Hydrocephalus and Chiari awareness

As many of you already are aware, one of my children has spina bifida. One fairly common thing with spina bifida is hydrocephalus. Often times, a child who has hydrocephalus will also have a Chiari Malformation.


September is Hydrocephalus and Chiari Awareness Month. I’m going to try to break down a bit of what each thing means!

Hydrocephalus is what it’s called when the ventricles in your head are too big. CSF (CerebroSpinal Fluid) travels through every single person’s body, from the spine to the brain and back again and is absorbed into the blood stream. Normally this is a very good thing, as the CSF protects the brain. It acts as a shock absorber between the brain and the skull. People with hydrocephalus, however, have too much of it flowing through and it creates larger than normal ventricles. Everyone has 4 ventricles and there is a certain group of measurements that are considered “normal” and if the measurements are larger than that it means that the ventricles are pressing on brain tissue and that can cause permanent damage to the brain. 

What is the treatment for hydrocephalus? Well, that depends. Sometimes the treatment is to leave it alone and see how it progresses. Other times the treatment is to use a shunt to drain the fluid to other parts of the body so that it can be absorbed or removed from the body. If a shunt is the treatment, it involves brain surgery to place the shunt into the ventricles to help them to drain. The shunt can malfunction at any time, and that often means another brain surgery to correct it. Many people with shunts will have several brain surgeries through their lives. A shunt malfunction can be dangerous or even deadly.

How common is hydrocephalus? It is estimated that 2:1000 children born have hydrocephalus.

What is a Chiari Malformation? That is when part of your brain is sliding into your spinal canal. This can happen for many different reasons. The malformation can cause headaches, dizziness, unsteady walking, gagging, fast downward eye movements, numbness in hands and arms, trouble with speaking, memory issues, and much more. 

What is the treatment for a Chiari Malformation? Sometimes the treatment is no treatment at all and just monitoring it. Other times they do a surgery where they remove parts of the base of your skull to try to relieve some of the pressure of the skull on the brain. This can help reduce or eliminate symptoms of the malformation. 

Even with successful treatments both of these conditions have lifelong issues associated with them and must be monitored closely. 

How common is Chiari Malformation? It is estimated that 1:1000 children born worldwide have a Chiari malformation. This number is changing all the time due to medical advances that are making this condition much more well known, and therefore diagnosed more often.

As I’m sure you can see, these conditions are not that well known, but can be extremely dangerous conditions. With proper treatment they are manageable but never curable. If you have either of these conditions, you will have them for your entire life. Medical advances are happening all the time, so perhaps in the future there will be ways to reverse these conditions before they become a problem, but at present time there are not.

Until next time…. Take care of yourselves. ~C


The Face We Show The World

When I started doing this blog, I promised myself that it would be DIFFERENT from all of the other blogs out there… every blog I’ve ever found about special needs parenting focuses on the wonder of it all… nobody really ever talks about the hard stuff.

We were recently at an appointment that took a different turn than the one that I had expected, and it really made me think… why is the face that I show the world always the positive face? Why don’t I ever show the world the face that hurts? The face that cries? The face that thinks how unfair of a hand my kid was dealt? The face that isn’t dealing well with it all right now? Why do I always put on my brave and happy face? I looked deep within myself to try to find the answers to those questions and I really started to think about how I had promised myself that this blog would be a source of SUPPORT & UNDERSTANDING to parents who needed it the most. The more I thought about it, the more I realized that I really need to let down some of those carefully constructed walls that I put up and share even the hard stuff. Because if even one parent looks at this and says “I’m not alone!” then my job is done. I’ve done exactly what I set out to do.

