Life Well Lived

Story of me with MS and my foster kids

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Name: life well lived
Location: Odenton, Maryland, United States

Wednesday, March 18, 2009

So here I was having a haggard day, the type of day I either stare off into space, bury my head in my hands, or scream at no one thing. The desire was one where if I could do all three at once I would have. Surely others feel that way too from time to time. I was pissed off at work because nothing I did turned out the way I planned. Some of the things I was trying to do were for unplanned emergencies that had arisen while my mind was elsewhere. My wife has been sick off and mostly on for more than 9 months (was it something I said?). My daughter was in the hospital which was giving my wife a hard time in her roll as nurse super-mom. I was lonely and bitter.

All in all I was having a pretty cranky day. It was one of those days to make Alexander proud. So I walked to the Subway near work which was running a “Any foot long sub for $5” special, and I saw a homeless man pacing back and forth in front of the entrance. When I got up to order, I realized the sub I was ordering was $3.87. For a little more, I figured I get the foot long and invite the homeless guy in for a sub.

That was one of the more interesting lunches I’ve had. Michael kept insisting that he “just has to hold on because the word is good, and the word says the world is good so everything is going to get better because he just has to hold on because…” Most of my questions to him came right back to this indomitable if slightly altered mental state. He wasn’t unhappy. He was simply an elderly black homeless man. I talked to him about finding a shelter and asked if he had been up the road to the church. He said he would try. I think he was surprised that he was allowed to use the restroom, but I assured him he was a “customer” as he was eating a sub I had bought. It’s the little things.

What put my day in perspective was when I asked him “If tomorrow were to be a better day, what would it look like? What would make it better?” That started another round of well “I just hold because...” That was a little sobering for me, to realize that here sits a man with full confidence that tomorrow will be better, but he has no idea what is “better” or even “good.” Talking with him on a crappy some what misty rainy day that matched my mood made me realize that even when things feel like they are bottoming out at least I live a life with in sight of what I want. Oddly, from a man who outwardly expresses so much hope, I became thankful that I still have hope for things to get better.

I ran into Michael again the next day out side Popeyes. He seemed shocked that somebody knew his name and called to him. I asked if he had found a shelter, and he said no. He had gone to the church and the police, but all he had was a list of shelters too far away to walk. He wasn’t sure if they would even have space, but “the world is good because the word is good. So just keep on holding on.” When I mentioned going to the library to use their computers or phone to try and find a shelter, he said “Can you drive me?” I failed. I said no because I had walked over so I didn’t have my car and my work was crazy busy. Sorry Michael. I should have taken you. For what it’s worth, I have a homeless shelter hotline number in my cell phone now. If I run into you again, I will make the call and get you there if I can. You got 2 meals you needed from me, but not the ride and the time. I got a different perspective on just how bad my crappy days are. I got the better end of that bargain.

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Side note, A is out of the hospital and off oxygen along with being off some of the other 20 different meds she came home on. Today she’s even going back to school for the first time since her surgery. Our whole family is back at home, and crazyness has somewhat returned. O is back to be being crazy in his own house instead of going from house to house for 2 weeks. Yay. Good family chaos is a blessing. See, my bad days still remained within spitting distance of the better days.

Heck, I knocked a full cup of water off my desk yesterday and it landed right side up more than half full. I’ve always said I’m lucky. I called people over to my desk to see my amazing spill. Sometimes it just takes a little effort to recognize the truly spectacular in what would ordinarily be a cursing moment.

Tuesday, February 17, 2009


Some days, I think life is all just one big collection of stories we all compose in our heads. Most of us want to be the hero or heroine, and we all tend to frame the stories of our actions in that light. For many of us the audience is purely ourselves. Like an editor, we pick which are the most salient peaces of the stories and the rest falls away. We think back on the good we’ve done. Maybe, we think back on the fun we had with friends or lovers. Ultimately when I think back, I tend to remember the stories, the shared adventures. Remembering feelings is so much harder unless it’s in the context of the stories. In a lot of ways, the feelings are the merely context for the stories though maybe that’s the opposite for others. For me, I remember the stories.

