James got a haircut. It's true.

  

I was cutting the boys hair the other day and was just about floored when James sat in the chair and asked me to shave his head bald.  First of all - that kid has had strong feelings of hate for clippers since the last time I used them on him well over a year ago.  They buzzed against his shunt and that was it - game over.  I mean, I get it.  I think that has to feel pretty weird.  But let me tell you, I sure did not expect him to invite me to try them again.

Also, more importantly, I just love his long hair.  His hair is stick straight and very fine, but he has tons of it, and, I don't know, I guess it's kind of pretty, but he's my little guy, and I love him the way he is, and my heart wasn't braced for a drastic change.

Instead, we came to a little compromise.  I cut most of it short with the clippers, and then shortened up the top with scissors.  It's a few days later and I still can't stop staring at him. 

So, it's windy out and he's playing, and his hair is wild, but surely you get the gist.

 Is that not one incredibly handsome little three year old?  He just absolutely melts my heart.

 Also, you can kind of see that he has the an almost-gone black eye on his right side (that he bumped on something, but never did tell me what it was?), and burned ears on top, because, duh me, his ears were constantly covered by hair for months and were all of a sudden completely exposed.  Great thinking on my part.

Also, this gem of a kid was there.  He's golden, I tell you.  All courage and goodness and bravery and heart. He brings me endless joy.  He has his moments here and there of getting too rough, but I tell you, all in all he us just gooooood to the core.

And this chubby bubsy.  Love him!  And his blonde curls (speaking of hair)!

This is James a few weeks before the haircut.

Here he is after.

It's such a huge difference to me!  I love it both ways, and he's so adorable.  I just can't get over how drastically different a few inches is!

What do you think?

feelings, thoughts, and this big beautiful mess

I got my feelings hurt today.


A woman who knows me and my family really well, and who I know cares a great deal about us, passed judgement on me as a parent.  She, kind of loudly, very plainly, and quite publicly, directly and by implication, said that some issues one of my children struggles with are a direct result of our decision to homeschool.

I feel good that I stood up for myself, and for my child, in a firm but kind manner - one that allowed our conversation to continue without apparent tension.  Good for me, right?  But I'm still so frustrated.  I want a chance to explain some things that need explanation.  I can't tell if it's because I feel defensive or because my pride is hurt or because I could use this woman's genuine understanding and support.



Am I sitting here thinking I'm a great parent, above reproach?  Absolutely 100% not.  My perfect parenting ended a looooong time ago.  But I am constantly trying, and I get a few things right.  Am I egotistical enough to think my kids are great because of how I raised them?  No way.  And, on the flip side, I'm not naive enough to think that all of their problems and struggles are because of something I messed up.

Some of them?  Sure.  I have made some big mistakes.  And I am constantly aiming to improve who I am as a person, as a wife, as a mom.  Growing and changing is part of life.  And I've learned some big and important lessons along the way.



Part of me really wants to say some not-so-nice things.   I feel so much frustration for my children who struggle with medical issues that effect their entire lives, but yet look like every other person.  I feel for any person living with varied abilities, obvious or not.  Because it's all hard.  And it's all not fair.  It has nothing to do with fairness.  And sometimes it is just plain horrible.  And, yeah, I know that's life.  I get that life is rough.  Believe me, I've lived it.

But I still can't imagine many more painful things than seeing my own child tortured from within, completely helpless to relieve their suffering, medicating them only to slightly relieve their pain, knowing their future is forever altered, praying for time, anything for more time.

And I've experienced it both ways - I have a child who was born with a birth defect, with hydrocephalus, and his life is forever different because of it.  His entire life he has been the recipient of prayers and awe and support and amazement and miracles.  And I have another child who struggles with a hidden illness every day of their life, but because of the nature of that illness, this child is shunned, judged, chastised, criticized, analyzed, pushed, misunderstood.   (To be honest, this child has also received prayers and support, but just on a much much more limited scale - and we are deeply grateful for all of it.)

Both of these kids were born with their illnesses.  Both illnesses are caused by a mixture of genes and environment and nutrition and circumstance and who knows what else.  Why is it that this world thinks that one is less worthy of support than the other?



