Hope

Dear Life,

When I met Sofi a year ago, I was so sad to see how very tiny she was. I didn't know at the time, but she only weighed 20 pounds at 4 years old. When I held her, she was so stiff, and she would arch her back because she was unused to someone holding her.  I didn't see any of that, I just saw her beautiful brown eyes and gorgeous smile. These pictures were from my visit. I wasn't allowed to share her face then. But look at her tiny fingers. 

I really had no idea what to expect when we brought her home. I knew that I fell in love even before that visit. That was enough. 

When I brought her home, my husband and my boys fell under her spell. They adored her. 

She was so fair, and so tiny. She didn't reach for anything, she really didn't do much. Oh but her smile lit up my world. This photo by Chelsea Abinante Photography shows a brand  new to America Sofi. She wouldn't even look at the camera. 

Isn't my family beautiful? I love them all so much. This photo is a few months later courtesy of Pics by Presley. She's smiling even more but still quite the photography challenge. 

Over the summer, Joanna Penney took this photo of her. A much more aware face.  She is so beautiful. We love her so. 

 

This was last weekend prior to the  surgery to place a Gtube in. She's looking at me and laughing.  She was playing with the hanging toy. She is now engaged in life around her. 

 This was from today. A day out of the hospital and already living it up at the beach. And already, both Stuart and I can tell a profound change in her. She has been tolerating her feeds, eating per mouth three times a day and has a GTube feeding 4 times a day. She is FULL. She is happy. She tracks with her eyes better. She has a lightness about her.  She holds her head up

more. It's amazing. 

I didn't want surgery for her, but thankful that this was available for her and it's helping her. Thankful for the team at CHOC Children's that have really been an amazing advocate for her and have kept her history at the forefront of their minds as they map out her health care. 

I think back, at the sweet little angel who didn't even have the strength or knowledge to raise her hands to play with toys much less hold up her head, and am SO grateful, eternally grateful for each and every one of you.  Children like her are really considered worthless in her country. Their lives are a burden to the community. They aren't given enough food to sustain themselves and sometimes they are stuck in deplorable conditions. Because we were crazy, we saw a future for one of these children, and we went out on a limb, Sofi now has a family. Because of all of you we are watching our daughter bloom right before our eyes. I can't wait to see what she will become. 

Paper does not define him

Dear Life,

One of the catch phrases in the Spina Bifida community is Redefining Spina Bifida.  

de·fine: to determine or fix the boundaries or extent of.



When your child is born with a disability, some doctors like to keep your child in a box. 
They want to do what's the least expensive, least time consuming, least amount of work on their end.
They say "Your child won't walk; his level of damage to his spine is too high and it's just not possible.  A wheelchair is his only option."
They want to define his abilities by the diagnosis.

There are so many other factors when dealing with abilities. 
Like a child's determination to do the "impossible". 
Like a child's fierce independence.
Like a child's will.

Let's give that child a chance.
Let's give him options.
Let's see what he can do.

He might just surprise you.
He might do more than what the paper says he can.
He just might make up his own rules.

That is Redefining Spina Bifida.

Today I was speaking to Kumaka's physical therapist about what we should be doing about his walking.  I stressed to her his absolute desire to walk (which is funny because I never pushed for that...my biggest push was for him to stay healthy) and for independence.  We were talking about ways he can accomplish his desire to walk, being safe while doing so, being independent, and being as fast as little Speed Racer can go.  

And then she surprised me by saying this:
"Kumaka has taught me a lot.  He has taught me that what is on paper doesn't matter.  It's up to the child..we have to provide things for him to do based on his desire and ability to do so.  Some doctor's would push for him to just be in a wheelchair.  Cheaper, easier, done and done.  Thankfully, Dr. Rosenfelt is on board with him standing and walking.  With other doctors that might not be the case."

I am so grateful that we have a physical therapist that goes to the beyond the typical to give Kumaka the best of the best.  I am grateful to Dr. Rosenfelt and his team at CHOC for not putting Kumaka in a box.  

I am amazed daily by this boy....and how he Redefines the things on paper every day.  

Photo by: picseez

Why our hospital matters

Dear CHOC,

Until 6 1/2 years ago, I had no reason to enter a children's hospital.  Not until this sweet boy was born.








Our little miracle.
Born on December 20th.
Born with Spina Bifida, hydrocephalus, and two adorable clubbed feet.
Born with the spirit of a hero.


For a few years, we didn't take him to a children's hospital.
Not until last year.
And when we stepped into CHOC Children's, our world changed.

Our child was treated like a king.
The team that treats him genuinely care.
He's not just a number.
They remember him.
They ask him about different events in his life.
The nurses remember him. (Even though there are thousands of children that are treated there.)
They ask him to do his pirate face.
They ask him about his soon to come home baby sister.
There are games for him there.
There are crafts at clinic.
There is even music if you go at the right time.
There are therapy dogs that come through.  Even through clinic.
When he recently went in for an endoscopic procedure, we walked into his room, and child life had been there...and left him a look and seek book, coloring sheets and crayons, a magnadoodle, and the Disney Channel was on.

What a comfort to him.
He didn't have time to worry.
He was busy from the time he wheeled in.

And then there is my wait.
While my child is wheeled off....

I sit in a beautiful, clean waiting area.

Volunteers ask if I need anything.
Everyone that works at the desk is kind, and patient with parents who are worried and sad.
There is a screen that parents can check to see where their child is at in their procedure.

Before  we had our Kumaka, we never thought about what would be important in a hospital, we just tried to stay out of one.
But having a chronic child taught us some things.
And one of the things I have a gratitude for is those people, companies, foundations, and groups that donate money to hospitals.
I am grateful that so much thought and planning was spent on creating a beautiful hospital for my child to be treated at.
I am grateful for things I never would have thought mattered:


Themes for every floor
Shells on the cement by the valet
Choco bear welcoming us
Color...everywhere

Ryan Seacrest DJ booth
Elevators that have ocean themes
Colorful walkpaths that light up at night
Child Life specialists that put on the Disney Channel, and leave activities for him on his bed
Colorful lead vests in the Xray room
Snacks being offered to not only my child but to me
Ipads during procedures
Emergency Rooms for Children
Colorful paintings on the walls
Even colorful things to look at on the floors
Interesting architecture...not just boring plain white walls



I haven't even spoken of the doctors. 
Of the amazing care we get there.
Of the specialists that quietly walk the corridors with strength, knowledge, and a sweet smile for our kids.
Of the nurses who kindly talk to the children, take their vitals, and listen to the parents.
Of the state of the art equipment that is used to test, diagnose, and treat our babies.


These things all cost extra money...but they create a hospital of wonder, a hospital of peace, a hospital that welcomes my child, a hospital that holds my heart in it's hands and protects it. 

Thank you CHOC.
A million times thank you.


And to those that provide the funding.....thank you.  It matters.