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 Maybe in the digital age of facebook and websites an actual organization is an outdated concept?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

Spina Bifida Clinic - Carry On

We had our spina bifida clinic this week.

It has been almost 14 months since our last full appointment, and even though most things have stayed stable and relatively in control, I still was ready for this appointment. I had a couple of focuses - school and poop. And we had a whole group of families who were going to be able to meet up at lunch!

Nick got his game face on!

We had him walking around in his walker the entire time. Showing off to everyone who got to see him grow up until our baby group ended in last spring.
I had some things that I wanted to focus on.

Number 1 - I want a bowel routine. (Skip ahead to Number 2 if you don't want to talk poop). Something effective, something that will help us get out of diapers. Something that is not suppositories (which we have been trying for the last year). I have been trying to get a routine for almost a year! I talked about it in this post last May. And we have (knock on wood) solved our constipation problems and want to work on our clean-out issues.
The advice that we got was to continue with the suppositories, that it will take weeks to get results. To be consistent. To time things appropriately (sit on the toilet 20 minutes after eating, knees elevated).
We have been doing this. For a year. OK so we haven't been that consistent in the last couple of months, because it seems to be messier for the day after we do this, because it seems to work well for consistency but not for routine.
And even though I trust our nurse Julia and value her expertise and opinion, I also trust my own instincts and believe that we are past this point and should be trying something new.

Number 2 - I want to be as ready for school as we can be. And I talked about my concerns. A lot.
We talked about how far he has come in the last year. I sometimes forget that 18 months ago he wasn't talking at all. And now he talks as well as Katheryn.
But I'm worried about his learning. I am always aware that spina bifida makes him more likely to have learning difficulties (but I'm not sure what that looks like yet). And I'm worried that some of the things that I'm seeing now with his learning are more spina bifida/hydrocephalus related and less 3 year old/boy related.
Specifically that he is counting, counting numbers and counting things (to about 15 - which he has been doing for a while) but he isn't able to recognize numbers, or letters. We've been working on it, but he isn't showing any progress with recognizing numbers or letters.
I'm not sure if it is how I am approaching it - "Nick what letter is this" and he freezes. Or that he just isn't getting it. I've started pretty simple. When he does reply he usually says "A" or "4" for almost everything. Or just doesn't say anything at all.

We talked with the clinic psychologist as well, about school needs and expectations. But at the moment we still don't know what school we will be going to (but since we haven't heard and it is April, we are hoping that means yes to Campbell's). So we will follow up with her in the summer some time.

Number 3 - I wanted the opinion from physiotherapy about forearm crutches. Pretty much she blasted that idea out of the water. (This is the same physiotherapist that told us that Nickolas functioned at the L3 level, which I have never believed.) And it is not the physiotherapist that we have seen primarily at Bloorview, so I'm not actually confident that she is aware of Nickolas' potential. So I won't always agree with her opinion, but still listen to what she has to say.
Kyle and I have been thinking of fore-arm crutches for Nick, to make something that going around the classroom easier and less bulky than the walker. And last summer he was doing so great with the canes that I have been looking on and off for some canes for us to purchase. But somewhere along the way the idea of the forearm crutches came up.
After we got over the initial strongly negative reaction to discussing crutches, I actually heard what she was saying. The base of a crutch is one point, whereas the base of the cane (quad cane) is 4 points and a stronger base. But he has to have pretty good balance for it to be effective for mobility. Right now his walker gives him the ability to stop and rest when needed, and this isn't there for canes. He must be stronger and more solid to use something that is not the walker.

We went through all of this before lunch.

