Spina BIfida Awareness Day 1- Nathaniel's Story

Dear life,

The month of October is Spina Bifida awareness month.  I am dedicating my blog this month to raise awareness.  I am sharing my space with amazing people who want to tell a small part of their journey with my readers. This month I hope to bring not only awareness, but HOPE and the ability we have found to find JOY in hard things. 

First I would like to welcome my friend Gretchen Soares.

"My first child, Taylor, died at birth. Because of the complications with her birth I was followed very early on by high risk specialists with my pregnancy with Nathaniel. Even though all of the early markers for birth defects came back fine, I had a level 3 ultrasound (the highest level available at that time) done at 18 weeks gestation.

 It was during this ultrasound that we saw Nathaniel's lesion and he was diagnosed with Spina Bifida. An amniocentesis was run the next day to confirm the diagnosis.

I was devastated when I found out about Nathaniel’s condition. Not because of the condition itself, but because I felt cursed that I couldn’t have a “normal” pregnancy like so many other women. At that time, I felt like just about anyone could get pregnant and have a healthy child, but not me. I have since learned that I am in no way alone on that journey, but at the time I felt so alone. The next thing that hit me was that ALL of the doctors seemed to think nothing of telling me to terminate my pregnancy. After having no choice in the death of my daughter there was NO WAY that I could choose to end this pregnancy. No one seemed to understand that feeling in me. Even many of my own family didn’t want me to have such a “hard road” with my child. From the beginning I knew that I would ALWAYS fight for this child and their life. Before I even knew that Nathaniel was Nathaniel I knew that he was worth whatever life threw at us! The harder sell was convincing the doctors that we were having this baby! I was also frustrated with all of the “dooms day” predictions given to me by doctors.  NO ONE knows what life is going to throw at ANY ONE, I couldn’t understand the need to focus on the negative. Any of us could be a in accident tomorrow that changes the rest of our life, that isn’t a reason to give up on life today.

I am not going to lie… sometimes our journey with Spina Bifida seems HARD, but everyone has something hard their life at some point.  My son is an AMAZING individual with strength and charisma beyond words. He teaches me things daily, especially in my faith and perseverance! Things have gotten even more interesting in the last 5 years, as I have walked this journey as a single mom, but still, I would do it over again if given the choice! I have really come to learn that all things in life are a matter of perspective. I try to keep our family perspective on the positive things in our life, and teach my children that mountains are in everyone’s life. We all have to learn to climb some mountain! Spina Bifida is the mountain we climb daily!

Nathaniel is now twelve,and a go getter. He is blessed with strong use of his legs. He loves to play all sports (his favorite answer when asked “what is your favorite sport?” is “anything with a ball!”), ride his hand cycle, surf and do anything “techy” (play on the computer, play video games, steal my ipod, lock me out of my phone… you know, all those toys technology gives us!) Nathaniel does struggle with many mental impairments from his Spina Bifida, but they are just part of that mountain we climb! The interesting thing about Spina Bifida is there is NO predicting it, and no two cases are ever identical! I dare you to embrace Spina Bifida and see where it will take you as a family!

One of the things I heard A LOT when Nathaniel was diagnosed was that he would never walk. I know that he is blessed with his lesion being where it is and still being able to walk pretty well, but it still makes me laugh every time I have to chase him down! Growing up on the Central Coast of California, one of the things I did from an early age was surf. I never thought Nathaniel would get to experience surfing like I did. Well I was WRONG! Nathaniel has been surfing for the last three years, and just this summer he stood up on the surf board ALL BY HIMSELF! You bet this momma was on her knees BAWLING tears of joy and thanksgiving when that happened! I am amazed what my son can do he is one strong kid!

Every life is a journey and has some adventure to it. Spina Bifida may not be the journey or the adventure you were planning to take, but that doesn’t make your child any less wonderful! 

Embrace your journey, believe me, your child is WORTH IT"

What will you grasp onto?

Dear life,

It's that time again!  Five minute Friday!  

Now, set your timer, clear your head, for five minutes of free writing without worrying about getting it right.

1. Write for 5 minutes flat – no editing, no over thinking, no backtracking.
2. Link back here and invite others to join in.
3. And then absolutely, no ifs, ands or buts about it, you need to visit the person who linked up before you & encourage them in their comments. Seriously. That is, like, the rule. And the fun. And the heart of this community..

