2018 Kai Update

Hello blog, my old friend. I’ve come to talk with you again.

I do have a New Year’s resolution to publish 18 blogs in 2018. I guess I didn’t get  a great start in January, but better late than never.

I wanted to start off with a Kai update, because that is what has taken the biggest chunk of our time as of late.

Big picture, Kai is okay. He is going to be okay. He is going to live his sweet loving little guy life and be OKAY.

Smaller picture, this is a hard season. It is hard.

Kai had major surgeries in January, July, and December of 2017 with a couple of minor procedures in between. The long story short is that the July surgery failed and had to be repeated along with a new surgery in December. The verdict is still out on whether the December surgery can be considered a success, but at the very least 2 out of the 3 parts of the most recent surgery will have to be repeated.

His little body just does not want to do things the easy way, or indeed the typical way.

So we spent a week in Columbus, Ohio in December, and another 9 days in Ohio this month.

Let it be said that I am incredibly grateful. We have a surgery team that specializes in exactly Kai’s multiple birth defects, and they collaborate and communicate, and let me feel confident in his care.

We have been lucky enough to stay at the Ronald McDonald house where we feel at home, have room to play, are fed delicious meals, etc. The Ronald McDonald house is an incredibly worthy organization, and what they do for families who have to travel for their children’s medical care is AMAZING. I’m also certain that my kids feel like they went on an incredible vacation, just from spending a couple of days there!

I’m thankful to have a fantastic Grama who brought my girls up to be with us, decreasing our homesickness, and a Nana and aunties at home loving on my bigs.

I’m thankful to have a dear friend in Ohio who is happy to love on me and my kiddos when we are far away from the comforts of home.

I’m thankful that we successfully managed the Ohio snow, which presented some traveling difficulties to this Southern girl, but a lot of extra fun for the kiddos.

I’m thankful for my rock star husband who juggles a gazillion things with ease and cares for my heart every single day. Not to mention that he chaperoned a bunch of middle school and high school students on a mission trip while I was gone! How amazing is he??

I’m thankful that Kai has maintained his joyful spirit. So much to be grateful for.

Plus in the end, we are talking about issues that will remain issues throughout his life, but we are not talking about life or death issues. It is never far from my mind and heart that there are lots of mommas out there who are dealing with life and death issues.

Still, this season is hard. My heart hurts for the medical trauma that surfaces in Kai in even routine procedures. His terror over something such as getting his blood pressure taken is a result of a lifetime culmination of painful and scary experiences, many of which he had to deal with before he had a mommy and a daddy there to hold his hand and wipe his tears.

My heart hurts for the day to day medical procedures that he has to deal with at home. Most of the days he does everything without complaint, but the occasional question of, “why am I not normal like the other kids?” shows me that there are deeper levels of pain inside of him.

My heart hurts as I worry about the future. I can only look at his medical needs in a short-term fashion or I get overwhelmed and scared. This does me no good as the champion for my son, so I try to remain focused on the present.

So for now will keep going onward. We will continue praying. We will continue loving our little guy with hearts absolutely bursting with love. And we will continue kissing that sweet face and feel incredibly blessed to be his parents.

Posted in Kai, Uncategorized | 11 Comments

Back to School 2017

 Back to life. Back to reality.
These cuties are back to school now.

Of course, like normal, I am missing them like crazy.

7th, 5th, 3rd, and 2nd grades. How did this happen?

Why can’t time slow down???

This year was a bit different from previous years. Usually I pack our last few weeks of summer with long days of fun, and try to savor every last minute of summer. I take the kids back to school shopping and they have new shoes, new lunch boxes, etc. We have a big last day of summer dinner.

This year I wasn’t able to do that. And the first day of school came anyway. And everyone was absolutely fine. They were thrilled to go back to school, and turns out their old lunch boxes still worked.

I could not love these people any more than I do.  They are my hearts walking around outside of my body. I pray that this year, and all the people they are surrounded with, are good to them.

Posted in Uncategorized | Leave a comment

Saying Goodbye

This is going to be a picture heavy post.

The last couple of weeks have been spent saying goodbye to my best friend, Karson.

I am navigating new waters here, as I grieve a dear friend for the first time. I don’t recommend it. I am deeply heart-broken. I feel like I am going through the motions in my life as I move slowly through a thick cloud of sadness. Nothing feels quite right. All I want to do is sleep. The world just feels like a bit much right now.

