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.