Thursday, August 11, 2016

Eighteen Months

My dearest Sonzee Bear, 

I do not even know how to begin this letter to you.  As I sit here the rain is pounding on the skylight, you and your siblings are sleeping, and your father is out at ice hockey.  I have so many emotions running through me right now I do not even know where to begin.  This has been a prominent occurrence during the past 18 months of your life.  I find myself constantly straddling two worlds simultaneously, the one where I am fighting back the tears because of sadness, and the one where I am fighting back the tears because of happiness.  One thing seems for certain, there are always tears.

In one more hour it will be exactly 18 months since I first ignored the signs that you would be making your debut 2 weeks prior to your due date.  A day after the day your father joked that you would be arriving.  In true Sonzee fashion, you had your own agenda planned.  Luckily, for the both of us, you did not make me wait long once you decided it was time.  In just 8 hours, it will be 18 months since I first held you in my arms.  18 months since you made us a family of six, a family of four girls and two boys.  18 months since our lives became part of a storm, similar to the one that is going on outside.  So much has changed since those first moments, yet so much has remained the same.

Since your arrival I have received many new titles; a mom of 4 beautiful children, a NICU mom, a mom of a child with epilepsy, a mom of a child with a CDKL5 mutation, a mom of a special needs child.  I embrace my positions with a smile, but sometimes they mask the pain that I feel for your suffering.  While I am thankful that we are celebrating this momentous occasion with you in our presence, it pains me exponentially that undoubtedly you will have at least one seizure today and you will struggle to communicate your wants and needs.  This day of celebration is clouded with the fact that you will be in pain in some form or another and just like every day for the past 18 months, there is nothing I can do for you to make it go away.

I have been waiting in anticipation for this day as I did with your siblings.  You of course have a specific outfit that was purchased with your personality in mind.  I had distant dreams of the accomplishments you might have achieved, but thankfully, I always keep the backdrop blurry so that you never feel like you have let us down.  I push you like I do your siblings, and while there are days that I am frustrated with the situation, I want you to know that you could never disappoint me.  I am just so thankful for your current capabilities and your consistent determination.  

These last 18 months have been so hard on me for a multitude of reasons, one of them being the constant worry that I am not honoring your wishes.  I just want you to live the life that makes you the most happy.  I sometimes wonder if that is just letting you lay on the green mat so you can roll off it 100 times while you secretly enjoy making me walk over to place you back on it.  You have such a strong fighting warrior spirit, which has become evident; as we have watched, you hover over the fine line of life and death far too many times for my liking.   

While there is no guarantee for anyone, celebrating birthday moments like this is bittersweet to me, as I live in constant fear that it will be the last.  So I apologize now (not really) for the insane amount of pictures and poses I will undoubtedly be making you participate in.  18 months is a date I was uncertain we would even reach with you a couple of months ago and yet it snuck up on me so quickly.  These last 18 months have been one big contradiction; I cannot believe how a year and a half has flown by and dragged on all at the same time. 

Thank you my little bear for helping me work on my patience, and for giving me strength I did not know existed.  Thank you for helping me find my voice and making me a better parent.  Thank you for helping me unlock a hidden desire and passion of writing, that without you would never have come to fruition.  Thank you for brightening my day with your crooked adorable wide mouth smile (when you are in the mood to do one).  Thank you for allowing me to hear your sweet little voice and even your not so sweet and loud cries.  Thank you for being a great teacher and student to your siblings who love you so so very much.  Most importantly, thank you for being YOU.

I hope and pray that these next days, weeks, months, and years of your life will be filled with more joys and accomplishments than seizures, pain, and sadness.  I wish for you many more "ema made" celebrations so we can see your cuteness as you are forced to wear ridiculous customized outfits that bring me so much joy and happiness.  I hope you have an idea of how much you are loved by us all.  


Moreover, thank you for the past 18 months.

Love always, forever and a day, 
Ema

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