Dear Sonzee Bear,
In less than a day, you will be ONE year old. That is completely unbelievable to me. It is not because I cannot believe how quickly the year has gone, but more that I cannot believe how much one little person can manage to do in just one year. You my dear little bear have been through more in your almost 365 days than I personally have in my 32 years of life. You were born into a beautiful body that is so bewildered by your special and unique soul that it pushes you to your limits 24/7. There are not many like you with the strength, perseverance, determination, and patience to be up for such insurmountable daily challenges, and even on your bad days, you deal with it all minute by minute with such grace.
I have spent the majority of this past year siphoning through my feelings regarding this predicament our family has been placed into. The predicament of welcoming into our family our fourth child, our third daughter, our second beautiful blue-eyed girl, our first child with a CDKL5 mutation. The predicament of watching our little baby girl seize multiple times a day, while being unable to do anything to stop it, and feeling completely and utterly helpless. I will not lie and say that the past 525,600 minutes have been spent with only laughter, smiles, and eagerness as we watched you develop into the special little one year old you are about to become. I will not say that the only tears I shed were those of happiness as I watched you get to know and bond with your older brother and sisters. I am unable to say that this past year was filled with watching you learn and explore this crazy world you were born into.
What I can say with certainty as I reflect on your FIRST year of life is that while it was not filled with the completion of typical firsts for you, you gave me the opportunity to experience many firsts of my own. The first time I had to leave a child in the NICU. The first time I had to spend multiple nights sleeping on a hospital "bed" next to one of my children. The first time I saw a baby or a person for that matter have a seizure. The first time I learned about epilepsy and CDKL5. The first time I would learn about epileptologists, geneticists, and a long list of other medical specialists that I did not even realize existed. It was the first time our family would be broken more times than I thought was possible. The first time I had a glimpse of rock bottom and what it feels like to feel despair and hopelessness. It has been a year of experiencing raw, pure, unfiltered emotions to their fullest, both good and bad,
A wise woman whom I hope to be able to meet in person one day has said "I believe every person has a purpose...even if that purpose is to change you...then they serve their purpose." Thank you Sonya Ahava for pushing me towards my purpose. You have allowed me to be more open and vulnerable in all of my interactions. You have taught me to truly not sweat the small stuff, and I know your siblings and father are most appreciative of this accomplishment. You make me realize what is truly important in the smaller picture of "right here and right now" and what it means to be "living in the moment". You make me want to take each day and make the most of it. The two most powerful firsts I have accomplished since your arrival, are ones that took just about the entire year. You have given me the ability to use my voice confidently AND you have taught me to trust my gut. Both of these are skills I will continue to work on improving to make sure I do right by you and of course your siblings.
You have spent the first year of your life trying to do your best every day. You get tired easily, but you pick up where you left off, always pushing yourself to go further. You have an appreciation for the tiniest things, and while others may not understand, you see things in a different light. You love to just take in the sights while sucking your thumb. You love to be around your siblings, and crave social interactions. You are improving with your physical skills and overall development. With your achievements slow and steady, it has given us all close to you the ability to appreciate them that much more.
As we all look towards your second year, I hope it is filled with the accomplishments of many physical goals as well as appreciation towards your capabilities. I hope your upcoming year is spent with more happiness and less seizures. I hope you continue to be content, but strive for more. I want you to continue to grow socially and emotionally and I look forward to getting to know more about your cute little personality. I hope you grace us with more and more of your smiles and we get to hear your laughter. While I would gladly trade places with you in a heartbeat, that unfortunately will not ever be up to me. Nevertheless, I will continue to do what it takes to help you continue to write the pages of your story.
Happy FIRST Birthday Sonzee Bear!!
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