Happy 5th Birthday, Ethan Jacob!

Dear Ethan,

I'm a bit emotional today as I look back 5 years ago. Has it really been 5 years? I can't believe it. You've had challenges early on in life, we were hit with diagnosis after diagnosis, numerous medical appointments, countless therapies of different kinds, a crazy 911 call, and yet here you are standing tall.

When I found out I was pregnant with you, I was so excited, I couldn't wait to hold you and teach you all the things I experienced as a child, but you had a different plan. You instead taught me how to be resilient at times when I thought I would break. You taught me how to become a better person, you taught me how to appreciate and value the smallest things in life, you taught me the meaning of life that no matter what life throws at you, it's all good... (just like Pete the Cat, remember?) That was your plan after all!

Happy 5th birthday my love! Never ever stop chasing your dreams because we believe in you. Never ever give up because we never have and we never will.

Love,

Mom

PS. Btw, good job blowing out the candle! Good OT work you got there. Hope you had fun celebrating your birthday today at school, at the daycare and Chuck E Cheese. Hope you and your lil sis Emma will enjoy Disneyland as well! :)

Thank you for my chocolate cake, Tita Nerie!

Who would have thought Ethan blowing out the candle would make me so happy? 

To My Husband, Happy Anniversary!

This is what I received at my work email this morning...

"I love you honey bunch, keep smiling because that’s what makes you beautiful.  Our children don’t know yet how lucky they are but trust me they feel it because they’re always clinging to you lol.  Ethan will be fine, he’s getting a lot of help so don’t let his outbursts get to you, in due time he’ll be able to control it."

Last night I was crying, I was overwhelmed with my work and home responsibilities. My in laws went home to the Philippines for a family emergency, they primarily watch both our kids - 3x a week - Wednesday to Friday. They take Ethan to his therapies. They're a huge help and I couldn't be more thankful and grateful for them. Now that they're away, I had to adjust my work schedule, I work from home Monday afternoons and Fridays so I can tend to Ethan's therapies. Because of this schedule, my workload is increasingly piling up. I need to better manage my time. Or maybe I just need a break?

Anyway, my husband has been doing the same. He also tries to work from home on Fridays and take Ethan to his appointments. We're so lucky to have the flexibility with our jobs. Our family's journey isn't easy, raising our child with special needs requires a lot of patience, strength, and unconditional love. We both have to roll with the punches because each day brings a unique set of challenges.

My husband is my strength and he makes me smile with a phone conversation that we just had:

H: Hey Hon, I'm getting wings for dinner
W: That's good but I have to take Ethan to his therapy after work so I'll see you after
H: Oh crap I forgot about that. Btw, I ordered 15 pcs of flaps
W: Really you can order just the flaps?
H: Yeah apparently you can, it's just 10 minutes longer. That way we don't have to fight for the flaps.
W: Haha great!
H: See honey? That's what I do. I improve your life by ordering the flaps.
W: (I don't know why I found it funny but I was laughing like crazy)

Stupid maybe silly conversations like that matters a lot, it makes us laugh and it's true - he improves my life. (OMG, did I just say that?!) He found my current job, he maintains our cars, he finds my phone everytime I can't find it, he cooks for our family, he drops me off and picks me up from work, he proofreads my emails, he's my walking dictionary (or wikipedia in this generation), he updates me with current events. What else can I ask for? He's my personal assistant! LOL Don't get me wrong there are days when we argue a lot or I just want to smack him in the head but overall he is my everything. He makes me smile on a bad day and I know he got my back. I will never get through our son's journey without him. SO, Happy 5th Anniversary my love! Thank you for everything! There's no other man I would want to spend the rest of my life with than you. I love you.

Stanford Developmental Pediatrician Consultation

We visited the Stanford Children's Hospital last Tuesday - August 23rd for a consultation with a Developmental Pediatrician. We waited almost 4 months to get this appointment and my husband and I took time off work to take Ethan to Palo Alto taking almost 2 hours in rush hour traffic.  We weren't sure what to expect, perhaps it was to hear something different about Ethan's development that we hadn't heard before, secretly hoping that they would have a magical answer that would unlock our son's potential. Wishful thinking that abruptly ended when Dr. Loe expressed concern about Ethan's plateauing milestones and a wall he seems to have hit.  The value in our visit was this reality check and subsequent discussion of what our rights were as parents in the IEP process.  We had no idea that by law, assessments by the school district should be done every three years; it had been over 2 years since Ethan had a formal assessment. We felt that we have wasted the last 3 years of Pre-K not questioning why the school seemed so nonchalant about Ethan's lack of progress, this whole time we should have been pushing for more services, trying new things, not being afraid to push back and demand the best for our son.  As parents it is our responsibility to be his advocate and voice when the system tries to pretend everything is ok, the harsh reality is that in a system full of bureaucracy and red tape we had let him down. This was a wake up call and lit a flame under us to research the heck out of what our rights are in the IEP process.  We realized that day that Ethan needs us to be a stronger voice for him and that we won't stand idle when either the county, school district, Kaiser, insurance companies, whomever tries to slow us down.  Even though the development pediatrician didn't really tell us anything new about our son's health that we hadn't already heard, it was us who developed a little bit as parents.