Happy Birthday

It's Maggie's birthday. She would be 22 today.

I woke up very early - like 4am - and everything just felt heavy. My limbs were like weights, the blankets were like iron and even the air was like lead. It's less of a sadness in the tears and weeping kind of way and more of a heaviness of the reality of her being gone.

Maggie's birthday was always a big celebration around here. We had many parties at school over the years through elementary, middle and high school. There were Pinapple parties, because that was her favorite word then, dance parties, Mardi gras parties and more. Then we had a giant 18th birthday party in a rented hall with 100 people. That was wild fun.

 Maggie knew this was her day (and really what day wasn't?) and she relished the attention.

Despite the revelry, Maggie's birthday always had a touch of sadness too. Like many parents of kids with disabilities, birthdays are a reminder of what other kids her age are like and what she would be doing if life were different. Especially in the early years when every year in a typical kids life is so different from the last. You also can't help but remember the day she was born. That day was the second worst day of my life. The child you expect is gone and you have a different child. In time you learn what to do and how to do it and you accept and relish the differences, but at first you are just terrified and sad. The day your child is born is supposed to be happy, but that day was not. It's a bit of a harbinger to let you know that everything will be measured differently.

If Maggie were still here I would be angsting over 22 because that would mean it was time to transition to the adult world. We would have to leave the school district and find a program that would work for Maggie going forward. I would have worried about nursing and all of those things and they would have been very real concerns.

How I wish I had to do that today.

But Birthdays are happy! And Maggie was happy! And remembering that makes me Happy. Well, happiER anyway.

Happy Birthday Maggie May. I hope there are dances and pinapple and Mardi Gras celebrations for you.

I miss you every minute of every day.

Milestones A-Mundo

Wow. Another busy weekend. These graduations and birthdays have us hopping. This weekend we went to another nephew's graduation (I have a total of four graduating nephews this year, Two from high school and two from college.) In addition we had a birthday party for my mom.

Saturday's graduate was Jack, my sister Joni's son up in Petaluma. Joni's house is flat and it's the one house in my family that is easy for Maggie's wheelchair. She hardly gets to go to anything, because it's too far away, or too long or not accessible or something; but this one would work. It is about a 45 minute drive, but Steve drove and I sat in the back with Maggie. Since we had my mom and Tim with us, it was easy. We arrived and got Maggie into the house and went straight through to the back. They have an enormous back yard and the party was out there. The day before the party by brother in law put the finishing touches on the new deck, which looked great. Unfortunately, he decided to drop it down about a foot and now there was a two step drop outside. BUMMER. Maggie stayed inside for a bit and then we lifted her down to the deck. It was not difficult and this house is still the easiest of all of my siblings, but the ease of movement was gone.
Oh well, the party was great.

Joni had SOOOOO much food that she gave me a Caeser Salad to take home. I don't mean just a salad for dinner, I'm talking about a GIANT salad - she had two of them plus a ton of other food. I was hosting a brunch on Sunday and I could put that Caeser to good use. To give you an idea of the size of the thing, Steve and Tim and I had only salad for dinner on Saturday, I fed it to 16 people for brunch, four of us had it for dinner on Sunday and there's still a full sized bowl full left. It was delicious.

The brunch was in honor of my mother's birthday. It's a big one, but I won't publish her age here. Believe me when I tell you she doesn't look or act it; but it needed celebrating. My brother came up form LA with his wife, three of my sisters and their husbands and 6 of the 20 grandchildren came here for brunch. In a birthday miracle, the fog cleared long enough to enjoy the back deck for a while. It was a whirlwind fiesta but there was a lot of laughing, and loud talking. Maggie sort of checked out and just snoozed in the living room.

Pictures - above, the birthday girl is blowing out the candle on the LIME cheesecake that my sister Kate made from the gazillion limes in her garden. Oh MY, that was good. Below is me and Steve, my sister in law Dianne and the birthday girl. It was a fun afternoon.

