Called Out

I've been called out on my negligent blog postings, so I am breaking my own rule and blogging during the work day. To my credit, I do intend on blogging every evening. Then I fall asleep. I blame Mackenzie for continuing to wake us up early every day for over a year. 

At this rate, Mackenzie will be 16 and I will still have the same pigtail pic up from my previous post. Thank you, Courtney Freet, for giving my blog a re-start.

In keeping with the pigtail theme, I give credit to Josh for being such a good sport (see pigtails) and such a great Dad.

Just an average Tuesday evening.

One Year

Dear Mackenzie,

Today is Mackenzie Day, aka you are 1 year old today.

When I was pregnant with you, I'd spend a lot of time day dreaming about what you would be like. And, I wondered what I would be like in my new role as a mother. There is no way I could've ever imagined that it would be this good.

The best part about this year has been watching you develop as a person. Often I would wonder if you would be reflective and introspective like your dad, or extroverted like me. And, a lot of times I see glimpses of both of our traits in you, but, 99% of the time, you are Mackenzie. You are your own unique person, and you will dictate who you are and who you will become. You've made that clear from the very beginning.

One of my favorite things about it you is that you have no idea that you are a kid. When you walk into a room, you own it. Even better is that you rarely now require the hand holding from your dad or me. It's like in your head you are thinking, "I am Mackenzie. This place needs to know that I am here." When you are doing anything--playing with blocks, books, examining a paper towel--you act as if it this the most important thing. You take your play very seriously.

You are also very curious. You are fascinated by other people--especially children--and you spend a lot of time sizing people up. I'd love to know what is going on in your head when you do that. You spend a lot of time figuring out how things work, and have picked up on things like where we put our dirty laundry, how to wipe up water on the floor and how to buckle your car seat.

Mackenzie, you are a light in our lives, and make our family whole. I love being your mother. Love. It. Keep on being you, kiddo.

Pigtail Delight

Happy Friday, everyone!

One of Mackenzie's teachers was thoughtful enough to send me this picture of Mackenzie--plenty of hair for pigtails.

Mackenzie, always a boss.

Mackenzie Makes the Big Leagues

Mackenzie's been called up to the bigs. In baby world, this means she has moved up a classroom in day care.

Mackenzie's always known that Infant Room B has been her destiny, as she has frequently tried to bust her way in (see below).

Photo courtesy of Chris Cohen

She is excited to join her former Infant Room A teammates, get paid in Cheerios and have access to better facilities (aka, toys). 

Mackenzie, you must have a great agent(s).

Activity-less

This picture sums up my favorite part of Christmas--Love.

Christmas was spent in the mountains of North Carolina with the Cozarts this year. My family is known for doing many "activities" when we are together. Along with the hustle and bustle of pre-Christmas, there are friends to see, parties to throw, hikes to take and dinners to attend. There is typically little down time until all the presents are unwrapped.

This year, however, the Norovirus imposed an activity-less holiday. The bug-spread by the cutest contagion you'll ever meet-struck hard and fast. The bad news? Vomit was a part of our Christmas. The good news? It forced us all to take it easy and mellow out. Well, that and not make any of us feel guilty about eating too many holiday treats.

But back to the photo above. Ever since I was pregnant with Mackenzie, I have dreamed of her first Christmas. I love Christmas. I mean love Christmas. I enjoy all the festivities that surround the holiday, but more than anything I love how Christmas feels. It's warm, cozy and joyful. And what's better than feeling warm, cuddly and joyful? Making those you love feel warm, cuddly and joyful. No better person to share that with than your child.

Peace, love and warmth--Merry Christmas.

'Zo

Remember the Charlotte Hornets? If you grew up in N.C., not only did you follow George Lynch and the Tar Heels, but you also followed Muggsy Bogues, Alonzo Mourning and the Hornets. And, right beside your Carolina baby blue wind suit was a bright teal and purple Hornets shirt.

Alonzo Mourning went on to have a great career--mainly with the Miami Heat. He now works in the front office of the organization, and he and his wife are big philanthropic figures in the South Florida area.

