Channeling Aretha

 Anyone who has been reading my posts for a while knows the incredible amount of work taking care of Maggie involves. Maggie’s physical needs require specialized care 24/7; but managing everything to meet her physical needs is another 24/7 job. I do both jobs and then try to deal with the rest of my life. Not everyone can do what I do.

Admittedly, I have help with the first full time gig. The nurses work feverishly while they are here. Often they need my assistance, but without them, we could not keep Maggie at home. Even with that help, though, my plate is extremely full and my freedom is extremely limited. My life is not easy, but it is very rewarding. Am I looking for kudos? No. Am I complaining? No. I am simply stating the obvious. 

Though there are thousands of parents similarly situated, society really does not have a convenient slot for us. We are in between slots. Though the focus of our life is caregiving for our children, we do not really fall into the “stay at home mom” category. But we don't work outside the home so we are not professionals either. We are knowledgeable unlicensed medical providers and social workers. 

We are often exhausted and stressed. This is the one category that people apply. Always. Any justifiable complaint or concern we raise is immediately attributed to the stress we are under. Yes, we are under stress, but sometimes - just sometimes – there might be something more. Having someone decide that the stress of my “situation” is the only driving factor in my life disrespects me as a person as well as the hard work I do every day. That disrespect is difficult (or impossible) to tolerate.

One thing I do expect in my life is respect. Respect the work involved and for the effort expended to lead a “normal” life, despite the limitations. Respect the fact that I do not have the same freedom as other people. Respect the fact that even though we make it look easy it is not. Respect our positive outlook. Though the water in the glass is tilted a bit because my life is wildly out of balance, that glass is more than half full. Respect the fact that just maybe you just do not know everything that goes on in our house and our lives and your suggestions and comments are not appropriate. Most of all respect Maggie for the incredible person that she is.

Generally, we are respected, Maggie and all of us. Sometimes, though, all of that effort is for naught. Well meaning but ill-advised acquaintances extend pity or platitudes, make unwelcome comments, give inappropriate advice or take advantage. I get that they mean well and I get that they do not know better, but it is tiresome. After all this time, some should know better and not making the effort to understand is itself disrespectful.

Ghandi said, “be the change you want to see in the world.” That means if I want respect, I have to be respectful. All I can do is try my best to maintain respect for those who do not show respect for me. Honestly, that becomes more and more difficult with the passage of time. This may come as a shock to some of you, but there is a slight possibility that Ghandi was a tad better person than I am.


If I can’t be Ghandi, I’m going to have to identify with another icon. Sing it Aretha http://www.youtube.com/watch?v=6FOUqQt3Kg0&feature=player_embedded

Tuesday Night Group

When I had the boys, I had so many places I could turn for parenting questions. I could ask my mom, or Steve’s mom, or my sisters or my friends about various infant issues.  Even though my two sons were very different babies, they were both in the realm of the “typically developing” child. Therefore, I could always find someone who would say “yes” to the question, “did your baby do THIS?”  

That was not true with many of Maggie’s issues. When Maggie was a baby, I was desperately trying to find my footing, trying to find answers to questions about raising a child like Maggie.  My mother raised seven kids, but she did not know anything about gastrostomy tubes or colostomies. (Go figure) I had to find other places to ask those types of questions.  Of course, many of the questions were medical, and I have always had wonderful support from doctors and nurses and especially from her pediatrician Eileen Aicardi; but a mom needs someone to brag to and commiserate with about the successes and setbacks of parenting a baby.

In order to find that support I had to go outside of what you might call your “natural support” system. I had to find other parents in similar situations. I could celebrate the day Maggie raised her hand to her face for the first time, even if she was eight months later than her typically developing peers. I started going to the “Tuesday night Group,” which was a support group hosted by Support for Families, a nonprofit organization in which I used to be very active.  I heard about it long before I went because I was sure it was not for me. Various therapists working with Maggie were encouraging me to go and connect with other parents, but I thought I had all the answers.  I finally went, with some hesitation, mainly just so I could tell them I did and get them off my back.

