Pay It Forward

The Family Advisory council (FAC) met last night. This is an advisory board of sorts for the UCSF Children’s Hospital. The head of the hospital attended the meeting to thank the council for its commitment to the Children’s Hospital. We do not really see the effects we have anywhere but she assured us that we have a lot of power within the institution. For example, if the FAC has approved something, folks are reluctant to mess with it. That was nice to hear, because it’s easy in a large bureaucracy to feel small and insignificant.

Several new members joined the board last night and we took time to make introductions and explain why we are members of the board. For the parents on the board, the reason is simple: we have a child that was or is served by the UCSF Children’s hospital and want to give something back.

Many of us have been part of this board for two or three years and know the stories of each other’s children. With all the new members, though, everyone explained their situation just a little more clearly. On the other hand, maybe I just decided to listen closer. The stories are as varied as the children themselves. There are patients who spent weeks in the hospital protecting their unborn babies from high-risk pregnancies, some with positive results, and some without. There are parents of children who needed just one outpatient procedure and those (like me), whose child has permanent and ongoing medical issues. There are parents whose children made amazing recoveries from the brink of death and those who lost children despite the best efforts of a great hospital.

As we went around the table telling our stories, I was struck by the individual drama of each story and each parent’s willingness to put that drama aside and work to make UCSF Children’s Hospital a better place for all families. It was humbling but it made me proud; I was feeling two competing emotions at the same time.

If the only change we effect is small, it is worthwhile. It is worthwhile to hear and understand that other families have stories more compelling than mine, and that they appreciate the importance of sharing their unique body of knowledge to assist others in the same position.

There is nothing good about having a sick child, or losing a child, but something good can come from it

The Dance of Joy

We are here; we are fine.

It has just been crazy busy around here.

Maggie went back to school today after a week of Spring break. Spring break here does not mean a trip to Disneyland of any other fun outing. It means mom has to fill the eight hours a day that the school generally does. Every day Maggie is home means probably thirty more transfers for me – thirty more times each day that I lift her from the floor to the wheel chair, or the wheelchair to the bed or whatever. I. am. Exhausted.

In addition to the physical strain, it is my job to make her time at home fun. This for a child who does not watch movies or TV. Fortunately, Maggie is the easiest person to please in the entire world. The iPod was playing the Maggie Mix all week. My friend Rose and I did the YMCA dance for her (not pretty) and I thought she would stop breathing from laughing so hard. A trip to Target is huge entertainment. Couple that with a trip to the assisted living center that my aunt just moved to and you have hit the jackpot. We had her friend over, we went to the park, we went shopping, and we did a power chair trip or two. We hit a couple of therapy appointments and filled the week nicely. She had fun.

I have a news flash. Mothers of disabled children welcome the first day back to school just as much as (if not more than) mothers of typically developing children. I was very happy to see that school bus this morning. When I closed the wheelchair door on the bus, I did the dance of joy – a secret dance that only parents of school age children know. Every parent does his or her own version. Personally I prefer to wait until the garage door closes and just go for the junior high cheer leader routine (a la Molly Shannon in “Superstar”)

The last few days have been particularly busy. Dealing with my lovely aunt as she adjusts to her assisted living arrangement, cooking for in-laws, taking Maggie to a crowded Easter Mass, making a ridiculous over amount of food for the Easter potluck, breaking my toe in a middle of the night encounter with the blanket chest, etc etc etc.

In addition, my sister’s dog Darby arrived to stay with us for a week. Darby is zero trouble. She spent the first day staring out the front door wondering when her “dad” was returning. We took her to Golden Gate Park a couple of times but she was nonplussed. After a walk at Crissy field today she decided we were “ok” and totally forgot about that other family that abandoned her for a week of fun and frolic sans canines. We sent this picture to my sister telling her Darby was on vacation too and who needs them anyway?

Of course, there’s no break yet. Today I finally tended to the things I ignored last week. I have meetings and appointments all week. There might be a few free minutes on Friday.

Don’t tell anyone.

Spring Break

Today is the last day of Maggie’s Spring Break. It has been a long week of going on outings and finding entertainment for each day. It does not have to be much, just SOMETHING to help pass the time. We went to visit my aunt a couple of times, went to Target (Maggie’s favorite place), had her friend over, went to the park a few times and yesterday Teacher Joe and Ivana came to visit and we went around the neighborhood in a power chair.

