In early June, I shared an old piece with you all about the day I watched my sweet blonde baby girl die, and thankfully be brought back to life. It was the five year mark of that dark, dark day in our world. What that anniversary gave realization of is how my worries, my fears have changed throughout this journey...
At 8am on September 11, 2001, I received a call from my doctor saying that test results weren't looking right, that she needed to see me no later than the next day to run further tests and start me on medication in an effort to prevent a miscarriage. A bad start to what would become a terrible, terrible day (for all of us). That day will always have double-meaning for me...in addition to the end of our country as we used to know it, it was also the official start of what would become this journey known as Kennedy. From Day 1, I knew something wasn't right. And when every test came back funky, I knew I was being validated in my feelings (even though every re-test came back normal). I spent nine months worrying and in fear that something was wrong with my baby, only to be reassured time and time again by my doctors that everything was fine.
Those worries and fears morphed into others on May 8, 2002 when this quiet, yet powerful, child entered my life. Obviously, my fears of something being wrong were proven true. Would she be able to hear? Would she be able to see? Would she be one of the many with heart problems? What does having only one kidney mean for a healthy future? Would she learn how to eat without needing a feeding tube? Would her brain be compromised due to extra fluid pockets? Would she be developmentally delayed? And the list of worries and fears went on and on and on and on and on. And we took it day by day, doctor visit by doctor visit.
The first couple of years were filled with learning everything we could, absorbing information from many, many doctors and trying to find her all the help we could get her. By age 3, my fears had turned into things such as: will she be able to get used to a hearing aid? will we ever be able to get her speech to a place where others can understand her? will she ever be able to function in school considering how painfully shy she is? what does the future hold in trying to figure out her newly worsening skeletal issues? what will be next in the laundry list of issues we continue to face?
Right after turning five, we handed our baby over for a major surgery which we knew included being sedated and on life support apparatus for three days in an effort to get her over the initial intense pain. What we didn't foresee is trying to pull her off of the life support only to watch her die in front of us. Thankfully, we also watched the doctors revive her and place her back on said life support. Would she wake up? Would she be our little girl? Would she need a trach in order to breathe long-term? Did the time without oxygen harm her in any way? Would she remember what she's been through? Would she survive? Luckily, she did wake up 6 days later and was able to breathe on her own. But would she survive the drug withdrawal? Would it have lasting effects? Would she be able to walk again? Talk again? Eat again through her mouth?
More than anything, this was a major turning point for my fears and worries. My biggest fear was losing her, watching her die again. It didn't help matters when nine months after watching her die and be revived that I was again watching a similar scene play out after a simple tonsillectomy - her lung collapsing, losing consciousness, being bagged, being put on life support, an intense lung infection. You start to ask yourself how much can one little body survive?
Although we never take a single surgery or its intended outcome for granted, I have recently realized that my fears and worries of losing sweet Kennedy have lessened. I will never let my guard down but we have had really good luck with recent surgeries (not necessarily the outcomes!) and only put our trust in doctors who will listen to our concerns, listen to her past history, and go out of their way to make sure that my baby girl survives anything that she has to endure.
The worries and fears never go away though, they only change. With Kennedy starting fifth grade, the end of her elementary era, I start to fear and dread the days of middle school that are soon upon us. Will she have her new ear by then? Will it help give her confidence? Have I instilled in her enough confidence to survive any teasing or bullying? Have I given her what she needs to stand up for herself in tough situations? Have I taught her the best ways to handle hurtful words or worse? How do I encourage independence yet insulate her from the cruel middle school world?
Then there are the fears and worries that live in the back of my mind and become clearer and louder with each passing year: will she continue to excel in school? will high school and college be able to accommodate her needs? will she find true love someday, someone who accepts her for who she is? will she be able to have the babies that she wants to have (besides only one kidney, many with her syndrome have problems with reproductive organs - we haven't gone there yet)? will she use her experiences to help others in a positive way like I hope she will? will her medical issues level out at some point? will they stop multiplying? will life be easier for her as an adult? will she find happiness? will she hate me for any decisions that I've made along the way?
We all have worries and fears about our kids, it is only natural. I know from my own experience, that my worries about Kennedy are so different than those I've had for Katie. That having a child with any kid of special needs brings an entirely different set of fears. But luckily there is a solution for keeping these fears in check. Martin Luther King, Jr once said "We must build dikes of courage to hold back the flood of fears." Luckily for me, Kennedy is the epitome of courage :).