I recently shared this blog with someone who I care about and they said to me “I could never do what you do on a day to day basis, but you make me feel like I absolutely could!” and that’s fantastic… but I wish that she knew that it’s not always good days. It’s not always smiles. Sometimes there are tears… sometimes there is frustration… sometimes there is even some ugly crying late at night when a year worth of really hard work has just been absolutely dismissed by the one specialist who it mattered what they thought. “It’s not good enough, you need to try a different approach.” (those were not the exact words, just what it seemed like she was saying at the time!) The ONLY person who felt that way was the specialist. Every other medical professional who saw us said how amazing my kiddo was doing. But in that moment, that one specialist cut down every last ounce of my confidence. I’m going to discuss this a bit more in detail in this blog post.

When my little dude was only 2 we switched clinics because the team we were with just really wasn’t working for us. We weren’t a good fit together. The team that we currently have is an amazing team. The doctors and specialists and therapy team that we have in place is absolutely second to none… but in that moment, it didn’t feel like it. In that moment I REALLY doubted our decision to switch hospitals.

I want to take this time to explain something crucial… our team is the best of the best… but a lot of them have severe communication issues. Our specialist whom keeps telling us that he’s not happy with the progress and needs to tweak things even more is one of my favorite surgeons and specialists… but he is HORRIBLE at explaining things. He is one of the nicest surgeons whom I have ever had the pleasure of meeting… he looks everyone in the eye, shakes hands, asks how you are, asks how things are going, etc etc etc… he’s just genuinely a really nice man. But then when he gets something in his mind that needs to happen, it’s like his mind works faster than his mouth does maybe? Maybe he thinks that he’s explaining things to you when really he’s just making it seem like “this is what’s happening and I really don’t care what you think”? Because whenever he realizes that I’m upset about something that has been said he always apologizes and explains better… but sometimes there isn’t enough time in the appointment for us to ask questions and we live so far away from the hospital that it’s not possible to book a follow up appointment for our questions. So, we rely upon the rest of our LOCAL team to help answer the questions.

So, now that you know that part of our story you can better understand about what I’m trying to explain.

Very recently, we saw that specialist that I just spoke of. The meeting took a different turn and I was extremely upset when we left the hospital. He wants to change something else and when I said that I didn’t understand he tried to explain it but I just did NOT get what he was saying, and he didn’t have time to explain further. He said we would just see what he meant in a few weeks when we picked up the new stuff. Fortunately, I have family members that are in the medical world and I was able to contact them and ask them to explain it to me in a way that I could understand better. They were able to take the time to talk to me until I understood it all. Once I understood it better, I was so much more at ease with what was about to happen… but, for that day, I was showing the world my brave and happy face when I really felt like I just wanted to cry. It felt like we had made so much progress forwards and he was just dismissing it all and setting us backwards… when, in fact, it was the exact opposite. He was recognizing the work that we had done thus far and giving us the tools that we required to push further than ever would be possible given the tools that we currently have.

So, why was I showing the world my brave and happy face, and what do I mean by that? Well, when people asked about how the appointments went, I said “they went pretty well, thanks. It wasn’t all roses, but all in all it was good!” and while that was absolutely the truth, I didn’t let on at all that I was upset or anything like it… why? Because I’ve created this perfect world in which there is no room for fear. There is no room for sadness. There is no room for doubt. There is no room for anger. There is no room for anything but positive. And most days that is perfectly okay. But what about the days when there isn’t really much positive that you have to say? What about when you’re having a bad day? Well, nobody understands. Because I’ve created my perfect world. I’m strong. I’m capable of dealing with anything that life could possibly throw at me. Because I’ve shown the world my positive face for so long that now it’s what they have grown to expect. So, when it’s not the positive face people say “what’s wrong with you??” and really, honestly, it’s nothing. Really, honestly, it feels like everything in that exact moment, though. That’s why it is crucial to have a strong support system behind you that you can turn to. That you can trust explicitly so that you feel safe showing them the face that’s not positive. The face that’s not brave. You need a spouse, a friend, a family member, a trusted member of your child’s team… someone… anyone… who you can freak out with. Someone who you can ugly cry to. Someone who you can vent to. Someone who won’t take it personally if you get angry with them… even when it really has nothing to do with them why you are mad. Everyone needs someone who has seen all of their faces and still stands beside them regardless of it all.

