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Family, family life, foster care, happy life, parenting, Uncategorized, when kids won't sleep

Another Year in the Rear View Mirror

This is the life we build. It is complicated, but what a ride!
This is the life we build. It is complicated, but what a ride!

I have definitely enjoyed parts of this Christmas even as others have proved difficult.  It has been a Christmas where my mom was able to take J, A, and O to the Nutcracker just like she used to take me every year.  Hearing how much my kids loved the performance is a reminder how much we share and how much we are raising them to be like us (heaven help them).  My family and I have benefited greatly from the generosity of others this Christmas,  and we have been able to celebrate the season as I wish we always could.  We went to the zoo lights at the National Zoo which we all enjoyed, but the Christmas lights show which we enjoyed the most was closer to home: https://www.facebook.com/LightsOnIceCrystal

Every year around New Years, I try to look back on the past year to better appreciate all I’ve done, seen and learned.  In January, we took a family trip to FDR resort in Jamaica which was the most enjoyable family trip I remember.  I hope we can go back again but with K this time.

It’s been a year where A and O learned to ride bikes and read for fun.  In fact, it’s been a year where we have all learned a lot.  For me, I learned how little “privacy” we have (http://thelifewelllived.net/2013/06/10/nana-your-business-my-perception-of-american-privacy/)

My highlights for the year include deciding we will try to adopt K and on a slightly lesser scope, attending a conference at the National Academy of Medicine where I learned about healthcare systems from all over the world. On a personal goals front, I went from being unable to do a single pull-up without help in September to being able to do 5 by my birthday and 7 by the end of the year.

Still, even with all of the great moments and accomplishments of the year, it’s not been a smooth ride.  I sleep less and hurt more.  I make more mistakes and often find myself starting the day saying, “OK, so what have you got in the tank for today?”  A lot of this is the result of strained family dynamics due to medication changes.  With the change to our 6th psychiatrist in 5 years for O and A comes a change in treatment philosophies.  The last doctor thought lack of sleep was the most important symptom to be treated, but the new doctor worries about the interaction of drugs taken for the past 6 months.  Changing everything at Christmas time when sleep is fleeting for excited children has just been painful.  We are all tired, and it feels like starting over with repressions in manners and self control at their lowest points in years.

Despite this, our kids have had some epic fun building roller coasters an Pac-Man adventures, reading and playing games.  I guess there is an advantage to less sleep.  Our imaginations can run wild.

 

Beware the ghosts!
Beware the ghosts!

 

 

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inspiration, kids' perspective, life cycle, life with MS, Multiple Sclerosis, perspective, Thanksgiving, Uncategorized

“Why Is the Day So Short? I Want More Time to Play”

20131201_075645“Why is the Day so short? I want more time to play” – O

From the mouths of babes…I told my son these things never change.  I still want more time to play, to bring the ideas in my head out into the sun, to relax, and  to play (yes, I wrote “play” twice because it is that important).  The day this stops is the day I stop living.

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Every Thanksgiving weekend, my high school has a memorial service before an Alumni Basketball game.  Years ago, there was also an alumni soccer game the same day, and I used to make sure I attended the soccer game to play.  While I played both sports, soccer has always been the sport I love.  One year, I stayed to play the basketball game too and attended the service in between the two games. Every year since, I have tried to attend the service if I could.

In the service, every name of all the alumni, all the monks, and all of the teachers who have died are read to receive our prayers.  To hear all of those who have died through the years is to know a community I belong to will know my name after I am gone.  While I am not religious, there seems something very appropriately comforting in belonging to what will last beyond my breaths.  It’s a family.  Maybe that is why this year I noticed for the first time my favorite high school English teacher has his name read twice.  He was both teacher and alumni.  He was also one of the teachers who made me want to write, though it took 15 years for his lessons to sink into my skull and bring me to a point of writing. Thank you Mr. Barret.  I still remember telling him I would never want to write non-fiction, as it is too boring.  He insisted the line between truth and fiction is often merely a matter of perspective.

My conversations with him began a fascination which has lasted my entire life, perspective.

Thank you.

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Since I was diagnosed with MS years ago, I have been asked many times, if I resented all of my dreams and enjoyment I have had to give up due to my multiple sclerosis.  I usually ask them how many things they want to do with their life.  I suspect most of us have a huge list, and many of them we plan to accomplish at some future unknown, unplanned date.

On this Thanksgiving, I am thankful for the realization on every good day I need to do as many of the things I want to do.  Tomorrow, I may not be as capable.  Having a progressive disease makes me see the time I have left as limited, a perspective I wish other healthy people appreciated.

We never have enough time to play.

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