Maggie does a lot better in the power chair when Ivana comes to visit. Ivana works in the classroom one or two days a week. She has also uses a power chair and for the past few months has been joining in when Maggie practices in the power chair. Its great incentive, Maggie simply tries harder when Ivana is there. The other day it took about 30 minutes to go up the block and come back in the power chair. Yesterday, we went four times that distance in the same amount of time. When it is just Dad or me accompanying her, Maggie does not seem to be able to sustain her head in the position to make the chair go. When Ivana is here, Maggie goes like a son of a gun.

It would really be something if Maggie could emulate Ivana in other ways. I do not know all the details, but I know Ivana was instrumental in getting her living arrangements organized. She lives independently with assistance. Her attendant arrives in the morning and helps her get ready, fixes breakfast etc. Then Ivana is out and about on her own. We run into her everywhere, walking the dog at Crissy Field, the power soccer camp, shopping, at school, everywhere. She takes public transportation and arrives ready for action. Ivana is an independent woman who happens to have some significant disabilities, not a disabled woman who is able to get out occasionally.

I know Maggie will never achieve that level of independence. Her disabilities are too profound and her medical needs will always require one to one nursing support. However, having Ivana around now is helping Maggie get to the next level. We have always taken things one slow step at a time and enjoyed the progress when we see it.

For this last weekday of break, we need one more fun outing. I considered taking Maggie to the new Hannah Montana movie, but it turns out I am not that wonderful of a mother. I cannot handle opening day of a pre teen movie on Good Friday. We’ll just do another loop in the power chair before we have to send it back to school on Monday. Maybe after yesterday we can make it all the way around the block in an hour or so. Go Speed racer go!

Happy Easter, everyone. Don’t put all your eggs in one basket.

Vista de los Old Folks

My Aunt had a fall recently. Now that she is finally out of the hospital, she needs more care than usual while she returns to her fighting form. That means she has gone into the dreaded Assisted Living situation. No one jumps at the chance to do this. For many senior citizens this means the end of independence and independent decision-making. However, it does not have to be that, it can be a warm community. It can be a place where people mingle, go on outings, eat in the dining room and make new friends. It can be a place with private apartments and your own furniture and help just a button push away. We found such a place for her and she moved in today straight from the hospital.


We are hopeful that my aunt embraces all the wonders of this place. Before getting there she was referring to the place as “Vista de Los Old Folks”, but if you knew her, that would not surprise you. She has a sharp wit and an even sharper mind.


Good news! She was very pleased when she arrived. Her favorite chair was there along with her own television and her own bed. Her clothes are in the closet, a few of her own dishes in the cupboard. The place is clean and nice. She has the buzzer around her neck and help is just moments away. She is ready to get back to her strongest.


Before she arrived today, I went out there with some clean towels. These were the last of the possessions she had requested. Because Maggie is on Spring Break, I brought her with me. She was a big hit there. I have a feeling Maggie will have more friends there than anyone in a very short amount of time. I was pushing Maggie’s wheelchair down the hallway with one hand and holding the laundry basket under my other arm. My favorite moment of the day was when one of the residents stopped me and asked if she could help me. It is a friendly, vibrant place, and people want to get to know you right away. Inasmuch as the woman offering help was using a walker, I am not sure how she would have helped. Nevertheless, I greatly appreciated the offer. I smiled and said, “No thanks. I’m used to this, we do all sorts of stuff one handed.” But I was grinning all the way down the long hallway to my aunt’s apartment.


It’s funny; senior citizens generally do not want to embrace this lifestyle because of the stigma that comes with it. From where I am sitting, it just does not look that bad. Someone cooks, cleans, help you out and drops you off at shopping centers or arranges other outings if you are interested. They need that for middle-aged overworked mothers.


Vista de los Old Folks just might be the perfect spot.

Things that go BUMP in the night

Rough night last night. I had to get up to help the nurse at 2:30AM and never got fully back to sleep after that. Every time I started to drop off I would feel this rush of adrenaline and find myself wide-awake, heart racing.