After a year of not writing, I was trying to figure out what sticks out most to me in the past year, and all I could come up with was a bunch of stories. Truth is, the year has been lumped up in my brain as a bunch of stories, stories I cherish. Heck, even Mr. O’s rage at the indignity of nap time resulting in him removing his diaper and spreading it’s contents on the crib is one of those stories at which I look back on and laugh. I didn’t at the time, but heck if I don’t smile every time I tell why he wears a onesy to bed. Truth be told, it’s a story of simply being a parent with time and energy for little else, and that’s better than OK.

In trying to figure out which memory sticks out the most, I realized I can’t. So here’s my top list in no particular order:

* Ms. A running around chasing her brother only to stop with the “I’m sllleeeepppyyy” fuss that last for 10 seconds to be followed by another round of chase.

* Maybe it’s both of them fussing every time they are put on the potty only to be thrilled at the prospect of getting 2 jelly beans when they get down because it was a successful trip.

* Perhaps it’s hiking in Oregon with the kids on our back.

* Maybe it’s both kids asleep on the airplane with Jill forced into a really awkward looking crouch as the 2 kids took up three seats with their sleep.

* O with his Mohawk and glasses sporting a look that only a 2 year old can get away with and look cool. He draws so much attention anywhere we go.

* Ms. A being excited every moring at the psopect of getting on her school bus.

* Perhaps it’s hearing that our adoption is finally going through (at a date to be determined soon)

I guess any of those could be chapters in the year. As much as I think of moments and stories though, I think the memory that will most stick with me from this year is coming home after day at work to gleeful shouts of “DDDAAAADDDDYYY!” There is nothing like coming home from a day of sometimes stressful decisions on things I have no knowledge about, incurring bruised feelings, then wondering where the energy to genuinely be with my family is supposed to come from only to be greeted by that scream and those hugs. Everyday I come home and get to have that same feeling of “OK, I can do this.”

I think every parent has those moments where we wish for a video camera to film something that would make that first date laugh. Those are stories. As I sit here writing this, I’m kind of stuck though. I’m writing this days before Ms. A has her major heart surgery. I don’t really have the story yet because it hasn’t been written yet. At this point all I have is the emotions of frustration, worry and uncertainty, knowing all the while she’s tough and has beaten far worse odds than this surgery.

We’ll see. I’m hoping she comes out with the “I’m tough” saying on her lips just like I’ve got both kids saying whenever they want to cry because the other one hit them over the head with a random toy. Something about a little kid who has been through a lot saying, “I’m tough” to fight off tears just makes me smile.

Wednesday, November 21, 2007


Fears:
I definitely have a new one. Both my foster kids are threatened with going home to families other than mine. Mr.O is likely to go back home to his parents now that mom's case has been moved to juvie. The way things look now, she will probably get off with time served and parenting classes. Regardless, she will be released in a few years at age 21. At that point, she becomes the resource for his dad so he could have custody. I'm not against reunification, but so far neither parent has shown any ability to read or understand how to deal with Mr. O medically. They say showing up is half of life, but thus far Dad doesn't show up and 50% is still a failing grade in my book. I know Oscar cries a lot. Believe me. I know. I just hate that what I think when he does cry is more true than I've liked to pretend: "put up with his crying and enjoy the smiles. The number of smiles he has may be a finite quantity.” YUCK!

Grrrr. I want him to have a good life. My wife and I have tried to give that to him, and I wish I could say I expected him to have a fulfilling happy life if he goes home. Now I just hope with out expectations.

As for A, her dad and Aunt haven’t been to a doctor’s appointment in months. Nor have they made phone calls to set up a family visit. One would think this would be good news for us as we hope to adopt her. However, the A’s (in name only evidently) lawyer now views this as a reason to remove only the father from the chain of people who should get custody of A. The lawyer now favors the Aunt…the same Aunt that expressed shock A was in foster care in the first place after nobody visited her for over 7 months while she was in the hospital. This is the same aunt who refuses to sign a service agreement that she will follow the court orders from last time, and the same aunt that was court ordered, like the dad, to make family visits and attend doctor’s visits so as to understand the medical situations.

