A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Thursday, April 13, 2017

Nickolas the Walker!

So Nick has been very comfortable walking with his crutches up. We saw a couple of weeks ago, him taking 16 steps down the driveway.

When we are waiting at the bus stop for Katheryn in the afternoon, and Nick wants out of his chair, we will do some standing

He likes doing it (even though he doesn't show it in the picture). And the kids on the bus cheer him on (many of the kids are in his class at school).

So I decided I would take away his crutch... literally... and see what he could do
I wanted him to walking across the room. For real. To me



Off video, I actually have him stopping in the middle of the room and starting again. This to me, shows that he has control and isn't just using momentum!


I actually made him work hard for the video! We did it over and over again, back and forth.
Katheryn really go into being a cheerleader to him!
Presenting him and calling him a walker!


So this is it! I am calling it!
7 years old and 5 months old, and 10 months after his back surgery.
Real steps! Nick is walking!!!!!!!!!



Thursday, March 30, 2017

More Walking

Ever since Nick started showing off at March Break, walking with his crutches lifted, he has been pushing himself farther and farther.


He is really enjoying showing off and being the star of all of these videos!


This is a video that Kyle took one day after school.
He just started going down the driveway with his crutches up!


It makes me wonder how he will do if I make him walk without his crutches...


But enough for pushing him further. Look at him now!


I counted 16 steps!
I'm not sure why he went all over the driveway, it is on a slant, so maybe it is like skiing, and you go side to side instead of all the way down...

Way to go Nick!
I can't believe he only started doing this 2 weeks ago!

Wednesday, March 15, 2017

Skating at Nathan Phillips Square

A classic Toronto experience, especially with the TORONTO sign.
Since it was March Break, and it was still cold, and we were going to be in Toronto for an appointment, and driving (because it was an 8am appointment). I thought that the star were aligned enough to go skating at Nathan Phillips Square!


I had packed everything, but we were supposed to get a snow storm. So it wasn't until our appointment was done, and there was no storm, that we decided to go.


It was cold.
But Nick did a couple of rounds, and then he was cold.
... So when I say that I packed everything... I didn't pack any snowpants. For any of us.

They had the skate helpers, so Katheryn used those.


We had fun taking pictures with the TORONTO sign in the background. Usually the rink is very busy, but this was in the morning, of a cold day (even if it is March Break), and they had called for a major snow storm. So there was only 2 other families out there with us



Pretty soon Nick was cold, his hands were cold (he only had regular gloves and didn't want his hockey gloves) and he was just over the outdoor skate.



My Dad took Nick into a nearby building to warm up and get some hot chocolate.
Katheryn and I kept skating.
Katheryn wanted a picture to bring to her class to show everyone what she did over the weekend!
But she didn't want the skating aid in it.


We took some funny pictures


And we skated around some more


And Katheryn took a picture of me on the ice!


After about 30 minutes we were done (we outlasted the other 2 families that had started with us).
So we went to find my Dad and Nick and get warmed up.

They had fun skating, but if we do this next year I need to remember the snow pants!

Showing off!

We had a neurosurgery appointment yesterday. And I had been worried that Nick wasn't near to taking independent steps again. One of the signs of loss of function and the reason we did the spinal surgery last June.

Nick and I had tried doing the steps over the last month or so. Just like in the video, and so we watched the video together. But I couldn't get him to stop and just take little steps. He would just want to start and keep going.

On Monday we went to visit my work and go to a couple of meetings (March Break fun), and when we were walking back to the car Nick just started walking with his crutches and as I watched he just started to do this...





Over and over and over.
He liked doing it more than with his crutches down!

I know that this isn't the same as having the control to start and stop, but it is an incredible step!

The video I have above is actually 2 clips together. Well, the first video is cut off.
This is the whole first video, Nick thought it was hilarious and kept laughing at the video. Katheryn said it should be posted on Fail Army or Funniest Home Videos



I don't think it is that funny, but he bounced right back up!

We did have our neurosurgery appointment yesterday and got the all clear for another 6 months (earlier as needed of course).
I did mention that at the bottom of Nick's cyst scar is a bump. I think that it was normal (and when we saw orthopedics, he said he thought it was normal as well). But I wanted the all-clear from Dr Rutka. And I got it. He said it wasn't anything to be concerned about.