And lunch was a very important event for us.
Because we had a date.
Through the facebook group we discovered that 4 of us families were all going to be a Bloorview for clinic on the same day. So we all exchanged numbers so that we could connect. There was actually a whole lot of people that we knew that day. Unfortunately our times didn't meet up with Stefanie and her son, but we did get to have lunch with little Alejandra and mom, and also meet a little girl who I knew before she was even born, and her parents! Another family who I have talked to online was also there to meet for the first time in person.
This was our lunch group:
Josh, Amberly and Claire, Antonella and Alejandra, Nick, me, and Kyle - and in the corner (no realizing she was in the picture) is Shauna, who tries to be at all of clinic groups. As a representative of SB&H.

We hurried through lunch, to wait and wait and wait in the waiting room for our afternoon appointments. During this time we got to connect with some other families we knew from baby group. And see how much everyone has changed!
Nick had a lot of fun playing with another little girl on the carpet. They were chasing each other around, she is walking but spent a lot of time crawling on the floor with Nick as well which he really liked!
Nick gave up on his walker to crawl around on the floor. Or what he is doing in this picture - which is raising up on his knees. He has been spontaneously doing this for a couple of weeks, getting stronger and stronger! (And higher than in this picture)

The end of the day was spent with the docs. They didn't tell us anything that we didn't already know. Orthodically he is great. (I can a concern about his legs bowing a bit, but the bone doc said it wasn't anything to worry about - so I won't).
Urologically we got a lot of information from a surgeon. Because that is what he is. He spent the entire time talking about the MACE surgery versus a caecostomy button and explaining the 2 different procedures.

This is a surgical procedure that gives us (and in the future Nick) the ability to clean out the colon from the top down (antegrade enema). So that enema solution can go in the top of the colon through a stoma (hole) from the outside of the body to the inside. It is supposed to be a very effective way to achieve social continence and is more effective than the bottom up (retrograde enema) approach of regular enemas. 
There are 2 different ways to do this, 2 different types of surgeries. Including a simple radiology procedure to put in a tube from the outside to the colon (like a g-tube) - the caecostomy. Or a laproscopic surgery to use the appendix to make a natural tube from the belly button to the colon  - the MACE.

It gave both of us an opportunity to ask questions, get answers. I have looked extensively into these surgeries and made my decision of what I would want (MACE) but Kyle hasn't. And while the doctor said we could do this at any age, I'm not ready to put my son under the knife until I am confident that we have tried every other option there is out there. It also gives us an idea of the procedure to follow once we make the decision that it is time. In my mind I'm thinking 6 or 7. But the idea of an elective surgery for my child still makes me a little sick.

So that was our clinic visit in a nut-shell (like a coco-nut). I hadn't expected to write so much.
Clinic didn't have any big news, it was pretty low key. It mainly reinforced things that I already had in mind and gave us a plan.
Good thing nothing major happened, because this visit actually fell on Katheryn's birthday. And our day was jam-packed full of birthday-traffic-clinic-traffic-birthday-dinner-sleep.

Hopefully we will have an uneventful (but community filled) clinic visit every year!

Card exchange

Christmas is a time of year to be thankful and be around family and people you care about.

But I have some family and some people in my community that I have never even met!

 

So, an extremely smart and creative woman I know decided to do something about that!

With a Christmas card exchange!

 

Cassie collected 72 names and addresses and divided up all the names to make everything fair.

 

So I got my writing hand all ready and warmed up, and I thought about what I wanted to say.

And just wrote...

 

and wrote...
and wrote...

Then I had to go out and buy a bunch of American stamps! (And some Canadian ones)
I think I ended up with 37 cards I mailed out all together!

Now I just have to sit back and wait for our own cards to come!
(And maybe give my writing hand a break for a while)

Just another trip to the zoo!

Oh! But look who we ‘bumped’ into?! That little face looks familiar! We got to visit with our blogging SB mommy Jill and her rockstar Kingsley! (Oh and Jeff, Rachel and Cordelia)

I was really nice and actually surreal to visit with someone that you have been reading about for such a long time. And finally meet in person!

It's almost as if we can almost jump in the middle of a conversation, because we DO know each other. Blogs are very personal and you can learn alot about each other through blogging and commenting. But I've already discussed what belonging to our community means to me.