That group became my refuge. We would spend two hours every Tuesday night sharing our stories and the successes or failures of our children that particular week. More Tuesday nights than not were spent laughing at the foibles of the system and the frustrations of trying to adapt a complicated set of services to meet the needs of even more complicated children.  There were plenty of times there were tears too as we shared the constant crush of bad news. The parents in that group, mostly moms, bonded and became friends. We could turn to each other about issues with wheelchairs, medical supply companies, special ed and doctors. Best of all, we could brag about our kids to an audience that listened enthusiastically and celebrated every tiny victory.

Helen Rossini moderated that group with ease and grace and brought out the best in all of us. I went  for a couple of years and met some people there who have been my friends ever since. There was a core group of about eight or nine of us with kids around the same age. We started going out to dinner when we outgrew the Tuesday night group.  The dinners waned a bit over the years, perhaps one or two of us getting together here and there.  However, we always caught up with one another. The group endured.  A couple of the kids have passed away over the years, but those moms are still part of our group. One mom moved away, but she is as much a part as ever.

 Six of us got together for dinner this week for the first time in about three years. Appropriately enough, it was on a Tuesday night.  It was as if no time had passed. These women helped me in a way that no one else could have at a time when I needed it most. And I helped them right back.  It just so happens that the women in this picture all have daughters with special needs, but I only realized that when someone said it the other night. It was not the “girls” that brought us together, it was their status as “special” and that applies equally to boys and girls. In fact, one of the missing members of our group has a son and he was always at the center of our stories.  Hopefully, she can come to the next dinner. Hopefully it will not take us three years to get around to it.

So thanks, ladies.  I would not be where I am today without all of you and those missing from the picture. You know who you are. 

Howdy Neighbor!

I received one of “those” calls last night. Nothing major but it gets the heart beating a little faster. Seems Tim over corrected as someone turned into his block and hit his neighbor’s car. Since Tim and Eddie moved into this house on August 1, this is not a good way to meet neighbors. Still, it was minor, and no one was hurt. I like to think these little things make it less likely that something big will happen. 

I cannot get mad at him; I did something worse to one of my neighbors a few years back. (Some of you will remember this story.)

Now that there is a two hour time limit it is better, but parking on my street used to be impossible day and night.  Our street was the closest unrestricted parking to USF and the hospital up the hill and getting a spot on the street was a nightmare.  I had to use the driveway between errands. That should not be a big deal, but our driveway, like everything else about our house is narrow and there is not enough room to get the wheelchair ramp down and load Maggie into the car. Generally, what I did was bring Maggie downstairs,   “park” her where I could see her and back the car into the street, put the ramp down and load her up.

One day I did just that. Maggie was sitting in her chair just under the door. As I got into the car, Eddie arrived home from school. He said hello to Maggie and me. I got into the car to move it and he proceeded upstairs.  The button to close the garage door is at the bottom of the stairs. As Eddie walked by it, he instinctively pushed the button.  As the car slowly backed up I saw the door coming down and it was going to hit Maggie.  I JUMPED out of the car and screamed for him to stop the door. EDDIE EDDIE EDDIE EDDIE HIT THE BUTTON!  (Why didn’t I push the button in the car? I dunno. Why didn’t I just hit the door, which would have stopped it? I dunno.)  He hit the button immediately and the door stopped. Maggie was unharmed.

Crisis averted.

Or so I thought.

I turned around and the car was still in reverse and backing itself out of the driveway. I screamed again and ran to get to it before it hit the car across the street.  I tried to jump in but it was moving. Of course, the door was open and in my head I was doing some sort of mathematical analysis to figure out how I could get around the door and into the car and hit the brakes before it smashed into the parked car. I was yelling through the whole thing – which was no more than 10 seconds.  About ¾ of the way across the street, I knew it was impossible. I just threw my hands up and watched it crash into a car across the street.