But, I think the most frustrating part is that I get it. I really do.  I know myself.  I know my weakness for judging others and thinking people should do this, or certainly shouldn't have done that, and if they only did things in the same surely inspired way that I do things, well, then, their kids wouldn't be the way they are.

It's so wrong!  So very misguided and wrong-thinking!  And I hope I just plain stop it, and remember well and clearly that we are, all of us, basically big imperfect messes, and still so very very beautiful and worth it, and every single one of us is a child of God.  And if He loves us, and He does, than the very least I can do is love others.

And it's so simple.  And so deeply hard.  

a story about James and his imaginary friend who has the funniest name ever

Get a load of this kid.  I mean.



Okay, so all of a sudden about two weeks ago this new person popped into our lives in the form of James' imaginary friend.  His name is Crucio. ( like the torture spell in the Harry Potter books!)

This guy Crucio apparently lives in a house by himself.  It's in Globe, a couple hours away.  Crucio doesn't have parents, and is old enough to drive.

Crucio's house is where James keeps all of his cool big-kid stuff, like his 2 MP3 players, and his multiple DS's and also his x-box.

James loves to tell us about the fun things he's done at Crucio's house.  The 'dad' movies he's watched.  The quads he's ridden on.  Stuff like that.

He always lets James play on his computer.  He also gives James bloody noses and lets him play the Wii all by himself.

His skin is red and his hair is blue.  Yesterday it was black.

He likes to battle.  He also comes back alive when he's dead.



The last couple of days some new friends have joined Crucio - one called Coco, one called Aiten, and some more.



We've had plenty of pretend play in this house, but this is our first imaginary friend.  It's crazy!  He talks about it all so matter-of-fact-ly and it's SO hard to keep a straight face about it all, but it's suck a kick!

one simple trick to diffuse toddler tantrums

I've mentioned before how blessed I feel I am to have older siblings.  One of my favorite things is that I get to look at them and how they've done things, and learn from them - especially when it comes to one problem that most parents say they have a hard time with -  toddlers and temper tantrums.

I started noticing years ago that some kids, when they really got riled up, seemed to not be able to let it go.  Ever. At all. At least it seemed that way, when they were in the middle of throwing a loud kicking and screaming fit.  But, I've also seen kids who seem to never really lose it.

Sure, some kids are just super mellow.  Every kid has a different personality!  But, when you've seen a kid get really worked up over something, and then you see their parent address it, and that same kid calms down instantly, you know you're on to something, right?

I've seen my sister and sister-in-law do this for years.  I'm sure I know other people who do it with their kids, but I was around my sister-in-law more often when I first had young kids hitting the toddler years, and how she parented was something I certainly noticed.

So, here's how it goes -

Your kid wants something.  Like, I don't know, to eat a popsicle.  But, it's not a good time to eat a popsicle.  You know your kid is hungry, and it's almost time for lunch, and a popsicle is so not going to happen.

But your kid really REALLY wants that popsicle!  They won't take no for an answer.  You can see they are tensing up, getting frantic, and ready to pitch a world-class fit.  Here's what you do.

1 - Stop what you are doing.  Right that very second.  Whatever you are doing can either wait while you talk to your child or wait while your child has a meltdown all over and around you.  Which would you prefer?

2 - Get on their level.  Pick 'em up, or kneel down, or hold 'em on your lap.  Whatever you need to do to show your kid they have your full attention, and that you see their little pleading eyes.

3 - Ask them how they feel.  Some kids will be able to describe it, and some kids won't.  If your kid can't or won't describe how they feel, start giving them a few gentle suggestions, like, "Man, you must be so frustrated right now!  I bet you want a popsicle sooo bad!"

4 - If your kid can tell you how they feel, echo it.  If your kid says, "I mad, mom!  I'm gonna hit you!", say back to them something like. "You are!  You are so mad right now!  You are so mad you feel like hitting me!"

5 - Keep this little feelings conversation going until you can successfully do one of these things -

DISTRACT THE KID    or   MAKE THINGS SILLY

6 - Now it's time to move on.   I find the best course of action is to get back to what you were doing and have them help however they can.  When they help you, they feel big and important and in control, and that's what every person likes to feel, right?