I want you to know that no matter what your true faces says at any given moment, there is someone, somewhere, who is feeling the exact same way as you are, who would give anything to know that there is someone out there who understands and will accept them no matter what their true face says at that exact moment. Be the change that you wish to see in the world. Start showing your true face more often to more people. Eventually it might just cultivate some amount of understanding and compassion.

What would happen if you showed the world more than just the one face that they are used to? Maybe we should all try it sometime. Maybe we should stand together and support one another rather than trying to tear one another down over showing their true faces. Imagine what we could accomplish if we were just willing to set aside our personal feelings and opinions and stand beside a fellow mom or dad who is having a hard day and help them to remember that it’s just a hard day it’s not a hard life. Because if we are honest with ourselves and others, we would realize that we need those people to stand by us in our dark moments just as much as they need us to stand beside them. If we could all speak up without that fear of who might think what about us, who might think that they can play the hero and “rescue” us when we don’t need to be rescued, who might say something to someone who really doesn’t understand… imagine how much easier our lives would be if we didn’t have that fear! Can we all just maybe extend a hand in offer of friendship rather than extending a finger to point out what is “wrong” in our opinions? Lend an ear to a parent who needs it, and keep what is said in confidence rather than listening to gossip?

Until Next Time, I hope this gives you something to think about.

Take Care Of Yourselves. ~C

Stress VS Burnout Pt 4



This post will be discussing Burnout. Because stress and burnout are so closely linked I am going to post signs and symptoms again, there will be a lot of cross over and I will be posting stress vs burnout… which is it?



-MUCH less energy

-ALWAYS sick

-Constantly exhausted, even after a long sleep, nap or break

-Neglect your own needs – you’re too busy or you no longer care

-Life revolves around caregiving, but it no longer gives you satisfaction.

-You can’t relax, no matter what.

-You’re increasingly impatient and irritable

-You feel helpless &/or hopeless



STRESS – Over engagement            BURNOUT- Disengagement

STRESS- Emotions Overactive       BURNOUT- Blunted Emotions

STRESS- Urgency & Hyperactive   BURNOUT- Helplessness & Hopelessness

STRESS- Loss of energy                    BURNOUT- Loss of motivation, hope & ideals

STRESS- Leads to anxiety                BURNOUT- Leads to detachment/depression

STRESS- Damage is Physical          BURNOUT- Damage is Emotional

STRESS- CAN KILL YOU                   BURNOUT- Can make you feel like life is not worth it



-Little to no control over work

-Unclear or over demanding job

-Chaotic or High Pressure Job

-Lack of close relationships

-Lack of sleep


-High Achieving

-Lack of recognition

-Monotonous or Unchallenging Job


-Taking on too much

-Perfectionist (in any area)

-Control Freak

-Type A Personality



-Social Contact!! Put aside your stresses and just go do something FUN! Forget your child’s disability for a day and go out and do something “normal” like sledding, skating, swimming, etc.

-Make new friends and foster the friendship.

-Consider joining a Church or social group.


-Learn to say NO

-Set Boundaries

-Set up an hour a day tech-free

-Nourish your creative side

-Set aside relaxation time

-Get Plenty of sleep

-EXERCISE! Just 10 minutes of walking will improve your mood for up to 2 hours!

-Rhythmic exercise – Moving arms and legs is hugely effective in combating stress. It improves energy, lifts your mood, sharpens focus and relaxes your mind and body.

Try… Walking, Running, Weight training, swimming, martial arts &/or Dance!






-Trans fat

-Foods with chemical preserves or hormones

-Nicotine – immediate relaxation but prolonged anxiety

-Alcohol – Immediate relaxation but prolonged anxiety



Omega 3’s. Incorporate fatty fish, seaweed, flax seed, and walnuts.



Ask for and accept help.