Immediately some random passerby started yelling, “I saw that! You have to leave a note or it’s a hit and run.” I just looked at him dumfounded – “Buddy, I live RIGHT THERE (pointing at my house 10 yards away) where do you think I’m going to go.”

I moved the car back into the driveway and got out to find Eddie standing next to Maggie looking shocked.  We were both silent for a moment and then Eddie said, “I’m sorry mom, but that was HILARIOUS!”  He started imitating me screaming and waving my arms and then just throwing them up as it was clear I could not prevent what was going to happen. I looked at him for a ling minute but he was right and we both started laughing.  

From that day forward, Maggie has parked either in front of or behind the track of the garage door never directly underneath it.  On the upside, I did get to meet a new neighbor that day and she turned out to be very nice and understanding. And yes, I paid for the damage to her car.

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.

Living on the Edge

I had lunch with a friend yesterday. Her daughter also has significant phycical disabilities and this year has had terrible health issues as well (but she's doing great now). During lunch she apologized because she had to check her phone several times to deal with a crises. Since my middle name is crisis management, I completely understood. However, this crises had nothing to do with her daughter. It was one of those annoying issues that can happen to everybody. In this case it involved false charges on an account.

I just looked at her and said, don't you think we should get immunity form the everyday issues and annoyances? She laughed and said THANK YOU! That's exactly how I feel.

When you are dealing with raising a child like hers or mine, it doesn't seem fair that the car should need repairing or that you get locked out. I don't mind the responsibility that comes with dealing with Maggie's extreme issues, I just want a free pass from the regular annoyances. That seems reasonable to me.

It's the little things that send me OVER THE EDGE. I can suction, speak to doctors about 1000 different procedures, and load the wheelchair into the van all at the same time without batting an eye. But if I turn the key and the battery is dead or I misplace my keys  I lose it. I can either melt into a puddle of tears or erupt in anger.

Now you know, so you might not want to be in front of me in a traffic jam.

Addendum : I wrote this and then went out. I snagged an EXCELLENT parking spot right in front of the produce store. I was in there three minutes when I realized I forgot to put money in the meter. I put the basket down and headed for the front of the store. Too late I already had a parking ticket. I neither cried nor got angry. It was too ridiculous. That broccoli cost an extra $55. And then I forgot to put it in the stir fry.

A Lasting Impression

At this point in my life, there are very few things that I have had since I was single. Of course, there are the mementos that have been purposefully hidden away, things I remember from my youth, which have been acquired from family members and even the odd pair of earrings that I have somehow not lost in all this time. However, after 24 years of marriage and raising kids for 22 years very few items from our single days are part of this household. If an item has survived this long, it has become part of the backdrop and I do not even notice anymore.

One of those items is a print by Camille Pissarro. If you asked me about it yesterday, I would have said, casually, "Yeah, I guess I’ve had this a long time." Today the story is different because yesterday I saw the actual painting for the first time. It was on display at the Birth of Impressionism exhibit at the deYoung Museum. (see yesterday’s post) When I saw it, I realized that this print is something I treasure. The painting is called Red Roofs and looks like this:

I received the print as a gift in 1978, when I was 22 years old, from friends returning from Paris. It was a grown up gift, a quality print. It was the very first thing I paid to have nicely framed. At that point, my life was in flux, as are the lives of many 22 year olds. In 1978, I graduated from college, left Los Angeles and returned to San Francisco. I then moved to Boston for a year and returned to San Francisco. I worked for a few years and moved a few more times. The print always came with me.

In 1982, I moved to Sacramento and started law school and the print came with me. In the fall of 1983, I lived in a terrible one bedroom furnished apartment in Sacramento. If you have ever lived in a furnished apartment, you know what I mean. Everything is functional, but nothing is aesthetically pleasing. The only thing that was “me” in that apartment was the Pissarro print hanging in the living room.