Topic:

GRASP

GO

There are many things I could write about today.  But because of certain things that have presented themselves to me....I want to talk about YOU.  Something funny happens when we grow up, become adults, get real jobs, get married, have kids, get dogs, etc.  We have responsibilities.  Slowly, oh so very slowly, we get in habits, we even get in slumps.  Unless you are very lucky, you get into a routine...mine goes like this:

Six thirty, wake up, get Kumaka ready for school.  Kiss my kids goodbye, get Kumaka off on the school bus, and then I climb in my car and hustle to the beach to pick up Kekoa at surf team.  I take him home, clean up the house, take care of my errands, and wait for the kids to start arriving.  Then it's time to check homework, make sure kids are reading, have everyone do their chores, if there is practice of some sort that must get done, and then dinner.  You get the picture.

Something is missing.  Have you figured it out?  It's me.  I have recently realized that I need to get a better GRASP on ME...who I am...what my dreams are...what makes me happy...what will help me grow.  Because as I do those things, I become a better mom, a better wife, a better friend, and more important...I become a better ME.  

GRASP who you are.  Hold on tight.  Take time for you...everyone will benefit.

What I wish I knew then...

Dear Life,

I am linking up with Lena for the Tuesday Ten....
  

Her topic is 

10 Things You Wish You Knew 10 Years Ago

1.  I wish I knew how quickly time goes.  (Enjoy the time you have with your children...each and every day)

2.  I wish I knew how to forgive easier.  (Time is wasted on anger and hate. Love and understanding makes life easier...and happier)

3.  I wish I knew how to realize that everyone has a story...and you can't judge anyone.  (Everyone has a reason for who they are and why they make certain choices.)

4.  I wish I knew my mother in law wouldn't be here.  (I would have spent more time hanging out with her and less time being frustrated with her.)

5.  I wish I would have gone away with my husband more often.  (Who knew we would have a baby with extra's...makes it harder to have a get-away.)

6.  I wish I would have saved more money.  (Never imagined my hubby having a career change.)

7.  I wish I would have finished school back then.  (How on earth do I go to school when I have kids going to college?)

8.  I wish I would have been happier with who I was then.  (Gotta love who you are...and be your very best you at every stage.)

9.  I wish I would have started blogging a long time ago.  (Was there even blogs ten years ago???)

10.  I wish we would have traveled.  (Ten years ago we had less kids...would have been way easier!)


Now a few things to say to me in the future....

Speak Now

Dear Life,

I am so blessed to be involved in a wonderful organization called Speak Now.

I've mentioned it before but I'm not sure that I have explained my personal passion with young women empowerment.  

Growing up is hard.  The media and crazy celebrity "role models" don't make growing up easier.  In fact they make it harder.  Which means the young women now have it EVEN HARDER than I did growing up.  

What was it like growing up for me?  I wasn't the popular girl, I wasn't the trendy girl, I had friends in many types of groups, but I didn't feel like I fit in anywhere.  I felt like I was an outsider in every group.  At home, things were explosive, (now being a mom of teenagers....I get it a little more....and I must call my mom and apologize!) and I didn't feel loved or needed.  I didn't party or do drugs, I didn't sleep around (I must say that even my virginity made me feel like an outcast).  My grades started to suffer and I became very depressed.  Things were not good....they were not good for a long while.  I had a couple of boyfriends...but that didn't help. I was still alone.

I had to learn to be strong for ME, to love ME, to discover ME.  I became self reliant, and didn't expect anything from anyone.  As I started on this process, I met a man who became first my best friend, then my boyfriend, and then my husband.  I am so grateful to him, for because of him I found God.  

With Him, I was able to create the woman I should be.  A woman not afraid to learn, not afraid to change her way of life, not afraid to BELIEVE.  Believe in herself, in her God, in her family, and in LIFE.  I allowed myself to love, to live, and to be happy.  

Isn't he cute? I love him even more than I did that day!

Does that mean things were easy?  That my prince charming came and all the bad horrible things went away?  My prince charming did come....I am blessed.  But I have had my fair share of life lessons, challenges, and just plain old HARD HARD things to work out.  But over the years I have learned to have faith; faith in God, faith in Love, faith in Family, and faith that things always work out one way or another.  And it's okay if things are hard....because I can do hard things.

 

I am so blessed to be able to use my words to maybe, just maybe, affect the heart of a hurting young woman.  And I thank God for that opportunity.  I am the head of the Create Team for Speak Now.  Tomorrow is my first post on the blog.  I would feel very honored to have you read it.  But I challenge you to read more than mine.  The other fabulous women and young ladies on the teams are amazing...and their words will change you.  They have changed mine.  