And it was great talking in the same language. Discussing our own goals and plans. Comparing scars - and yes our kids are going to hate us doing that (eventually).

There was more. There was accepting that our kids are wearing their braces, and that they are staying in their wagon/stroller or being carried, that we make time to make sure they are out of their seat for time too.
And of course there is nothing like seeing that bright smile and shiny eyes in person!

Katheryn made some new friends too. After a bit of warm up time.
But soon the girls were building sand castles, and running around and comparing little brothers!
Nickolas and Kingsley are about 2 months apart, and Katheryn and Cordelia are about 2 months apart. Jill just has an extra kid! So they played well together.

We saw lots of animals, enjoyed the weather and the outdoor air. No one got (too) lost, and there were some minor meltdowns, but I think everyone left on a high note. And slept well in the car!

Hoping this is just the first of many visits!
All of you SB Mommy's are invited!!!

Our community - part 2

I don't know if anyone remembers that I made a post about our community last year some time. It was long and talked about all of the great moms and families out there.

When there is some news that really hits our community it is great to be able to be a part of that. For example when the MOMS study came out, and when the Paul Reiser show started (with an actor with spina bifida), as well as spina bifida in different plot lines on TV. And of course there was Shea, our Shea  - who just met his forever family (yay) and has officially been adopted! Shea Matthew Kulp!!!. A face, a mission and a miracle.

Yes this is a community of people where we share a diagnosis. But it goes beyond that. It goes beyond shared experiences, an understanding of exactly where you are right now. It's more than hopes and dreams and fears and nightmares and days where things go right and days where things are boring and nights are long.

There are many people that I refer to as friends. I have a friend who's child used this, or did that... Most recently it was, I have a friend who's son is going to be born with spina bifida. No, we hadn't met in person. We 'met' on the baby center forum, talked through there. Talked on facebook and BBM. Technology is amazing!

And then I found that I had something that I could offer. I've been in this game for almost 2 years, I may not be an expert, but I am a mother, and that is as close as you get to excellence! I am also a labour and delivery nurse and come from that knowledge background as well.
So I offered myself to this member of our community, who I had never actually met before, but really felt I knew. I offered to be part of her support in labour, to be there for the birth or however I could help.

I was very excited when she said yes. It was almost as if I could give back to everyone who had helped me. Or to Pay it Forward. Alot of time we feel powerless, but this time I was able to have some power, support and knowledge.

I have to say that the waiting room is a horrible place to wait! But it is worth it! I am not going to post any pictures or information - I'll leave it to Shayna to brag about her son (and how great they are all doing). I was able to be there and ask questions and offer support and the knowledge of my own experiences. Almost like a What to Expect, When Expecting a Baby with Spina Bifida.
And I had alot of fun doing it!

With my amazing experience I wanted to just talk about our community again. How much it means to me, and how proud I am to be a part of it.

People in my life have heard me talk about our community. Different moms and who is doing what. Sometimes I wonder about mom's who don't have access or knowledge that there is a community out there. Moms who aren't online. I would love to connect with more and more moms. In person, online - I love it!
I'm trying to get a mom and baby group with some moms that live in my area (we have 3) and I'm always wondering how to let people know that I'm here, I'm waiting to meet you! And I'm not the only one!
Just last month another of my spina bifida mommy's (because I've called rights for all of you!) Jill posted something very similar.

How to connect, how to grow our community?

I don't have an answer. Except to be out there, be visible, be verbal, be brave.
I have a bumper sticker on my car - I love it! It reads Someone with Spina Bifida Makes Me Proud, Everyday.


I've also recently connected with another mom who just got a lipomeningocele diagnosis for her baby girl. She was referred to me by a family member who knows how involved I am in all of this. I was glad I was able to offer some support and some good websites. I remember how dark those days were just after finding out!

