Friday, February 2, 2018

Dear Sonzee Bear (2)

Dear Sonzee,

The last letter I wrote to you was the day before you turned one.  I can remember so many if not all of the feelings I had that day as I reflected on your first year of life.  The joys and sorrows that filled each and every moment of your first year are etched into my mind.  To be honest little girl, the years have continued to pass by and the same types of feelings fill my heart and mind as your third birthday inches closer.  I feel I have grown as a mom and as a person in more ways than I could have ever imagined, but I also feel I have lost portions of myself I fear I won't ever be able to recover.  It is purely due to the situations that I have been faced with while on this journey with you, but it is due to no fault of your own.

I sit here tonight with a huge lump in my throat and tears in my eyes as I think about all you have gone through over the past almost three years of your life.  I honestly wonder about what the next three have in store for you, and I pray no matter where we are in all of this, you will have been given some reprieve to the suffering you are constantly forced to endure.  I do not want this to become about me, because this is your journey, this is all in the name of your soul's special purpose, but g-d do I wish your purpose was not at the expense that you are currently paying.  I wish I could have an ounce of your grace and ability to cope in the manner that you do with everything that has been thrown your way, because you my little bear live up to and beyond the spirit of the fighting bear you represent.

My heart aches for all that you are required to deal with, my mind is pained for the inability we all have at understanding your methods of communication, I feel suffocated as i watch your daily struggles to make the smallest movements, and my body is physically tired from watching you take part in the seizures you are constantly enduring.  I wish you didn't have to experience any of the hardships or limitations you have been given, but I must commend you on your absolute strength and determination not to let any of these things take you down.  I wish with every ounce of who I am that you did not have to live the life of a child missing such an important genetic protein.  There are so many times I feel so selfish for wanting you to keep pushing on despite all that you go through, but I also hope you understand that I would never want you to keep pushing on if you ever felt it is just too much to do.

You continue to bring out such joy and happiness to so many people.  You, yourself, all 20 pounds of you have made me an inspiration to others.  Do you know how many people have been able to make that sort of impact by the time they are three years old?   I will let you in on a little secret, very few.  You are a beautiful, strong, endearing, fierce little girl.  You amaze everyone who truly gets to know you, and you have influenced so many more people than you will ever know.  As painful as this journey has been so far, I cannot imagine where I would be, where our family would be without you.  I am so excited to be in the final planning stages of celebrating these past three years and am eagerly awaiting birthday week to begin in two days.

As always I am fervently praying that the next chapter of your story will be one filled with more ease and less days of hardships; but if it is not, I know you will be up for whatever challenge is sent your way and I hope you know I will be right there holding your hand, stroking your face, and kissing your forehead along the way.

Happy almost third birthday Sonzee Bear.

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