This is the part where you have to be on your toes a bit. Once your kid has started to get upset, it's easier for them to slip back into it, isn't it?  At the very bottom of it, most toddler tantrums are thrown for these reasons  -

- your kid is too tired! (give 'em a nap or down time)
- your kid is too hungry! (feed 'em)
- your kid feels like he's not in control! (give him choices.  often!)

Casually and calmly address whichever issue you think is at the bottom of your kids' fit.



I hope this helps you as much as it helped me years ago!  I've never really dreaded the toddler years (except for potty training, but that's an entirely different thing!!) and I think knowing about this trick saved me.  And the best part is, you can use this anywhere; grocery store, kitchen, park.

And your kids will be perfect little angels just like mine!

(i kid.)

James' 3 year MRI

I'm not a big worrier.  Okay, maybe I am.  I'm pretty good at taking life as it comes, but over time I've realized over and over that we have really, truly, deeply hard and helpless challenges in our lives sometimes.  There are many things that have happened in the last year that have weighed on my heart and mind.  Many times when my thoughts were so consumed with sorrow, whether for someone else or selfishly for myself, that I went through the days in a bit of a haze.  Through these times, I've also been incredibly blessed to feel peace and love, and I'm immensely grateful to know my Father in Heaven is mindful of me.

This week, James had a routine MRI.  We've been excited for this one for the last couple of years, because we felt it would confirm to us what we believed about him - that he'd "grown out" of the hydrocephalus.  We thought the aqueduct in his brain that was blocked or not fully formed had spontaneously healed or opened up, and that was why we were seeing him succeed so well in the rest of his life.

Obviously, I'm using past tense up there.  What we thought isn't what happened.  When going over the MRI with the doctor we found out a few important things.  One, his aqueduct is still blocked and not allowing fluid to pass into the fourth ventricle.  That was a disappointment.  Two, his shunt is "shallow" in his ventricle.



This is a generic drawing of a child with a shunt.  You can see how the shunt sticks well into the ventricle (the area with the "water" in it)  in order to collect fluid and drain it into the abdomen.  In James, that part of the shunt is near the edge of his ventricle.  In fact, Tyler described it like this : there's the C shaped ventricle, and then an area kind of like a canal that is a path to the shunt.  That canal is maintained by constant pressure from the presence of the cerebral-spinal fluid.  Without the canal, the shunt isn't in contact with the shunt.  So, basically what this means is that easily, and who-knows-when, the shunt will fail.

We've unfortunately seen from a distance what this means for other children with hydrocephalus.  The symptoms of shunt failure are horrible, in that they are so normal - headache, irritability, vomiting.  And sometimes not even those symptoms appear - sometimes all a parent has to go off of is just a feeling that something is not quite right.  So, in other words, diagnosing a shunt failure is not easy.  And then comes the treatment.

All in all, I'm very aware that we are incredibly blessed - James has no seizures, no measurable developmental delays, no current health issues, other than being a few pounds lighter than his 11 month old brother.  But, I am also disappointed.  I'm sad for him that he has a lifetime of struggles with all of this stuff ahead of him.  I think without realizing it I got ahead of myself and started to think just a little bit that this would somehow all go away and just be a non-issue for him.  And that was wrong.

On a lighter note, James is absolutely amazing.  He was so excited to have to go to the hospital.  He was asking about it for weeks!  He even told me he was going to stay there forever, and only agreed to come home when I told him if he did that I would be so sad I'd cry.  He headed out on a pretty empty stomach early in the morning with Tyler, all lit up and thrilled.  They traveled to Phoenix through a snow storm, even stopping to help dig someone out of a snow drift.  They got there a little late, but as James was being put under, he was still calm and happy and tapping his hands on the table under him, left, right, left, right until he was asleep.  Finally, after the MRI, and later, the doctor appointment, James was able to eat, and got to go to Panda Express.  So fun!  And then they even got icecream on the way home!  He totally deserved it.  He's just an angel.  And so smart and so good.

Also, the next day, he decided he was potty trained.  And that is that.

What a kid!  I sure adore him.

Our sweet baby James isn't a baby anymore!  Now he's a big brother, with more than a little love for his "baby wewis".  He pays him such attention and takes such great care of him - it's a beautiful thing to see.  Most of the time these days I have Lewis in my arms, nursing, and James taking up whatever of my body space is left.  Like right this very second, I'm nursing the wee one, typing with one hand, James is seated on my left leg and is kicking the computer table (instead of going to bed).  I feel everything like a pretzel, and nothing if not cozy.

