News clip

Here's the Clip from the CBS 5 news story on the new UCSF Benioff Children's Hospital that will open Feb 1. It was sweet to see Maggie in there. This is just part of her legacy.

If I didn't do it right, here's the link

http://sanfrancisco.cbslocal.com/video/10254020-inside-the-new-ucsf-benioff-childrens-hospital/#.U5fuIeoDST4.email

Silver screen to small screen in one week

Last week Hollywood.
This week the local news.
My entire 15 minutes of fame happened in the first week of June 2014

After my whirlwind trip to LA last week I came home to find out that the local CBS affiliate, KPIX Channel 5 in San Francisco, is doing a story on the new UCSF Benioff Children's Hospital and how families contributed ideas and suggestions for design and amenities. I was interviewed for the story last Friday and it will air tonight on the 6PM news.

Because the hospital is still under construction and the interviews were conducted on site, we are sporting hard hats and bright vests and wearing boots. That is just the look I want transmitted across the world.

To be honest I was a little worried that this could become a pity piece about me and Maggie, but I am quite sure that is not the case. The producer from Channel 5 was very respectful of that.

So you locals tune in, I will post a link when it's up

For the children

For the children and teachers killed at Sandy Hook School,
for their families,
for the rest of the school community,
for the Town of Newtown, Connecticut
and
for all of us.

A very very sad day.

Maggie the Magnificient

For those of you just tuning in, let me get you up to speed.

I have an amazing daughter.

Last night Maggie and I were home alone folding laundry and watching 60 minutes. Maggie hates television. She cannot see well enough to enjoy it and worst of all, when we are watching it that means we are NOT paying attention to her. This, of course is unacceptable.  She said what she always does.  “Mom, I don’t like TV.”  And I respond the way I always do , “too bad, I do and I’m watching this.”  That cracks her up so she does it over and over again and I give the same response. It’s a never ending game.

After about seven or eight rounds of this game, my friend Lori called me. She could not find CNN on the TV. Her teenage daughter told her something was up and they were trying to tune in to see what was going on. I told her it was channel 56 and turned it on myself. Wolf Blitzer was dancing around the announcement about Osama Bin Laden but not saying what was happening.  Presumably they were waiting for confirmation.  I had no idea what they were about to say, but the build up was huge. I called Steve at his friend’s house to tell them to turn on the news. Even though it was clearly something big,  my jaw dropped when they announced the news.  I stopped folding laundry and stared at the television completely ignoring Maggie.

I can safely say that Maggie does not have any understanding of Osama Bin Laden or breaking news or any such thing, (and I envy that a little).  But somehow she picked up on the gravity of what was going on. I talked to a couple of people on the phone and kept watching the television. Maggie sat there quietly until she started hitting her talker. I thought we would be back to the “I don’t like TV” statement, but that was not what she had to say. She worked clicking and moving until she said: “Dad, come see the TV.”

My jaw dropped again. My girl knew that this was something big and she figured her dad would want to know what was happening.   

She amazes me.  That is all.

Parenting a Disabled Child

Warning, this is a departure from my usual light fare. It is preachy and angry, but I feel compelled to write it. 

Being the parent of a disabled child is difficult work. It is difficult physically, financially, socially, emotionally, and in every other “ly” you can think of. Parents get exhausted from lack of sleep, injured from lifting heavy children with physical disabilities or dealing with children with behavior issues. The financial drain can be tremendous; often parents have to stop working, as I did, to be the caregiver as well as parent to the child. Friends form the social circle often disappear because they “don’t know what to say,” cannot handle the behaviors or equipment or they simply fade away because you cannot be there as a friend the way they need you to be. The toll it takes on ones emotions is immeasurable, and is compounded repeatedly; but the emotional toll is probably the most obvious to the outside world.


I know all of this, and experience every bit of it. Yes. The lows are low. But guess what? The highs are very high indeed. What you lose financially and socially is more than compensated for by what you gain. Only parents of kids with disabilities are in on this little secret. If you try to share this secret with folks not in this situation, you often get the pity-filled doe eyes that seem to say. “Don’t put a brave face on for me.” I think I have kept my sanity by focusing on the highs and rejoicing in them. It is not a skewed version of reality. It is my reality. I started writing this blog to convey that reality, but I do not really need to convince anyone.

I am more than Maggie’s mom. I am her advocate, translator, protector, confidante, chief cook and bottle washer. Parenting her is different than parenting my sons. I am not preparing her to leave the nest and be on her own. That will never be an option for her. She may someday live somewhere else, but she will never be on her own; Steve and I will always be in charge of her. It is daunting to think of, but it is also an incredible privilege. We are the two people in the world that she trusts completely and always will. Her well-being is in our hands.

Parents can continue to function and deal with the overwhelming responsibility of this but only if they get help. Our society, like those of most developed countries in the world, recognizes this and help is available. Parents like me are in the (sometimes) difficult position of asking for all the help we can get. I know that I cannot do all of this alone and I am very thankful that there are programs in place to help. There is never enough help, of course, but it is better than it could be. Parents have to ask, beg, scream and do whatever is necessary to get whatever is available

I was sickened to read this story today. http://www.cnn.com/2010/CRIME/07/22/texas.autistic.children.killed/index.html?video=true&hpt=T2  This mom could not handle the responsibility. She “didn’t want” autistic children, she wanted “normal children.” She killed them both. She tried to get them to drink poison and when they refused, she strangled them and then called 911 and told the operator all about it. Perhaps she reached her limit and snapped, perhaps she could not find the highs in her life, perhaps she never saw or could not measure the gains to compensate for the losses, and perhaps she is just evil. I do not know. No matter what her story was, those kids trusted her completely and she committed the ultimate betrayal.

I know it is hard to ask for help. I know it is hard to walk away, but in order to be their protector, in order to be their mother, that is what she had to do. She failed them because they were not what she wanted. They were not “normal.” They needed her more because of that and she failed them.

My sympathy extends to her children who did not get a normal mother and to their father who lost his entire family.