Social services is rather livid with the lawyer as are we, but foster parents have NO rights. A’s social worker is trying to get social services lawyer involved, and it could get messy at the Dec court date. We’ll see.

If the court take A. from our home to put her in a home where she won’t get competent medical care, I don’t know that we will do foster care again. We’ve said we can deal with it if a kid dies. We will have done everything in our power…but why take part in a broken system that hurts those we come to care about and love?

Picture from the top:

On the plus side, I did not put this hat on her. She kept pointing up at the coat rack until I realized what she wanted and gave it to her. It made for a fitting last picture to be taken on that camera as we now have a new one.
Finaly made posting comments open for all.

Saturday, November 17, 2007

Sometimes life’s best made plans go for naught. Last week, I had my transfusion that is usually followed by a week of increased energy. I had 4 days off, so I was able to plan to be up and home to take care of the kids allowing my wife to finally catch up on some sleep. I’m under no illusions that I’m easy to live with, and getting up every morning with 2 kids (the oldest is 2) is one of those things I see wearing her down. They have boundless energy and not too much coordination. So I thought 4 days to sleep in should help, eh?

Of course that was the plan. Mr. O got sick Friday…by Friday night he couldn’t keep down pedalite…so off to the emergency room my dw went after we ate dinner. My hat is off to her. I would have gone insane spending 18 hours in the emergency room and another 2 hours getting admitted. If that meant I was awake for 36 hours, I sadly would probably have driven others insane too. :-)

Let’s just say catching up on sleep for the weekend was out the window for her.
On the good side, A and I spent the weekend together. We read books…when she would pick it was Go Dogs Go…over and over and over :-). That’s okay because I picked every other book, as I won’t read the same book twice in a row. So we read Switch on the Night, Where the Wild Things Are, and Alexander and the No Good Terrible Very Bad Day. Yay. I was so happy when A learned how to erase the etch and sketch…now that’s a life skill gained towards self entertaining. Woohoo. I probably shouldn’t cheer that too much because some day too soon she won’t look to spend time with me.

All in all it was a good weekend, but on the hard side...but not hard in a way we didn't sign up for.

Friday, October 19, 2007








I’m now 72 hours into my 33rd year. I often find myself looking at where I am now in terms of where I’ve been and what I’ve been through in the past year. As such, birthdays and new years seem natural times to just take a minute to look back.

Looking back, I have to say I hated my last year more than any other I’ve lived through. If my life were a movie, I’d be hitting fast forward in search of hope of a happy ending. With that said, it ended better than it began. I spent my 31st birthday in hospital, and while the hospital might be good for solving the ailments of one’s body, it sucks for one’s spirits. For months after that I was on a drug that did little for me. At least at the end of the year, I switched to a new drug that seems better. Oddly, I find myself feeling physically better and yet more emotionally distant. Ah well, fix one leak at a time.

All in all, I can’t help but think the lesson of this year for me has been when I don’t have hope, fake it. There’s no point in dragging everyone else down, and sometimes positive expressions inspire other genuinely positive emotions in others. Even better, sometimes these new positive emotions inspire positive feelings in me. It seems like playing poker against fate. If your hand sucks but you have to play it anyway, bluff. Every now and then, fate folds.

I keep thinking the song “If you’re happy and you know it clap your hands” needs a modified ending for adults. “If you’re happy and you know it clap your hands... If you’re unhappy and you know it fake it well.”

The best example I have for the just fake it mentality comes from trying to get my kids to smile for the camera. I felt down that day. I cringed at the thought of getting them to smile as they started fussing and wandering instead of helping out the photographer...Literally, it was "if you're happy and you know it to the rescue." I started singing that song and A started her giggles...before long my faked joy was real.






I wonder who learns more in the parenting relationship: child or parent.







Monday, October 01, 2007

HOME.

