It is not the same

Sunday marked the official beginning of "Birthday Week".  To be honest I still have not decorated the chalk board wall in the playroom, and I have yet to hang the birthday cupcake door sign.  Birthdays are a source of excitement in our house, it is one of those things I pride myself on.  The joy that comes from the birthday child is easy to feed off of and something that helps hold me accountable for "birthday week" follow through.  Besides me saying that it is "birthday week" Sonzee is not showing any source of excitement.  She doesn't run to the playroom to see that the wall is ready for her to pose for pictures.  She doesn't ask who the presents on the shelf in the garage are for.  She is not able to show if she is even fully aware that it is her birthday this weekend.

I have no idea why, but the weight of all these events and milestones have been much more challenging for me to accept recently.  Maybe it is because 3 is typically that age where a lot of things just click for a child.  It is the age that represents so much change, so much more "maturity" than the first years of life.  It is the year that all those amazing personality traits develop, and that individual personality becomes more known.  Sure, we have a glimpse of Sonzee, but sometimes I feel like I am completely off the mark.  I often wonder if her eye rolls and head turns are not sass, but rather just her oculomotor apraxia and muscle weakness?  

I have been watching videos of her first years of life, she was so happy her first year, so full of smiles and life.  If she could be stuck in a Groundhog Day for a year I would choose that first year of her life.  The year before her EEG background turned to hypsarrhythmia, before her seizures became so much longer and so much more often, before we really dealt with her GI issues, before feeding tubes and the ketogenic diet, before her ridiculously high 2-month steroid treatment, before multiple medication changes, before we started to really gamble, before she lost her true Sonzee happiness.  I think my heart hurts worse now than it did then, and I remember thinking that was not possible.  

I am going to get her wall decorated, and before this post is published the cupcake birthday sign will be hanging on the front door.  The final items for her birthday dinner will be delivered tomorrow and by Friday night the tables will be set, and the house will look like a party city.  Sonzee's siblings will be my source of birthday week motivation and Sonzee will have no choice but to embrace this celebration and know it is completely for her.  However, for tonight, I am going to take a brief pity party time out and cry over all the things she and therefore I miss out on all due to CDKL5.

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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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Tug of war

We finally toured Sonzee's preschool yesterday.  I say finally, because we have known since she was 2 months old that we wanted to send her to this school.  We have attended the family program on Friday's over the past 2 years, but have never actually set foot on the other side of the double doors.  We have one remaining meeting in 13 days that will make this next step our official reality.  I am filled with mixed emotions as my baby girl is getting ready to enter her first school.  On one hand they are the same emotions that have filled my head and heart as her three older siblings took these same steps, on the other hand, they could not be more different.

I feel like my mind is separated into two sides and there is a rope attached to both sides, for every happy emotion there is one that makes my heart sad, and I am being pulled back and forth between them.  I am so excited that Sonzee will have the ability to flourish in a new environment, but it is not in the same environment where her siblings are.  I am so thankful she will be in a classroom that is tailored to meet her needs, but she will no longer be home with me every day.  Her classroom while likely to be amazing and will provide her with the tools she will need, is not a typical classroom in any manner.  I am so grateful for the opportunities this school will undoubtedly provide for her and to her, but they are not the opportunities parents wish for their children to have to experience when they envision their schooling.

We walked from classroom to classroom, looking through the glass at the children as they learned.  We started by seeing those children who are developmentally the oldest; smiles across their faces, lights bright in the room, sitting around the table enjoying their snacks.  Multiple teachers and aids at their side helping them with their snack time activity.  As we continued our tour the lights in the classes were lower to help with seizure activity, and the centers were slowly replaced with several types of equipment.  Sam joked that there were easily thousands of dollars in equipment in one of the rooms.  My heart bursting at the idea of her getting to experience incredible opportunities that insurance would never allow us to do at home, but simultaneously hurting at the fact that she needs all the several types.

My baby girl is no longer a baby for all intents and purposes, but she will not be walking into her first day of school.  She will not require a teacher to hold her while she kicks and screams begging me not to leave her.  She won't come rushing back to the door or look at me with a face that pleads with me not to leave her with people she hardly knows for the day.  She won't give me kisses or huggies or tell me she loves me, to have a good day, that she will miss me or even say good-bye.  I won't look through the glass window and see her distracted by an activity, so she doesn't realize I am gone.  She won't glance back to see if I have walked away.  All the first days of school experienced since 2015 that brought me tears as I wondered how Sonzee's would go are about to come to fruition, culminating into the biggest game of tug of war.

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