It is not as though the assistance needed was life and death or anything like that, but happily, it has been a while since I have had to get up from a sound sleep to address a medical need. I guess I’m out of practice and could not just shut off the adrenaline as I used to.
I was in a dead sleep dreaming about someone trying to get me up and realized the nurse was yelling my name. That was disconcerting. We have two phone lines in the house and when they need help they call from the fax line extension in Maggie’s room and it rings right next to our bed. When I realized she was yelling I thought it was something too serious to spend time dialing. I flew down the stairs.

Maggie pulled out her gastrostomy (feeding) tube. It’s in her stomach in a surgically created hole (or ostomy) and it stays in place by a small balloon filled with water. You insert the tube with the balloon deflated and fill it up with a syringe once it’s in place. Filling it is painless; having it in there is painless. Pulling it out, with the balloon inflated is not. Maggie has done it before, but not very often. She had that shocked sheepish look on her face when I arrived at her bedside. It was a combination of sorry and YEOWCH!

The nurse was poised for action, though she was ready to rip open a box of extension tubes rather than the tube we needed. I looked at the tube Maggie had pulled out and decided to just put it back in, as it was not broken. I only have one spare right now that we are keeping in Maggie school bag so it is always with her. Usually I have a couple, but I am waiting for a delivery. No sense using the only spare if we do not have to. I deflated the balloon, reinserted it, re-inflated the balloon and gave Maggie a kiss.

I asked the nurse why she didn’t just use the phone and she told me both phones were dead. She could not get a dial tone on either one. Now that was curious. I picked up each line and the phone was working perfectly. Now it was her turn to look shocked and sheepish. I padded back upstairs where Steve was sleeping soundly (grumble). As I was getting back into bed, I CRASHED my knee into the blanket chest at the bottom of the bed. Now my face had the YEOWCH look, and I woke Steve.

Overall, it was much ado about nothing. The nurse could have handled it herself, but it was fine she called me. I just could not settle back down. I got up early, showered, and dressed before coming downstairs at 6:30. Undoubtedly, I will hit the wall later today, but other than my slightly bruised knee, I am getting a lot done.

Of course, at 8:30AM the afternoon nurse called to cancel.

Ironically, her knee hurts.

Old (and I do mean OLD) friends

I have three close friends from my childhood, whom I’ve written about before. We have all known each other since we were little girls, 700 years ago. In fact, the connection goes back another generation as some of our parents also grew up together.

How is it that we could have stayed friends all these years through all of life’s ups and downs? Many other people I have known since childhood have drifted in and out of my life. What made the four of us stick together? Two of us went away to college in different cities and returned to the area at different times. We all had busy lives with kids and work. We settled down at different stages and our kids went to different schools at different times. Why has this worked?

Well, for one thing we know each other’s secrets. Keep your friends close and your old friends closer. Another is geography; we all stayed in the Bay Area. We live in four separate counties but easily within 20 miles of one another. Still, many other people fall into those categories but have drifted away over the years as lives change.

I think the biggest reason we have remained close friends is effort. All four of us have made the effort to remain in each other’s lives, no matter what differences there may be. Maggie is the youngest of all our kids by four or five years. When she was born and in the years since, these women have helped me in so many ways, often by taking me away for a few hours, putting a drink in my hand and reminding me of all the foibles of my youth until I laughed so hard I cried.

I was the last of the four to settle down. In the ten or so years after high school I went to college in Los Angeles, moved to Boston, came back to San Francisco for a while and then decided to go to law school and moved to Sacramento. I returned here for good in 1985.
In those same years the other three went to college, one going away for a short time but returning after a couple of years, and the other two staying put. Two of them, Nonie and Sharon got married within one week of each other in 1981, before I even started law school. By the time those weddings happened, though, Lori had been married about 5 years and had two girls, Jennifer and Julie. Lori was always the first to hit the “next stage.”

I remember playing with her baby daughter Jennifer in an apartment I had in San Francisco. She was maybe 8 or 10 months old. I remember it so clearly, because I was playing with the baby on the floor and not watching closely enough and Jennifer hit her head. Unhhh. That still gives me a sick feeling. Lori scooped up her baby and soothed her and me at the same time. She was calm and forgiving. She was a mom and even though I was not anywhere close to that myself, I was impressed. (For some reason she did not let me hold Jennifer again. Hmmmm.)