Once everyone was gone, Steve took off on his bike for a few hours. Tim and Maggie and I kind of  lazed around and recovered. I am still in a bit of recovery mode, but today, Mom camp resumes. It is up to me to make sure Miss Maggie is entertained.  It's a drippy day out there, so we may have to do something indoorsy. Maggie is fine with that as long as the focus stays on her.  No more of this honoring others nonsense for her. It's back to Maggie as the Center of the Universe.

All is right with the world.

Par-Tay

Maggie’s birthday is next Wednesday. Because I am having surgery Tuesday we will be in no shape for a proper celebration on the big day; hence we are having a party tomorrow in school.


I have to get he Maggie Mix 2010 cd prepared. Thanks to my niece Nina and from some of you (especially Elizabeth M) I have the songs, I just need to burn the cd’s. So the music will be set. You might be wondering what sort of themes we are having. Maggie and her teacher picked that out and I have to commend them on their very original choice.

Pirates? no! Surfing? No. Disco? no.

Maggie is having a pineapple party.

Yes, that’s right, pineapple.

Ms. Taylor(Maggies teacher) talked with Maggie about what she would like and this was the result. Why? you may ask. All I can say is why not? Maggie loves pineapple. She likes the sound of the word and she likes the texture and even the taste.

Even though she gets 100% of her nutrition from her gastrostomy tube,(“g-tube”) Maggie does get to taste certain things. The choices are very limited because of her severe allergies to so many things and her aversion to certain textures in her mouth. For some reason pineapple passes both tests. Pineapple is something she loves. Therefore, a pineapple party it is.

Maggie and I went to the party store over the weekend. I was thinking I would have to find Hawaiian or Tiki decorations and try to find pineapples that way. Au contraire. We found pineapple lights and many pineapple decorations and we bought ‘em all. Today I am going to make a pineapple upside down cake, buy some pineapple spears and order Hawaiian pizza for the party.

Other than her classmates and others from Mission High, just my mom is coming along with Steve and me. When I called to invite my mother, I told her about the theme and she said. “Perfect, I’ll wear m pineapple jacket.”

Of course she has a pineapple jacket. What 82-year-old mother of seven, grandmother of 20 and great grandmother of three doesn’t.

Maybe that’s where Maggie gets her joie de vivre.

Sweet Sixteen

Maggie’s 16th birthday is on March 3. 16! That is hard for me to believe.


Birthdays for her are funny. They make me very happy and very sad. It makes me happy because we made it through another year. There were many years that I did not think she would survive. Today, though it is a lot of work to keep her this way, she is healthy and stable. It makes me sad because birthdays are a reminder of the day she was born and all the terror that came with it and the very very long road we have been on ever since.

The road one has to travel with a disabled child is different from the road with typical kids. They overlap or intersect at times, but generally it is a different path altogether.  This road is filled with amazing and lovely things that others never get to see, but it is full of rocks and potholes too. That’s ok; it’s just the way it is.

Birthdays are one of the places the two roads intersect. Everybody can relate to birthdays, but for parents like me, birthdays become a very public reminder of what will never be. She is 16. That is a milestone birthday. Kids have sweet 16 parties and get drivers licenses. Not Maggie.

And that’s ok because it’s just the way it is.

When Maggie was little the boys used to ask questions about what she would and would not be able to do when she got bigger. We just answered the questions as they arose. Not because we are such excellent parents with a developmental plan, but Rather, we did not really look forward very often and the questions from the boys allowed us to deal with the future from their perspective. I specifically recall Eddie’s concern that Maggie would never have to do chores. He offered to customize her wheelchair by attaching a broom to the bottom so she could sweep the floor

Once when Maggie was about two I stopped at a store on the way home. She was still in a car seat then. Generally, I would jump out of the car, get the stroller/wheelchair set up and then grab Maggie. For some reason that day, I grabbed Maggie first. Doing anything with her in my arms was impossible. She could not even hold her head up and it took both arms to secure her safely in your arms. I had Maggie in my arms and needed to put her down to open her stroller/wheelchair. I propped her up in the driver’s seat with one hand on her and the other hand opening the chair. As I fumbled with the equipment one handed, Tim, who was about 6 or 7 looked at Maggie in the driver’s seat and asked, “Mom, will Maggie ever be able to drive?”

