Joy in the midst of grief

I have a digital photo frame that has photos from the last ten years.  While watching the photos fade from one to the other I began to realize that there are so many things that Madi will never do.  Things such as riding a bike without training wheels for the first time, roller skating with her sisters, and climbing around on a playground.  Simple things, that we all too often take for granted.  Oh, I know the big things she may never do and I accept those, but I forget about the little things.  Sometimes, I only recognize those things as we begin to approach the age when she would typically be able to do them.  It is a little stinger, a reminder of the things I had looked forward to doing with her when I was pregnant.  Those little fantasies that played out in my head of what life will be like once the baby arrives and our family was complete.  All those little moments I wanted to share with Madi.  Then reality sets in and you have to adjust those ideas and plans, and that isn't always easy.  Sadly, as time passes I realize that I didn't even begin to comprehend how this condition would impact our daughter or our lives.  As time passes, and we reach new milestones, new realities set in. 

Madi turned 2 in October and we began the process of ordering a walker/gait trainer.  This has hit me really hard for some reason.  I found myself crying at the THOUGHT of bringing one into our home.  You would think that all those tears you shed when your child was first diagnosed would have been enough. ( I even caught my husband off guard with my crying one morning. Poor guy.)  I don't fully understand why I am so emotional about this, because we have had one on loan for 6 or 7 months now.  Maybe it was the fact that we only had that one temporarily and I knew we would give it back, or the hope that she wouldn't really need one of her own.  I don't know.  I just didn't realize how much this next step would affect me.  The next walker is OURS, the permanence of it, and the fact that we will have to learn how to operate it, and haul it around, is scary.

The reality that she is "different" will be apparent. People will be able to look at her and realize she is different.  They may even ask questions or comment about her.  I am not ready for the stares, pointing, and whispering that will go along with having the walker out in public. I know some people are curious and they don't mean to do these things.  They probably aren't even aware of what they are doing. Then there are the others. The ones who do those things just to be mean, and the ones who may even make fun of her. It hurts to realize that I can't shield her from these things.

This is where the joy creeps in and begins to take over. You probably think I am crazy.  Joy?  Joy?  Yes, JOY.  It's a joy born of thankfulness.  I am so thankful that she is mentally and physically able to learn how to use this walker. Not every child like her has this ability. I am thankful for her sweet smile, her giggles, for the times when she says, "ug", and then leans in and wraps her arms around me.  I am thankful for the feel of her warm body next to mine as we cuddle on the couch. I love the way her eyes light up when she sees me. All these things and more make me so thankful for her and the love she brings to our lives and our family.  If that means adapting our life to her needs, then so be it.
 

So we'll deal with this next step like we have all the others.  Lots of prayer, love, and support. And even though my heart hurts for this child of mine, we'll do it with a smile on our faces.  We smile because we know how truly blessed we are, because we are so grateful for all that she is able to do, and we smile because God has surpassed all our hopes and expectations.  He continues to do so on a daily basis.  The joy, no matter how small or overwhelmed by my momentary sorrow, can't be contained and will only continue to grow.

 

 

 

Life without this little girl is unimaginable.