Our mom and baby group has wound down for the summertime. Which is really lousy because I look forward to connecting at those monthly meetings! But we've all exchanged infomation, and will hopefully be able to organize some things in the summer.


I have some brainstorming ideas of how to make our Ontario community closer. When I have the time and energy I will hopefully pursue some of these ideas. Meetings? Baby groups? Zoo trips or visits? Connecting with out-of-towners? Local Rehab Center, Local SBHAO chapter? Not sure what my steps should be.

But - exciting for us!! We are going to be able to get together with Jill and her family this weekend. We get to meeting little Kingsley! (Yes you can all be jealous).


It's really nice to sometimes be part of something bigger, and know that you are never alone!

I'm really sorry if this post doesn't flow very well - I actually started it 3 weeks ago, and just hadn't 'polished' it enough. But I still wanted it done and posted. So here you go!

Our community

Sometimes I feel alone, and other times I feel like I'm surrounded by other mothers who know EXACTLY what I'm feeling.

I have been so blessed to find a large amount of online support.

By reading other parents blogs (I follow a large number of them), I feel that I actually know these kids and parents. I can recognize them, both in person and their stories, I can really understand the challenges that they are facing (the parents) and feel that they know what I am feeling as well. At times that it all that can be offered, the feeling that someone else has been there and done that. And that I can say the same thing and pay it forward!

I cannot say enough about the support that I have been able to find online (not to say that I don't get support in real life). I remember reading some of the stories in those first couple of scary weeks. And I found it so amazing to see these kids living their life, when I was given the choice to not let this happen to my child. It showed me happiness and silliness and normalness with spina bifida just tagging along.

I think the first blog I ever (and I do mean ever) read was Leigh's about her son Greyson. Leigh was one of the first to say how hard pregnancy is - that it is the hardest time. But you don't quite believe it until you are past that. I'm sure I found others. One of my favorites to read is by Joanna about her son Jet, not only do you see beautiful pictures of big moments and small, but she writes so wonderful as well.
It is really inspiring to go back to the beginning, that first blog post and see how far families have come from that moment to this.

There are some blogs that really touch me, and I can't wait for the next update! The one that immediately comes to mind is the one written by Jill about her family and son Kingsley. I see my family reflected in her family so often. Kingsley is 2 months younger than Nickolas, has 2 older sisters (one Katheryn's age) and then live in Southern Ontario! Stefanie and Zachary also live in Ontario, and I've actually be able to meet them!! Zachary is a couple of months younger than Nickolas and goes to Bloorview and Grandview just like Nick. We were able to meet at a mom and baby group at Bloorview. Both these kids are about the same age and level as Nickolas and we all live in Southern Ontario. It's amazing to watch how they have grown with us! To see where we were and where we are now.

I have always had a hard time with names and faces, but I have definately been tested and passed over the last couple of months! I saw Katie on a children's show - I actually called Shannen (my sister in law) into the room saying 'look, I know that girl, her name is Katie, I follow her mom's blog!'.

There are kids that are the same age as Nick, some who are older and some who are younger.
It is really nice to read about kids the same age as Nickolas. Even though I still have to be very careful not to compare (can't help it - still do). It is very nice to follow Karen's blog about her son Carson, he is just a couple days older than Nickolas.

The older kids help me to see the future. Like from Caleb and his mom Cassie. Caleb is 5, and Cassie is an avid blogger, about Caleb and Benjamin - her younger son. She has also introduced me to alot of other kids with spina bifida, when she celebrated spina bifida month in the US by showing us various faces of spina bifida - 69 kids in total! Colleen and Nate are another family I love reading about. Nate is 4 and has such an amazing personality! Colleen also runs the baby center site - but more about that later. She is also involved with the SBA (the American Spina Bifida Association) and is very knowledgable!