Of course I knew the answer was no, but that was a loaded question. It was so far away and simply telling him so could be devastating. We tended to take things as they came and this was looking way way down the line. I looked at her in the driver’s seat and looked at him and, buying time, I said, well she is awfully short, don’t you think? He laughed and said, NO, I mean when she’s bigger

I just faced the music and said, “I don’t think so Tim.” He said why not?” as if it were a challenge to me. The boys knew Maggie was going to therapists and doctors several times a week and we were all waiting to see how far she would go. By that point, I was hoping she would someday be able to sit up on her own (did not happen) but the boys were still thinking she was going to be fine. Going for the easiest answer I said, well, she doesn’t see very well and California really does not want people driving vehicles if they cannot see where they are going. “He nodded and said, “Oh, right” That totally satisfied him, but I think he had a greater understanding after that. They have always been close and that day made them a little closer. I may have posted this picture of the two of them before, but here it is again. It is one of my favorites. He's watching tv and holding her as she sleeps.

Now Maggie is there. Maggie is of “driving” age. We are all the way down that road, she is who she is, and the boys are who they are. That’s just the way it is.

 And it’s all good.

Celebrate in triplicate

Maggie’s birthday is in a couple of weeks. Birthdays are often difficult for parents of disabled children because it is like a flashing billboard reminding us of how different our kids are from their non-disabled peers. That is not so much the case with me anymore, but it was for several years. I still dislike her birthday time, for other reasons. In Maggie’s world birthdays mean more than gifts and celebrations, it is time to check in with all the service providers to renew, update tweak or even discontinue services. And Happy Birthday to you too.


This started yesterday with our visit to the doctor at California Children’s Services (CCS). This one is actually semiannual. The physical and occupational therapists give their report on Maggie’s progress toward her goals, set new goals for the next six months and recommend the frequency of service. The PT recommended cutting her therapy in half. I think that is a crock, but I did not fight it. The budget is in tatters in California and I am not sure what benefit she would get from someone who does not want to work with her.

I can accept the fiscal realities. Everybody is feeling the pinch, and Maggie is no different. What I will NOT stand for, however, is having reports contain inappropriate or incorrect information to justify cutting services. Maggie’s web of services is so complicated that a wrong piece of information at point A can be plugged in at point B and screw up more pressing services. The PT gave me his draft report and I had him change it to be accurate. If he can justify cutting services with correct information, I would not fight him. I do not agree with it, but I have to choose my battles.

Monday is Maggie’s IEP, (Individual Education Program) meeting. This is the school district’s mandated annual meeting to address Maggie’s educational needs and what services the school district will offer to meet those. For some parents this is a very contentious meeting. That has never been my experience and I do not expect it will be this time either. There may be some cuts here and there because the San Francisco Schools are B R O K E, but I am more interested in the program as a whole. There are no transitions this year, so I expect it will be fine.

After the school district, I have to meet with Golden Gate Regional Center (GGRC) for Maggie’s annual review there. I cannot remember the name of that document IPP – Individual program plan, I think. This addresses Maggie’s needs that are not school or therapy related. This agency has been reimbursing me for the nursing for the past couple of years. I do not anticipate any changes there either, but I do not think I will rest easy until I know that is the case. The budget crises looms large, but California is going to have to pay for Maggie one way or the other. It is cheaper and better for the state (and for Maggie) to stay at home than to live in an institution, so I doubt her care will be affected.

Because Maggie’s disabilities are so extreme, I do not have the same angst over these meetings that other parents have. Maggie’s needs are obvious and the services are in place. I do have to be vigilant that the reports are correct, though because undoing a mistake is very difficult. Agency B will rely upon incorrect or understated information about her medical needs from Agency A and the services adjusted accordingly. If it results in being offered a service we do not need, that’s easy; but more often it puts me in a position to fight to keep something she DOES need.