I met Steve that fall and we started “dating” (if that is what you call two law students with zero time) right around Christmas time. He came to my strange little apartment for dinner one night and went right to the print. He then asked the question that almost ended the relationship where it started.

“Did this come with the apartment?”

Uhhh, no. that is mine. (Thinking, are you KIDDING me?)

Then, in a save, he said, “I thought it was nicer than the rest of the stuff.” (I knew he was BS’ing me, but I appreciated the effort.)

From that point on, we have always referred to the print as “apartment art”

We graduated in 1985 moved back to San Francisco and married in 1986. The print was in our house on West Portal. In 1987, we bought this house and hung the print in the living room where it has been ever since. The room has been painted several times, but the print always goes back. I am not even sure when the last time I looked at it was. It is just always there.

For 32 years, it has been part of my life and I did not realize how much I loved it until yesterday.

When I returned home from the museum yesterday, I gave the print a good hard look. After seeing the original I realize how faded it is. The “Red Roofs” are no longer red. The flowerbeds on the hillside are almost indistinguishable from one another. I should probably replace it, but I doubt I will. It is my “apartment art “and it is a part of me. I have faded along with it and that is just fine.

Test drives

Last weekend Maggie, Steve and I went appliance shopping. We were having new granite countertops installed on Monday and we were anticipating the need to replace the dishwasher, stove and fridge. The assumption was that they would look too shabby with the new countertops. We went to a large showroom that had a variety of all three appliances. It was a self-contained appliance store, not a Lowe’s or a Home Depot, and it had a parking lot with easy wheelchair access. Perfect.

Maggie thought that place was hilarious. There were so many things to pull on and touch. Keep in mind that Maggie does a lot of “cooking’ and she gets a say on how the new appliances handle. Dishwashers are boring because there is just one handle. Stoves are not important because her mean mother does not let her near that. (Burn much?) But the refrigerators? Now that was good test driving material. Steve positioned her so that she could try out each door. There were at least 50 refrigerators there and she test-drove probably 30.

Steve was playing used car sales person to her buyer.

“So, ma’am, you like the feel of this.” (Signs yes)

“That’s one of our best sellers.” (Looks at him quizzically)

“What will it take for you to take this home with you today?” (Laughs uproariously)

Though we were just looking, we did garner some important information. Never would have thought this, but we now know that we cannot consider getting a water dispenser, and especially not one with a sensor that cues it to run. Maggie would have water running everywhere. The sensor would be particularly entertaining. Every time she stuck her hand even in the vicinity, she would get water.

We also learned that a full door fridge would not do. Right now, we have the fridge on top and freezer on the bottom. A full side by side will be entertaining for her to open but there will be numerous dents in the door as it repeatedly hits the wheelchair. (Oh, by the way, you might want to stay away from the floor models in that particular showroom). That discovery plays perfectly into my plan, however. I want one of those two-door fridges with a pull out drawer freezer on the bottom. No dents, no water dispenser. No problem. Right on.

We did not buy anything last week and likely will not do so for a while. All three appliances are old, but all are functional. We ultimately decided to wait until they break. We are not good consumers – we actually use things for their entire useful life.

Bonus – When the granite was installed, the appliances looked fine – in fact better than ever.

Here are a couple of "before and after" or not quite after - there's no backsplash and no faucet. Oh, and the counters are clean which weill not last more than a day. Note the turkey in the before picture #1 - This was Thanksgiving morning. Counters a bit more cluttered than usual.

Ever since Maggie’s birthday party in March, we begin our morning listening to the "Maggie Mix" on the IPOD. This is a playlist of the songs from her party that were suggested by her girlfriends and cousin. We bought about 30 from ITunes and made the mix. Each partygoer received a double CD set as a party favor. It was a big hit.

