Thursday, April 20, 2017

To Surgery Or Not To Surgery

Every year Caedmon goes in to check all his functions. They check to see if he has lost anything from the previous year. They check to see if everything is healthy. They check for reflux. They check to see if things are working as they should. They check to see if he is happy with his current state of things.

Everything looks great! Everything is healthy and looking as it should.

This year we had to bring up the fact that Caedmon has experienced more issues between catheterizing. He takes medicine to try to tighten up the sphincter muscles. We wondered if his dosage needed to be increased. 'No,' the doctor assured us.

Our only option right now would be an irreversible surgery that would involve taking gristle off a muscle and wrapping it around the sphincter, making the sphincter more difficult to get through to cath, which would make it probable that he would want/need another surgery that would put a port through his belly button into his bladder, which could increase the likelihood of infections and also could affect the health of his bladder and kidneys.

So, choose your kid's adventure: possible occasional embarrassment/maintain health/no surgery or surgery/possibly decline in health/more chance of not standing out in a crowd in the wrong way.

I hate the irreversible decisions. I hate that there aren't any better options for him right now.

I love that he is so healthy. I love that he hasn't seemed phased by it all yet.

I want him to be able to accept what he has. I want all my kids to be able to accept what they have. I want me to be able to accept what I have. It's not really different. It's just different issues we are all trying to work through.

You are an amazing work of art, son. So you tinkle a little when you laugh or when you run or when you're nervous. You know what? A lot of people do that who have average, normally functioning bodies. You are not alone.

We think we are going to hold off on this decision and let Caedmon make it when he is older. We are so grateful for the option to wait. We are grateful that he is healthy and strong. We are grateful that in this one area we do not need to make a spur of the moment decision.

We are slowly walking in the path of 'being thankful in all circumstances' 1 Thessalonians 5:18. Some circumstances are easier to be thankful for than others.

Thursday, February 16, 2017


Caedmon and I got sick.

A head cold.

Normally not a big deal, always thankful for a cold over a stomach flu. This one seemed to hold on for days and days and days. Stuffy noses, tired eyes, achy bodies, interrupted sleep. I rarely take medicine but actually broke down and begged Adam to bring some Sudafed home.

Glory! Hallelujah! I could sleep!

Caedmon seemed to be getting better too. There were less dirty tissues to search for around his bed in the mornings. He seemed to be sleeping better. He had more energy. We sent him back to school.

Then he started complaining about headaches. Oh dear Lord! As every parent of a child with hydrocephalus and a shunt understands, as soon as you hear the words, 'Mommy, my head hurts!' your stomach tightens and you start going through the mental list of shunt malfunction. Usually Caedmon gets headaches when he's coming down with a virus, not finishing up one, so it couldn't be that.

Oh no!

We've had this shunt since he was two months old, he just turned 8. He's due. I know some people who have had 10 or 20 shunt revisions in short life spans. The luck is turning!

We sent him to school. It seemed like the headaches were going away. I stopped by his school to take care of his needs, he looked miserable. He couldn't focus, couldn't sit still. 'My head hurts, Mom!'

I popped him in the car, called work to tell them I wouldn't be in, called Adam for the neuro's number he has saved in his phone (yeah, I need to change that), brought Caedmon home to rest while we waited to hear from neuro. As I was trying to make him comfortable, he looked at me with tears in his eyes and asked, 'Mom, am I dying?'

Sucker punch to the gut.

I assured him that we would figure out what was going on and take care of it and he would be better soon.

I then had a brilliant thought that you probably already had in reading this: I needed Sudafed every day of the last 6 days, I never gave Caedmon any kind of decongestant. Ah ha!

It's been two solid days of giving him regular decongestant and this afternoon he finally said, 'Hey! My head doesn't hurt anymore!'

Okay. We can breathe again. Breathe into that knot in our stomachs. Let all the tension out of our necks. Allow God to give us that peace we've been pushing away.

Every time we go through this circus we learn a few more things, find more solid footing for the next time, learn a little more about Caedmon's body and how it operates and what it needs. By the time he's 40, we should be really, really good at this.

Wednesday, December 28, 2016

Epilepsy Too?!

A few months ago I was yanked from a deep sleep, early in the morning by my husband's panicked voice calling down to me from the floor above.

'Kristin! Kristin!'

I could tell by the tone that something was very wrong. The tone and the fact that he doesn't tend to wake me up by shouting my name.

I ran upstairs and down the hall to the room our older boys share. The light was on, Adam was up on the top bunk with Damek, and Damek was in the middle of a seizure. I had only seen one other seizure before in my life, but I knew without a doubt that that was what I was seeing.

