Spring to Summer 2018

Ok, so I have not done well at blogging. And it isn’t because I don’t have things to blog about. Multiple times I have sat down to write but then remembered that I hadn’t written about such and such and needed to do that first, and suddenly I’m in a rabbit hole of unwritten blogs.

Since we are on an incredible adventure right now that I absolutely want to blog about, I thought I would just catch up the best I can and then I can get on to the current stuff.

If you are not my mother, mother-in-law, or godmother, you might not care about this very long update, but since I keep these blogs for my own records, I’m getting it in anyway!

We have done an extraordinary amount of traveling in 2018.

Jeff and I got to go cruise with his company. We went to a chocolate factory and enjoyed the Carribean.

My kids got their first sight of Davidson College, my alma mater.

This was on our way to West Virginia where we took our three oldest on a ski trip with some of our favorite friends.

We spent Easter in Chicago with all the aunts and cousins. Besides the very long drive with at one point THREE carsick kids, we had a fantastic time. 🙂

We had a follow up appointment in Ohio where we got GOOD news for the first time, and a planned surgery was cancelled! Instead of the recovery we were expecting, we got to enjoy the time together. Drew got to see a Cheetah for the first time in person, and we all got to ride a camel.

But shortly after we got home Drew dropped a bottle on Kai’s hand, spraining his finger. Kai is never going to let Drew forget it. He says this was worse pain than all of his surgeries (he is known to be just a tad dramatic).

We also got to have some fun with eggs to find out if the new cousin to join the crew was going to be a boy or a girl. We can’t wait to meet this sweet GIRL! 🙂

Kaitlyn wrote a report about Jimmy Carter, giving us a chance to make the trip to Plains, GA to meet him in person. We all loved the experience of listening to him speak and seeing where he grew up.

We tried to get some dental work done. It didn’t go well. Now we still have dental work that needs doing. Sigh.

We did the regular things too. We went to tennis matches, soccer games, and swimming lessons. So much tennis, and soccer, and swimming. Oh, and dance of course. Oh, and drums. So much of all the things.

Geez, I even missed some birthdays.  

Kai turned 6 (In February :(), and the girls turned 9 and 8. We had some parties. 😉

Pj themed this year for the girls’ family party.

There were a couple of major haircuts! Both of these boys were thrilled with their new looks (Kai’s mohawk was mean to be temporary fun, but he managed to be rocking this look on class picture day. I guess it is now with us forever…)

This really deserves a post of its own, but Kai graduated from preschool, ending a ten year stretch of having a preschooler. The last days were full of all the feels, and I think I can just now look at these pictures without tearing up.

My final preschool carpool. (Mae was happier than she looks. She just didn’t want me to take a picture right then). These guys are the best of buddies, and loved being together. I’m going to miss these drives with them so very much.

 

 

Actually, I’m going to miss every little thing about this so very much. Forget it, the tears are back again.

That wraps up a pretty epic spring that moved quickly into summer….

 

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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.

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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.

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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.

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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!

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