On school days, the nurse does the morning routine for Maggie very early. Maggie is being dressed, changed, medicated, etc by 5:00AM or so. I come down about 6:30 and get report from the nurse. Often Maggie has gone back to sleep by then. There is still a lot to do to get her out of the house on time. Generally, I get as much stuff ready the night before as possible. However, several things have to be done at the last minute so that she will be on the right schedule for school. We have to start our “get out of the house” routine/race about 7:15 or 7:30. If she has fallen back to sleep, I let her do so for as long as possible.

My computer is in the dining room, just outside her bedroom door, so I can tend to her needs, suctioning etc. On the days she is asleep I work quietly until I hear her stirring – usually before 7:30. (Once in a great while I have to wake her.) She starts shaking the side rail on the bed to demand my attention. I try to finish whatever I am doing, buying a little time by saying “Just a minute Mag” “Let me finish this”… etc. When I hear things really start rocking, I know she has had enough. I better get in there and turn on the music.

We have to start at the beginning of the mix. It has to begin with the same song every morning. As soon as Maggie hears the beats of Beyonce’s “All the Single Ladies” she gets excited. I crank it up and we get ready to the sounds of pop music. Not my favorite, but tradition is tradition, even if it has only been 3 months.

We may have to adjust this routine a bit. Tim is home now and asleep just above the music player. He begins work at noon so he does not have to be up early. He has to adjust to the fact that he does not live with a bunch of college students any longer. I am sure the parents of the small children in the house next door are hoping that adjustment comes soon. But we have to adjust a bit to his different sleeping schedule too.

Considering I yelled at him to turn his music down before 10 last night, I guess fair’s fair.

Working for a Living

Ok, ok, here is a new post. I took a couple of days off from this because of other obligations. Once in a great while my work requires me to be elsewhere.

Because of both the complexity and unpredictability of Maggie’s care, I have been working at home since she was born. Occasionally in these 15 years, I have tried to work outside the house, but it never lasts. Responding to constant medical emergencies wears thin for employers. Initially they are very understanding and concerned, but when it happens repeatedly – or I just disappear for a couple of weeks for an extended hospital stay, it simply interferes with running a business. I get that.

While I am very very lucky to be in a position to work from home, and to take the huge financial hit that came with that, I miss working. I am sure I would be complaining mightily if I had to get to the office every day, but from where I sit right now, that would be nice. I am still involved in a few things and I was in court a couple of times in the past few weeks. It felt good.

I miss practicing law. I do not miss the tedium of writing and rewriting briefs or poring through huge stacks of documents; but I miss the intellectual challenges of some of the projects, and I miss the feeling you get when you win a tough case. I also miss the camaraderie of the office and being part of the pulse of downtown.

My advocacy skills help me with Maggie, of course. I know how to present things to agencies and insurers to get things done. It’s not that Maggie gets anything more than she should, but knowing how to work the system has definitely helped her (and me) get the available help. In addition, I have put those skills to use for many other families as well.

I am glad to be able to help, but I do not want to build a business doing this. There are a couple of reasons for that The first is, I can’t bring myself to charge most people for my services but can’t take on their problems without compensation – otherwise I’ve just added their problems to my own. However, even more than the money is the lack of any break from my issues with Maggie. Dealing with the same issues at work that I do at home would drive me ‘round the bend. When you are in the same boat as your client, it is very difficult NOT to get emotionally involved. And that can compromise a lawyer’s ability to advocate appropriately.

I need some balance.

I do a lot of volunteer work. I work with a couple of different non-profits to help kids. It is a perfect way to use my lawyer skills and help people without taking on another family’s sadness or frustration with the system. Right now, I am involved with two organizations.
One is Advokids (www.advokids.org) which assists children in the foster care system. This organization is trying to change a broken system. That means fighting against those who are entrenched in the system. The secret is to keep the focus on the kids the system is supposed to serve instead of the adults who run it. This is a wonderful organization run by all volunteers. There’s a casino night fundraiser scheduled for March 7. Please check out the invitation on the Advokids website. It is a fun night and a great cause.