Alonzo is also a kidney transplant legend. You can read his full story here, but, in summary he had a rare, life-threatening kidney disease. He was in and out of retirement, on a lot of meds, had a lot of side effects, and finally received a new kidney from a cousin.

While filming our 2014 Building Champions video at the Heat's arena, my coworkers set up a surprise meeting between Alonzo and me (I'm not sure if I was more touched that Alonzo took time to meet with me, or the effort that my friends went to to arrange it). Embarrassingly, it took me a while to figure out that he was there to talk to me--not watch our filming of the video.

Alonzo is the first person I've met with kidney disease. In my earlier post, I wrote a lot about the fear associated with being diagnosed with a disease. But it is also very lonely if you don't have any frame of reference or know anyone else who has had a similar experience. Admittedly, it is hard to be positive if you have no network of people with kidney disease to relate to.

Alonzo had a successful kidney transplant in 2003, and says enthusiastically that since, he's been in the best shape of his life. See, not only do Alonzo and I have kidney disease in common, but neither of us enjoy being on medication. Alonzo has since dedicated himself to a strict, low-sodium diet, an eastern medicine approach to his health and yoga. He is also incredibly positive--he's positive in his approach to his health and in his interactions with others.

Yesterday was a turning point for me. If Alonzo can do it, so can I. #BeatPKD

Love Wins/Beat PKD

Last week I was diagnosed with Polycystic Kidney Disease (PKD). 

 

Early in the week, I was experiencing pain in my abdomen--which I thought was a pulled muscle or a bruised rib--so I went to the clinic on campus. Soon after, I was at the ER so that they could run diagnostics. While they found nothing acutely wrong, they did find innumerable cysts on my kidneys and liver--a classic sign of PKD. Still believing that this was a misdiagnosis, and much ado about nothing, I saw my primary care physician. Then a urologist. Then a nephrologist. All came to the same conclusion.

 

Since then, Josh and I have floated between devastation and determination. Devastation over the diagnosis, and determination to beat PKD.

 

PKD is a genetic disorder and is chronic. Over time, cysts on the kidneys build up so much that the kidneys fail, and either dialysis or a transplant is needed. Having no evidence that points to my grandparents, parents or aunts and uncles having this disease, right now we are concluding that it was a spontaneous genetic mutation, which occurs in about 5% of PKD cases.

 

There are many challenges. The main one being that there is no cure, yet. There are drugs being developed that will slow the progress, but they are not yet generally available. The other big challenge is that this is genetic. Though we will not know if Mackenzie has PKD until she is much older, there is a 50/50 chance that she will have it.

 

There are also many, many positives. There is a 50/50 chance that Mackenzie does not have it. We will continue to hope that she does not, or, if she does, that at that point there will be a cure. 

 

Another positive is that right now my kidneys are functioning at 100%. From here forward, I am on a strict, low sodium diet, and instructed to drink massive amounts of water and eliminate caffeine. The key to extending the life of my current kidneys is to keep my blood pressure low. I can still run, spin, etc. And am encouraged to do so with vigor. 

 

Though I have a problem with our doctors quantifying my life, based upon the majority of cases, I have about another 10-15 years with my current kidneys. At that point, I would need a kidney transplant. Again, I do not believe any doctor can quantify how long I will live, and firmly believe there are enough factors that I can control that I can extend the life of my current kidneys longer than 10-15 years.

 

Josh and I are now in the process of working with my health care providers to come up with a plan to fight this. And we are determined to be vigilant in working our plan. We are incredibly lucky to have access to some of the best care in the country, and have been greatly assisted in accessing this care.

 

So, why am I telling you this news? Besides casting a wide net for kidney transplant candidates (only half joking), I believe that love wins. Josh, Mackenzie and I cannot do this alone. We need your love, your support and your prayers. We have a long road ahead. We are lucky to have amazing friends and an amazing family. Our hearts are full. Mackenzie deserves to have a mother for absolutely as long as possible, and we deserve to be a family for as long as possible. Love. Wins.

 

If you want to learn more about PKD, I encourage you to visit https://www.pkdcure.org/.