It Never Rains When I Want it To

You humble me, Lord. That's my favorite Norah Jones line. I'll tell you why...

We are 3.5 weeks post surgery, and James looks absolutely fantastic. All of the bruising is gone, the sore on the back of his head is significantly better, and his suture line is a work of art. Really, some people don't even notice it. A surprising bonus is that he has not been congested in these last few weeks. We will have to see if the cranio surgery opened up his head enough to make room for his adenoids when we meet with the ENT in October.

He is also sleeping, (can I get a HALLELUJAH?!) for the most part peacefully. He still has a hard time with a nap here and there, and nightmares on and off. The nightmares are scary even for us (sweaty, screaming baby), but they seem to come earlier in the night now, when we are still awake. He seems to be returning to his happy little self, slowly, but surely. We even left him in the church nursery this last Sunday and he didn't melt down at all!

I've been reflecting on how well babies recover, versus how their moms and dads do. I was told that James would be just fine in the end, but that we, as parents, would have a lot more grey hair. I don't know, I haven't counted my greys. I do know that in the 6 weeks before, during, and after his surgery, I had an eye twitch that wouldn't go away for a week, insomnia, I developed an ulcer, my hair has fallen out by the handful, and I gained 10 pounds--yes TEN!! Goodness. I can't speak for hubby, other than the fact that he also slept fitfully, and the darkness under his eyes matched mine. As for both of our beautiful baby boys though, they are nearly unfazed. They trust God without even trying. Amazing. Humbling.

On a separate train of thought (I have learned the hard way that it is wise to tell folks when you're going to change the subject)....we're still exhausted, although now it is Big Brother causing us heartburn. Our nearly 2 year old will NOT EAT! Seriously, will not eat: eggs, beans, meat, most vegetables (raw, steamed, fried, dipped, coated, or otherwise), rice, pasta, bread (unless it has peanut butter on it), and most cheese. This is not a phase. He has never eaten these things. It's not like he just decided tonight to be picky. He survives on a diet of oatmeal, peanut butter and jelly, fruit, yogurt and whole grain snacks (like Wheat Thins). We don't let him have something else when he refuses the meal we offer him for dinner, and while he'll cry with hunger all night and wake up ravenous, he will refuse that same dinner the next morning! He has multiple times gone 24 hours without eating anything at all because he refuses to eat what we offer him (we're talking mashed potatoes, carrots and chicken here, nothing exotic). So, I know that there were a number of people reading this, many with children, and I'd invite any advice y'all have to offer at this point. Whether we know you personally or not, if you have a suggestion, recipe or trick, please post a comment. I'm hoping to not lose all of my hair this year!

The Things "They" Never Tell You

Friends, I have some beef here, and I'm not even sure who it's with.

First, James seems to be suffering from some form of PTSD (post traumatic stress disorder). Now, if you think about this, it makes perfect sense. Let's translate his experience into adult terms. You go on vacation (somewhere new), with some friends (your parents), and your friends say it's ok to go with these new people (the doctor and nurses). You then you wake up blindfolded (eyes swollen shut), tied down, unable to scream (with a tube in your throat), and in the worst pain you've ever experienced. You can't eat, but they keep cramming these gross substances (painkillers) into your mouth, and then you unexpectedly fall back asleep. The lights go on and off at all hours, and you hear people you know (your parents), but they are not saving you from this torture. Seriously, how does this not mess a person up permanently?!! I'll tell you how...he's 9 months old. In a month or so, he'll forget it. As long as we love him and hold him and reassure him as he wakes up (every 45 minutes all night LONG!), he'll get over it. I hope.

Really, how do they not tell parents that this is what will happen after the surgery? I know, I know, it's just more stress....But, here I was, all geared up, all prepared for the actual surgery, for the days in the hospital, for the coming home, and I'm completely slapped in the face with the fact that my kid acts weird now. I'm sorry, I don't know how else to put it. He looks great. He is externally healing well. Everyone is impressed at how "well" he's doing. But he's not quite the same bubbly little guy that I knew during the day, and he completely freaks out at night. He doesn't like to be left alone. He has nightmares. He's impatient. I'm ok with all of that, but I didn't expect it. Come on people, where was the warning label?

Second, I, myself am having some post trauma issues. I close my eyes and keep seeing my little guy stop breathing. I see him trying to pull his eyes open. I see him lying there in so much pain that it hurts him to hold my hand. I know, this too will lessen with time. I know, this too is compounded by the fact that we're all not sleeping that well. But it still stinks.

On top of everything, I feel guilty. I feel guilty that I'm having such a hard time with this when so many parents go through so much more. The parents of children on the oncology floor. The parents of children on the transplant list. The parents with no insurance. Yet, it's not a "pull yourself up by the bootstraps" kind of thing. I haven't lived a cushy life. I've swam in the pool of adversity; as much as most and more than some. I can organize, compartmentalize, and cope with the best. I pray. I've been prayed for and prayed over. I still feel guilty. I still get depressed. I still cry.

I'm sharing all of this not just for the sake of babbling on, not in hope of receiving any kind of pity or encouragement, but in the off chance that anyone else has or will ever feel this way. I thank God every day that I have Him to lean on, Him to carry me, Him to pick me up when I can't go on. I thank God that I have Him to look up to, instead of looking down at the vast expanse of helplessness that I'm sure extends below me. Friends are wonderful and family are a blessing, but people have a fundamental flaw....they are people. They say stupid things without realizing it. They ask ridiculous questions. They forget. But God never forgets, never belittles, never minimizes, and is never too busy. He always reassures, always gives, always knows what hurts, why, and how to fix it, as long as we ask. So ask. And then cross it off of your list of things "they" never told you.

