He's a natural

Dear Life,

Today Kumaka started with his basketball league. 

He is the youngest on the team.  But he is amazing to watch.  HE HAS NO FEAR.  He was playing with high school kids who are very physical...and he held his own.  


He called for the ball, he tried to steal the ball (multiple times), he figured out how to pick up the ball from the ground, and he had a blast. 

It's like he was made to play.  I laughed out loud so many times watching him.  It was a joyous moment.  
I saw him loving every moment of it. 
I saw him doing what his brother does. 
I saw him playing with the big kids and owning his ability.
It was something to see.


I thought about those dark days...the days of uncertainty.  The days when we only heard doctors voices...and had no idea what to expect.  No one told us that we would see something as fantastic as my son saying "Hey guys...you wanna go play?" to high school kids. 

 No one told us that he would literally dance when finding out he was going to get to play.  No one told us that he would light up our life with his smile.



If only the doctors could have said "You know, we don't have any guarantees ..but check out this family's blog...contact this family...see what is available in your area," instead of scaring us.  So grateful to programs like Rancho Los Amigos Wheelchair Sports who treat kids in wheelchairs like kids....and teach them sportsmanship, independence, and love for the game.  


Today was a joy...today was another miracle.

What? We're adopting? How?

Dear Life,

Adoption.  My husband and I always thought adoption was an amazing thing.  For other people.  We have five beautiful boys, and our plate is full.  Our oldest is eighteen and our youngest is almost six.  We have battled ADD with our oldest son and are currently on quite a journey with our youngest son who has Spina Bifida.  You can read about him HERE.  

When  we were in the beginning stages of this journey called Spina Bifida, we were often overwhelmed, and felt grateful that Kumaka came at the end of our little family because there were times we felt like we never would have had any other kids had he been first.  As he gets older, we have become wiser, we have learned to be patient, to deal with the fact that we are not in control of his health.  We have learned to roll with the punches.  Although we never ever like seeing our baby in pain or suffering in any way, there are times when we feel like we have been truly blessed because of Spina Bifida.

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We have seen miracles, we have met amazing people, and our little man brings us so much joy every single day.  His smile brightens even the gloomiest day.

 One day I asked my husband if he would ever consider adoption.  He looked at me and said of course.  I was a little surprised he so readily agreed that he would consider it.  Still, we never really thought we even qualified for being adoptive parents.  Hello, my husband is 52, we have five kids, and let’s face it….we are not wealthy people.  So yes, we both felt like it was something we would do, but it wasn’t something we felt we would be able to do.  One day I was looking at an agency, at some of the kiddos , and I thought I would just contact them and find out what the criteria was to adopt a little girl with Spina Bifida.  It wouldn’t hurt to ask, right?  The agency was so nice, and the lady I spoke with sent me pictures of a few girls that had Spina Bifida.   (Here is where I confess this ISN’T the first time I had perused various websites,  saddened by these children in orphanages all over the world.)  As I clicked open to look at the pictures, one sweet little girl with huge brown eyes and brown hair stared out at me and I literally bawled. 

 I showed my husband her picture and he too fell in love.  When we looked at other websites, we felt saddened but never felt pulled like we were at that moment.  I emailed our contact person and asked what exactly the criteria were…and told her all of our “issues” (age, amount of kids, etc.).  After I listed my concerns, she told me that we still qualified.  We were over the moon excited…and terrified at once.  We felt very strongly that we were prompted to find this sweet girl.  We both feel like we have been blessed with knowledge, love, and the ability to help another child living with Spina Bifida live  life to the fullest.  We felt so strongly that although Spina Bifida is the hardest challenge our family has ever been through, it has also been a blessing in many ways.  How could we be so blessed and not help another child who just needs a family, love, and support?  The only way we can show Heavenly Father how grateful we are for His love, for the blessings He has given us is to help at least one of His children.  Kumaka was born into a family while Sofi was taken to the orphanage.   It is heartbreaking to think about these children wasting away…because in other countries children with disabilities are not considered worth living.  This sweet girl has the right to be loved, to have a forever family. She has the right to have the best medical care available to her.  She has the right to have five big brothers love her and adore her. Sofi hasn’t smiled yet, she hasn’t spoken yet and she’s three years old.  We decided we could help Sofi smile, we could be her forever family.