Dude....it's Five Minute Friday

Dear Life,

It's that time.....Five minute Friday....and my fail....it's Sunday.  Better late than never!

Here are the rules in case you forgot...and if you are reading this and decide to participate...please let me know...I would love to read your post! :)

1. Write for 5 minutes flat – no editing, no over thinking, 
no backtracking.
2. Link back here and invite others to join in.
3. And then absolutely, no ifs, ands or buts about it, you need to visit the person who linked up before you & encourage them in their comments. Seriously. That is, like, the rule. And the fun. And the heart of this community..

Theme: FOCUS

GO

When I hear the word Focus my mind immediately goes to the movie Finding Nemo.  Remember when Crush was talking to Nemo saying "Dude....dude.....focus dude..." after he blacked out?  I love that turtle Crush.  He always makes me laugh!  And dude....have I been needing to focus.  At the beginning of this year, my youngest child had MAJOR hip surgery  (You can read about it here) (and here) ....it was twelve hours long...and traumatic.  He ended up in a Spica Cast for two months....and then he broke his femur right after that...and was BACK in a Spica Cast for another month.  So needless to say the beginning of this year I was NOT in focus.  I was in green cast HELL.  My poor sweet boy was very limited to what he could do, I was limited because of the impossibility of his cast, and our whole family was kind of floating along....surviving....but missing out on some things.  I feel like Crush has just found me floating and said "Dude....Dude.....focus Dude" and I have finally woken up from the daze and I'm back in the mommy groove.  Back in the homework grove, the school grove, the checking of backpack groove, the clean your room groove, etc etc etc.  (I am still lacking in the laundry groove...but I do despair with that one).  My little one is having another surgery this week....but it is much less invasive and I am praying that we have learned a little something from earlier in the year.  MUST FOCUS on my family....my WHOLE family.  And when I can't focus....I need to pray....to find the strength and the peace to have the ability to focus.  

STOP

Writing to my Senator....what a difference in responses

Dear Life,

I  recently wrote to Senator Barbara Boxer and 
Senator Dianne Feinstein in regards to the CDC's plan to consolidate all forms of disabilities into one big pool.  The concern is that the larger spoken about and publicized disorders would get larger amounts of money.  Here is what I wrote:

As a concerned constituent and someone who is affected by Spina Bifida – the nation’s most common, permanently disabling birth defect – I am writing to respectfully request that you sign the Dear Colleague letter currently being circulated by Senators Wicker and Lautenberg, expressing concern over the Center for Disease Control and Prevention’s (CDC) proposed plans to reorganize the various individual Human Development and Disability programs into a single program. 

Spina Bifida affects approximately 166,000 individuals and 3,000 pregnancies every year. People with Spina Bifida face a host of difficulties, including, but not limited to--physical, developmental, educational, and vocational challenges. The National Spina Bifida Program and the National Spina Bifida Patient Registry at the CDC work together to maximize quality of life for people with Spina Bifida, reduce and prevent secondary effects of Spina Bifida, and improve the quality of care for people with Spina Bifida. 

Congress created the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the CDC in order to put issues important to the disability community on our national public health agenda. The disability community is made up of very different and unique populations with different and unique needs. That is why I am very concerned about CDC's proposed consolidation plan. 

To add your name to this important letter, please contact Sarah Lloyd Allred in Mr. Wicker’s office (224-6253) or Kyle Brown in Mr. Lautenberg’s office (224-3224). I very much appreciate your support for Spina Bifida and your attention to my request. I look forward to hearing back from you regarding support of maintaining the NCBDDD at the CDC. Thank you in advance for signing the Wicker-Lautenberg Dear Colleague letter.

When I approached this to you earlier in the year, you talked about funds needing to be consolidated, but we have concerns that some of the more well known birth defects and developmental disabilities will get more funding...and we really need our own funding. My son is five years old with the most severe form of Spina Bifida; it affects not only his mobility (he is a full time wheelchair kiddo), but his ability to empty his bowels and bladder, and a severe reflux problem. (He throws up every night). Without this specialized funding, his issues may not be addressed as readily in various studies. I want to be able to provide my son with the most up and coming medical advancements...please don't take that away from us.

Sincerely,
Tracy Jensen

Dear Mrs. Jensen:

Thank you for taking the time to write and share your views with me.  Your comments will help me continue to represent you and other Californians to the best of my ability.  Be assured that I will keep your views in mind as the Senate considers legislation on this or similar issues.

