There was an error in this gadget

Tuesday, June 3, 2014

Roll With the Punches

I've never been one for too many details. I hope I'm known as a go-with-the-flow type of woman, friend, wife, mom...one who rolls with the punches. (I'm working on my epitaph, so far I've got "Danielle McLean, proven pelvis, rolled with the punches.) Truth is it's easy for me because compared to some, I haven't really had a lot of punches to roll with. As I've said many times, my life is beautiful. So I don't take a lot of effort in the planning of minor details. That is not how I've been wired which, it turns out, is fantastic, because I have a bunch of kids now and details get lost in the mess. 
Sure, I have some general and unambitious "plans" for my life, such as:
1. Get my own bedroom.  Check. (freshman year of college, first time having my own room)

2. Graduate from college. Check. (UCF, c/o 2005)
3. Marry my high school sweetheart a humble, funny, handsome, strong, kind, honest, pre-screened and pre-selected by God, most patient man in the universe. Check. (thanks God, I owe you--again.)
4. Have four children. Check. (after 4, numbers don't matter. It's just a lot.)
5. Grow old with same man involved in #3 and #4. 
Sorry to disappoint, but I have no plan to run for office, get a PhD, travel the world, rule the world, etc., as cool as those things might sound to some. You may have noted some of my plans happened out of order, which renders me eternally thankful for a God who is able to work all things for good, for those who love Him. And for anyone still in the market, sovereignty is definitely a quality you want to have in your God, when you're selecting who you will follow in this life, keep that in mind. 

Anyway. My point is, even my minimalist planning approach to life has proven to be either too specific or too self-absorbed, usually both. None of us can predict how our lives will unfold. The most mundane moment in time can shift our future. The most seemingly inconsequential information, encounter, or decision can change everything. In retrospect, sure, it's easy to see how and where a tsunami originated, but when you're busy living your life, most simply can't imagine what is about to befall them. Take, for example, my friend on the bike.

Life just doesn't go how we plan. I am learning more and more to not try to plan how perfect or easy tomorrow will be, because that's not real and hardly ever comes to pass.  Real life is messy, scary, bumpy, and hard, with joy and beauty intertwined throughout those tough times (note the joyful and beautiful checkpoint flags in God's plan). 
If you would have told me I would be mother to twins, specifically a mother to four boys and 1 girl, I might have been scared into not having any. Four boys is a lot of boys. I had 4 sisters and just one brother to contend with, almost the exact opposite...how can I raise all these boys?? Further, if you would have told me that our firstborn son would have a scary delivery and need to be vacuumed out, and then at 3 years old would grow a thyroglossal duct cyst right next to his vocal cords that would need surgery to remove, I'd be scared to tears. If you would have told me that our newborn daughter would have high levels of bilirubin and would need to have an IV and undergo phototherapy for days, I'd be appropriately upset. If you told me we'd have twin boys who were nonverbal and showed developmental delays for their age, and that they'd benefit from speech and occupational therapy, I'd be understandably shocked.  But we must and we do, roll with the punches. Making plans of having 1, or 2, or 3, or 4 children does not guarantee you'll actually have them, and having hopes of uncomplicated or a complete absence of medical experiences for your children does not keep pain and suffering from coming to them. 

This brings me to Levi, our super baby, our number five.  He's been as uncomplicated as uncomplicated can get. He was born healthy and big and strong.  He latched on right away, a strong little sucker. He gained weight appropriately, and is just a perfect little red-headed munchkin. But 2 weeks ago the pediatrician showed concern that his head was off the charts for size, and a little too oblong for her liking. She said although infants can have heads that are a little misshapen from delivery, they will correct naturally in the first weeks of life. Levi's skull shape has only gotten more ovoid. But honestly, I didn't think much of it. Our #1 had a head off the charts too. We did CT scans to rule out hydrocephalus (water on the brain) or any other issues, and turned out, he just had and still has a humongous head. 
So we took this pediatrician's referral to a pediatric neurosurgeon pretty lightly. We scheduled the appointment at Nemours Children's Hospital in Orlando and didn't think of it again, until the day before the appointment. I was still calm, but I realized I didn't even know what our pediatrician suspected, or what she wrote on the referral, or what her concern was. I started googling, and very quickly found Levi's skull shape on other infants on the internet.  The diagnosis of an infant skull being elongated was possibly a case of scaphocephaly, a condition that only appears in approximately 1 out of every 2500 births. 

I drove Levi up to Orlando for his appointment, and after examining Levi for just a few minutes, a very nice pediatric neurologist diagnosed scaphocephaly.  We were sent to get a CT scan just to be sure, and the results confirmed it. At 5 weeks old Levi's skull should show soft spots in several places, leaving room for his growing brain to expand as needed, symmetrically, for the course of the next year. Levi's skull, however, has prematurely fused shut along the sagittal suture (the line running front to back), causing the brain to push back, causing the back of his skull to push out, taking on an oblong shape. 
The only treatment is surgery. 
I was not hysterical as he told me Levi was a candidate for surgery because I had already researched the condition and treatment, so I was somewhat prepared. I was calm, and am still calm, and I attribute that to being a mother of 5, but mostly I attribute it to the prayers that were and are expressed to God on my behalf.  (please don't stop praying!) I felt peace throughout the entire conversation with the doctor. I still feel peace about it, but in reality, it is quite scary when I allow fear to creep in. The surgeon will remove about a 2cm strip of the center of Levi's skull, and then cut some strategic and geometric slices down the two side areas of the skull, to alleviate pressure and allow for proper future growth. It's a two hour procedure, and about 1 in 3 infants undergoing the surgery need a blood transfusion. Minimum 3 days in the hospital post op. 

The surgery is scheduled for July. He will be 10 weeks old.  As I type this, I am watching Levi sleep, cuddled up in a warm fluffy polka-dotted blanket in his swing, wishing he could just stay this comfortable forever.  I don't want to think about what will happen to him in July, I don't want to imagine the trauma that he will suffer, the pain that I am willingly subjecting him to. I know I can't plan for him to have a pain-free life, just as I can't plan that for myself or any of my loved ones, but it sucks to know what's coming for him, and at the same time, it also sucks to not really know what's coming for him or any of my other children in the future. 

But I can take comfort in expecting the journey to get rough in spots.  Life isn't smooth sailing, it isn't an easy ride. If I am prepared for the bridge to collapse under me at some point, since I know this world can offer me no guarantees of safety, peace or comfort, then the bridge collapse may not be so shocking when it happens.  I'm practicing peace, which is a moment-by-moment undertaking, but I know God has Levi in His hands, and that is where my peace comes from. This is not a brain tumor, this is not cancer, this is not fatal.  This does not affect his brain function or sentence him to a hard, painful life. I remind myself of these reasons to give thanks and that helps too. 


If you're already praying for my family, don't stop now. If you're not a pray-er, stop living like that. It's sad.

Life is a journey, not a destination, right? Right?? right. 


Stay tuned for the updates on my other sweet shish kabobs and how I manage to survive the summer with them all...all day long...by myself...
Don't change that dial. 


1 comment:

  1. Count my prayers along with those continuing to pray. <3

    ReplyDelete