I also mentioned that Nick's eyes will sometimes twitch. But it didn't affect his vision, that I could tell. But we were having difficulty seeing the ophthalmologist at Holland-Bloorview, and were about 9 months past our recommended appointment time.
So Dr Rutka said he would put in a request for Nick for the Sick Kids ophthalmologist.

And we don't need to be back for 6 months!

Thursday, March 9, 2017

Mucocele

A couple of months ago I noticed that Nick had a large bump on his lip.


I wasn't sure if this was within the realm of a dentist or a doctor, so when Katheryn went for a dentist appointment, they looked at Nick's lip as well.
She said that it looked like it was a mucocele, and if it didn't get better she gave me a referral to a dental pathologist.
I had done my own internet/google search and that is what I had thought it was as well. It was not tender and didn't seem to bother him at all. So I waited another month, hoping it would go away, and then called for the referral.


We went to the dental pathologist last week. It measures at 10mmx10mmx5mm deep. And she recommended to remove it.

A mucocele develops after some type of damage to the salivary gland (either a bump on the lip from the outside, or biting from the inside). This caused the gland to rupture and a collection of fluid created the bubble. It could grow bigger if it is damaged again, it is unlikely to go away on its own. (from what the dentist said, because it went deep... even though Dr Google says it could go away on its own.. and it's been a couple of months with no change).

We talked about what would be involved in removing it. And decided on local freezing and nitrous gas. Nick didn't have any questions at all.

But when we got home he was very upset and said he didn't want to do it. The only thing that helped him calm down was a promise we would go to McDonalds before, and that I would be with him.


He was very good and quiet when we got to the dentist. But answered all the questions. We found out at the very last minute that I wouldn't be able to stay with him (I am not sure why I hadn't asked before). He started to get upset, but no tears, when the nitrous was on he was brave. When he took some big breathes and started closing his eyes (and had his Joker and Batman on his fingers) I left.
About 20 minutes later they called me back in.
Nick was good. No tears, they said he was their best patient of the day!

And they spoiled him with the treasure box of toys. I think he took 10 different things from the box home! They kept saying "you don't have that one..." and let him pick more toys.

Right now he has 3 small stitches in his inner lip. He's been having a bit of pain and taking Tylenol, and having soft foods for the night. But I sent him to school this morning

We go back in 2 weeks to confirm that it was a mucocele (they do a biopsy) and make sure it is healing.
They took out the one gland and a couple surrounding it (there are thousands in the mouth). And he will have a scar once it heals. I am hoping that it won't return, but it could.

Wednesday, March 8, 2017

Moving on

So now that the decision has been made, and the process is starting for Hydrocephalus Canada, I have to look at what I am able to do.
Because when it is something I feel passionately about, I don't like standing in the sidelines. I want to do something.
That is how my facebook group started, when our parent group was cancelled. To try to keep the support network we developed with other families. And actually get to know people and families. Not just facebook friends who live in a different country. But actual support from actual people, who you might not meet... but you could. And Ontario problems and solutions and resources, which are different from what is the in the US.
We slowly started with about 5 people in that group. Now called Our Lives, with spina bifida - Ontario and has 64 people in the group. It's not the most active group, but people do post and comment and ask questions, and get help. I've actually met up with some people through the group at various appointments.
So now with another change, another break up, I have to look to see what I can do.
What can one person do? But what if it wasn’t just one person? I have talked with other moms who feel the same way I do. Maybe in the digital age of facebook and websites an actual organization is an outdated concept?

