Milestones

I have tried to think through and write this post several times.  It has been more difficult to put this one into words than I thought it would be. 

I started this post a year ago and have never been ever to really return to it. Within this past year I read a blog by another special needs parent where she included a phrase that has been circling around in my brain. 

You have to grieve for the child that was. That doesn't mean you love the child that is any less. 

The milestones are the hardest.  When I first started this blog, Liberty had just turned 16. We should have been planning for her getting her drivers license and making plans for her to finally be allowed to go on dates. Instead, instead over the past year, we have had to modify our bathroom so we can safely get her in and out safely. We have had to give up the princess bed for a pediatric medical bed. We have modified pill schedules. We have learned how to feed our child through a nasal feeding tube. 

Throughout these adventures, the milestones are the hardest. Those are the times when we are reminded what the other "normal" families are getting to do that we will not be able to. My child will not be getting her drivers license or even driving me crazy by having sleepovers with lots of friends. I won't have to worry about what she is or isn't doing on a date--or any of the other things that people plan for. 

I grieve for the child that was. I grieve for the aspiring archaeologist, the contemplative thinker, the tree-hugging nature lover...but I love the child that is...the sweet soul that feels for others, the speaker of truth, the child that feels in the moment. She has my heart. She always has. 

The Christmas Spirit

Is Christmas about the day or about the spirit and meaning behind it?

I pondered this thought numerous times over the past month.  Because my niece and nephew could not be with us on Christmas day, we all decided as a family to celebrate Christmas a week later.  Christmas with my family is an amazing tradition.  My oldest daughter, sister, and her kids all show up at my mother's house semi-early on the day of Christmas Eve day.  We then begin a long process of cooking many different types of finger foods for the Christmas Eve celebration that evening in which the rest of our family and numerous friends descend.  We spend the day wearing ourselves out, but I would not trade the memories that we make honoring this tradition.  After the festivities are over, we all settle down to spend the night at mom's house so that we can open gifts Christmas morning.  There are now so many of us that there is not much space to maneuver around the air bed obstacle course.  The next morning we all unwrap gifts.  Ever since I was a little child, my parents started the tradition of each person opening one gift at a time.  We start with either the youngest or the oldest and go from there.  I love this tradition.  It allows each person the time to open his or her gift and the rest of us get to see what the other person is getting.  Needless to say, it takes us several hours to open gifts and admire what each person is getting.  There are lots of other little traditions that we have created over the years--pictures by the tree, singing, laughter, sometimes karaoke, and joy.  It truly has become a time to spend time laughing and loving each other and the bonds of friendship and love.  

It was different this Christmas not celebrating these traditions on Christmas day.  We all commented how different it felt to not be together on the day itself.  I wondered if it would make the day we chose to celebrate feel different as well.  Would we lose the spirit that embraced us by not celebrating on the appropriate calendar day?

However as we began our yearly tradition of cooking and spending time together, I soon realized that it was all senseless worrying.  It did not matter that we celebrated our Christmas later.  We could celebrate it in July and it would have been the same.  The spirit of the day surrounded us.  I realized that Christmas was about the love that fills our hearts and keeps us bonded together.  This could be a powerful lesson to remember throughout the year.  We do not have to wait for an entire year to feel this love.  As I looked around the room, I realized that each person there is such an important person in my life and they have all filled my life with so much joy.  Why should I wait for one day a year to remember that?  Wouldn't that really be tremendous loss?  There are 364 other days of the year that I can honor and revel in the joy that surrounds me.  I discovered that Christmas doesn't have to be about that one time a year that we all get together because the love that flows through us doesn't just come and go on that day.  It truly is endless and without limits.  It is the strength that supports me every day.  

As weird as it felt on Christmas day to not be with my family.  I am grateful for this lesson and humbled by its intensity.