I've gotten the privilege to 'see' a number of kids born - including Lane, Charlie and Zoe and the newest editions are Kemper and CeCe. As I've hoped and prayed and sent good happy thoughts on the day and weeks they were born.
There are even some kids that are still waiting to be born, like Lauren and her baby boy. It is very satisfying to see people who are right were you were, so lost and confused, and be able to help them, offer the ear to listen and some words of support. And to watch kids grow! Like little Jacob, and gorgeous Ruth! I have learned alot of what it means to be choosed to have prenatal surgery (MOMS study) as Kelly chronicled her experince with Greydon and continues to blog about it.

Everything has helped me to learn more about what it means to be the mother of someone who has spina bifida, and how it impacts not just him and me - but the whole family. Actually it has shown me how much life is not impacted, but just goes on.
There are also families with twins! I can't even imagine!! Holli and her twins Alexander and Nicholas were one of the first blogs I read as well, Alex has spina bifida. There is also Heather and her twins Braelyn and Gwendolyn who are just over 1 year old, Gwen (easy name for me to remember - has spina bifida). And a newer read is Bin and Oaxie, where Bin has spina bifida. Candice just started a blog, she has 2 kids with spina bifida, Kennedy and Marcus; Kennedy is her 14 year old daughter Kennedy and they just adopted Marcus who is one, as well as their other 3 kids!

Recently we got Nick's standing frame. And I knew I had seen one just like it. Yes I had, Madilynn! makes me feel that we are headed in the right direction. Recognizing words and tests and equipment and sharing the adventure of those who are ahead and behind us.
I remember the first time I saw James David's blog, his mother Brittany has his battle scar in the title. I love it!

All of these kids get around their own way, and a variety of different modes. It really helps making scary things like equipment and wheelchairs not so scary. Nate and his red wheelchair have really shown me that it isn't something to be afraid of. That is empowering!
When moms are celebrating, I celebrate with them - like when Tanner got up in his walker, and Kaitlyn crawled, or Emma stood up! When mothers are down, I can help to lift their spirits, or at least know that I have been there too and come out of it. When some moms feel down, I know exactly where they have been - and know that I have bounced back up.

When our kids are sick with various problems associated with our journey, we are the ones that don't need things explained. And can offer or hear some advice that worked in the past. And when they overcome the problems, we can see them perk up as well. Like Annabelle and her mom Nicole, who have struggled with UTI's and surgeries and you see how sad they look when they are sick, and then how happy they are when they are better..

Some of the mothers who really seem to know what they are doing (and probably are laughing if they read this - I know I do when people say I seem all put together).
There are so many parents who try to do something to educate others about spina bifida. Kari has a number of websites that help with this. There is the spina bifida kids where there is alot of general information as well as guest bloggers. She also has a very extensive list of other blogs. Kari also has a blog about her son Toby. And if that isn't enough Kari sells some great spina bifida awareness stuff through her store. I have bought a ton of stuff from her! Kari sold the Redefine Spina Bifida shirts (that Leigh's husband Andy helped to design) that we got in November, as well as the spina bifida neclace I wear.

There are other blogs I follow too - I hate forgetting anyone!
I started reading Erica's blog (her son is Roman) when she talked on our baby center site about a careless comment made about spina bifida to her mother. Blogs are definately another way to vent after getting those careless and hurtful comments! But Erica's blogs are usually quite funny - always good for a laugh!

Oops I did forget one important blog! Misty is an adult with spina bifida. She writes about her thoughts and experiences with spina bifida, and a completely different perspective than I get from mommies and daddies (and very, very important).

Most of the blogs I follow are from the States. All over the states, a couple in Canada and one overseas.
But online support is more than just blogs.
It is facebook, where I have connected with mommies that don't have blogs and seen their kids grow through status updates. Like Lysette and her daughter Lyla. They have a caringbridge blog. Good idea in theory - but I can't get updates through my dashboard (which is how I keep track of everyone). Anyone out there know how to do this - I'd love to hear! I actually know 3 kids who have caringbridge blogs, but can't follow any of them without going to the site.
Facebook actually has a very interesting group called United by Spina Bifida. This group is something that I hope to explore more, when I have time. There are many groups, but I like that one.