'Call 911!'

I grabbed Adam's phone and dialed. It rang and rang and rang and no one picked up. I thought I had the wrong number so I looked at the phone. No, right number. I hung up and called again. This time, someone picked up. I calmly explained the situation, while saying good morning to Asher and Caedmon. I felt completely in control.

As I let the firemen, then the policeman, then the paramedics into my home pre-5am, with my pajamas on, my hair unbrushed, my home the obvious residence of young children, it was all totally normal. I was the hostess welcoming our guests.

Damek came out of the seizure and was completely confused with why there were all these strange people in his bedroom looking at him. I held him and chatted with him and our new friends. As they saw that he was pulling out of it and would be fine, they left, first the policeman, then the firemen, and finally the paramedics.

We were left looking at each other. Quite the exciting morning.

Adam packed a bag and headed to the ER at Children's with Damek. I got the other boys ready for the day and got them both to their schools. I waited for word from Adam but it didn't come for a while. I knew it would take a while. There are always a million questions to answer and possible tests run. But I hate being the one sitting at home, waiting.

Finally, Adam called as he was dropping Damek off at school.

'They think it's epilepsy. He has a sleep-deprivation study scheduled in a couple of weeks.'


Epilepsy. Epilepsy? Epilepsy?!

Cue the guilt. Cue all the feelings of 'What is wrong with my body? How did I fail my kids? What is wrong with me?!'

I mean, one child with a disability or a difficulty of some kind a mother thinks, 'Maybe I ate something wrong or did/didn't do something'; two kids with disabilities/difficulties a mother thinks, 'What is going on here?'; all three children with disabilities/difficulties a mother thinks, 'My body has completely failed my family! How can this be?!'

I wonder sometimes what it is like to have normally developing children. What is that like? What is it like to just think a cold is a cold and nothing else or the flu is just the flu? What is it like to go to parent-teacher conferences and just have the parent and the teacher? What is it like not to have to visit a child's school multiple times throughout the day to care for your kid? What is it like to not have multiple medications to keep straight? What is it like to watch your children make typical progression on every chart at the doctor's office? What is it like to sit back and just watch your kids grow with little to know input from you?

I really didn't even stress out about the epilepsy, I just thought, 'Well, there's one more thing. Alright, what do we need to do about it?' It just seemed right. 'Yep, that sounds about right.'

The great news is that the doctors are pretty confident that this is a benign epilepsy, meaning Damek should outgrow it by the time he turns 15. And this particular type is one that normally strikes at night, while he is sleeping and typically acts like a tingle on one side of his face. Rarely does it move to other parts of the brain and cause a grand mal seizure, like we saw that early morning.

But I am left with the feeling of failure again. What is going on? With both Caedmon and Asher the genetics counselors reassured us that it was not a genetic issue, just some random, fluke thing. But sometimes, in my weak moments, I think they must be wrong. It must be me. It has to be.

And what good does that thinking do? Absolutely none. So I allow myself my 5 minutes of pity, cry my tears, pray my anguish, stay up way too late writing it all out so I can get it out of my brain. Then I sit up straight, dry the tears, thank the Lord for the good He does every moment, go kiss my boys as they sleep, and allow myself to get the rest I need for a new day tomorrow.

Wednesday, December 14, 2016


Once or twice a year Caedmon has to go in to get a medical device changed out. It has been such a source of anxiety for him that what should typically be a quick, in-office procedure turns into an OR visit involving anesthesia. This time around he was determined to be brave.

'Mom, I won't push the doctor's hands away this time. I promise. I will just lay still.'

The whole trip to the hospital, Caedmon kept repeating that he would be brave, that he would just let the doctor put in the device. The whole long wait in the examining room, he kept a courageous face and cheerfully chatted with the nurse. When the doctor was running late and the nurse let him play on an iPad while he waited he was chipper and chatty. When the doctor finally came in the room and began to explain what would happen and what she was going to do, he smiled. But you could see the tears starting to well up in his eyes and the look of terror behind the smile. When the time came to actually go through the procedure, he turned to Adam and started to cry. Adam asked if Caedmon wanted Adam to hold him and Caedmon agreed. Caedmon screamed and cried throughout the few, eternal moments it took to get the old device out and the new device in but he held as still as he could, much different from previous experiences.

As Caedmon and Adam drove to school after the procedure, Caedmon apologized for not being brave. Adam assured him he was so brave and Adam was so proud of him. Caedmon asked Adam not to tell me anything because he wanted to tell me all about it.

