Thursday, December 19, 2013

joy and pain...

The holidays are such a difficult time for so many people for so many reasons.  I have a post that is almost done about how to thrive during this holiday time despite the pain and difficult circumstances you may find yourself in.  But that is not this post. 

This post about how in the space of two days I went from great JOY to despair.  All thanks to our special little gift called Grace.

Yesterday was the Christmas program at Grace's school.  On this day, all the classes and their guests go to the school gym so each class and even some individuals can perform holidays songs.  Typically, I love this kind of stuff.  I totally thrive on celebrating the Christmas holiday and watching children perform chokes me up with thankfulness.

This Christmas program, not.so.much.  Grace goes to a wonderful, amazing school for kids with special needs.  Our family is so, so thankful that this school exists and is staffed by angels disguised as teachers and aides.  However, my emotions take a beating every time I go to her school.  Every time.  It is filled with special needs children and it just breaks my heart.  I find it hard to enjoy the Christmas program knowing that some of the kids don't even know what they are doing and celebrating.  I find it hard that my daughter goes to this school.  I find it hard to find my joy.

I knew that yesterday was not going to be the exception but rather the rule.  Last year Grace practiced with her class and even participated in performing to her ability.  But on the day of the program was too scared to enter the gym.  The gym was completely full of people and noise and lights and noise and people and sister just couldn't do it.  So.  Grace and I walked the halls during the Christmas program.

I talked with her teacher about Grace's reluctance (read abject FEAR) about full auditoriums and warned her that even though Grace practiced well, she may not go into the gym.  I told her I would attend again this year and spend the time in the hall with Grace if she needed space.




Well, she made it into the gym.  For a minute.  Then once the performances started she fled.  So once again, we spent the Christmas program in the hall.  Since we were in the hall for the whole show, we got to see a lot of people that said 'Hi, Grace'.  Which was really nice.  It's nice to know that my daughter is known and liked at her school.  But the whole time, I was fighting back the tears.  Trying to choke down the emotion that threatened to choke me and pretend that I was okay with the fact that my daughter couldn't go into a Christmas program that I didn't even want to see to begin with.

On a happier note, she got to see her teacher from last year.  Whom we love!


I left the school after a super nice luncheon for parents in Grace's class and called Mark.  I told him I didn't think I could go again next year.  It was too much.  I fought back tears for the rest of the day and just held Grace in my arms last night thanking God for her.  Several friends have offered to go to lunch with me next year instead of the Christmas program and I think that sounds better...

Now onto the joy.  One of the hardest things for me to face in having a total care special needs child, is that Grace doesn't talk.  I just really want to hear her voice.  Will it be high and melodious like some little girls or deeper with a rasp.  It may seem strange to you, but I think of it often and wonder what will it sound like when she talks.

Even though Grace is completely non-verbal she is a very loud child.  In fact, she is the loudest person in our whole family.  Instead of words, she screams.  A LOT. 

The other night, she was on the floor playing with a stuffed puppy and kissing it.  I got out my phone to take a video of her kissing the puppy and instead, got a video of her saying puppy.  Very clearly. 


As you can see in the video, she clearly said puppy.   I just sat there in shock.  Luke was home too and so excited that she said actual words.  It may not be much but it's a start.  I was sorry to tell the boys that no this does not mean that she is getting an actual puppy for Christmas but it does mean that we will be actively pursuing a home companion dog for Grace.  Truth be told, the application is done and my friend even wrote the essay for me on why Grace would benefit from a dog, I just need to send it in.  Mark is taking this as a sign that a dog will help her talk, so we are going to go for it and get Grace a dog.

Both of these experiences, just hours apart, sum up my life with a special needs child like Grace.  Thankfully, the lows aren't usually that low and the highs hold just enough magic to sustain me through the dark days.  As always, I thank God that he looked at me and found me a suitable choice to be Grace's mom.  She is a blessing and truly is the most amazing gift!

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2 comments:

Melissa said...

Oh my goodness Anne, this is so great!! You are one special Mom!! Grace is going to achieve wonderful things in her life because of you and Mark!

lori said...

I really enjoyed reading this. More specifically I loved that you shared your life, loves, and heart with whom ever may need to hear it. Thanks for blessing me tonight.