Apparently, there was not too much lasting damage to Jennifer. She grew up, became a teacher, got married and, as of three days ago, has two kids of her own. Her daughter Catalina (Lina for short) came home yesterday to meet her big brother Thomas. (When she reads this I will never get to hold her baby)

That means Lori is a grandmother twice over. Once again, she enters the next stage before the rest of us. Nonie, Sharon and I are very happy to call her grandma as often as possible. (Lori IS, after all, the oldest of the four of us.)

And though I’m nowhere close to that stage, I am once again impressed by Lori and the ease with which she moves into the next stage of life with gusto and shows all of us how easy it is. She is a fun grandma or “noni” as she is called. She is obviously completely smitten by and wrapped up in these grandchildren and we are happy for all of them.

She cannot shake us; we are those crazy friends of Noni’s that these children will make fun of for years to come.

Outside the Box

Having a family member and especially a child with multiple disabilities has some obvious difficulties. Friends and strangers alike express concern for Maggie’s well being or offer blessings and prayers for her and for me, as her mom. Other than Maggie, I am probably the focus of most of the sympathy and prayers. It is kind and thoughtful, but a bit disconcerting at times, especially when it is coming from strangers. I’m not looking for sympathy, but I appreciate kind efforts to understand that there are differences in my life because of Maggie. The fact that strangers can only see the negative changes is not my concern.

My husband does not have to deal with the comments from strangers as much as I do. There are a couple of reasons for that. I spend more time out in the world with Maggie than he does and encounter people more often. Many of the comments come from other women, who may be more comfortable approaching a mom than a dad. In addition, Steve is much better at blowing people off than I am. He does not care what anyone thinks or says. That may sound like he is cold, but he is not. He is content and does not need input from strangers about his family. Though his experience with strangers is different, he does get the same amount of concern from friends and family. Steve, as dad, has all the same emotional pressures that I do. In addition, his freedom is enormously curtailed by our inability to travel or just take off for a few days. On top of that, he had to become the sole financial support for the family.

The impact on my sons’ lives was/is more subtle. Now that they are away at college, the day-to-day impact is less than it was. However, growing up with a sister as medically fragile and disabled as Maggie was had its challenges. They spent a lot of time in hospitals and doctor appointments. It seemed like Maggie had a medical crises on Tim’s birthday three or four times. They got a lot less attention from me. And medical issues? Please. Nothing could compare to what Maggie was going through so scraped knees and turned ankles were not treated with the same concern they might have been. The boys were shipped off to “visit” cousins a lot. The family was great at welcoming them and making it fun, but they knew there was no one at home to watch them. As they got older, they were frightened for Maggie.

Maggie’s disabilities became a central issue for Eddie in grammar school. Actually, the issues were not so much for him as for the teachers at the school. The slightest bit of misbehavior or sadness was immediately attributed to his “situation”. At a parent teacher conference, I was frequently told, “you know he HAS a disabled sister.” (No! really! I had no idea.) I offered to bring Maggie in and explain her differences to the students (and faculty). No thank you, not interested. I ignored that for a while thinking these women would wise up. When they did not, and I heard again about his disabled sister I said to the nun, “Well, yes sister, but we’re KEEPING her, so what do you suggest?” I was the one who wised up. I realized they had put Eddie in a box where he didn’t belong and were not the least bit interested in letting him out or learning anything about it.

Shortly after that, we switched schools. Best thing we ever did, for the boys and for all of us. We went to another school (also a Catholic school) where they jumped at the chance to learn about Maggie and let the boys be little boys. The school was supportive and helpful, not closed minded and judgmental. Soon after moving to the new school, both boys realized that when they were pushing Maggie around the schoolyard, they were far more likely to get the attention of the girls in their class. In their adolescence, we referred to Maggie as a “chick magnet”, a role Maggie loved.

As the boys got older they were far more cognizant of the dangers of Maggie’s medical conditions, but it just became part of the fabric of our lives. They would hop into her bed in the ICU, read her stories, and watch TV. They would listen to and understand what the doctors said and figure out how long until we were home and things would return to “normal.” However, “normal” in this house is different from normal in other houses. They were the only ones in high school to learn to drive using a wheelchair van. They were the only ones whose friends were pressed into service moving medical equipment when they came to visit. They were the only ones whose parents were ALWAYS home.

Then and now, Maggie is just their little sister. The differences in her life and theirs are part of the men they have become.

As I’ve said a million times, different does not mean worse.