Warrior Moms

Dear Life, 

My mom always said you can judge someone by the company they keep. 

When we took this picture in Long Beach today, I wonder what the bystanders thought as they walked past us. 

Most of them smiled, and slowed down to watch the spectacle (and trust me when I tell you it was something to see).

A few were a little impatient because there were wheelchairs and little people all around getting in the way.

A surprised man got a hug from an amazing young boy who loves everyone! (that was adorable Jet)

But did any of those people know what this group means to me?

5 warrior moms.

4 warrior children.

1 warrior angel.

2 warrior siblings.


(not pictured...warrior dads and other siblings)

This is a VERY small group of a larger whole.

We get each other.

We cry with each other.

We laugh with each other.

We ask questions.

We pray for each other.

We strengthen each other.

How blessed am I to have these women in my life?

How blessed are our children to have these amazing lifelong friends?

We share knowledge, love, acceptance, strength, and kindness.

Without these friendships, I'm not sure how I would fare on this path.

I'm glad I don't have to think about that.

The gift of life

Dear Life,

Today I feel prompted to talk about something that is a little sensitive. The topic is life...the gift of life.  It's a hot topic...people are very passionate about their position.  I don't want to take away someone else's opinion....just share mine and why I feel so strongly about it.

I want to talk about how a woman feels when she is pregnant....and has happily carried that baby to second trimester....and is waiting to find out if they are having a boy or a girl.  It's an exciting time...you may or may not have bought some clothes....if it's your first child you may have started putting the baby's room together.  Everyone in your life knows you are having a baby.  And then it happens.  You go to your ultrasound....grasping your husband's hand excitedly....and suddenly there's a knot in your stomach as you watch the tech's face drop...or the doctor doesn't talk for awhile as he's looking at the ultrasound pictures.  Suddenly the happy, beautiful, sunshine day has turned dark, dreary and so very sad.  You are told your child has Spina Bifida.  You are blown away.  You don't even know what that means.  You  cry and you ask what it all means.  You are told things like: your child might not walk, might be cognitively delayed, might have bowel and bladder problems, might have brain damage, might not live.  You are told that your child will not live a productive life.  You are told you have a small window to terminate your pregnancy.  In our case we were 19 weeks pregnant.  Almost half our pregnancy.  When you see ultrasound pictures, the "fetus" looks like a baby.  In your heart this is a baby.  And how do you process all of the doom and gloom the doctors tell you?  How do you figure out which path to take when someone from the medical field that you trust tells you it's okay to terminate your pregnancy?  When you are told worst cast scenarios, but in reality the doctor can't tell you exactly what to expect until the child is born.  How can we think about doing something so permanent to a child who has no voice?  Aren't we, as parents, supposed to be their voice from the very beginning?  And shouldn't the medical field support that notion?  No one told us that our child would have such a sparkly personality....that he would have the strongest disposition and not let anything stop him....no one told us that he would melt our hearts every day.  Why?  Because they can't....but they also can't determine what kind of challenges the child will have from an ultrasound. So what does a parent do with that?  Where do they turn?  Who do they trust?  They go to the internet....they search day and night...for hope...for a sign of joy in a scary land.  If they are lucky, they will find some pretty amazing parents who are willing to share their life with them to give them the strength to go through the hardest thing they have ever been through.  If they are lucky they see some pretty amazing children LIVE.  And if they are lucky....they realize that life is a gift...and just because their child has a diagnosis....it doesn't mean that is who they are.  All of the children I know that have Spina Bifida are first and foremost children.  They are people....they do amazing things...yes...some things take longer for them....or maybe they won't do some things that other kids do....but that is just a small part of who they are.  They have smiles that brighten a room....they have strength that you never thought a child could have....they are the hardest workers...and they love their life.  Their life is a gift.