I'm trying to soak in every one of these sweet moments, because I know I'm going to blink one of these days a these little ones will be ten, and then another day I'll blink again and they'll be leaving this little house of ours.  I know the cliche, but I don't care - my oldest is well over the halfway point to adulthood, and I still feel like a young new mom, only I'm not!  I'm a mom of 5!  And there's nothing in this world I've ever wanted to do as much as being a mom, so I better enjoy it while I can, right?

miracle

Have I told you what a miracle this baby is?  He's a miracle.  A real, honest-to-goodness, God-given miracle.  We don't hear about miracles much these days.  So, if you are wondering, I'll tell you - yes, they still happen. 

 And we're grateful for that fact every minute of every day.

Merry Christmas

to my sweetly persistent sister.

big brother

When you have been the little brother for your whole entire life, sometimes it's hard to get used to being a big brother. Benefactor has been trying to get used to it for 5 weeks now.

The first week or so he just tried to keep straight which baby it was that we brought home. Was is his little friends' baby Levi? Was is his sweet baby cousin Aubrey? He wasn't sure. Some of that is probably because we didn't have a name for baby James until he was 5 hours old. Finally, though, after a week or two, he figured out his new baby brothers' name; Baby Jame.

The second week he just wondered why he didn't get as many cuddles from mom, and why mom couldn't put him to bed every night. He started to get a little tired of all the attention showered on this squeeky little guy, and when he tried to climb into bed with mom in the morning, he found that either she was already up and awake and feeding the baby, or she was really really really trying to get a few more minutes sleep and that Baby Jame was in his spot next to mom, anyway.

The third week Baby Jame and mom were gone in first one hospital, and then another, and he only got to visit mom once. He had the fun of lots of attention from Dad and Gram, and even got to go on a trip to Gram's house, but he still missed the way things were. He tried really hard to be one of the big kids, but sometimes it just wore him plum out, and he would want to rest with a movie in the afternoon, or climb into bed with Gram and Papa during the night, who haven't share their bed with a little one for quite a few years.

To make things a little more lonely for the little guy, his favorite two people on the planet both started school for the first time just three days after Baby Jame was born. Benefactor was extra lonely without the energy and imagination of his older sister and brother, and he didn't know quite what to do with himself in those long hours between 7 and 3. Would he singlehandedly defend the house from the worlds bad guys? Would he build his own towering cities of block with car and train transportation? Would he become an artist, painting paper and self with brilliant color? He tried them all, but settled on the delight of playing thief, stealing toys and treaures from the rich and giving to himself.

These days he is settling into the new normal. He misses Mademoiselle and S.A.M., and loves his Baby Jame. He keeps very busy, what with all the clothes changing and Robin Hooding, but sometimes he gets himself so worn out that the only thing he can manage is crashing on the floor for a little movie. Learning to be a big brother is hard work.

grief and faith

Most of the time I feel pretty great. Capable, energetic, positive. And then something happens, and I feel flooded by stress, guilt, and worry.

A few minutes ago Tyler scratched my back, and it sent me into silent tears. Something about his loving touch made all those emotions that I don't feel 90% of the day come rushing to the surface. This has been happening recently, and it catches me completely off guard.

I think the impact of those eight days ( a pretty short stay, really ), first in the hospital nearby, then in Phoenix Children's Hospital's NICU, is something I haven't really processed yet. I spent the first week home just glad to be here. I think part of me, a very large part of me, was happy to pretend life would just return to normal and I could forget the whole thing never happened.

I can easily look at James in his beautiful wide eyes, and try to coax a fleeting smile from him, and feel like everything is perfect. How can it not be? I mean, he is perfect. He is perfect even though his body isn't perfect. He is a gift of joy and delight.

All that is true. Also true is that as his parent I need to be prepared, educated, and equipped to support him in living his fullest life possible. It's the same goal I have for my other children, but my part in it is different. It's different and unknown, and a large part of it I'll have to figure it out as I go.

Of course, it's okay, probably even good to feel overwhelmed and unsure at times. It helps me recognize the ways in which I need to grow and change. And the tears are good, too, I'm sure. But I don't yet exactly know why.