The other is Friends of CCS (California Children’s services). We are just getting underway; in fact, our incorporation papers are pending, and may be complete by now. CCS is a governmental entity so the services are pretty bare bones, and now with the budget mess, they are being cut drastically. The therapists end up paying for a lot of stuff out of their own pockets but they cannot do it alone. The non-profit “friends of” will raise money to support the work of the physical and occupational therapists that work with Maggie and other kids with physical disabilities.

I do other volunteer things as well. I love the opportunity to speak to classes or groups or be part of a panel addressing the issues families face raising disabled children. I used do that all the time, but those opportunities have sort of dried up. Maybe everyone has heard my story already!

The volunteer work is good for me. It provides some perspective on the world and some insight into how my problems fit in the whole cosmic scheme of things. I still miss being a lawyer, but I do get some balance in my life.

Birthdays and Hamsters

October 3rd is a great day. It’s Steve’s birthday. We love to celebrate Steve’s birthday around here because he is younger than I am. If I stop celebrating mine, and make a big deal out of his, he will catch up. Right? Today is also my nephew Patrick’s birthday. Happy b-day dude.

Steve decided to spend his birthday backpacking and fishing. That was fine. Maggie and I can hang back and eat all the cake. I actually invited some girlfriends over for the evening. The weather changed everything. This is generally the warmest time of the year in San Francisco and very nice throughout Northern California. Not this year. The first storm of the season should hit this evening and in the area they were planning to backpack that could mean snow. He is staying here. I cancelled the girlfriends and Maggie and I will cook up a nice dinner and make a cake instead.

This quick plan change seems to be the norm this week. I have things scheduled one on top of
the other and I am supposed to be in two places at once every day for the next week. How does that happen? I am just minding my own business riding this hamster wheel. It not only goes faster and faster, but also it seems to have various off-ramps and detours of its own.

Today I need to get Maggie launched, which is a frantic race to the bus. After she’s gone I have to head downtown to retrieve some records from a doctor’s office – and I have been instructed to bring a shopping bag. Then I will meet my cousin and my aunt to review some old family pictures quickly and excuse myself to get back across town for Maggie’s field trip to the Blues Festival. (Tough duty),When Maggie heads back to school I will go straight to the fish market and vegetable store and get home before Maggie’s bus because we don’t have a nurse this afternoon. All errands have to be completed by 3:30. Then Maggie and I will cook the dinner and make the cake. This is impossible – but trying will be fun.

Next week is very much the same, every day. Two places at once. I should ditch the hamster wheel and get rabbits. They’re faster and they multiply.

Less is More

There are phrases I hate. Many of them. People say kind things all the time, and 99% of the time they are just that – kind. But once in a while someone uses one of these phrases that makes my fillings hurt. Generally the speaker is still being kind and I appreciate the intent, but the words themselves just make me cringe.

Last night I heard one of them during Michelle Obama’s speech. The speech was great, and I hope her husband is elected, but I just sighed at the phrase “the least among us.” Can’t argue with her sentiment, we should be respectful of everyone, including the “least among us.” But who is that? Maggie? Probably. ……… Ouch……..

Yes, Maggie is dependent on others for everything and yes, I realize that is a burden on society and yes, I believe people should respect her and everyone else. And yes yes yes, I get the Biblical reference. I understand and agree with the sentiment. It’s the actual words I take issue with. I just don’t believe for a minute that she is less than anyone, and certainly not that she is the least. Wouldn’t mass murderers be lower on the list? Please tell me child molesters are lower.

“The least among us” really doesn’t square with “All men are created equal,” does it? It suggests that not only are some of us less than others, but by implication, that some of us are better. If there’s a “least” does that meant there’s a “best?” And if so, why doesn’t he or she show themselves so we can fix some of the problems in this world.