The original organization started 40 years ago as an idea, a need in the community, and probably started with a number of parents (or adults) who came together to form what was the SB&H. But I don’t actually know.
So if I am now looking at an idea, a need in the community. What do I want to see? What do I want to do to try to fill this need?
So what is my wish list? What do I want out of an Ontario Spina Bifida Organization?
1.      Networking is number one. Networking with other parents, with adults, with parents and with health professionals.
2.      Children’s books and resources. I love finding books that are appropriate to Nickolas (and Katheryn) and buy and collect anything I can find. I love(d) that the SB&H would send us new books and materials.
3.      Current research. What is out there, what is new. Is there anything that is interesting to us, impacts us, or can help to educate us?
4.      Research opportunities. Because that is just me, and I love participating in research
5.      Education.  Education opportunities, presentations, current research, healthcare professional experiences, sporting experiences or just anything that is educational. An opportunity to go to conferences would be wonderful.
6.      Community voice and presence. This would also go with fundraising, (which is not actually on my wish list, because this is just a wish and wishes don't need money) but it is more than that. It is the opportunity to show this is what spina bifida looks like, and show the community until it is just known.
7.      New parent support. I remember getting a care package when Nickolas was born, it was so helpful to have the resources (and knit hat and sweater) and know there was a community out there that cared about us.
8.      Ongoing support. More than just networking, but actual information and support. There is online material that I can find, if I know where to look. But age appropriate, what to look for, how to help. Something that complements what we learn every year
I have tried different ways to connect people in a community. To help people, but also myself, to feel connected and not alone. To know there are others who have done something similar, or be the person to help someone who is lost and not know where to start.
I have my person blog, my I want to learn about Spina Bifida blog, presentations to the college, facebook page, activity in other facebook pages, I have been with another mom when she had her baby (and I loved doing that, I wish I could do that for every new mom!), I’ve tried writing my own book (and I have a draft I’m working on). All of this to connect with a community, to see if something can get help by why I have experienced.
Maybe it is the nurse in me. Wanting to help. But I want to do something! I am just not sure what it is yet.
I have the facebook group, which gained 2 new members this month. I am always excited to get more people connected! I know there are more out there, but I don’t know how to reach them yet.
I have lots of ideas about how to move forward.
Do we start an organization connected with the Canadian Spina Bifida and Hydrocephalus Association, we are not anywhere near that right now. But as Hydrocephalus Canada moves away and creates a void, something needs to move in. Could I be involved in that?
Can we meet! Can we organize some type of event for as many spina bifida families in Ontario to actually get together and meet face to face? I have thought about this idea many, many times. At my annual SWWR I tried to connect with different families, but the most I had was I think 4 families at one event. Every time I think about it, the time slips away from me and then it is too late.
I’m wondering if I can beef up Our Lives, with spina bifida group. Add some documents (books, current research, research opportunities, links to presentations), a poll about what people would like to see in the group, dates and events.
  • And I so want to do a video like the Shake it Off. But with Nick’s favorite song Anything, by Hedley … the clean version (which Jill had first suggested). I love listening to Nick sing “I can, I can, I can do anything”
I think now I have a couple of projects to work on, to try to direct my angry energy into a project

Walking to school

Nick wanted to walk to the bus stop today with his backpack


He did it the whole way to Katheryn's bus stop.
He is getting stronger with his crutches.


I don't think he is as strong/stable as he was when he took his first steps. But that is something we are working on. A part of me thinks he might never be able to do this again. I had hoped after the surgery we would be back to that point quickly. But we aren't.
And if he doesn't get back to taking independent steps it will make me sad, but it isn't the end of the world. He is stronger with his crutches. Especially with the higher braces on (which I don't hate as much as I used to). And on the weekends we take the tops of his braces and he is still able to walk with his crutches, but he is a little floppier.

Oops, I just hijacked a post about walking to school...

Last week while we were waiting for Katheryn's bus Nick wanted to get out of his chair and practice standing. When the bus pulled up I could hear a lot of the kids in the bus cheering for Nick (a bunch of kids in his class are on Katheryn's bus). And Katheryn got off and yelled "He does that at home!"
Nick was so proud of himself.
And if that is what he wants to do, then go for it boy!

Today he wanted to walk and run to the bus. So he did.


Yesterday coming home he wanted to be in his chair and his crutches.
I thought it was weird, but whatever. But then I realized that Katheryn and Nick were playing sledge hockey, and Nick was pushing himself in his 'sledge' while Katheryn was the coach


 They went the whole way from Jenn's to our house like that.
Now it just needs to translate on the ice!

Friday, March 3, 2017

It’s not you, it’s me…


Read this first. My Association wants to Change... about how the Spina Bifida and Hydrocephalus Association wanted to change to Hydrocephalus Canada...

It's not you, it's me...
That is how it feels. Like I have been dumped. Actually worse, like my son, my family has been dumped. Because of spina bifida.
Because it is not a ‘hot’ disability anymore?

Because there are people more important?
Because supporting him is too costly, or doesn't make enough money?

Because, because, because!
I am so upset. And angry.

The motion that I wrote about last month was passed. So my organization, the Spina Bifida and Hydrocephalus Association of Ontario, will transition into Hydrocephalus Canada. With a national, hydrocephalus focus.
And that is it then.


