Friday, February 5, 2016

One Week

A lot can happen in just one week.  For Sonzee, one week is the amount of time she spent in the NICU after she was born.  It is the length of her first hospital stay the first time she was admitted for what I was certain were seizures.  A week is the length of time that goes by when we add up and tally the events of her seizure log.  A week is the amount of time that is left before my baby is no longer considered "a baby" in terms of her age.  In just one week, I will put my baby to bed and she will wake up "a toddler".  I am so torn with my emotions.  

On the one hand, I am so excited to celebrate HER and her birthday.  I cannot wait to celebrate ALL that she has overcome in the previous year of her life.  I am looking forward to the new year ahead and all that is in store for her specific cognitive, emotional, and social development.  I am so overly excited that we have her here to celebrate this day with us.  These are the facts that I try to focus on, that I try to repeat in my mind as her first birthday continues to creep closer, because there is the other hand.

On the other hand, her birthday is a reminder of the milestones she has not yet accomplished.  It is an unfriendly reminder that the goals that we created for her are still not mastered.  My soon to be toddler is unable to sit unassisted, and truthfully, even assisted she has difficulty.  My almost one year old does not have any words to communicate her wants or needs.  My soon to be one year old cannot hold her head up while she is on her tummy for more than a couple of seconds and she cannot crawl.  When she wakes up on her birthday, she will still look like a tiny 6-month-old, but she will be ONE.

In many of the ways, the blank canvas of her year to come is no different from any other child's, but in many ways, it is.  I am fearful of the year that lies ahead.  I dread the awkward looks and uncomfortable situations that will follow after people ask me her age.  I am scared for the new medical experiences we are going to be facing.  I am nervous about her first surgery and if it will be her only one.  I am petrified for what is in store for her seizure activity and all of the other things I do not even know are to come.  

At the same time, I am anxious to see if the ketogenic diet and RSHO control her seizures enough for us to wean off her remaining pharmaceutical.  I am optimistic that this year will be amazing for her growth in all areas.  I am excited at the potential of meeting our baby girl who is trapped inside her body.  I am eager to see if this year will be the year we can check off some of her milestones.  


In one week, I will decorate our bedroom door, where Sonzee sleeps, as I do for all of my children on their birthdays.  I will place a sticker on her onesie that says "12 months" and take a picture of her in front of the chalkboard sign in our playroom.  In one week, I will sing happy birthday and give her a keto-fied cupcake for her to taste.  In just one week, I will give her a present that she will hopefully find interesting and enjoy.  In one week, family will fly into town to celebrate a year that has gone by that was unlike any other our family has experienced.  We will gather around the Bear and celebrate all that she has accomplished in 12 months of life, and look forward to all that she will accomplish in the year to come.  In one week there will be a lot of smiles as we celebrate this joyous and momentous occasion, but truth be told, at the same time, there will also be a decent amount of tears.


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