You need breaks, too. If at all possible, take at least 2 days but preferably a week away from time to time. Go somewhere that you can relax… hot springs, spa, vacation, etc. If at all possible, go with your significant other. DO NOT DISCUSS YOUR CHILDREN ON THIS BREAK! It may seem impossible, but the goal of this is complete relaxation. If need be, set aside 30 minutes per day to discuss children, but other than that it should be a taboo subject when on your break. DO NOT FEEL GUILTY FOR FOCUSING ON YOU!


Look online for resources… some google tips are:

-“intentional living” google search should get you some decent tips and ideas

-“stress reduction techniques”

-“guided meditation”


-“Yoga for stress”

-“P2P Support for _____________” (insert what you are stressed about)


If you have tried any or all of this, but you are feeling burnout or like it’s not working, PLEASE see your doctor or mental health immediately. This can honestly be an emergency situation and it would be appropriate to head to the emergency room in many cases.




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Until Next Time… Take Care of yourself….. ~C

Stress VS Burnout Pt 3



So, now that we have gone over the signs and symptoms of each, we will deal with each one separately. We will start with stress. As a reminder, here are the signs and symptoms again.






-Feeling Tired &/or Run Down

-Difficulty Sleeping


-New/Worse Health Problems

Trouble Concentrating

-Feeling Increasingly Resentful

-Drinking, Smoking or Eating More

-Neglecting Responsibilities

-Cutting Back On/Eliminating Leisure Activities


So, you’re thinking that you might be suffering from stress… now what? Well, I have some suggestions for what you might want to do to gain more control over the stress.



-Connect face to face with someone

-Get out for a walk in the sunshine

-Increase or add Vitamin D in your diet

-Reach out and connect constantly with supportive peers

-Join Caregiver Support Groups



Now, because stress can SO EASILY lead to burnout, we will be discussing steps you can take to hopefully avoid stress turning to burnout.




Feeling Powerless is the number 1 cause of burnout, stress and depression.

-You will need to find ways to embrace your caregiving choice. Despite how you currently feel, acknowledge that you made the conscious choice to do this.

-Focus on things that you can control. You can not change the diagnosis so do not focus upon it.

-Celebrate the small victories. This is so important. Sometimes the bigger victories will be weeks, months, years, or never come… so you need to find a small victory to celebrate at least once a week.



Feeling appreciated can go a LONG way towards making you happy and keeping you healthy.

-Imagine how your loved one might respond if not for pain, illness or disability. This can help so much.

-Applaud your own efforts. Make a list of how caregiving positively makes a difference. Do this when you’re having a good day and look back to it when you feel low.

-Talk to a supportive family member or friend. Skype coffee date if that’s what it takes!



-Do not try to do it all alone.  That is a 100% guaranteed recipe for burnout. Look into respite care and/or enlist family/friends to provide babysitting, hot meals, or run errands so that you can get a well deserved break!



Speak Up! People can not possibly know what you need if you don’t tell them. Be upfront about what is going on with you &/or your child.


Spread responsibility… Try to get family to help out


Set up a check in… Ask a friend, family member or a volunteer from places such as a church to call and check in with you at a minimum of a weekly basis. They can help enlist assistance if you are showing signs of burnout.


Say “yes”… have a list of things you can easily accept help with.


Relinquish some control… Be willing to be flexible. If grandma offers to take the kids for the day, do not say “well last time, you fed Johnny sugar, so no juice this time. Oh, and I think you should take them to the pool. That would be fun.” Just let them go with Grandma and have a fun day.



If you aren’t taking a break, you aren’t the best version of yourself. You need to carve out time for a break.


-Maintain Personal relationships. Invite friends over for coffee. A true friend won’t care about the state of your house.

-Prioritize activities that bring you joy.

-Find ways to pamper yourself. A hot bubble bath by candlelight after the kids are in bed. A back rub. Fresh flowers. Do your nails. Do your hair. Whatever relaxes you and brings you joy, make time and do it.

-Make yourself laugh. Laughter is the best medicine and a little goes a long way.

-Get out of the house. This is so big. Even going to town and getting a coffee can lift your spirits SO much.