 I feel so blessed to have an amazing group of women around me who are willing to put themselves out there, share their innermost feelings to help other soon to be mothers.  I am so blessed to have mothers who share their daily struggles and joys...so that we can all get through the highs and lows and know that we are all going to be ok.  There are scary moments...we've all had them...and been there for each other.  We've also rejoiced together...these women make my little world complete.  They laugh with me and they cry with me.  When I have questions...they are there with answers.  Not one of us regrets this gift we've been given...it's actually the opposite.  We feel humble, blessed, and incredibly happy that these children are in our homes. 

I feel strongly that it is my responsibility to talk about this....to share these feelings with all of you.  You see, there might be a mother...a scared, confused mother.....who doesn't know what to do.  They might read this and feel a little hope...they might ask me for more information.  And then they can enter this circle of mothers...this strong group of amazing people.....and KNOW that they can handle anything....and that this life is a gift.

The other women in my life

Dear Life,


As I was thinking about the women that shaped my life for my Mother's Day post (read here), I was thinking about a few other women that have shaped me as well.  
I think the list could be quite extensive, and just in case I forget someone, I am not going to rattle off names.  I can tell you that as early as Jr. High, there were people who have changed me.

Friends that have remained friends for over twenty years. 

Friends that have had enough guts to tell me when I was wrong; friends to love me when my heart was breaking; friends who giggled with me when I was silly; friends who have been joyous with me during triumph and friends that have prayed, cried, and hugged me as I've learned to be a different kind of mom these past few years. 
Friends who have taught me to dream...to believe...to live bigger, better and happier. 

What about my sisters? 

 Sisters who deal with me even when I'm cranky and bossy (hey..it comes with the territory...I'm the oldest after all). 

 Sisters that are there for the good, bad and ugly.  Sisters know it all...and could really make your life crazy if they wanted to!


New friends who have taught me things I didn't know before...pioneer friends. 
Friends who battle things, who show strength, who teach compassion, who teach joy in all things, who give of themselves when they are struggling.  


The love in a woman's heart; the strength in a woman's hand; the knowledge in a woman's brain; the compassion in a woman's core is how we all get through life with joy.  

I am so grateful for all of you who have touched my life, my heart, my soul.  I thank you.  I love you.

via

Yesterday brought the beginning, tomorrow brings the end, and somewhere in the middle we became the best of friends.  ~Author Unknown

Are we not like two volumes of one book?  ~Marceline Desbordes-Valmore

Friends are relatives you make for yourself.  ~Eustache Deschamps

In everyone's life, at some time, our inner fire goes out.  It is then burst into flame by an encounter with another human being.  We should all be thankful for those people who rekindle the inner spirit.  ~Albert Schweitzer

via

Wheelz

Dear Life,


Facebook.
It can be a huge timesucker.
It can cause drama.
It can also be a blessing.
For me it falls into the blessing category.
(well it can be a timesucker...but we are working on that)
I have found Facebook a great way to keep in touch with friends.
I have also found some great people within the Spina Bifida community that have been a great support and have given my family  friendship and love.
Facebook opened up a whole new world in terms of the amount of people within the Spina Bifida community.
I have also seen some awesome things...
Such as this video:

So I started following this man...because I knew he would be a great example of the "you can do anything you put your mind to" mentality.
He also happens to have Spina Bifida.

Recently I asked Aaron to post a pic of himself wearing a green shirt to support Kumaka for his collage.
He did better.
He happened to come to California this weekend.

So he came to our house.
I KNOW!!!!!

Check out his ride.  Can you believe this?
AND....he tricked it out with hand controls himself!
SO impressed!

Sorry for the blurriness...I was so excited I wasn't being a very good photographer...but he put Kumaka in his trick chair.....SOOO cool!

Wheelies...with Wheelz!
I have one word...


RAD!!

 Wheelz with the boys....sorry honey..I was so excited I wasn't even paying attention to you and your closed eyes!

Me with the boys...

Talking to Wheelz....Kumaka really liked him and Aaron was laughing at our silly boy!

