THE NOW

 

For those just tuning in, Sloane, our beautiful daughter, has classic severe non-verbal autism.  I have stated this before in my past blogs, but we live in Sloane’s present, in her and our “now”.  Mentally this is a survival skill for us.  To go too far into her future is scary.  Especially when the “now” has been a little difficult lately.  We have to live in her 8 year old “now”, not a typical 8 year old’s “now”.  That can be even harder sometimes.   

Sloane’s summer has not been filled with playdates, sleep overs and pedicures.  And the place where I cannot let my mind and heart go is that it is possible she will never have those pre-teen/adolescent rites of passage.  In her “now”, those things may never happen.  But I don’t let myself focus on those things.  The random glimpses of these things that pop into my head, that I quickly shew away are too painful to let myself linger on.  I cannot control the glimpses, but I can control how much I focus on them.   

Her last day of school this past year, I was pulling past the playground to go pick her up.  The playground was filled with kiddos in her age group.  At the same school she attends, on the same playground she plays on, there are kids she will probably never be BFF’s with.  Little girls were standing in the corner of the playground laughing and playing, and for a split second my mind went outside of our “now”.  My mind, without hesitation, placed her in the middle of those little girls; planning their summer, deciding whose house they get to have a sleepover at first, going to the Community Center pool…. “STOP SHELLEY,” I said to myself out loud, and I quickly brought myself and my mind back to its safe place and went on with OUR day!  I could daydream about those things for her all day, but that does not do her, or myself, any good.   

And her summer has been kind of yucky.  The battles that she is fighting right now are not easy to navigate or to problem solve.  From hormones, to communication, to bowel issues, her list of pain and frustration seems to be at a high. Her “now” is hard at the moment.  And as a parent, I want to fix it.  And I want to fix it without having to put her through any more pain.  But her lack of knowing cause and effect make these trials hard to execute.  I want to have a conversation with her as to why she has to take this medication, or have this procedure and although it might cause pain at first, it will help later.  And I do explain this, although this is something I do not think she always understands.  She just remembers the “uncomfortableness” of it all.  And then her being unable to verbally tell us her feelings — well that is just heartbreaking to me.  But we have to push through these parts of her “now”, do what we can to “fix” these parts and try to find the happy in her “now”.   

As hard as it may be for some to see, Sloane has a lot of happy moments, too! Her “now” is full of them.  You put Sloane in a pool, even if it is a blow up pool in the back yard, and she is a care free little girl! Give her a tub of stuffed animals to lay in and throw around or a new music toy to put to her ear and her smile can light up a room.  Her joys are simple but that smile of hers can make the most complex worries and those stupid glimpses of mine fade away into the void of unknown.  That smile of hers can ease a worried heart! 

For all moms, but especially special needs moms, a worried heart is not hard to come by. And these moments and lapses of keeping my guard up to block the glimpses of what could have been, can take a toll. So many special needs parents know this. And what each of us have to do to bring ourselves back to our “now” to keep our sanity in check, is different but so necessary.

Regardless of all this, I have hope that, God willing, one day Sloane will experience some of those glimpses that just live in the far corner of my head locked tight. While we might not let our minds dwell too much on them, don’t be mistaken, we absolutely hold on to the hope for them! We set her goals for health and knowledge to be small and obtainable.  Baby steps, as many autism families know, is the way to go.  We find the happiness in our “now”.  We make her “now” as joyful as we can.  We focus on how our little party of 4 is blessed in SO MANY ways.  Even if our focus some days has to be a little forced, there’s no denying our blessings.  Our strategy?  No comparing, no focusing on glimpses, just our blessings, our “just fine” moments, our happy place…our “NOW”! 
Lots of Love,

Shelley 

Advertisements

7 Comments

  1. This is so, so good. What a marvelous reminder that no one can sustain living in the future. The Bible teaches that we are to live in today, in the “now” just as you’ve described. There’s no wonder why God gave you to Sloane to be her momma. What a tremendous job you’re doing! Excellent post. Excellent example for all of us.

    Liked by 1 person

  2. You are a great mother! Never doubt yourself. After reading your post I realize I need to pray more for you znd your family. Not just when I think about it off and on but petition our Heavenly Father and beg for you snd your family to have needed answers. I shall endeavor to be more of an advocate for you at the Heavenly Throne Love to you and I am here if you need me!!

    Liked by 1 person

  3. You have the same beautiful Spirit as your Mom. Your writings are so touching and I appreciate them.
    My Grand daughter is 2 years 3 1/2 months and I am feeling something is delayed. She is at delayed speech problem and seeing a speech therapist.
    However, as her Mimi, I have heart aches at some things I see.
    I will journey with you as more will be revealed about my Grand daughter.
    Thank you for sharing your heart with those who need your beat on this.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s