 We decided to go forward with the adoption.  We sent papers to the country in August…and every single day for a month we held our breath to see if the court would find us a worthy family…and allow us to be her parents.  They gave us the green light.   Now we are in the crazy busy fundraising madness.  It costs approximately $30,000 with travel fees.  We don’t have that kind of money lying around…so we are trying to be creative about raising money.  We have raised a little over $1000.  We look at each thousand as a goal.  We only have 30 goals.  We have met one.  So we are basically 1/30^th of the way done.  We have sent $700 to our agency for the initial paperwork fees.  We are now officially in the program.  Now we need to come up with $9000 to cover the various fees that come up while filing papers as well as pay for our Home Study.  Although it’s stressful to think about the money…and how we’re going to come up with it all, we have already seen miracles.  People have stepped up to become angels to help us bring home Sofi.  We have seen people donate money and we don’t even know who they are.  Our community has rallied behind our little Sofi.  An article was written on our local magazine, Fountain Valley Living, and three fundraisers have been planned, one of them being an $1800 diamond heart pendant that was CREATED for this event by one of the local jewelers to raffle off.  A dear friend who is a photographer is doing mini sessions next week and 100% of the proceeds are going towards Sofi’s adoption.  Who does that?  I am so in awe by the amount of people who have come together, and shown us LOVE.  That’s what the world needs to see more of….that is what will change the world.  We love Sofi, and we truly cannot wait to bring her home. 

Our boys are excited to have a sister (of course after their initial chagrin about the fact that she was a girl…they are so used to it being a boys world).  We talk about Sofi a lot, and we ask them questions all the time.  We asked Kumaka the other day where Sofi will sleep.  He said she will sleep in her bed…in his room. 

 Kumaka likes “sandwich” hugs.  I asked him where Sofi would be in the hug sandwich.  He said “I will be on this side by daddy, and she will be on that side by mommy, and then we make a sandwich”.  Adorable, right?   Kumaka told me he would teach her how to talk, and he would take her to physical therapy with him.  He told me he would take care of her when she has to go to the hospital.  I love the fact that he is so willing to take care of her. 

This journey will take a year, and I’m sure we will face challenges along the way.  But bringing home this sweet angel is well worth it.  Once she is here, we will have another set of challenges.  We know that we will be okay….that God has brought us here and He will be there for us throughout the journey. 

  

Living Beyond the Diagnosis

Dear Life,

I have introduced you to just a very small amount of families that are living with Spina Bifida.  In sharing these stories, I hope you have seen what these families have gone through (in a small way)....from devastation when finding out the news to living beyond the diagnosis.  That is a HUGE phrase.  LIVING BEYOND THE DIAGNOSIS.  LIVING.  That's what it's all about.  And that can be said for any person dealing with a medical diagnosis.  It's just that.  A diagnosis.  Yes, in this case these people have Spina Bifida.  But Spina Bifida does not have them.  It does not define them.  How they live their lives defines them.  Who they are as people (even little kiddos) defines them.  Their spirit defines them.  Sometimes, with surgeries or illnesses, they regress, and sometimes it would be easier to stay home and not make the effort of going out, and living their life.  But that is why we are here....to live life.  And all these families and thousands others are living their lives and living it well.  It can be hard, and we cry sometimes.  We laugh more, we live more.  You can see that in their smiles.  Thank you for taking the time to read about these families.   I would like to thank all of the people who shared their hearts with me, and allowed me to share their stories with you.  You may not know it, but it is really hard to relive some of the experiences we have shared.  I am really grateful to all of my wonderful friends for opening up a window into their lives.  I also want to thank all of my readers for always being so supportive of my family, Kumaka, and little Sofi.  This is has been an amazing month for me.  A reaffirming month....a month of strength, courage, endurance and love.

If you missed any stories, look below and you will find a link to that post. 

Nathaniel's Story  

Madi's Story 

Brendan's Story 

Roman's Story

     

Toby's Story

                        

The Lost Children

Katie's Story

Grant's Story

Halle's Story

Noah's Story

Taylor's Story

Abi's Story

Jet's Story
 

Kenidee's Story

Keely's Story

Logan's Story

Neveah's Story

Carla's Story

Yordanka's Story

Michael James' Story

Micah's Story

Zachary's Story

Tanner's story

Hunter's Story

Jonah's Story

Dryden's Story

Annabeth's Story

Kumaka's Story

Owen's Story

Spina BIfida Awareness Day 30 Kumaka's Story

Dear Life,

Have you enjoyed the posts this month?  I know I have.  If you have wondered what inspired me to invite these families to share their stories it is really quite simple.  When I was pregnant with Kumaka, Stuart and I felt like we were old pros. 

