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It's 2am in the morning and I can't sleep.  My stomach is turning.  I get really bothered around the holidays.  It's a REALLY hard time for me.  For most kids Cole's age, it's full of fun, excitement and Santa.  For Cole, it's just another day of frustration, not being able to talk or communicate, he has no interest in toys (except for a few "infant" toys, but it took a really long time for him to even "like" them), he doesn't get to have a "concept of Santa".  I wish he could be excited Christmas morning and run into the family room to see what Santa brought him.  It might seem superficial.  But it REALLY hurts.   Seriously, it's 2 am in the morning and I am crying about my 3 year old not understanding Christmas...and then I start wondering what's wrong with me. I don't like waking up Christmas morning...who doesn't like waking up Christmas morning?!?  I wish I could go on vacation to a warm, sunny place this time of year so I could just skip it all...however, that isn't an option since I work in retail and it's the busiest time of year.  But, I do have to say how thankful I am, and that I *DID* get the best gift I could POSSIBLY ask for...Cole not seizing.  Many parents are still fighting the "fight" year after year for their child.  I know some parents haven't been as lucky as we have in that area...and I am humbled by that.  Last Christmas that is what I wanted...and yes, I remember that...I distinctly remember last Christmas, saying a prayer...bawling my eyes out, PLEADING with the Lord to let me help Cole and for him to become seizure-free.  It's been an amazing & incredible year.  I feel really selfish for the way I feel about "Christmas", because how many people get to say that they "witnessed a miracle in their own child".   I think it might always hurt every Christmas morning (& the weeks leading up to Christmas) because my mortal mind wants me to "want" Cole to have everything and to succeed in life...and it definitely "puts me in my place".  But, I just have to remember that his "succeeding in life" will be different then his peers...and that's ok.  I think it might be part of the grieving process...some people think once you've gotten through that part, your good to go. But I am ALWAYS going to want the best for Cole and I will ALWAYS want him to overcome the things that are hard for him to do...and so, it's a lifetime of grieving at every stage, and A LOT of rejoicing of what he overcomes.


  1. I think that's a great outlook on life in general - progression, not competition, is the goal in our individual journey. Love it!

  2. Just remember...Along time ago Christmas was not about Santa. The wise men brought gifts to celebrate the birth of our King. I love that my kids are excited about Christmas and the presents, but at the same time I wish for it to be so much simpler, so that we can focus on the very truest meaning of Christmas. That this very special baby was born for us and all that this great man, our older brother did for us. And that through his atonement he will take away all the sorrows that we have in this life and make them right. What an amazing gift! He serves us daily.

    This year I want to help my children celebrate the magic of Christmas throughout the whole year. I made some cookies for Debra and she said she loved this time of year that everyone makes yummy thing and she gets to eat them. And then when we got home there was a plate of goodies on our porch waiting for us. Then I thought that we are going to keep the spirit of Christmas service alive all year. Just because Cole doesn't comprehend what is going on, but he can still feel of your love and comfort and help serve others by his sweet presence.

    Love you, Bev

  3. These feelings will come back from time to time (you don't just grieve once, which I'm sure you are aware of at this point, it is up and down, up and down but each time it is more up and less down until we reach a place where we are content)...but you would be amazed at how your perspective will change over time...whatever is good for Cole, will become good for you. And when he is ready for will be the sweetest moment in the world. My daughter who is recovered from having her "1st" Christmas this year at age 5. She finally understands, and is excited about Santa and toys...her twin brother who has the same type of epilepsy as your son, really has no interest in toys either...but he loves to be with us and he loves to play little social games...and so my goal at Christmas time has become to tailor things to their doesn't have to be the cookie cutter Christmas morning. It can be whatever you want it to be. If he loves to go on a walk, then go on a walk. If he loves to go to the playground, or ride in the car...whatever he likes to do, that is what your Christmas is. Being together, being happy. My kids have truly taught me the simple life. It CAN be soooo rewarding if we let go of our expectations of how it is supposed to be, and just let it be. (I'm not saying giving up hope for change in the future...but just to remember being present in the moment). Have a wonderful Holiday :)

  4. You might be interested in a book called "Son Rise" the book is about a boy with Autism...and how the parents created an environment to help him recover from it...but they used the same technique for all kinds of Special Needs kids including Epilepsy. I have to say, that their approach has really changed the way I am with my kids and they have responded very well to it.

  5. Thanks girls for all of your wonderful comments :) It means a lot to me!

  6. Oh man, this post hits a little too close to home for me. I know EXACTLY how you feel. This Christmas season has been hard. I almost dread going to parties and seeing healthy, active kids. It's SUPER HARD to give up hope and dreams of what life is "supposed" to be. I think Cole is succeeding! He is amazing! Have a Merry Christmas!