I do know I have had many trying, even heartbreaking experiences in my life. I have at times felt completely alone, and the only solace I could find was in prayer to my loving Father in Heaven. This last month has not been like that. Our entire family has been uplifted, supported, loved, prayed for, fasted for, encouraged, helped and fed by wonderful, generous, and thoughtful family, friends, and strangers. This means so much to us. I will always be grateful.

james moses

James Moses

follow-up

6 am Friday morning saw us heading down to Phoenix, four hours away, for a follow up with the Pediatric Neurosurgeon at Phoenix Children's Hospital. It was the first of many follow up appointments to come. There were two highlights to this appointment.

1. We were able to look at images from the original CT scan taken the day before the surgery alongside images of the MRI taken the day after the surgery and compare them. It was wonderful to see the amount of fluid already lessening in the post-surgery MRI, and the amount of brain tissue increasing, or responding to the decrease of pressure. This means the shunt is successfully doing it's job. What it means for James, function-wise, is anyone's guess.

2. We were reassured in our assumption that a nurse gave us very conservative advice when recommending that James and I not venture into public for a year. Two months is more like it. After that, we are free to go and do what we like - church, reunions, shopping and more!

Along with those positive experiences I'll share a few milestones, James style. These are things that may not be significant to the average newborn, but are great steps for James to make.

- James is strengthening his grip. Before the surgery, he had the normal newborn vice-grip, squeezing my fingers very strongly, especially as I would hold his hands to help reassure and calm him during various procedures. After the surgery, he had very little hand strength. We have been working with him during his awake times to increase his strength, and it's coming along. He white-knuckled it yesterday.

- James is eating well. He mastered the suck, swallow, breathe combination. This is huge. Because of this he is growing and thriving. Because of this, he didn't need any help getting the nutrition he needed.

- James is starting to hold his head up for a moment here and there. Because of his heavy head, and because of his weakened state, this was something he wasn't able to do until the last couple of days. He still needs a lot of head support, but we're on our way!

- James is very good at making eye contact, and always has been, even post-surgery. But now he is showing signs of beginning to track objects in movement. He's still VERY early in this process, but this is a very good thing. Many infants with Hydrocephalus have significant vision problems, and James might be one of them, but so far, we're headed in the right direction.

James has one other special skill - he can tear his oxygen tube out in a split second. He uses oxygen at night, and I barely get the tube in place and it's torn right back out again. He does this so well that he does it in his sleep. Tube tickles nose, hand shoots up and grabs tube and yanks it out, mom repositions tube in nose, James sneezes, tube tickles nose, hand shoots up and grabs tube and yanks it out. Over and over.

He's so dang cute.

peace

Today I feel peaceful.

I'm typing with our precious James on my lap, and can I tell you, he looks good. Look past the bandages and tape, and he looks just like any other newborn, getting chubbier cheeks, grunting a little in his sleep. This makes me very, very happy.

I think I'm realizing this may be the easy part. As he grows and develops I think I might be wondering a lot. Wondering if I should be concerned that he hasn't done this yet, or figured out that yet, and what that might mean for him. Wondering if he's just hot, or if this is the beginning of a fever. And if it's a fever, does that mean he has a virus, or is he fighting an infection? Does that mean a visit to the doctor, or more surgery and hospital stays?

So, I'll take today's peace while it lasts. I'll cuddle him and feed him as much as I can. I'll hang on his every grunt and squeek. I'll hold his little hands, and look into his wide eyes. I'll change his diaper a dozen times and delight in it's contents, even.

Because my baby is here, and I get to hold him and care for him, and he gets to grow and live and feel our love. And one day of that will always be better than none.

hydrocephalus

If you want to learn more about Hydrocephalus, click here. If you have questions about James and his specific case, feel free to ask them either here in the comments, or by e-mail { ktrmama at msn dot com }

diagnosed

Our new little guy, James, was diagnosed with Acute Hydrocephalus and Aquaductal Stenosis August 22nd, and underwent neurosurgery to place a shunt on the 23rd. He was two weeks old. He is recovering as well as could be hoped from the surgery, and has many years of doctors appointments, therapies, and such to come. I will be sharing updates on James here every so often, as well as my own thoughts, hopes, and struggles.