And then it was ON.....video games with his new friend....that is how Kumaka is bonding these days.  Pretty fun!





Knuckles!




I love that this impromptu meeting came about from some messages on Facebook.
And I love that Aaron is even more amazing in person than in his videos.
What a blessing to meet someone who is willing to give up some time in his schedule to hang with the boy in the giant green cast.


Love it.  We are still trying to get our collage to grow...send me your pics....I can't wait to see how many people we can get on it.  I'm going to print it when his cast comes off and frame it!

The couch and a haircut

Dear Life,

The boy in the Giant Green Cast has been spending a LOT of time on our couch.  Sleeping, eating, reading, playing, gaming.....it's become his second home.  Today my dear friend Kristie came over and gave my shaggy headed boy a haircut.  While he was laying down.  On my couch.  One more thing I can say happened on my couch while Kumaka was in the Giant Green Cast.  I have to say that I am so grateful to Kristie for coming over, giving him an  awesome haircut, giving me a small window of time to go to the bank and take care of some errands, basically serving our family.  It's great to have friends.  And it's great to have such an amazing couch.  I too have spent more time here...as we don't let him sleep alone.  It's a hand me down from my brother and sister in law.  I am so grateful for this couch.  And my friend.  And this boy...who smiles through it all.  

A boy becomes a Man

Dear Life,

This is a big year for my oldest boy.
He's a senior in high school.
He's moving to Hawaii to go to college.
And he's recently become an Eagle Scout with the Boy Scouts of America.

He has been a Boy Scout for 6 years.  Over that time, he has camped many hours, served many hours of community service, and worked hard to earn over 25 merit badges.







He worked on an amazing Eagle Scout project; he made a wooden easel and art supply cabinet and collected art items for the Ronald McDonald House in Orange, California.

                                                                                               

























He had to serve in leadership positions within the troop for 6 months, and finally had to have a board of review with three members of the Boy Scout Council.  It was not easy.  He's a very shy young man, and he has a  bit of anxiety.  It's a challenge for him to make phone calls because he gets flustered when he doesn't feel like he knows the answers to questions.  (Usually he doesn't think to listen to the question...he blurts out "I don't know" before he figures out he might know the answer).  He had so much anxiety about having to call the person in charge of advancements to schedule his board of review he told me he wasn't going to finish.  All he had to do was have the interview.  I hounded him, we argued, and for 5 months we went back and forth with it.  Even the day of his board of review, he wanted to go back home and just forget it.  He was very nervous, but he went in there and did his best.  We were not in there with him, one of his leaders went in with him to introduce him, and then he came out and waited with us.  Keoni came out an Eagle Scout.  We are very proud of him.  His court of honor was a week ago, and I was very touched by a story told by that very leader.



 He told him that one of the Scout Council members pulled him aside afterwards, and said that Keoni really impressed him.  He said that he has seen a lot of boys and he really felt that Keoni embodied what a scout is.  I was shocked to hear this, especially after the challenge we had to get him to finish.  Mal also told us that as he was introducing Keoni, Keoni interrupted him, put out his hand and introduced himself.
Keoni ducked his head when Mal was telling this, probably thinking that he did something wrong.  I don't think he understood that Mal was letting everyone  know that Keoni is turning into a man....and he is learning to handle himself well.  That was an amazing moment for me...I knew how hard it was for him.  I am so proud of him.  It was amazing to see how many people came to see our son achieve the highest honor in scouting.  The people there all really care about him and his family.  There was no one there that felt like they had to be there..except maybe the Mayor...and I think Keoni was touched by the outpouring of love.  I know I was.  Keoni is the very first Eagle Scout in our whole family.....and I hope he is not the last.

 I know he is becoming an example to the other boys in his troop...and I hope they know how very very special this honor is.

These men have helped my son become a man..and I am so grateful!

 From...A Proud Mom of Boys!