Breathing in, Breathing out

Figured I owed an update after that last post. Of course once we got up there Maggie was dong fine. Never fails. then she coughed and things started happening. Maggie did not get admitted. It took six hours to determine that she does have tracheitis, which is not good, but it's something we can treat at home. There is also a small pneumonia. Not as bad as I thought, but bad enough. The doc told us to go on our mini vacation. If Maggie starts to have trouble breathing and the oxygen isn't helping we'll come back. Doesn't that sound fun? Anyone want to join us?

Take a deep breath and have a nice weekend.

Hey Abner!

Tim left for college this morning.We may not see him until Thanksgiving. It was tough to say good bye for all of us. Maggie gave Tim a kiss goodbye. That's her kiss pictured- she just touches your lips with her hand.

While packing and cleaning out his room Tim filled a plastic bag with all the loose change he found. He took it to a cash machine and collected $324!! It pays to clean your room! He bought himself a new television set for his dorm room with the money, and then promptly forgot to put it in the car. He didn't realize it until they arrived at the school. Oh well it was nice of him to buy us a new set.

So Maggie and I are on our own until Steve comes home tomorrow. I'm sure we can find some trouble to get in. Actually, Maggie already accommodated that this morning by pulling her trach out and sending me flying for the emergency supplies to change it. Because she's more stable now, it's not as scary as it was a year ago. I still have to move fast to make the change, but she's not in distress right away as before.

It serves me right. It was a little smack down for being a nosy neighbor. I was checking out the arrival of an ambulance and fire truck up the street and trying to figure out what was going on. I was not paying attention to Maggie and that is a punishable offense.

I have a lot of responsibility. I have to keep abreast of all the developments on the block and never take my eyes off Maggie.

There's a reason Gladys Kravitz didn't have kids.

Normalizing the Abnormal

Normalizing the abnormal. That is exactly what we do and have done every single day for the past 14. years, and it is the underlying theme of this blog. I heard another mom of a disabled kid use that phrase to describe her family’s life and I never forgot it. It describes our life to a “T” (whatever that is). We are living our own definition of “normal” and I know from the stares and whispers that it might not be the “average” experience. But I learned long ago that normal and average are not synonyms. I learned today in a google search that the mom I learned this from didn’t make up that phrase. It has to do with post traumatic stress and any number of other mental/emotional problems. I didn’t mean to be flip using that phrase; in fact knowing its derivation, I find it even more descriptive.

Normal: getting ready for “back to school.” We are doing that. But, we’re not shopping at Office Max or Staples. Instead of buying pens, paper, planners, we are loading up the boxes with diapers, catheters, feeding tubes, suction catheters, nebulizer and all the other things Maggie will need. Of course the first day and every day thereafter day I have to fill the portable oxygen tank, program her dynavox (communication device), change, tube feed and catheterize her and get her dressed, into her wheelchair and ready to meet the bus. All the while we will have to have the suction machine fired up and ready to suction her trach every 30 seconds or so. But, on the bright side, I don’t have to make a sack lunch.

It is likely that unless you have a medical background, or already know Maggie, you don’t have any idea what I said in the last paragraph. Maggie is a clever, smart girl who lives in a body that just doesn’t work very well. She moves, talks, sits, breathes, and eats, which is normal; but she goes about each of those in a different way. Maggie cannot walk or talk so she uses a wheelchair and a communication device. She cannot sit without full support, so there are seven buckles to fasten on her wheelchair. She has serious respiratory problems, so she has a tracheostomy tube. She cannot eat the normal way, so she has a feeding tube. Maggie is, despite all of this, healthy and thriving. But keeping her that way is constant work.

Maggie loves to use her communication device – or “talker” as we call it -- to tell jokes. She is the first one to tell you, by a complicated combination of buttons and switches attached to her wheelchair, that she’s not a stand up comic, but a “sit down” comic. She is very entertaining – and she laughs so hard at her riddles and jokes that she anticipates the answers and often can’t push the button to let the listener know the answer. Keep in mind she’s told and heard these jokes at least 1,000 times. Doesn’t matter, they are funny every single time – especially the way she tells them.