This is an organization I stood with for the last 8 years. A relationship I cared for. Either as I received their Current Magazine, sold their calendars, fundraised for them, utilized their resources and connected with individuals, but also as Nick was on their website multiple times, in their resources, Current Magazine and invited to speak. It was a relationship that I cared about, and I felt that it was a relationship that cared about our family.
  • It was also a relationship in the form of a representative who is at almost every single spina bifida clinic, meeting new families being there for a chat and really is the person I picture representing the association. Shauna, as the face of spina bifida, for us and so many families in Toronto, will continue to be a permanent part of my spina bifida community, separate from the direction of the organization she has represented for us.

As the Spina Bifida and Hydrocephalus Association of Ontario converts into the Hydrocephalus Canada there is a gaping hole regarding spina bifida families in Ontario. This is an organization that has existed to help families with spina bifida and hydrocephalus for 40 years.
I’m having difficulty getting over the break up. I had thought more provisions would have been made regarding those left behind. The spina bifida community. A plan for them, for us. A new connection with the Canadian Spina Bifida and Hydrocephalus Association (Hydrocephalus again… at a national level… ). Or even a discussion regarding support for the spina bifida community. I just have a promise that they will continue to support who they are supporting now.
But I am just a member, with just 1 vote.

The Spina Bifida Association of Canada is an umbrella group (with a really horrible website… half of the links don’t work). Even after I contacted them for more information about support in Ontario, I was told to call someone else and given their phone number. So there isn’t any big support waiting there.

I’ve attended yearly general meetings, supported their initiatives, participated in their fundraising. I have been recognized by the organization for the support, and have talked at their golf tournament even about the organization. I have been able to connect with individuals with spina bifida and show Nick he isn’t alone.

We had our 7th annual SWWR last year, and had just set a date for our 8th fundraising event. All to support SB&H.

Looking through my blog for the things I have done is just making me angry.
No, I didn’t do any of those things just for them. I did it for Nick. To show what spina bifida looks like, to raise awareness and to fundraise last. And yes I can continue to do that. But it will be different. I liked doing the walks, and last year we didn’t walk, because Nick had just had surgery.

The walk was an event I organized for a reason, and we fundraised for a reason. Otherwise why do we even bother. Why take a day out to walk, who cares, it is just me wanting to drum up support. Well, there are lots of things to support and without the organization we won’t do it. And fundraising. There are many, organizations to fundraise for, organizations that have helped us.

Sick Kids, Grandview, Easter Seals, March of Dimes, Holland Bloorview. All of these organizations have made changes in Nickolas’ life. But I don’t fundraise for them. Or do I stop fundraising for them and fundraise for us. For a door into the house, for specialized camps, specialized lessons, hippotherapy, different toys and aids to help move around.
But no, I have stood by the Spina Bifida and Hydrocephalus Association of Ontario because they represented us. Spina Bifida and the unique challenges and questions and life experiences that come with this complex condition.


Through this we were able to connect with other families, and had the backing of an organization as we showed what spina bifida looks like.
Now, it just feels like we weren’t good enough, strong enough, worthy enough to continue to support. As the organization now focuses only on Hydrocephalus.

I don’t care about hydrocephalus.
I know that is anger talking. But seriously, I don’t care about it. It doesn’t impact day to day.

The hydrocephalus was caused by spina bifida, so while I care very deeply about Nick’s shunt and the impact the shunt and hydrocephalus has on his brain and education, I don’t see it as hydrocephalus, I see it as spina bifida. Just another spina bifida thing. Like the bladder, bowel, chiari, braces, surgeries. All part of the spina bifida.
So hydrocephalus is important, but I have no interest right now with a purely Hydrocephalus Association.

So that is where I am, with Hydrocephalus Canada.
Dumped.

Monday, February 27, 2017

Skating!

We finally got on the ice and skating!

This has been a very long way in coming.
Every winter I try to get the kids on the ice. But both kids. And that has been the hold up.
4 years ago Katheryn got bob skates for Christmas and I had hoped we could make a rink in the backyard. Because Nick wanted to do whatever Katheryn is doing.

So the next year I heard about a skate horse, being designed by the March of Dimes. They contacted me after reading my blog about skating. But after some back and forth I wasn't able to get one to trial. The following year I tried again, but again we just couldn't connect.
So then it just sat on the back burner for a while. Looking at some lessons, but nothing ever came from it.