When I showed up at his school a short while later to help him in his daily needs, he told me how scared he had been and how hard he had tried not to put his hands out and push the doctor away. 'It hurt, Mom, a lot! But it was a refreshing pain.'

(Let me just clarify but saying, the procedure actually is not painful, even Caedmon admits this when he has had some time and space to process, it is the anxiety and fear that cause him to imagine this is going to be so painful.)

His words, 'refreshing pain', kept resonating around in my brain throughout the rest of the day. That boy! I thought of how many times I have had to work through some really painful, difficult things, things I have been putting off because I didn't want to have to deal with them, and when the hard work is finally done and the relief at facing it and being on a better path sinks in, I would probably say that the pain was refreshing, it refreshed me and made me better than I was before.

I also thought of how so many parents make it their purpose as a parent to keep their kids from any pain. I never had that option with Caedmon. He was born into pain, so to speak, surgery within the first hours of life. Has that taken away from him, though? Has that hampered his growth, his spirit, his character? I would argue, it has enriched him, and me, and the whole family. Walking through every painful experience has taken away the fear of pain and difficulty. It becomes part of life, as it should be, because it is part of life, for every one of us. Keeping our kids from pain doesn't make them better people, it merely puts off the inevitable and stunts their preparedness for the rest of life. Let your kids feel pain. Let them make mistakes. Let them try and fail. Let them stumble and fall. Then work together to learn something from the experience.

Pain is refreshing.

Thursday, December 8, 2016

Hard And Good Times

I know I've posted before about how difficult IEP meetings can be. The focus on what my child is failing in, short on, missing out on goes against every grain of my being. Tell me what he IS doing, let's celebrate that and leave it there.

Typically IEP meetings are scheduled several weeks and sometimes even months in advance. There's lots of time to prep for it, buy a little chocolate as an incentive to make it through without crying, and talk to mentors and friends about how best to proceed. Considering Asher's Kindergarten year is fast approaching, this is one of the more serious IEP meetings and includes the psychologist who just completed his psychological eval and IQ test. So, lots of preparation would make total sense.

Except I got an email late Sunday night telling me there had been a cancellation for THIS Tuesday and would I like to meet then? I was under the misunderstanding that this would be only a meeting with the psychologist and teacher, only to go over the eval and IQ. Since I had just done that for Caedmon a few months ago, I thought it would be no problem! And then I walked into a room full of therapists and the head teacher and realized, this isn't just a quick update.

No prep time, for brain or heart. Here we go!

I am not going to outline all the bad stuff. We know he has his own developmental curve, his own way of living life and accomplishing what he needs to accomplish. He is his own drum section. And it is working for him.

The first thing every person in the room told me was how much Asher was loved. How he was a kind, thoughtful, caring little gentleman and one of their favorite students. I know they could say that to every single parent that walked in the room, but it felt sincere and heartfelt and came from all of them.

His teacher said, 'Let me tell you a story that describes Asher in my mind.'

She proceeded to tell me of how one day, a number of months ago, the teachers and therapists had an early morning parent/teacher conference. Just before school was to start, the meeting was wrapping up, but it was very heavy in the room, the parent was in tears, and no one was sure just how to close up the meeting. Just at that moment, Asher came sauntering into the room, took in the scene, walked up to the person closest to him, reached out and shook their hand, holding the hand in both of his, looking them in the eye, smiling his irresistible smile, and saying a warm 'hello'. He continued on around the circle table, doing the same for every single person at the meeting. His teacher told me, 'He just instantly lightened the mood of the entire room. Where there were tears, there were now smiles. The mother told me, "That was just what I needed." She left with hope for her own child because of what she saw in Asher.' The mother was a parent of another child with Down syndrome. She had been very upset, wondering what the future would look like for her own kid.

As the teacher finished telling the story, several of the therapists smiled and said, 'Ah, Asher!'

I was in tears, thinking about the hopelessness of that mother, something all parents with kids with special needs feel from time to time, so thankful that my little boy could be a conduit for hope and joy in her heart at such a hard time.

Every person has a purpose in this world, to bring more light into it, more love. Not more money. Not more businesses. To those who doubt the worth of children with special needs, your priorities are obviously mixed up.

Today I was on my third day of a new part time job at a nearby elementary school. As I was dismissing students, a lady came up to me. 'Are you Asher's mom?' she asked out of the blue. I assured her I was. She told me that she worked part time at his school and part time at this school. 'I thought that's who you were,' she said. 'I just want you to know, I love Asher so much! Have a great day!'

Every person has a purpose.