It's one of those concepts I can't quite completely get my head around. What makes a HOME instead of a home where we go to sleep and get up the next day? It's definitely more than just a place to lay our heads. I guess for me it's a place that feels both emotionally and physically safe. That's a kind of definition, but I can't help but think that it misses some crucial intangible bit. Maybe that song saying "home is where the heart is" got right. It's not just a place so much as a feeling. I really want all of the kids in our house to have a sense of HOME, and I hope that as they grow older they come to cherish the concept as I do.

I keep thinking about this because social services is moving kids from the city out of houses with families that have cared for them and moving them back into group homes in the city (they don't have enough foster homes). The reasoning hasn't been clearly explained to me, but that's probably because my wife and are but plebs in the system of fostercare. Reasons I have heard range from the kids need to be physically near their parents (even if the kids show up for visits and family does not) and the counties are tired of spending resources taking care of children from the city. What I don't see is anyone with power making the argument for why this is "best for the kids" or even "better than the current situation for the kids." That is really troublesome.

I will say that if the social workers come to take A, I'm not sure we will continue foster care. I have always accepted that kids may leave our house for better situations...read reunification with family or they need more care than we can give. What I have a hard time with is them leaving for a situation nobody is even pretending is in their best interests. I have a hard time working this much and growing close to the kids to have them put into worse situations when they leave our house. I want to believe the kids go on to new and better places. I don't want this to be like the little kid told their dog has gone to uncle Joe's farm to chase rabbits. If they leave our house, I want it to be because uncle Joe does have a cool farm where their problems will be lessened or at least confronted with their family by their side. I want it to be because they left the HOME we try to foster for another even better suited for them HOME. I want there to actually be an uncle Joe, and I want him to have a farm.

I know my wife and I have plans to rent out an apartment in the city and just maintain 2 homes till we can adopt A if necessary, but this is a problematic balm to a messy problem if it comes down to it. Getting an apartment and then getting it cleared with all necessary authorities is not an instant process. It doesn't happen overnight, and it looks like we may not have the warning if it ever comes to be. I mean we are lucky to have the 2nd home as an option (some money is a good thing), but I really feel for the other families who don't have this option. It's not like fostering pays much. Thankfully, it doesn't look too likely right now as A has medical issues that many homes would not be equipped to deal with, but...

I guess this is just another way fostering is like and unlike regular parenting. It's like in that we all worry about unlikely events and unlike in that we have just have a few more to add to all the normal risks.

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Friday, September 07, 2007






It’s so easy to write people off as crazy. I think that’s why I cherish my little wooden placard from Shaker Village in Kentucky. It made of wood and it has an upside down heart overlaying a hand. Above and below it has the phrase “Hands to work Hearts to God.” There’s something simple that just feels incredibly correct in that simple peace of wood.

It always gets me questioning that which I just know is wrong and those whom I’m quick to write off as silly. Having been to Shaker Village, I can honestly say I think many of their ideas were crazy. Leading completely celibate lives didn’t really work out that well for spreading the religion. That alone probably leads many to think they were crazy. I think that too, but I also remember all of the things they were ahead of their time on:

Equality of the sexes (though the use of separate everything probably made the celibacy easier and hold of the religion less over time)

Racial equality (way way ahead of their time on that one)

Producing medicine to be sold

There were other things that may seem a little silly, but I really appreciate them now. They were very into simplicity. There was a legend told to me when I was there that no new songs were ever sung when they brought instruments into their place of worship. They blamed the organ for stealing their creativity. Ever wonder if some of the things we bring into our life make it harder for us to do things on our own? I think of calculators and how many people can’t do simple arithmetic in their head any more.

In some ways their simplicity meant they did things the hard way. That said their woodwork is still considered some of the best. Sometimes the hard way is the better way, and it’s worth doing even if it’s harder. As life gets more hectic and we become able to do so much more, there is a large part of me that wishes for a simpler way…even if the simpler way seems patently absurd to most. I guess I’ll go tilt at another windmill. I wonder if the simplicity of life as a kid is what I and other miss most about growing old.
(Will post picture of the wood work when I can)- and more recent picts of the young ones doing what young ones should, having fun with simple little things. I honestly thing my daughter has more fun taking Tupperware out of the cabinets or sitting in a box than she does with any toy she’s ever had.



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