Well, this year Nick started sledge hockey. And it became about helping Katheryn learn to skate.
Again, I looked at lessons. But they never panned out (we limit to 2 activities and Katheryn is still doing martial arts and brownies).

Then for Christmas we all got ice skates! I was so excited (and nervous... I haven't skated in 13 years). I researched where to skate at the cottage, indoor and outdoor. I got Katheryn some skating aids called Skateez (like training wheels for skates). We borrowed the sledge and we were all ready for a family skate at the cottage!
And then I got sick and we couldn't go.
We tried again during on a weekday, but it didn't work out.

So I was very excited, when in the last week of February, we got on the ice!

Katheryn was so nervous. This was how she did the first round around the rink. A death-grip with 2 hands on the edge.


This was how Nick did the rink. Just gliding, nice. He knew what he was doing!
Of course he got lots of looks and smiles and he skated around the rink no problem!


I had thought/hoped that the Skateez would be enough support. But at the rink they had pylons that they used for support. So Katheryn used that to go around the rink and eventually felt comfortable letting go of the edge. (They didn't have any skate aids to borrow/rent, and they are too small anyways)


Kyle didn't want to go on the ice (it's been a good 20 years for him), but I found it was easy enough to get back out on the ice and skate.
Family selfie on the ice!


Here are my 2 skaters!


Katheryn started getting more and more brave

 
 

And Katheryn got more comfortable going around the ice with her pylon.

 

 She did fall a couple of times, but got right back up!


I think it was a great afternoon! We were on the ice for an hour and a half. Hopefully we'll get out at least a couple more times before the end of the season.

Thursday, February 23, 2017

Fun shirts

I like buying things online. If someone posts a picture of a shirt or a link, I will very often go and track down the link. Especially if it is something fun, funny or awareness related.

I do this all the time for the kids clothes (and have been told I have the most interesting awareness clothing), and sometimes for myself (what is more fun that a shirt with a wookie on it?)

So when I friend posted about these shirts with superheroes on wheelchairs I had to check it out.
The company is called Adaptive Apparel www.adaptiveapparel.org/ and they have so many different super heroes (and villians) to choose from.

Nick thought it was so cool and wanted all of them!
He ended up picking Batman.
And Katheryn really wanted one too, and picked Wonder Woman.


 It took about 4 weeks for them to come, and cost $25 USD, and shipped was another $3 (and with a 15% off code - 15OFF - if it still works. With a lot of choice for colours and sizes and even type of clothing.

The kids were so, so excited when the package came. They couldn't even wait until the next day, they tore off their shirts and put these on. And then even asked for pictures!


I agree that it is a cool shirt. (The dark blue doesn't show off the batman, but Nick got what he wanted). It is about normalizing the unique and different, being proud and display yourself to the world (from their website).



Thursday, February 16, 2017

My association wants to change

There are some proposed changes coming to my association. The Spina Bifida and Hydrocephalus Association of Ontario.

To focus on Hydrocephalus and take the opportunity that is there to really step up and fill the need for a national Hydrocephalus Association of Canada.

There was a phone conference last night that I participated in, to get more information. And this is what I learned. (I took notes). I am mixing up the order of some of the points, for what I hope is flow is clarity. (Only members were notified of the conference call, but there wasn't anything in the call that said that those who participated couldn't discuss what we learned). There is going to be a vote of members at the end of the month, and only members are allowed to vote.

I found this picture of change, and thought it would appropriate...


The proposed change is to expand into a national Canadian Hydrocephalus association (and have a corresponding name change).

There is an identified need in Canada for a National Hydrocephalus Association. And the SB&H are in a position to fill that need. SB&H stressed that the proposed change will not impact any services that individuals with spina bifida currently receive, and if anything it will provide the opportunity to increase services to members.

  • There is a national Spina Bifida and Hydrocephalus Association of Canada but I am not that familiar with it. Beyond finding it inferior to our Ontario Association. But I might have to look at it more in the future.
  • My understanding is that they concentrate more on the spina bifida and less on the hydrocephalus.
  • They are connected to individual provincial groups, but not with SB&H
  • So I am not sure (and of course SB&H can't say what another group would do) if they would be able to fill any hole left by our organization concentrating on hydrocephalus only.
They said that they have been approached by clinicians who state that there is a need for a national hydrocephalus association.