Friday, August 19, 2016

Essential Asher

I have believed for a long time, since Asher was just a wee babe, that he is one of the most emotionally intelligent people I know. From an age when he couldn't really be expected to talk, even were he a typically developing kid, he would seem to sense when someone in the family was feeling upset and try to connect with them in some way: touching, holding hands, putting his face next to the upset person's face. 

Since he has begun to verbally communicate one of his first phrases was, 'You okay?' And it's not just a flippant, one time, perfunctory 'You okay?' when he senses someone is hurt or upset. He says it over and over, with the person's name if he needs to get their attention, until the person gives him a satisfactory answer. If the answer is, 'No', he is immediately there, hugging, consoling, possibly tackling (if it's a brother). If the answer is, 'Yes', he moves on with whatever task he was in the middle of.

This evening was a tough-on-patience kind of time. Every one of my boys, in their own unique way, was losing it, and I, in turn, was losing it. With Asher it came to a head surrounding his pottying or lack thereof. He has recently decided he needs privacy in the bathroom but we can't give it to him completely because he may throw something in the toilet or wander around the room or pee in a corner. So, we play this game of 'Mom/Dad will stand over here, you go potty.' Sometimes it works, sometimes it doesn't. Tonight it didn't. Even after throwing him in the tub and turning on the water, which works about 50% of the time, there was no pee. But he did decide to dribble on the hall carpet, and on his uncovered mattress (waiting to be made after an accident the night before). 

I felt so frustrated! And so defeated!

He smiled up at me and I did not have a ready smile back.

'You okay, Mom?'

'You okay?!'

'No, Asher. I'm not okay. I'm frustrated. Remember, potty is for the toilet.'

'Yeah! . . . You okay?'

This time closing in with a hug, 'You okay, Mama?'

'Asher, potty does not go in the hall or on your bed. It goes in the toilet.'


Now putting his forehead against mine, 'You okay?'

I didn't have the energy to keep the grumpy face and broke into a big smile.

Big, slobbery kiss on my lips.

'You okay?'

'Yeah, Buddy, I'm okay.'

Huge bear hug. Any leftover tension just drained completely away.

What a gift this boy is.

Wednesday, June 15, 2016


We were blessed with a gorgeous evening! Asher and I went for a walk down some pathways through our neighborhood. The air was warm and clear and all the humidity of the last few days was blown away with the thunderstorms. There were huge patches of blue sky, covered by an occasional large fluffy cloud. We walked down a path I hadn't been on since fall and was awed at the number of wildflowers nodding at us in the clean evening light. I was contemplating how every single flower is a visible reminder of God's love for us, something I had spoken about at an event just a few weeks ago, and now here was a whole meadow that felt like it had been placed there just for me, just for tonight.

And then they passed.

A mom. Three boys.

Three boys roughly the same age as my three. All riding bikes, the mom bringing up the rear. They seemed so free, so at ease. The mom was completely relaxed. She knew her boys knew what to do and where to go. She had no fear that one of them might careen off in the wrong direction, most likely toward the busy street ahead.

And it hit me hard, as it does occasionally:

What is that like?

What is it like to be just a regular mom?

With regular kids?

With nothing that makes you stand out in a crowd?

What is it like to spontaneously go for a bike ride with all three of your children?

What is it like not to have to plan so much ahead that it never feels like a spontaneous decision?

What is it like not to have to hook up adaptive equipment?

To just let the kids hop on and ride?

What is it like to allow freedom to all of your children without concern for anyone's safety?

What is it like for all of your children to be able to use the restroom with little to no assistance from you?

What is it like not to have to do hand-over-hand cleaning of the bathroom floor for the bazillionth time that day because your child thinks it's fun to spray his pee everywhere? (Of course, she's the mom of boys so she may actually be doing that but not in my dream speculation.)

What is it like not to have your day rigidly scheduled with medical procedures, therapy exercises, and personal care activities?

What's it like not to deal with behaviors? Panic attacks? Spitting? Hitting? Kicking?

What is it like to be 'normal'?

I walked under my own personal storm cloud as I pondered that for most of the way home. Wouldn't it be nice, just once, to have that? But of course, I would still want my kids. I wouldn't want three other kids. I want MY boys, but without the struggles. But would they still be my boys? Would I even recognize them? How can you have the same of something if the things that make that something what it is disappear?

I can't. I can't have my boys, my family, without the things that make my boys what they are. All the difficulty, the trials, the slog are making a beautiful something that wouldn't exist without the tough. I don't even really know completely what that beautiful something is but I see it happening. I see it transforming us into better, more caring, more loving, more giving, more open people.