My Special Life

Thursday, December 30, 2021

The first Lucas T. Ahn Family Scholarship, Planting of a Small Seed.

So, I did a thing!!!!

When Lucas turned 10 years old, I wanted to do something special in his honor as a gesture of gratitude to the Universe for having him live this long. To achieve this, I have been able to set up the first Lucas T. Ahn Family Scholarship with the partnership of Dup15q Alliance. Its purpose is to encourage budding researchers to invest their talent into studying Dup15q Syndrome. In 2021, it was so disheartening to hear about so many individuals with Dup15q pass away from SUDEP or suffer complications from seizures that require prolonged hospitalizations; such as aspiration pneumonia, status epilepticus, bowel function disorders, and even psychiatric crisis. These stories could well be about our family.

When Lucas was still an infant and we had no idea about Dup15q Syndrome, I had so many dreams for his life and whatever he decided to become as an adult, I vowed to support him every way possible only to have those dreams shatter and fall through my fingers once we received his diagnosis. The money I would have spent for his music lessons, sports gear, Kumon, maybe even a nice private education stayed stagnant, like energy that has nowhere to move, and this scholarship is my way of moving this stuck energy into something good on his behalf.

I'm so grateful for the Alliance in helping me to get this set up. Studying rare diseases is not a glamorous choice many scholars would pick as their specialty but getting talented young people to choose research in Dup15q is a very important priority to ensuring deeper knowledge, targeted treatments and possible cure for the syndrome. I am hoping I can fund this every year, if funds permit. This is so exciting and I can't wait to read essays from applicants soon!

My small drop of contribution pales in comparison to what the likes of the Chan Zuckergerg Initiative is doing for the rare diseases community. But, I believe earnest intentions have just as great an impact as projects of great scale because I have faith the Spiritual realm sees all things and weighs all things with measures far different than what we use on Earth.

"Then a poor widow came along and put in two small copper coins. Jesus teaches the disciples that the woman gave more than the rich. The poor woman, as a widow, would have had no source of income after her husband's death. Therefore the two small copper coins were all she had - and yet she offered them to God." (Mark 12:41-44)

The Lucas T. Ahn Family Scholarship aims to support a junior/senior undergraduates or first-year graduate students who have an interest in an opportunity to network with colleagues at all career levels, a semester exposure to a laboratory environment that targets Dup15q research. The scholarship is a one-time $2,500 gift.

Well-prepared, independent, and committed individuals looking for a chance to form life-long scientific collaborations and an interest in Dup15q Syndrome research are encouraged to apply.

Participants can anticipate to work 10 hours/week in the lab of their mentor, attend research seminars, participate in lab meetings.

The criterion includes:
-GPA of at least 3.2
-Junior or Senior undergraduate status or first-year graduate student
-A short essay on why they are applying
-identification and sign off by the potential mentor

Clink scholarship information to apply. Best luck to all applicants!

Well-prepared, independent, and committed individuals looking for a chance to form life-long scientific collaborations and an interest in Dup15q Syndrome research are encouraged to apply.

Participants can anticipate to work 10 hours/week in the lab of their mentor, attend research seminars, participate in lab meetings.

English

Thursday, November 11, 2021

Ahn Family Adventure Series: Disneyland and California Adventure

Friday, August 6, 2021

Ahn Family Summer Adventures 2021, Santa Barbara

Due to the pandemic, this is the first time in 10 years we did not stay at UCSB Alumni family Vacation Center, but the Ramada in Goleta did not disappoint! Can’t wait to get back next summer!

Stearns Wharf-Natural History Museum-Ramada Hotel-Moxie Museum-Goleta Beach-Bacara Resort

There is No Shame in Intellectual Disability

A work colleague asked me a while ago why I don't post as many pictures and stories about my older son on social media as I do of my younger one. He has seen my older son at a Christmas party and is, I am sure, very aware that my older son has intellectual disability and needs a seizure helmet for protection. At the party, we needed to sequester L at an adjoining room to where all the festivities were happening because L could get into sensory overload quite easily with all the noise. I'm not sure why my gut reaction was to take offense to his comment. I took it as him assuming that I don't post much about L because I am ashamed of him, which is very far from the truth. Does he even realize I started getting active on social media because of L's condition? Most of my social media pictures have been about L until his little brother came along 4 years ago. Why was he taking tally of how many posts and photos I share of L versus his little brother, anyway? I didn't answer his questions because well...how do you answer that when it isn't even true? What was the answer he was looking for from me, anyway? And, I don't want to be in a defensive mode because I'm too tired explaining myself to people who already have negative assumptions about me. Maybe I got it all wrong. Maybe he really didn't have negative intentions about what he asked. When it comes to L, I can get overly-sensitive to comments, questions and innuendos but it instinctively comes out as a protective mom. Truth be told, I don't post as much now as L gets older because I am getting more and more protective of him from a whole bunch of people who speak without thinking first. I'll share a few unsavory encounters below.

I remember someone asked me in an overly-caring display of concern about L and asked how was her "little guy" doing these days. I looked into her eyes and I just didn't see the same depth of concern that matched the concern in her words. I saw someone who really didn't care and was internally mocking me and looking at me and L as being less than. She then proceeded to share some horror stories of how children with special needs were abused in nursing homes she worked for in the past and how a distant family had a son with autism back in her country and all the strange and weird things he does. I didn't find her stories comforting, encouraging or supportive at all but maybe she believed they were. In fact, they made me angry, fearful and offended. Sometimes, what people say and what I see in their eyes totally do not jive and this was one of those encounters which sent shivers up my spine. If you don't care about someone, then why go out of your way to act like such a caring, saintly person? Is it to make yourself look good in front of others? It would be better just to not say anything at all! She kind of made me physically nauseous.

Again, maybe I'm overreacting and have it all wrong. Maybe she really does care but I'm over analyzing things. My intuitions about people have been on spot so many times in the past and I trust it more than what I see or hear with my senses.

I remember an encounter with a nurse colleague (yes, a healthcare worker who tends to the sick and disabled) who on the surface seemed to have compassion for her daughter's class mate with a physical disability then proceed to make mocking imitations of her movement and call her "that poor deformed child" as if there was nothing wrong with that! It took everything in me to not lunge because I need to stay our of jail for my kids.

Lastly, during a family dinner outing, a physician family member recommended a child neurologist at the local children's hospital who may have information about L's condition. At that point, I had researched day and night about L's condition and consulting his recommended neurologist would offer no new information or treatment. I was already connected to the Dup15q Alliance who offer the most expertise on the syndrome in the world. I politely declined his contact and he got angry with me! He seemed to take me as some ingrate and how dare I not take his advice! Sometimes, when people offer help it's not really to benefit the receiver but to make themselves look good.

I'm learning to let things roll over me and just brush things off, as best I can. When it comes to L though, it's hard to do and I simmer inside and think about encounters for days, weeks, and even years! Maybe next time I should be more brazen and snap back. I hope I don't burn bridges by doing that and I'd feel horrible if I were totally off the mark!

How would you handle such situations?