Another reason is financial. There is the need to look for alternative financial opportunities and look at sustainability solutions for the association to be able to continue to provide services to their members in the long term.

They discussed that there is a decrease in the incidence of spina bifida (a topic that inspired my previous blog post - Incidence of Spina Bifida and What's the Point). But the incidence of Hydrocephalus is increasing, including congenital hydrocephalus (born with), acquired hydrocephalus (caused by something, often as a child), and Normal Pressure Hydrocephalus (adult). So it would make sense to increase focus on the disease that is increasing.
  • They did not say that they would focus less on spina bifida, just more on hydrocephalus

During the phone conference they stressed that the proposed change is to increase services to members and expand the mandate of the organization.

They also said that nothing online (http://www.sbhao.on.ca/ or http://www.folicacid.ca/) would change.



So that is what I learned in the phone conference.

At the general meeting in September, which I try to go to every year, they mentioned this. At the time I didn't really realize that it would be changing my organization. I thought that it would be something separate while still maintaining the Spina Bifida and Hydrocephalus Association of Ontario, but helping to develop a separate Canadian Hydrocephalus Association.

But for my organization to take out the spina bifida part of their name (their identity?) I find it hurtful and frustrating. We identify the most with the spina bifida aspect, and less with the hydrocephalus aspect. Yes Nick has a shunt and hydrocephalus but it is the spina bifida part that affects our lives. (And maybe the hydrocephalus part too, but it is really all rolled into one).
For us, it isn't 2 different things it all means the same thing. Or else how many diagnosis can one diagnosis have (ie spina bifida which leads to hydrocephalus, also chiari malformation, neurogenic bladder, neurogenic bowel, non-verbal learning disability, ADHD ect).
No, we identify with spina bifida and the rest is just part of the package (but not necessarily everything)


And I know that in the planning stage you can say that you won't effect any spina bifida services. But when your name doesn't have spina bifida in it, then how soon before that starts to fade away...
How can you change your name and your mandate, but still provide services to a diagnosis that you no longer identify with.

A concern that I brought up, is for new parents and newly diagnosed. Where will they go to for information?
They won't go to the folic acid website. They are past that, this has already happened.
And they wouldn't go to a hydrocephalus only website or information, that is not a given yet, that is not the focus. You can only focus on one diagnosis at a time, and hydrocephalus isn't it
  • Or at least it wasn't for me, 80% hydrocephalus rate means 20% won't have hydrocephalus, and Nick's didn't develop until he was 3 weeks old)

As a member of the SB&H association, I have the right to vote on the proposed change. This is my  association and my vote will be counted.
At the moment I am not sure how I will vote.

From my letter I received, the proposed change is: SB&H is recommending changes to its by-laws to facilitate the transition to a new national organization with a focus on hydrocephalus.

There is a meeting and vote on Feb 26th, and the ability to assign a proxy to vote on your behalf.

But I still don't know.

I know change is sometimes necessary, sometimes positive, and no one proposes a change that is purposefully negative.
But for all of the promises and talk that this will be positive, will increase services and not effect the spina bifida families. I think that it will eventually. I think that it will create a slope that will gradually take away from spina bifida (not on purpose), but because the mandate is for hydrocephalus and that needs to be the focus.

So that is what I worry about. I worry that it will take away from (and if not take away, then focus less on) awareness of spina bifida and take away from support and information for new parents. And while there isn't a focus on impacting that termination rate (47%), there will never be.
And that hurts me. That number still haunts me and I feel it is 47% of parents who miss out on belly laughs and smiling faces and being told "I love you so much", all because of fear and negativity and the fact that no one has a crystal ball.
  • And I know that this is my bias.
  • And it isn't even a mandate of my current organization, but to me, allowing me to raise awareness and show what spina bifida looks like, I am making a step to inform the next 47%. So when a parent receives a diagnosis they can say "Oh, I know what that is, I can do this, just like Nickolas' parents" (I heard similar words when I told my then-manager, "Oh, just like Charmaine" an adult with spina bifida I have worked with, and have gotten to know.)
That is what I want from my organization. The platform to say "this is what spina bifida looks like" and I worry I will lose that with a Hydrocephalus-only focus.

 And in case you need a reminder.
This is what spina bifida (and hydrocephalus, and chiari malformation, and neurogenic bladder and bowel) looks like!