There are 2 forums that I visit quite frequently.

The first is Spina Bifida kids through the Baby Center site, which is quite fast moving and full of parents. It is extremely supportive and is the source of both the Day of Prayer we had in October and the t-shirts we wore here. It is also how I've 'met' alot of parents. Especially when they do a roll call!

The other forum I am part of is Spina Bifida Connection. This was the first site that I found when I was pregnant! And when I say that it is a life saver - I really mean it! It has adults and new parents with spina bifida who are members, and each member has their own profile page where you can post pictures and have friends throughout the site. You can also see who has posted what and a little bit of statistics inluding location. So when I say that this is an international site - I mean it. Canada, US, Great Britian, Australia, South Africa just to name a few.

It is the spina bifida connection site that gives the most hope. The clearer picture of what a future holds. Whereas the Baby Center site allows me to ask all of those pesky questions and voice my concerns. Like 'is this normal?' 'should I go to the ER' or always 'another poop question' and within a day you should get tons of helpful and encouraging answers.

So what is the first step for parents who are so lost and confused and looking or support? Hopefully I've done alot of work for you! But I found most of these blogs through SB Connection, SB Kids and Baby Center as well as by blog jumping reading one mom's blog, then looking at who she follows, who they follow ect. I have also contacted the Spina Bifida Association of Ontario asking if they were interested in doing a feature on online support and blogs. They do have a forum on their site, but it runs very slow. When I have gone on, I have usually been the last one to post. But I have 'met' 2 people through their site. Jennifer and her son Jake as well as an adult who lives in a nearby town.

 I have also discussed online support and information when we meet monthly at our Spina bifida group at Holland Bloorview. We meet once a month. It is very nice to have that in-person support, but online you know you can probably get someone at any time of the day or night!

So what promted all of this very long and boring without-any-pictures post? (That I should mention I have been working on for 2 weeks!)

There have been a number of things going on in our community. First there was Kingsley. Kingsley went through a very different couple of weeks, with a decompression surgery and his recovery - he is home and where he is supposed to be - but he and Jill were in my thoughts constantly leading up to and during his hospital stay. This was also reflected in the support on facebook and other blogs as well.

And then there is Shea. Shea is a little boy who is in the Ukraine and was born with spina bifida and is up for adoption. Not so simple when children with special needs are difficult to place for international adoption and the alternative is heart breaking, especially when what Shea was born with, is the same that Nickolas and many other of our kids have been born with. Only our kids were born to loving families that have taken up the challenge. Joanna has been working tirelessly in the last couple of weeks (has it really only been since Dec 1) to raise awareness about saving Shea. And a lot of people have taken up her call for support!

Her fundraising has been to raise money for Shea's adoption. This means that a family (and there is one!) that is interested in adopting Shea has help to raise money ($25000) for his adoption.

All of these women and children and families I have thought about and prayed about. I have seen myself in thier words, and yes been glad I have not yet had to face some of the hurdles they have faced. And I have been jealous (even though I try not to be) when they have been able to accomplish things that we are still working on - but have still celebrated these achievements!

I love finding new blogs - I've recently added a couple of them - Vince, Joshua and Silas - and looking back and seeing all the trials parents and kids went through - and how well they've come through! For any parent or just anyone who reads my blog and they are looking for support, or are just lost an confused I hope that you have been able to find something in this post to help you. Also I would love it if you contacted me amanda_in78@hotmail.com. I know that there is one new mother in Toronto who recently gave birth to a child with spina bifida, whose friend knows my mother, Gwenda Bartley.

For now - thank you if you made it through this whole thing! It kind of got away from me!
BTW all kids names should link to their blog - somehow the color disappeared.