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!

Someone you Love

Everyone has someone they love, and someone who loves them back. I bet you can list off, more than one, more than six, people that you love and love you back.

Take a moment to imagine if you didn’t have anyone who loves you. Take a moment to imagine if you were not surrounded by family and friends.

Take a moment to imagine what it would be like to be a 4 year old boy, living in an orphanage, without a family all because you were born with spina bifida and hydrocephalus. And in weeks or months you were facing being moved to an ADULT mental institution, because you were born with spina bifida and hydrocephalus. Because your forever family was waiting in the US to adopt you, but today you are in your orphanage in the Ukraine.

Now imagine YOU could do something about this. Imagine helping to donate the funds needed for this international adoption (which is expensive) to get Shea home to a family that loves him. YOU can help. In just 3 months (since Joanna found him) over $6,000 has been raised, but almost $8,000 is needed, and time is running out for Shea.

So if you can think of people that you love and love you back please, PLEASE take a moment to SHARE LOVE, Share Love with Shea.

Click on the ChipIn to donate. It is simple and easy and safe. (I’ve done it myself). Just a couple of dollars and a couple of minutes helps Shea get home to his family just a little faster.

This was really meant just to be a comment on Facebook - but it just got away from me.

Shea is so close to getting home! So close to being surrounded by family who loves him, even if he has spina bifida and hydrocephalus. Spina Bifida and hydrocephalus should not be a death sentence, it should not mean a lifetime in a mental institution, it should not mean having no one to love.

You can follow Shea's journey at http://savingshea.blogspot.com/ (If you aren't already).

(Shea is a boy even though he's often dressed in pink!)

I can't even imagine if my Nickolas was born at a different time, or to a different family, in a different country how his life would not be apprecited, how he wouldn't know love and family and laughter and know that he'll be kissed when he goes to sleep at night, and when he wakes up in the morning. All because of what he was born with, all because of spina bifida and hydrocephalus.

If Nickolas was born overseas, in this country would he be crawling around the floor laughing when he finds a bit of dog hair, then looking up to his mommy to show off his find, before quickly shoving it in his mouth as I decide if it's just extra fibre or if I should really pry his jaws open and take away his prize....

Give Love

To my SB Mommies - I am sure you have read this a couple of times - thanks to Joanna and her beautiful writing. But this is for family and friends who haven't read this, who don't know who I'm talking about when we think about Shea.

It's a reminder that everyone needs love.
So Joanna, take it away!

Because it's February.

Because I just decorated my house in pink and red hearts.

Because Valentines are not just for couples...but friends, mommies, daddies, siblings, classmates and neighbors.

Because everybody needs love. And not the romantic comedy, butterflies in your stomach, plucking petals off daisies kind of love.

They need the "I'm yours forever" kind of love.

The "we can do this together" kind of love.

The "can't stop starring at you" kind of love.

The "I'm always there for you" kind of love.

 

The "I can't keep myself from smiling around you" kind of love.

The "I promise to make time to laugh with you" kind of love.

The "everything you say is so important to me" kind of love.

The " I couldn't be prouder of you in this moment" kind of love.

The love that lifts you up....

Squeezes you tight...

Makes even hard times feel alright..

The love that teaches you all that you need to know...

And gives you support you need to grow...

The undeniable you were made for me...

And together we make a family...

What's mine is yours...

I treasure each kiss...

And everyone deserves to feel like this...

Kind of Love.

Because real love is something that cannot be bought - only shared. We need it from the time we are born - and those of us who having loving families know that NOTHING could have replaced that. The love of family - the love I was given as a child - made me who I am today. It teaches us how to love the rest of our lives. It can never be truly expressed in the form of greeting cards, chocolates, flowers, or jewelry. Those sweet tokens and gestures give momentary happiness - it's the feeling love behind them that really means anything at all. So with that in mind, and in the spirit of this holiday of love - I would like to propose the perfect gift for your loved ones.

Give the gift of Love itself.

Give Love.

You can bring joy and love not only to those who hold your heart -

but to child who needs your help.

Give Love.

 By helping one little boy come home to the family who is waiting to give him this kind of love. The kind of love every single one of these children pictured above are given every day.

The kind of love so many of us are blessed to have.

The kind of love he deserves.

Give Love.

 

Shea's story is a remarkable one - and it is only just beginning. For those who don't know - and didn't read about Shea in December - he has spina bifida and hydrocephalus, was born in an Easter Eurpean contry and is put up for adoption. He is fast approaching the age of 4, where he will be put in a mental institution for the rest of his life. He now has a family ready for him - and Shea is WAITING to come home. His family is actively completing the adoption process - eager to give Shea the love, support and care only a family can give. The only thing we can do to help them bring Shea home as soon as possible is to GIVE.

Give what you have.

$5, $25, $50

It's not the size of the gift, but the size of the heart behind it.

GIVE LOVE.

It is so costly to adopt internationally - so much so that many people say "we can't afford that" or "it's just not possible for us". But this family has given everything they have not once, not twice, but 3 TIMES (read their blog - they are an amazing family)and is making that leap of faith to make Shea a part of their family - but they need help raising the last bits.

(And in adoption language, "bits" = $9,000!)

They need our HELP!

As a friend so honestly reminded me "Let's face it ... we all spend/waste $$$ on this every year. The chocolate is gone...the flowers die... and all you have is a distant memory of the token(s) you invested in."

 How much more meaningful - how much more noble - how much more true to what love is all about - to give that money instead to this family - to this little boy -

to bring him home - to give him Love.

So help share the love...with Shea. :)

  

Isn't that the most adorable Valentine ever?!

It's message is simple - it's purpose sincere.

Make a donation (even just $5!) in the name of a friend or loved one - to Shea's Adoption Grant (through the chipin on the right hand margin of the Saving Shea blog) or visit his family's blog and donate through their chipin (it all goes to his account.) Then print out these adorable Shea Valentines and give them to your sweetie, your sister, your mother, your friend - and see their faces light up at the sweet face on the card.

 I can't think of a sweeter, kinder,

more beautiful way to Give Love.

Can you?

(visit http://www.savingshea.blogspot.com/ to read more about Shea's story as well as to view/print these Valentines.)



Thank you Joanna for those beautiful words. I hope they inspired someone out there to really think about what love means this Valentines.