As you can imagine, all of this really kills the mood to celebrate her birthday. The real celebration comes when all this is complete.

This year, just for good measure, I am having my shoulder surgery the day before her birthday. I should be a barrel of laughs for Maggie.

Feliz Cumpleanos

There was a party on Friday afternoon in Maggie’s classroom and I was invited. It was Juan’s 18th birthday. Juan is Maggie’s “boyfriend.” He has significant disabilities himself, but he uses what he has to his advantage. He is the only one in the class who can walk, so he is able to position himself next to Maggie all the time.

Juan is unable to speak and uses a dynavox as well. He does not need the buttons like Maggie does, but just uses the communication device directly. When Maggie wants to talk, she hits one switch to move the “cursor” to the thing she wants to say and, once there, uses the other switch to actually say it. When Maggie gets going, she can fly through the screens and selections to say exactly what she wants. When she is not in the mood, she just sits there smiling as if to say, “You know what I want, just do it.” Juan will have none of that. He takes her hand and hits the button with it as if to say, “C’mon, get with it.” Maggie responds to him.

Maggie did not need any prompting on Friday, though. I programmed her talker so that she could say "Happy Birthday Juan" in spanish, which is the language Juan's family speaks at home. It's simply Feliz Cumpleanos. However, that took a while becaue the dynavox doesn't recognize spanish words and I had to spell them phonetically. I believe I entered it "Felleez coompleeaanyos." He loved the message and so did his mom. (Maggie's making points with the mother.)

There are six kids in Maggie’s class and I assumed the party would be those students, the adults in the class and a couple of parents. I arranged my day to get to Juan’s party at 1:00PM, just as it was beginning. Or so I thought. When I arrived at 1:05, there were at least 25 people in the room. Juan made invitations on the computer in the classroom the day before and went all over the school distributing them. Even the principal stopped by. It was a happy group of people.

Juan was decked out in a suit and tie, and he looked marvelous. He greeted each person, including me, with a big hug. When the noise became too much for him he put on his headphones for a few minutes until he was ready to deal with it again. He is a man who knows how to handle himself.

I did get one picture of Maggie and Juan with my phone. However, I missed the best part. I received an important call and stepped out of the room for a minute. While I was gone, Juan was dancing with Maggie, holding her hand and twirling her around in the wheelchair. The teacher and nurse were looking for me, but I was in the hallway. Of course, it happens the minute I step out.


Then again, maybe it is no coincidence. Juan saw the old lady was gone and made his move.


Gratitude: I am thankful Maggie has such wonderful people around her. In all honestly, I am also thankful Maggie is not 18 yet.

Happy Birthday Maggie

Today is Maggie actual birthday. She was born 15 years ago, on March 3, 1994. That was a hard day in my life. I've written the whole story, but it's too much to think about now.

Yesterday was frustrating. Maggie stayed home from school because she is still ill. It was special olympics day, so I took her there myself. I figured she could do that much and then come home. She was dressed and ready to go in her new basketball socks. We arrived at the gym and there was no way to get close in a car. It's very pretty, set way back in a grove of trees. It looked very far away in the downpour. The kids had to walk through the rain about 50 yards to the gym. The path was full of puddles; I could see some of the kids feet were completely submerged. That was daunting.Pushing a wheelchair through standing water is very difficult.

It was also on a fairly busy narrow street and there was no where to unload the wheelchair. I called the nurse on the cell because the class was already inside. I explained my dilemma. She said they had a hard time getting the other kids in because the path was also very steep. I asked where the bus unloaded and she said they just blocked traffic for about ten minutes. It's one thing for a school bus to do that and quite another for a personal vehicle. Besides, I couldn't just leave Maggie out there while I parked the car. The closest spot was about three blocks away.

