As I start this post, my heart is filled with so much gratitude and love that I know it will be an emotional one to write. My family, friends, and even strangers...I owe them so much.
"Other things may change us, but we start and end with family."
Most of us have made comments such as "I don't know what I would do without Person X in my life." And in my case, this couldn't be any truer. Because I can say with 100% clarity that I don't know what I would do in this journey without my mom and dad. After Kennedy's first surgery at age 2, when we learned that her life was on the fragile side, my parents have never missed another surgery (okay, my dad did miss a recent one but my mom never has). They have cancelled a trip to Peru for fear that a surgery would be scheduled during that time. My mom has spent her birthday sitting in a hospital waiting room. My dad has driven seven hours home to get there and learn that Kennedy was having unexpected surgery the next morning and turned around and drove seven hours back that night. My mom has spent weeks at a time with us, helping to take care of Kennedy. She has slept in hospital chairs more nights than anyone ever should. My dad has made numerous trips to bring my mom down and pick her back up. They plan their retirement travels around the possibility of surgeries. My mom keeps my laundry going, my house picked up, and Katie fed while I'm unable. The hours they have spent in hospital rooms entertaining Kennedy, the hours they have spent driving me back and forth to hospitals because I'm too tired, the hours they have spent being there for Katie when I couldn't be, the amount of miles they've put on their van to be here...it is simply amazing. And I can see how much it all wears on them (it is their grandchild, afterall), but they just keep on going like the rest of us. In no way will I ever be able to express my gratitude to them in this lifetime. It just isn't possible.
I can repeat here that I will never be able to express all of my gratitude in this lifetime to Ryan's parents. They haven't always been able to be here physically for every surgery, but I know those instances are even harder for them as they wait by the phone. Connie has spent many, many hours sitting in a hospital room, numerous nights "sleeping" in a hospital room chair, and they both have spent many hours praying -- all for Kennedy. And when Connie's here, she will do anything we need whether it be laundry, errands ran, or taking Chelsea to the vet (something I won't even do!). She has made many lonely trips to NC and she'll never know how much it means to us. And my in-laws are so deep in their faith that I know Kennedy is being prayed for in just the right way, at just the right time.
Brothers, sisters, cousins, aunts, uncles, grandparents. You name it, and they are there for us. Whether it be calling and texting us to check on Kennedy, sending her gifts, making a trip down to visit her, or just thinking/praying for her...we couldn't love and appreciate them more. My brother often keeps me going with his texts, even though he probably doesn't realize it. I can honestly say that both Ryan and I have awesome families and I don't know what I would do without them.
"A friend is someone who walks in when the rest of the world is walking out."
As true family, our families are going to be there for us no matter what. In our world, we see it as part of our family role. But my friends have chosen to walk by my side and in no way can I express what that means to me. I know that being my friend isn't always easy. But because of Kennedy, I also know who my truest friends are.
Pam, my sister in friendship. I have to think fate put us in the same office when I started working at RTI. No matter what she has going on in her life, she is there for me in a heartbeat. She has spent more hours than I could ever count in a hospital waiting room on my behalf. She has sat beside me during almost every surgery, taken time off of work to be there with me. Sometimes we hardly talk, other times we don't stop. She knows exactly what I need, when I need it. During surgery, my parents and Ryan's parents are there but dealing with their own worry for Kennedy. Ryan is there with his own worry. Pam is there truly just for me on surgery days. And in the aftermath, she comes to visit Kennedy in the hospital, she brings Lea to help brighten Kennedy's day, and she makes me escape the hospital when I clearly need a break. She dons her Team Kennedy shirt with pride and she is truly one of Kennedy's biggest supporters. To say that I owe her is an understatement. But the thing with Pam, no matter if I remember in my haze to thank her or not she knows that I truly appreciate all she does for me. And she knows that I would do the same for her in an instant.
Some friendships can stand the test of time and distance and I'm lucky to have several of these. Julie always calls me to make sure that I'm okay. I can remember sitting in the PICU waiting room at WakeMed back in 2007 and my phone rang. It was a bad time, bad news just delivered...and she called at just the right time to tell me she loved me. That was all. And that was all I needed. After the most recent hospital visit, I received a card in the mail from Jamie. I was having a crappy day, trying to deal with my guilt over all the recent drama. Her card was a virtual hug and that's exactly what I needed. And Kendra. She's sure to keep me laughing. She is good at keeping me distracted. But she's also one of my best cheerleaders. I think it would take several hands to count the number of texts she sent me in September, reminding me that I could and would get through it. I love them all dearly and will cherish these friendships till my last breath.
And of no less significance are my other friends from along the way, all of whom have been a huge support in this journey. Leslie, Angie, Allison, Terri, Beth, Sarah, Jennifer, Carrie, Janice, Sarah, Jeanna, plus many, many others (and as others come to mind I'll be apologizing to them for not listing them personally). They have mowed our grass, they have walked our dog, they have emailed a hug, they have taken care of my other child, they have sent gifts, they have prayed for us...they have just been there for us. Just knowing that so many people care about us warms my heart and makes life just a little easier.
As much as I appreciate all of MY friends, what I feel most truly blessed about are Kennedy's friends. Andrea, Carson, Sydney, Megan, Brad...they are all awesome kids. And their moms are absolutely amazing. Andrea first visited Kennedy when she lived in the hospital for a month at age 5. I still remember her sitting in the bed with Kennedy as the nurse wheeled them down the hallway, to a new room. They were giggling the whole way. She visits multiple times each time Kennedy is in the hospital, often staying for hours. During the recent hospital stay and after learning Kennedy had to have another surgery, her mom worked it out so Andrea could call Kennedy every evening while on a school field trip, a trip where they weren't even supposed to have contact with their parents. Andrea has been through it all with Kennedy and I can't even begin to explain what a difference that has made in keeping Kennedy going, keeping her spirits up. Kennedy has been friends with Brad and Megan since they were babies and their support of Kennedy also goes above and beyond. They have awesome parents who I cannot explain how much I appreciate. When it comes to friends, Kennedy won the lottery. And I won the lottery in that her friends have wonderful families who would do anything for Kennedy.
"Remember there is no such thing as a small act of kindness. Every act creates a ripple with no logical end."
What I have found so humbling in all of this journey is the love and kindness we have received from people who don't know us or people who have never met Kennedy. Today's social networking is an awesome thing, let me tell you. From friends I went to school with years ago to people I will probably never meet to half of the Hurricane Nation, their words of encouragement carry us far. Team Kennedy shines in their support for my baby girl and I can only hope that I can pay their kindness forward in full someday.
My point in writing this blog is simple. Without our amazing support system, this journey wouldn't be possible. Although I sometimes feel alone in this journey, deep down I know that I'm not. Although Kennedy sometimes feels alone in this journey, she knows that she is surrounded with love. And although no one in our support system can fully understand our journey, they don't need to. Because above all else, they know how to be there for us. And they have all helped me learn that it is okay to need help, to ask for help, and to accept their help. No matter what form that help comes in.
So my take-home for all is to build a support system. Make sure you surround yourself with good people, people who are selfless and kind. People who will be there for you when the cards come crashing down. Because you just never know when that might be.
Thank you doesn't suffice. There are no words in the English vocabulary to express what I feel in my heart for everyone in our support system. We're lucky, I know. I can only hope that each of you reading this have an equally amazing support system. Add me to your list...I owe you all.
(NEXT BLOG: Ear Reconstruction, Take 2)
God has blessed you and your family!!!
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