If you would like additional information about my work in the U.S. Senate, I invite you to visit my website, http://boxer.senate.gov.  From this site, you can send a message to me about current events or pending legislation, access my statements and press releases, request copies of legislation and government reports, and receive detailed information about the many services that I am privileged to provide for my constituents.  You may also wish to visit http://thomas.loc.gov to track current and past federal legislation.

Again, thank you for sharing your thoughts with me.  I appreciate hearing from you.

Sincerely,

Barbara Boxer
United States Senator

So basically....this is what I hear from her letter...I didn't read what you wrote...I'm not mentioning your son....and btw have you seen the many OTHER legislative policies I have been a part of? 

I can't find the letter from Senator Feinstein, but she mentioned my son, wished him the very best, and promised to think about my words as she made her decision.  

I'm not a fan of politics, and I'm not trying to sway anyone's political allegiance, but I want to challenge you all to write to your senators, find a topic that is important to you and your family, write a letter, add a personal story to the letter and send it to both senators.  See how the responses vary, it really has opened my eyes.

Tuesday Ten....

Dear Life,

I am following a prompt from one of my favorite blogs

The prompt is the ten things I want to do before 2013. 
SOOOO here goes:
1.  I want to start walking regularly.
2. I want to drink more water and less diet coke.
3. I want to be sillier more often.
4. I want to take pictures of my kids every day.
5. I want to remind my husband that I treasure him every day.
6. I want to go to the beach once a week by myself.
7. I want to walk in the rain.
8. I want to made a difference.
9. I want our homestudy to be done for our adoption.
10. I want to LOVE my life EVERY day!

What would your list look like?  Link up here:

Kinder (sniff) garten

Dear Life,

This week has been a fantastical crazy week of getting my kids off to school. 
I felt totally prepared on Tuesday night.....lunches made....backpacks finished....clothes laid out...even went to sleep early. (This is not typical for me)
Woke up on time and everyone got ready and ate breakfast.  Before they went to school, Stuart sat each boy down and gave them a father's blessing.

(A father who holds the Melchizedek Priesthood may 

give father’s blessings to his children. These blessings

 may be especially helpful when children go to school,

 go on missions, get married, enter military service, or 

face special challenges. A family may record a father’s 

blessing for family records, but these blessings are 

not preserved in Church records. Parents should 

encourage their children to seek father’s blessings in

 times of need.)

He gave Kumaka his blessing first.  This is the first time Kumaka actually understood what was going on.  He sat in his wheelchair, folded his arms, and occasionally opened up his eyes to peek at his father while he was receiving his blessing.  All of a sudden, Kumaka starts to tear up....and then starts quietly crying.  The spirit was so strong in the room...the tears started flowing down everyone's face.  I held out my hand to Kumaka as Stuart finished his blessing.  As everyone else got their blessings, Kumaka was still very emotional.  It was touching to see him feel the spirit so strongly. (We talked about it later and explained to him what he was feeling)

The bus came, and we loaded Kumaka up, took a picture, and then followed the bus to his school.  (Annual tradition)
And that's where the picture perfect beginning of the school year spiraled for me.  
Kumaka has been placed in Special Education due to his orthopedic impairments.  He is supposed to be included in a typical classroom twice a day for a total of an hour.  That was the school's idea not mine.  I want to see him in a typical classroom all the time. We needed to discuss his placement in Kindergarten before school started, and have an IEP to legally put in place everything he needs, but that didn't happen.  I realized that my boy had to go to the Special Day Class for most of his day....and as I watched the cute little twins in their cute matching dresses go to another classroom, and the other adorable little boy march smartly to his regular classroom, the tears came unbidden.  Kindergarten is a huge milestone....you look so forward to sending your child off to school with a sweet little note and a lunch all made up...and you hope he makes friends in his new classroom and his teacher is nice.  I didn't count on getting blindsided by watching the kindergarten classes all lined up outside waiting excitingly for their teacher to come get them...with their parents taking pictures with big smiles on their faces...and wish my boy was with them instead of the special class.  I didn't get to go to the classroom to take a picture of him at his desk.  I came home and mourned that loss.  I felt like a train ran me over.  

Yes, I know that my son has a few extras.  I know that he needs different accommodations than other kids.  But sometimes...just sometimes...I look at him and think "he's just a boy who happens to use a wheelchair"....and I forget about some of the other things that goes on.