Think of yourself like a car. With fuel and proper care and maintenance your car runs well. Neglect it, and it will quickly start to give you trouble. So… what does this mean?

-Keep your doctor appointments. You need to be healthy!

-Exercise. 3 times a day for 10 minutes each time can make so much difference!

-Meditate, or do yoga or guided meditation or breathing.

-Eat well! What you put into your body is so important!

-Sleep properly! Sleep is SO important to you and your mental and physical health!






Our next post will be regarding burnout.

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Until next time… Take care of yourself! ~C

Caregiver Stress vs Burnout Pt 2



Today the aim is to go over signs and symptoms of Stress vs Burnout. We will start with Stress and move to Burnout.






-Feeling Tired &/or Run Down

-Difficulty Sleeping


-New/Worse Health Problems

Trouble Concentrating

-Feeling Increasingly Resentful

-Drinking, Smoking or Eating More

-Neglecting Responsibilities

-Cutting Back On/Eliminating Leisure Activities




-MUCH less energy

-ALWAYS sick

-Constantly exhausted, even after a long sleep, nap or break

-Neglect your own needs – you’re too busy or you no longer care

-Life revolves around caregiving, but it no longer gives you satisfaction.

-You can’t relax, no matter what.

-You’re increasingly impatient and irritable

-You feel helpless &/or hopeless


Okay, so now that you have a better idea of what each can look like, how can we deal with each individually? The next two posts will be all about how to deal with each condition.


the way


First Post     Next Post


Until Next Time… Take Care Of Yourself! ~C

Stress Management Pt 1

This will be part one of a 4 part series. More will be added if needed.


Stress management is a HUGE topic. It is one of the most researched topics ever. If you struggle with stress or anxiety I really hope this post can help you in some way!



First thing that you will need to do is to figure out if the stress is a “one time” type of thing or if it is a chronic stress. The type of stress that you are facing greatly determines how often you will need to practice stress reduction, and what type of stress reduction techniques you will need to utilize. If, for example, it is a new stress but one that will be a constant stress for a bit, you will need to practice stress reduction techniques at least once a day for quite awhile. If you’re stressed because of an upcoming deadline at work, you might only need to do them once or twice. Your situation is entirely different than anyone else’s situation so please don’t compare your stress to anyone else’s stress. If you have chronic stress, you may need a medication to help out, or perhaps you will need more than one medication. Whatever you need to do to take care of yourself, please do so.


One of the most common issues that I have found with my research is lack of several things. Lack of sleep. Lack of a good diet. Lack of exercise. Lack of support system. Lack of acknowledgement or validation of what you do. Lack of connection. Lack of communication. It all seems to stem from a lack of something with constant stress. If we aren’t taking care of ourselves and seeking out everything that we need, our bodies eventually send a signal of “enough is enough, I need you to care about ME for a bit here.” and that’s when you start to see all the signs show up of stress. The funny thing about most of these things is that if one starts to slip, the others seem to follow suit. If you’re stressed and you don’t take care of yourself, your sleep starts to suffer. If your sleep suffers, your diet tends to get worse. If you’re not sleeping or eating properly you really don’t have the motivation to work out. And the spiral continues. One always has bearing on the rest.
So, how can we recognize what is going on with us, and what can we do about it?

This series will aim to show you just that. If you feel that you are suffering from stress or burnout, please don’t hesitate to contact your doctor, mental health, or even a trusted friend. Seek assistance in overcoming it, or at least in the day to day of getting through it.


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Until Next Time… Take Care Of Yourselves ~C



When The World Is Quiet

I do some of my best thinking at about 1:00 – 2:00 AM because that is when the whole world is quiet for me. There are no other things that need my immediate attention and any loud house work would just wake up my family.