What I really want to do is talk to Karson. I want to share with her all of the beautiful words that were said about her this weekend at her funeral. I want to laugh about a million insignificant things. I want to be with this friend that knew me and understood me and I her. I don’t really know how to do life without her there.

Karson was the best kind of friend. The friend that sat by me at my wedding and baby showers and danced with me at our friends’ weddings.

The friend that I asked to be my maid-of-honor, and asked me to do the same.

The friend that loved on all of my babies, and took such joy in them. The friend that gifted my oldest with the stuffed dog that continues to be his most prized possession.

She was forced to walk down a long road of cancer, but she kept her trademark smile and joyful spirit. And we continued to make new memories.

I was asked to speak at her funeral, which was one of the greatest honors in my life. The eulogy that I wrote is below. (Ignore the grammar. I wrote it for me to read aloud, not to be read).

The last time I sat down to write some words about Karson was for her wedding. Although the emotions involved were entirely different, I feel just as honored to be standing here today.

I’m Emily Hilimire, and I have been friends with Karson since the fifth grade. Karson and I always said that we were kindred spirits. We enjoyed the same things, liked the same people, saw the world the same way. We understood each other. We also dressed the same.  Accidentally… Frequently.

Even two weeks ago I had to laugh when I was rubbing her feet and saw that we were wearing matching teal toenail polish. I guess I can never take it off.

Throughout the tough years of middle and high school, Karson was my steadfast friend.

We shared notes in our lockers, homecomings, proms, plays, parties, asthma. That last one came in handy because Karson and I got out of YEARS of running in gym together.

I was there holding her hand after she dislocated her shoulder ice skating, and she was there reassuring me after I accidentally turned on all of the lights in the middle of her church Easter Contata.

Karson taught me about Earth Day and recycling, even when that was not really a thing yet. She would even reuse ziplock bags. She was way ahead of the times.

We laughed at Dennis’ stories. We laughed when Karson blared her horn at a car only to find out that it was a police officer and we were actually the ones going the wrong way, and we laughed some more when we toilet papered our friend’s car (sorry Robbie).

When I went on my first date with my now husband, it was Karson that I wanted to share every detail with. She encouraged me every step of the way to stick with this guy who was so good to me.

We cried when we left each other for college, but despite our distance we always remained connected. We shared long detailed letters and late night long distance phone calls. She kept organized pictures of every event, and asked me to do the same so that when we were together we could share all of our important moments. It was effective. I felt like Charity, Becky, and Karen were my people too, and I’m certainly glad to have that connection with them today.

Karson and I shared a love for sign language, helping people, and children, and we helped each other figure out graduate schools and later jobs that made the most of these passions.

Karson was the one standing beside me as my maid of honor in my wedding, and I at hers. The days were only slightly different from the ones we had been planning since we were 14 years old.

When I was pregnant with my first baby, I had some complications. Karson was there at the hospital with cinnamon rolls in hand.   She was always there for me…

I’ll never forget the weeks surrounding her diagnosis. Every grueling step was a torturous wait. I remember the call that came early in the morning that it was cancer. Even then, she started with, “well as you know, they biopsied 3 spots. The first two were nothing, everything was fine (and gave me all the details about what they were) but…   the last one was cancer.” Even in the scariest moment of her life to that point, she was looking out for me, trying to present the news with a positive spin. Before we got off the phone she was double checking, “are you okay?”

I know that it sounds trite to say that someone doesn’t deserve cancer, but truly it seems like Karson didn’t deserve cancer. Karson, who was a light in the world. A loving, generous presence in the life of everyone who knew her.

If she was here today though, she would probably present it in a similar way that she presented her initial diagnosis. I think that she would be looking out at us and emphasize all of the positive things. I think she would point to Amber, Melissa, Julie, and the rest of the cancer posse and talk about what a gift they were in her life.

I think she would talk about First Descents, and the way that it stretched her and nurtured her when she needed it the most.

I think she would talk about the friends near and far that showed up to sit with her at chemo, send her cards and flowers, walk with her in the annual cancer walks and otherwise support her.

She would be doing her best to look out for Leigh, and Kirk, and David, and Harper, and all of us to make sure that we were doing okay.