The nurse offered to come and help me, but I said, I think we have to skip this. It was POURING rain, Maggie was sick, her eye was still swollen shut, and the access was just ridiculous. Somebody was a little unclear on the concept. Special olympics should not have access issues.(No one's fault it was raining, but it's the first week of March and that's entirely likely).

Maggie was NOT happy with me, but sometimes mean moms have to make the tough calls.

I needed some Irish tea so we went to buy that. We parked inside and she never got wet. The store was a bit difficult to maneuver in the wheelchair, but we managed. She was wiped out when we got home.

In fact, she's home today as well. We're going to go say hello at school if this downpour stops. She's sick, but she has stretches where she's doing well. And it's her birthday, so we can't just hang out. I suggested a bowl of ice cream with a candle for tonight, since we had a big cake on Sunday. Remember, Maggie doesn't eat cake or ice cream. Actually I don't really eat cake either. But Steve does. And he thought that was a dumb idea. So we'll make another cake today. That will be fun for Maggie anyway.

My girl is fifteen. Amazing. Though remembering the day she was born is difficult, every day since has been a miracle. I never in a million years thought she'd be here on her 15th birthday. She's here and thriving. (Present illness notwthstanding).

One Eyed Jump Shot

It has been an interesting weekend. Maggie’s birthday party was yesterday. It is the first time in years that we actually had a party. Birthdays can be tough and the celebratory feel just is not always there.

This year, Maggie discovered music and made some good friends at school. That made it easier. We had a dance party. I sought input on the music from the girls, from my niece Nina, downloaded it, and had it playing the whole time. For the Piece de resistance, Maggie received a disco ball as an early birthday present from my friend Linny. Dad rigged it up with a motor and lights.

There wasn’t a lot of dancing, but with four wheelchairs in the house, there wasn’t a lot of room anyway. With the teachers and attendants et al, there were over 20 people. It was crowded and fun.

Maggie had fun; but she would have enjoyed it more if she felt better. Friday evening she had an “episode”. She turned blue and was really having trouble breathing. It was about 6PM, just as the doctor’s are gone for the weekend. Perfect. We know what to do; we gave her oxygen, changed the trach, and got her back and stable. It took several minutes, though and the trach change did not really help. This was a different problem. I considered the ER, but Friday night in the ER is craziness. We watched her closely and though she needed more oxygen than usual, she was doing all right. When she still needed oxygen in the morning, I knew we had to go. I presumed she had pneumonia. The docs decided the same thing, even thought her x-ray was clear. She started the med, had a good day and Saturday we were a “go” for the party. Saturday night was a little dicey, but that’s par for the course.

Sunday morning as I was leaving to pick up the cake, the doctor called from the ER to tell me that Maggie has RSV, respiratory syncytial virus. For normal healthy people at is a bad cold, for babies, or children with trachs (like Maggie) it can be much worse. In addition, it is highly contagious. Arrgh. I called as many people as I could. One decided not to come and one decided not to bring her little kids. Other than that, everybody came to the party. It is pretty easy to stay away from Maggie because the wheelchair is a natural barrier. I hope that the guests left only with their treats and not with any bugs.

The capper was about an hour before the party when Maggie started reacting to something. Her left eye just swelled up and closed. We gave her Benadryl right away, but she has looked like this for the past 24 hours.

Could be the prescription, could be just the illness itself. Nevertheless, she went through her party as Popeye. Today we are waiting to hear from the doctor. She is not going to school this morning, but I am going to take her over to Special Olympics. She has been practicing so hard for this.

Of course, it’s basketball, so I am not sure how accurate her shot will be with one eye closed.

Pipe Down

Maggie’s class is very small. There are only four full time students assigned to the class. Other kids come in for part of the day, but generally, it is intimate. Lately it has been only three kids as one is still recovering from surgery. She will be back next week, though. Until then it is just Maggie and the boys, “Y’ and “G.” All four of the kids are in wheelchairs so there is a lot of equipment in the room. In addition, the class focuses on augmentative communication and all the full time students are non-verbal. Maggie has additional medical challenges that the other kids do not have to deal with, but she has an advantage over the two boys in a different way. She comes from a family where English is the first language.

