It has been four days since our CDKL5 family lost another precious little soul. A sweet 2 year 10-month-old little boy who was just 4 months older than Sonzee. The pain is a mixture of heartbreak for his family tinged with fear for my own. Within those four days another CDKL5 2-year-old learned how to take her first independent steps. My heart filled with joy for all she has accomplished and immense amount of hope for her journey, but simultaneously breaks for what Sonzee might never do. My heart and mind both torn at the fact that I should be less selfish about my feelings toward other CDKL5 children’s' advancements and just be grateful it's not my turn to be planning a funeral.
This incurable disorder is just devastating on every imaginable level possible. The spectrum is so wide and confusing. We all want to grasp onto hope with the term representing various parts. We hope our children do not constantly seize, we hope our children gain milestones, we hope our children are happy, we hope our children do not suffer, we hope our children do not catch a common cold that sends them into the hospital and has them clinging onto their lives, and most importantly we hope and pray our time to bury our child does not come today.
I spend every moment trying to keep Sonzee's life expectancy in perspective. I try not to focus on the "what if" and "when". I do not let those aspects consume my life, but the thoughts are never distant from my mind. I know plenty will say "I shouldn't think that way", even other parents of children with CDKL5, but I will not convince myself otherwise when I know how unforgiving these toddler years can be, when I have witnessed Sonzee teeter on the delicate rope between life and death, and when I watch her seizures increase in both length and intensity right before my eyes. It works the same with her Sonzee-stone achievements, I try not to focus on the "what if" and "When" but just let her do what her body is capable of, trying to truly believe when I say that I am content with where she is at.
Daily we have new CDKL5 family members added to our group. Having your child affected by a disorder with such a spectrum is cruel and unfair. A parent posts a picture a picture of their 14-month-old standing and some say it "gives them hope", while I do my best to not compare an apple to an orange. No one wants to have their child "more severely impacted", but someone must fill those shoes. It is just the luck of the draw when it comes to CDKL5 and the role it plays and while we could not have won a bigger jackpot having Sonzee as part of our family, we could not have fathomed how difficult and painful her journey was going to be.
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