No Greater Joy

After what we have been through in the last couple of weeks, I have two wishes. I hope that I remember it in detail, and I hope that am brave enough to tell our boys this story and others enough times and in enough ways that they are able to see how the hand of God has worked in their lives.

3 John 1:4 I have no greater joy than to hear that my children are walking in the truth.

On some practical notes....

James is healing incredibly well. We had our first follow up with Dr. M today and he and all of his staff are just amazed at the progress of his healing, and the results of the surgery in general. His stitches are flat and the skin is pulled together so perfectly that there is less than a pen line of scar that will show after it heals. He is still having trouble sleeping on and off, so pray that he'd be comfortable, especially at night. I had nearly forgotten (after 3 months of sleeping through the night) how fast Mamas go crazy on sleep deprivation!

Speaking of Mamas, mine left today to go back home. It might have been the saddest thing I've ever seen to see my two year old standing on the front step as our neighbors pulled away to take Mom to the airport. He realized as they pulled out of the driveway that she was really leaving, and he started to cry as he blew kisses, but then stopped, saying, "No Grams, no." Seriously. The.saddest.thing.EVER. It's making me cry even now. The silver lining to that story is that the reason he was so sad was because we had such a GREAT time with Grams. While helping Mom with the baby each day (and helping Mom get a nap or a break too), Grams took the best care of Big Brother. He was enamoured from the minute she said "new Elmo toy." New toys aside, Big Brother got to go on walks on Grams shoulders, to a new park with a sand pit, water the flowers in his pajamas, and play endless games of ball, choo-choos, cars, bubbles, and of course, have super-long story time. She taught him to say 'three', 'turkey' and 'awesome.' She even got him to eat meat (a feat beyond that of moving a small mountain)! We are really going to miss Grams.

Plop Plop Fizz Fizz

Oh what a relief it is to have my mother here! You know how mom just knows how to make it better? I don't know what it is, but moms just seem to have a magical comforting power. James is still not sleeping well (awake from 12am-3am or more), and with the 5 days of sleep already lost in the hospital, I'm beyond exhausted. I'm so happy to have some help with Big Brother and a chance to nap when James naps. Plus, grandma brought the cutest hats!

My prayer today: that I might have faith like this.....Acts 20:24 However, I consider my life worth nothing to me, if only I may finish the race and complete the task the Lord Jesus has given me—the task of testifying to the gospel of God's grace.

Yesterday I took James out for the first time. We ventured all of 6 minutes away, to the grocery store. I didn't think anything of it, until we got there and while I was pulling out a cart to use, I realized that the teenager re-stocking the carts was staring at us with a horrible look on his face. Now, I'm going to admit that I have always enjoyed that people would stare at my sweet babies and then tell me how cute they were. And of course, to me they both have always been beyond beautiful. But that teen was not the only tacky person at the grocery store yesterday. We received several ugly stares, and one man even looked at me like I had done this to my child. Ugh. I cried. Why can't people be more compassionate? Why can't they just ask what happened, or say "poor guy," or better yet, find something beautiful to comment about, like his great big blue-green eyes?

My spirits were thoroughly lifted when we got home, and Big Brother was there waiting for us. He ran out to the car, yelling "Bro-Bro." He wanted his brother out of the car immediately, and down on the driveway where he could see him. This was it, the moment I'd dreaded. Big Brother looked at James from all angles, carefully, slowly, and then simply said, "Owwww." Then life went on as usual. Big Brother has been very careful, and with one warning, hasn't even tried to touch Bro-Bro's head.

Home Sweet Sweet Sweet Home

Wow, what a difference 24 hours makes! James continues to heal, and the swelling continues to go down. The process of coming home was a little long. We had to wait a really long time for everyone who needed to come by (rounding docs, our nurse, the would care nurse, etc.), but we did have a massage therapist come in who put James to sleep for 2 solid hours, and seemed to help his poor tummy some too! We didn't care, we were just happy to get to go home.

BUT, we came home to balloons, flowers, fresh groceries in the fridge, super sweet mail, a new blankie and teddy bear, books, and (perhaps best of all) a healthy dinner! I just cried. How sweet it is to feel so very loved. We have been absolutely exhausted for the last month, and it is just such a relief to be home and have our sweet boy home with the worst behind us.

We still have some challenges ahead....James panicked several times last night, screaming and needing to be held for a long time. He was in enough pain to need the maximum of everything we were allowed to give him, and his tummy is still upset. He has some rashes from the heat and moisture under all of the swelling he had, and a sore on the back of his head from the pressure. But, he's eating well, and in less pain. He really wants to be held, he fusses a lot of the time, and he's extra tired, so it's kind of like having a newborn again, but it was good to be in our own beds at least. James likes to be home too...the familiar surroundings and routine is getting him to smile more and more.

I ran into Dr.M's assistant on our way out of the hospital, and found out why everyone seemed so incredibly impressed with the surgery. Apparently, they have had a few cases more severe (in shape), than his, but not many. It is amazing what they were able to do. Then, he hardly bruised at all, which is unusual for the amount of work done (there was a little guy down the hall that was black and blue all over his head and face). On top of that, Dr.M's stitching is absolutely perfect...tiny stitches with the exact amount of tension needed to close the skin.

I have to say thank you to everyone who has been reading about our "adventure" because we feel like we walked along the edge of a Grand Canyon of horrible possibilities, but your prayers and love kept James safe. We thought we were going to lose him when he stopped breathing after the seizure, but we didn't; the doctors thought he might have an infection, but he didn't; we thought he might have pneumonia, but he didn't. It's just amazing.

Do you know what else is amazing? Check out some of these pictures......

Before and after surgery shape:

Saturday versus Tuesday morning:

Thanks for keeping up with us through this process. We will keep posting as James heals!