Most nights, this looks a lot like research into new therapy options for one of my kids, some nights it looks like quietly reading a book, other nights it looks like a nice long relaxing bath, and then there are nights like tonight, where I finally take the time to figure out how to use the web version of word press, rather than the app version of it. You see, I have never, EVER, used the web version of this program. I’ve always used the app version on my phone or tablet. I have large fingers and that’s not exactly easy.

However, when the world is quiet isn’t always when I accomplish things. When the world is quiet, I have a lot more time to think. Typically, when the world is quiet I lay in bed and think about all of the things in my life that are bothering me and come up with solutions to them. Or not. Sometimes they just swirl inside of my head and continue to bother me. Not very often, though. Most times I am able to work things out and move on. When I can’t work things out and move on, I turn my phone on to a song called “weightless” by Marconi Union. It is a stress reducing song that helps relax your mind. However, for some people, their time is constantly spent with thoughts and questions unable to be answered or figured out swirling around inside their heads when the world is quiet for them.  Studies have shown that parents of special needs kids have higher stress, anxiety and insomnia levels when compared to parents of children with typical needs or people who do not have children. I’ve mentioned it in the past, but there are studies now that show that a parent of a special needs child has stress levels on par with or exceeding that of a combat soldier. Special needs parents don’t sleep very much. They worry all the time. I’ve never met a special needs parent who isn’t worried. Some are newer to being diagnosed and are worried about what others think of them. Some worry about the “looks” that they get out in public. Some worry about if they are doing everything properly for their child for therapy. Some worry about school. Aides. Bus drivers. Teachers. Friends. Activities. Outbursts. Will their child be liked or accepted? There are more worries in a day than I have room on this page to blog about…There was another similarity noted in the study I looked at. Combat soldiers often suffer from undiagnosed PTSD. So do parents of special needs children.  That is why support systems are SO important.

Sometimes people tend to forget that others are there for them. Others have walked their path before. There are other people out there who have been where you are and would love to help you. Reach out.

There are very effective ways to manage stress even at home when you’re crazy busy and have a million things on the go. I will be having a series of stress management blog posts with various ideas on how to cut down or manage stress more effectively. For now though, I will reiterate what I’m positive you’ve heard a million times. Sleep more. Eat well. Drink enough water. Drink less caffeinated drinks. Exercise… that’s a big one. Did you know that exercise is THE BEST anti-depressant that there is? It is more effective than any medication available. Stress and depression are very closely related, and so it stands to reason that exercise would be the top way to eliminate or significantly reduce stress levels. So, next time you’re feeling stressed, why not try popping in an exercise video? It could even be something like yoga that the kids could possibly try out with you. Another really fantastic one that almost everyone can do is breathing exercises. Count to 10, breathing in on counts 1-5 and out on counts 6-10, making sure to exhale completely. Wait about 2 seconds then start again. If you do this a few times you will be amazed how drastically it can reduce stress or anxiety.

I would like to take this time to mention that, just like there are support systems in place for soldiers who suffer from PTSD, there are also support systems in place for parents who suffer from stress related issues. I have mentioned time and time again the importance of taking some time for yourself. If all you can do is find a support system like a parents group or a trusted friend, and sit down for a video chat over coffee after the kids go to bed, then that’s better than keeping to yourself. If you qualify for respite services through the government, you should really consider taking advantage of them. If you don’t qualify for them, you should consider setting up a time even once a month with someone you trust to watch your child or children so that you can go out and have a bit of a relaxing time. Go for a massage. Go for a walk. Go for coffee with a friend. Go to the park and just sit there and relax… just do something. Even if it is only for 30 minutes. You will feel so much better once you have taken that breather and you will be able to be a better parent because of it. You can’t pour from an empty jug. You can’t be an effective parent when you’re running on next to no sleep for longer than you care to admit and you’re fueled by massive amounts of coffee. It doesn’t work, and if it does work, it won’t work for long. Pick up the phone and call someone. Send a text. Reach out. Or, on the flip side, if you haven’t heard from someone you care about in awhile, reach out to them. Maybe they need someone and are afraid to reach out.

Until next time…

Take Care Of Yourselves. ~C