Only after that was done would she maybe nod and agree that yes, okay, cancer IS THE WORST. But she would say it with a smile.

I can’t understand why Karson had to leave the Earth so early. But I do know that I am a better person for having had her in my life. She leaves a gigantic hole in my heart. I’m sure that many of you feel the same.

Karson always loved quotes, and we frequently exchanged quotes. This is a book of quotes that she made for me in 1991.

I would like to finish with a familiar quote that she picked out from Ralph Waldo Emerson:

“To laugh often and love much:

To find the best in others:

to leave the world a little bit better:

to know that even one life has breathed easier because you have lived-

This is to have succeeded”.

I think we can all agree that she succeeded mightily.

I love you forever, my dear friend.

Posted in Uncategorized | 4 Comments

Zac’s Theatrical Debut

Last week Zac performed in his middle school musical, “Alice in Wonderland Jr.”

This was a new experience for all of us. As a parent, I think there are very few things that touch your heart the way that seeing your child do something totally new, especially something that requires a lot of hard work, not to mention a bit of bravery.

My heart was certainly bursting as I watched Zac perform as the Mad Hatter. It was so much fun. I hope that this will be the first of many theatrical performances for this guy!

He had quite the cheering section! We love you, Zac. Thanks for giving us such a fun weekend!

Posted in Zac | Leave a comment

2017 Kai Update

2017-02-23_00072017 has been pretty full for Kai so far. We started the year off by traveling again to Ohio for another surgery for this sweet guy.

2017-02-23_0016 2017-02-23_0017

This surgery related to his bladder, as well as a correction that needed to be done after his previous colorectal surgery.

We were all happy to be back at the Ronald McDonald House, but not at all happy to be back in the now familiar surgery routine.

2017-02-23_0012Doctors, doctors, and more doctors. This guy had enough poking, proding, and testing!

2017-02-23_0013 The colorectal clinic at the hospital gifted Kai with this “poop pillow”. They sure know how to bring out some needed belly laughs!2017-02-23_0011

2017-02-23_0014 2017-02-23_0015This surgery made me more nervous than some of his previous ones. Although it was a pretty straightforward surgery, this one was a bit of a test to see if his bladder could “wake up” and resume normal function. We knew that it was a gamble, but this was the only way that we could find out.

2017-02-23_0018Initially the surgery appeared successful, and after only a few days he was discharged from the hospital.

2017-02-23_0020We had to stay in town for a couple of days, so we took advantage of fun activities at the Ronald McDonald house, and fed our sweet boy anything that would make him smile.2017-02-23_0019Love this picture, taken moments before I carried him out of the ice cream store, fell down the stairs, and badly sprained my ankle (I will spare you the pictures).

Only a couple of days after we got home, Kai spiked a fever. I took him quickly to the pediatrician, who diagnosed him with a kidney infection. We were still hopeful that this was a fluke and that after his body had a chance to heal a bit that he would be okay.

On Valentine’s Day, Kai turned five!

This is the very happy boy that we were celebrating at breakfast.2017-02-23_0021 2017-02-23_0009

And this is the boy that I saw only 2 hours later after his school called me to say that he was running a fever.

2017-02-23_0008It was the most pitiful birthday boy I have ever seen. Just heartbreaking.

After going back to the pediatrician we found out that it was yet another kidney infection.

At this point, it appears that his body is not responding well to the surgery, and that his bladder is not able to work to the extent that it needs to to prevent urine from backing up to his kidney. Because Kai only has one kidney, this situation could become dangerous for him.

Tomorrow we go to our local hospital for a battery of tests. Next week we will meet with the urologist to figure out our next steps. I feel heartbroken for him.

2017-02-23_0022A week after his birthday we were finally able to celebrate him in style with family. Despite what he has to go through on a daily basis, this child could not have a sweeter, purer heart. He is love and happiness personified, and I am forever thankful that I get to be the one to walk this road with him. I get to be the one to hold his hand as he falls asleep with anethesia, and I get to be the one to hold his hand as he wakes up. I get to be the one to wake him up singing “Happy Birthday”, and snuggle him at night.

He is a joy and a blessing, and he is dearly loved. I continue to pray for easier days ahead for him.

Posted in Kai | 2 Comments