struggles

I’ve started and stopped 3 different blogs these past few weeks.  Either something came up and I was unable to finish, only to loose my thought, or I decided to delete it.  I haven’t been able to focus long enough to write out my true thoughts.

The other day Jana was in nursery at our church.  We hardly ever put her in there cause honestly I’m always scared shes going to catch a cold!  But we went ahead because there wasn’t many kids.  She was pretty happy being able to be independent in there now that she can crawl basically anywhere.  When I went to pick her up there was another little girl, probably just a year old if that, playing alongside Jana.  She was standing, Jana was sitting.  The grandmother of this girl asked me how old Jana was, when I told her she was 18 months she had this look of realization on her face.  Now, don’t get the wrong idea, I do not believe she had any malice or degrading thoughts about Jana, but truthfully I felt Jana being judged.

Yes, she is 19 months old (today) and she cannot stand on her own without me helping her up.  And even then, she is glued to whatever she is holding.  Yes, she is delayed.  I’ve gotten these looks before.  When someone doesn’t understand Down Syndrome and questions why she isn’t farther along.  I instantly want to defend her.  My instincts are to explain that is not her fault.  To tell them how hard she works to try to stand.  How many hours of therapy we’ve had to get to this.  I want to become the protective Mama Bear.  But 98% of the time I stay quiet.  I don’t want Jana to get used to me always telling people she has Down Syndrome.  I don’t want that to be the only thing people know about her.   jana-1-4

So what is the right response?  Do I try to lecture these people on what DS is and help them see that Jana is much more than just a special needs child?  Do I let then walk away without helping them see a glimmer at how amazing DS can be?  I know this is just the start.  As she gets older, the looks will come more and more.  Right now her big baby brown eyes captivate you and its easy to ignore everything else!  It’s so easy to instantly fall in love with her!

Ok…no more negativity!  Jana has been making progress in her walking!!  Our therapist weren’t even ready to start working on walking yet, but Jana thought otherwise.  She can now take at least 3 steps while holding on to a walker.  This is huge!!  It doesn’t seem like a big deal, but honestly just the fact that she is moving her legs and not locking them out is a big step.  She seems determined to get this walking thing down and I am having so much fun helping her get there!

Here’s a video of one her her last therapies!!

So here we are, almost at Christmas and I am excited because I think this year she will enjoy present opening!!  I’m sure Santa has spoiled her 🙂  I pray you all have a wonderful Christmas spent with family and love!!

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3 thoughts on “Struggles

  1. You smile to yourself because you know how blessed you both are.

    One thing that I have realised is that we can spend our lives defending everything that we do or have because others are ignorant or judgemental. They don’t mean to be but it comes through sometimes and it can hurt if you let it.

    I hope you had a wonderful Christmas 🙂

    Like

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