Monday, August 28, 2017

D.C. for the SBA

I'm BACK!!

0 kids
1 Spina Bifida Association
2 cross-country flights
3 days of leadership training
18 new friends
Floods of memories.
Monuments. Memorials.
Fried chicken and donuts.

I am back in D.C.!!
(Okay, I was there a week ago. It's taken me a while to collect my thoughts)

I feel like I look like my dad in this picture...classic Garrett squint

Some people know that I am a member of the Northern CA chapter of the Spina Bifida Association. What many people don't know is what the Spina Bifida Association actually does. Truth be told, prior to my weekend leadership institute in DC I was one of those people. Here's some highlights of super important things that the SBA is doing right now:

Spina Bifida Problem: Expectant mom goes in for 20 week ultrasound and is told her baby has spina bifida and is given options. Option A: Terminate. Your baby will be a "water head" and have "poor quality of life." Option B: If you make the decision to keep your baby, they will be paralyzed and have brain damage.
What SBA is doing about this: SBA is working with the Michigan chapter to pass a bill in Michigan (and hopefully all states, eventually) that requires doctors to provide current, accurate information about spina bifida to newly-diagnosed parents.

Spina Bifida Problem: Kid with spina bifida goes to a well-visit with his pediatrician who asks ignorant questions about spina bifida and doesn't address pertinent issues like bowel/bladder continence or non-verbal learning disability. 
What SBA is doing about this: SBA brought together clinics and health professionals to update the Spina Bifida Health Care Guidelines which outline the key areas of clinical and psychosocial care needed for the spina bifida community. Due to come out next year, I will be able to print out take the guidelines for Evan, age 5, to his pediatrician to ensure that all areas of concern are being monitored and addressed by his primary care doctor. Doctor should also be able to access these guidelines via the Health Care Guidelines app.

Spina Bifida Problem: Johnny goes to ILoveSB Clinic where his doctors monitor his kidneys via ultrasounds every 6 months. Sally goes to SBisgreat Clinic where her doctors have cathed her from birth "because most people with SB need to be cathed eventually." Peter goes to SBrocks Clinic where the doctors prescribe medication to all children with spina bifida for both bladder and bowel continence. Urologic care for each of these children is determined by the doctors' preferences rather than by proven practices that best protect their kidneys and best promote continence. 
What SBA is doing about this: SBA helped create the very first urologic protocols for treatment of spina bifida that are currently being tested by five clinics. Once they are shown to be effective, they will be closer to requiring these protocols to be followed by all doctors nation-wide.

These things all matter and make a difference to me and my family. They matter for the health and increased life-expectancy of people with spina bifida. When you donate to SBA via the Walk-n-Roll or otherwise, you are furthering each of these projects in addition to continuing social gatherings for our local chapter and funding my attendance at important leadership institutes that teach me how to advocate for my child. Thank you!

Here's Evan's Walk-N-Roll page: Team Rock Your Socks!

Monday, August 7, 2017

My Kids

The other day at the park, I don't remember exactly what he did to annoy me, but I was testy and told Evan, "You're really pushing your limits. You need to show me you can play well at the playground or we're gonna go home." He walked off and grabbed his basketball and started dribbling towards me. Then he said, "You said I'm pushing my limits? I'm just pushing ONE limit. I'm pushing my ball limit."

After Evan said the prayer for lunch, he asked, "When I said the prayer, did you feel the spirit?" I said, "Yeah, I did." and smiled at him. He smiled back and said, "I did, too. The spirit was blowing so hard!"

Anytime Seth sees candy come out of the candy machine he squeals, "Oh!," like he's surprised, even though I'm pretty sure by now it's no surprise to him. Also, anytime we give Seth instructions, he says "Oh," like, "Oh, ok."

Evan's new obsession is dribbling his basketball. He can do it while sitting, while running, and back and forth with both hands. He throws the ball up in the air to himself and then dribbles back and forth on our back patio. It reminds me of my brother, Nate, who would play basketball with himself all the time.

Don't worry if you can't understand Seth. He comes with a personal translator, Evan. He'll let you know that "seezee" means cereal, "nuk" means drink, and "b ball" means basketball. He calls Evan "Evie," which I think is adorable.

Seth loves to put on shoes. His own shoes on his feet, other people's shoes on his feet, and other people's shoes on their feet. He's our little shoe helper, always bringing us our shoes when it's time to go out...or even when it's not time to go out, for that matter.

Evan always talks about numbers (time, ages, length), even though he has a very confused understanding of them right now.

"Can I just watch a show for 10 more hours?"
"Was I 3 when I was in your tummy?"
"I'm 18 feet tall."
"You were in the shower a long time--like 10-49 hours"
"I only watched shows for, like, 270 seconds."
"Will I be 5 tomorrow?"
"We went to that park last year [meaning yesterday]."

It's all very tricky.

Evan has a hard time playing independently. He hates it. He often refuses to do it.
Evan: What should I do now?
Me: Play.
Evan: When should I stop playing?
Me: Never.
Evan: But I don't want to never stop playing!

Seth's favorite foods: cottage cheese, cereal, pretzels, grapes, bananas, yogurt, bread, cookies, corn on the cob, candy he sneaks from the candy machine. Seth gets so happy anytime he's able to reach snacks in the pantry or fridge, and the proud smile on his face as he brings the food to me is just too cute for me to tell him no.

Evan's favorite shows: Anything PBS (Super Why, Cyberchase, Word World, Kratts Creatures) He's subtle about the way he asks for things he wants, i.e. "What is something I can do that has a button on the side and you turn it on, and it's black..." TV?   "Yeah! That's what I want to do!"

Both boys gravitate to the sound of the ice cream man, with the little guy repeating "i keem! i keem!" Both boys also notice every single "air pleen! air pleen!," no matter how high in the sky.

Seth's smile melts me. He snuggles my neck and sings songs with me before bed. He gives slobbery kisses on demand. He never responds to his own name.

Evan wakes up early and entertains himself or lays next to me in bed until I'm ready to get up. He loves family cuddles and getting back or leg rubs. He makes me laugh. And yell. I do best when I have solo time with Evan because he's better behaved when he gets the attention he craves.

These are my boys!