 After all, this was our fifth pregnancy.  When we were headed to our detailed ultrasound at 19 weeks, we were just thrilled to find out if we were having boy number five or finally having a princess.  It was a beautiful, sunny, summer day and we talked all about the vacation we were leaving for the very next day. (That ended up not happening)  When I was taken into the ultrasound room, they said that Stuart had to wait in the waiting room while the tech did basic measurements.  At first, I chatted away with her, but after what seemed like forever, and her increasing quietness, I started to get fidgety.  Finally, she told me she was getting Stuart and the radiologist.  Stuart came in and grabbed my hand.  I really didn't think anything yet, not until the radiologist came in and kept looking and looking without sharing anything with us.  

They didn't point the screen towards us or anything.  Finally, he put the wand down, and said those fateful words "I'm sorry, your baby... " and the tears came rolling down my face.  It no longer mattered that there was a room full of other people getting ultrasounds....everything faded out.  He told us about "the lemon sign" showing hydrocephalus.....about spina bifida (not being able to see if there was a closed lesion or open)...about having two clubbed feet.  He then told us we have a small window to terminate.  We asked him what the gender of the baby was....he said it's a boy.  We asked for a picture (no, they didn't even offer one to us) and he gave us a picture of his face.  He told us that typically they don't give pictures to families of fetus's that have abnormalities.  He then told us we would have to make an appointment with our OB to discuss what all of it meant.   Talk about a bomb getting dropped in our lap.  We sobbed all the way to the car.  Our world was shifted and really would never be the same. I cried that messy ugly cry all the way home.  Before we got there, Stuart pulled over, turned off the engine and grabbed my hands.  He looked me in the eye and said this "Do you remember the conversation we had about having more children?  How I told you that I was pretty content with four children?"  I sniffled and nodded my head.  "Do you remember what you said?  You told me that you felt that there was another spirit waiting to come to our family.  This baby is meant to be here....he's meant to be with us.  It will be ok".  That still gives me a warm feeling in my heart, to know that my husband loves me and our children so much and is willing to listen to inspiration and remind me of that sweet moment.  After that, we did a lot of internet research, and the one thing I was looking for that I couldn't find was stories of hope.  We never thought termination was an option, and after the third time it was brought up we very forcefully told them to please stop offering it as an option.  But scouring the internet didn't help us at all...and the doctors told us worst case scenarios.  I was very scared, and sad.  I didn't like being around people who were pregnant with healthy babies.  I felt isolated...like no one knew what I was going through.  Every night, I would crawl into bed exhausted, and get as close to Stuart as possible.  I could not sleep if he was not holding me.  Poor guy...I'm sure he didn't sleep the whole pregnancy.  We heard scary words, mental delays, bowel and bladder issues, learning disabilities, inability to walk, decreased life expectancy, bladder and kidney problems. 


When it was time to have Kumaka, we were excited to meet him but scared at the same time.  I had him via C Section on December 20th, 2006. 

 I got to kiss his sweet head, and they whisked him off.  Six hours later, the surgeon came in and described what he was going to do (close his back and place a shunt).  I was exhausted because I hadn't gone to sleep yet. 

 I wanted to see my baby.  I asked him if I could see him before they took him into the ER.  He had the nurses bring him in.  I wasn't allowed to hold him, so I held my hand out to the incubator and sobbed.  I was so afraid I would never see him again.  He was beautiful.  

That was the first time he defied the odds.  After that surgery, he left the hospital in six days.....the day after Christmas.  That was our Christmas miracle.  

Since then, we have seen the inside of so many doctors offices, emergency rooms and hospital rooms.  We have seen the PICU three times.  My boy has been in so many casts...

just this year I think he's almost been in a cast longer than he's been out of a cast.  He's had 19 surgeries. Although none of that is fun, it doesn't define who he is. 

 Kumaka is a vivacious, silly, hilarious little boy.  He loves knock knock jokes, the color green, and he loves to cause mischief.  He laughs so hard you can't help but grin.  

He flirts mercilessly.  He loves to do wheelies and race people.  He loves to swim and he loves basketball.  He might run your feet over. 




 He is quick to apologize if he hurts your feelings.  He is tenderhearted and so sensitive to others.  He is loving and kind.  And we wouldn't change a thing about him.  

When you get a shocking diagnosis, the offer to terminate, your world becomes blown apart.  It's easy to get lost in it all.  But maybe, just maybe, if you look beyond the diagnosis to what your child can be and will be....you will be okay.  Your child will be okay.  Yes...it can be hard to see your child go through challenging things. 

 It sucks to sit in a hospital watching your baby hurt.  There is so much more than that.....so much joy and happiness.  We have met the most amazing people, the most amazing children and adults with Spina Bifida.  We have seen miracles.  We are blessed.  His smile melts our heart and makes the world a better place.  






This month is a wonderful celebration of life, love, and joy.  That's what this is really all about.