Jacob and our story
To understand why we so desperately need such a community, it’s best to hear a personal story. This is the story of my son, Jacob, and our family.
I’ll never forget the day Jake was born, about 6 weeks earlier than his due date. I remember being overcome with emotion as the nurse handed me Jake. Jake was delivered C-section, and his mom, Julie, was recovering in a hospital room. As a part of normal protocol, the doctors examined him. Soon thereafter, I remember the doctor saying something to Julie’s father who promptly dropped his head, as if dejected. The doctor then told me that based on the examination we should get Jake tested by the genetics department.
About a week later we were told that Jake had Trisomy 18-, meaning that his 18th chromosome was malformed. We were devastated, since the prognosis for Trisomy 18 babies was that virtually none make it past their first birthday. A week later we got a call from the genetic lab and they said, “oops, we’re sorry, but we made a mistake. Jake does not have Trisomy 18, he has Trisomy 9”. The good news was that it was not Trisomy 18. The bad news was that there was essentially no data on Trisomy 9. All we knew was that approximately one-in-a-million babies are born with this, and that Jake would be mentally retarded.
Like the realities all similar parents face, you quickly find yourself in a different reality – far different than you ever imagined. Suddenly you’re in the world of special needs, Regional Centers, IEPs, Special Olympics, special camps, physical therapy, occupational therapy, speech therapy, etc., etc., etc. As Jake grew and developed, albeit at a much slower rate then other children, I saw Jake not as a “mentally retarded” person, but as a unique person like anyone else.
Jake is really funny and he makes me laugh. At times, he can be a bit devious. One time we were out for a hike with my family. Jake’s grandfather went into a port-o-potty. When no one was looking, Jake purposely somehow locked the door so his grandfather couldn’t get out, running away with a devious, guttural laugh that had everyone rolling. Fortunately, we were able to get grandpa out J. Jake also reads at a high level, and spells very well. He has an incredible memory and a great sense of direction. He reads all the standings and box scores in the sports page every morning. He loves all modes of transportation, knows every BART stop, airport, and every car model and detail. He’s a good swimmer. He is fascinated by and can figure out just about any technological device, especially the iPad, iPhone and laptop, etc.
Like any typical teenager, Jake has aspirations and desires. He likes to be appreciated and succeed. But he is also multi-faceted with many different, often contrasting traits. He stutters and has difficulty speaking clearly, which makes him hard to understand. He is an incredibly picky eater. And he has some impulse control issues. He needs to be pushed.
Although people love Jake – especially his younger sister Jess – he doesn’t have many friends. I think he knows he’s different, yet I don’t think he thinks too much about it. Jake tends to live very much in the moment – he is sometimes happy, sometimes sad.
In many ways, it’s easier when special needs children are children. They are “cute”, they go to school, and they live with you. They are safe. There is a relatively clear path and plan.
As Jake becomes an adult, his future is less clear and worrisome. Where will he live? What will he do? What will be his passion and purpose in life? What will happen when I become old and frail, and when I die? I don’t want Jake to be a burden to his only sibling, his sister, or to be without others who care for him.
I want Jake to have a community of like people, who care for each other, who he can live with. I want him to have friends or even a life partner. I want him to be a part of the greater community, but the reality is that he won’t be “friends” with a “normal” person.
He wants to grow and be useful as a human being, as we all do, but he will need a support system. He needs a community.
And that’s why we need Sunflower Hill.
My mother, Dorothy Elfin, passed away from lung cancer in February of 2013. A lifelong musician and piano teacher for 60+ years, “Dot” was somehow sophisticated and down to earth at the same time. Although she didn’t have much experience with special needs people until Jake, she loved Jake dearly and treated him with the same respect and sincere manner that she treated everyone else.
So when she passed away and my family was pondering where donations should go, my sister Sue and I separately both suggested Sunflower Hill, knowing that Dot would be behind us and Sunflower Hill’s vision. Although it was a sad time for our family, I’ll always feel good that the donations made in Dot’s memory were the first dollars donated to Sunflower Hill, allowing us to launch and laying the foundation to build this community that is so desperately needed. I know she would be proud.
by Jon Elfin