Imagine if you can, a child trying to overcome his physical handicaps and inability to speak by using augmentative communication – and having that “augmentative communication” taught in a language you do not hear at home. It is very difficult. “Y” is Chinese and his family does not speak English at all. “G”’s family is Spanish speaking. They are able to speak English, but do not do so at home. That puts them at a tremendous disadvantage trying to learn a communication device that is speaking a different language.

It is particularly difficult for “Y” who only recently joined the class. He is still getting familiar with the concept of being able to communicate. It is frustrating for him; and when he’s frustrated, he tends to scream. Then when he gets the feedback for screaming, he screams again. It can be trying for everyone.

The other day Maggie and I were in the kitchen and she was jabbering away on her communication device. It is normal enough for us that I was only half paying attention to her. I was just responding to what I heard without really listening. (Oh, come on now, other mothers do the same thing). I realized after a bit I didn’t know what she was saying. When I finally stopped to really listen I heard something that sounded like “Moo CHO.” I went over to her talker to see which button she was hitting, but she had moved off that page. I asked her to go back and press the “Moo CHO” button again. She started navigating back to that page.

I figured it was either a mistake or she was saying “mucho” in Spanish. Keep in mind, the communication device speaks phonetically and it could have just been reading it wrong. Often when I am programming it, I have to misspell words so that they will be pronounced correctly. (For instance: “let’s read a book” comes out "let’s red a book" so I spell it “reed”)

She found the button and hit it again. Apparently, Maggie also speaks Cantonese. Moo CHO means stop screaming. The whole read out is “Stop screaming. Moo CHO.” I was very impressed. I asked Maggie is she says that to “Y” and she said yes. I asked does he still scream a lot and she just hit “Moo CHO” and started laughing.

Pretty cool. I've always said Maggie was the one child who cannot talk, but can still "talk back," Now I have to add that she cannot speak, but can bark orders in several languages.

She gets that from me.

Also, Maggie received a new jean jacket from her Aunt Dianne yesterday. It just arrived in the mail for no particular reason. We’ll call it an early birthday present. She looked pretty cool heading off to school this morning.

Party plans

Maggie's birthday is approaching. She will be 15 on March 3.

Many parents of disabled children will tell you that the birthday is hard. I am one of them.They are a reminder of many things. The day she was born was not a happy day. And milestones marking that day are likewise not happy.

It was more difficult when she was younger because parents use birthdays as developmental milestones as well. "He was walking before his first birthday" "She was speaking in full sentences by 2" "He could read before 5,"etc etc. When your child isn't hitting any of those milestones, reminders are hard.

By age 15 those measurements are long behind us. In fact there are some blessings to Maggie not being a typical teenager. I NEVER get attitude. Maggie has two speeds - happy and quiet. She's not moody or sad. If something hurts she cries and she occasionally gets mad, but generally it's either because she's tired or frustrated because she cannot make her wants understood. There's no drama - well at least not teenage drama. (WE do have a lot of medical drama).

This year we are going to party. We considered various options for her birthday. Bowling is fun, but the only place with the adapted bowling doesn't have parking and it's a hassle to get to. So that's out. Other options were likewise unworkable. We decided to go with the basic, party at the house. We have a lift so the wheelchairs can get in easily. It will be a dancing and pizza party. Maggie's friends from school can come over and we'll have dance music for them. (I am consulting with my 13 year old niece for the right mix of music) I can burn cd's for the kids as party favors. Steve can make his pizza dough and the kids can make their own pizzas. There could be as many as five wheelchairs in here, so we will have to move the furniture, but we should do that anyway for a dance party, right?

It will actually be a developmentally appropriate party - 13-15 year olds eating pizza and listening to music.

Hmmmm. Everything evens out eventually.

Musical suggestions welcome.