School year ending, confusion beginning

The school year is drawing to a close. The last day of school is next Friday may 31. Maggie graduates either Wednesday or Thursday of next week! It would be good if I could figure out which day, but it doesn't matter, I will be there with bells on whichever day it is.

Once school is out, Maggie will be with me for two weeks until summer school starts. Graduation is merely a ceremony for her, albeit an important one. School will continue in the same place until she's 22.

After that - don't ask. I have absolutely no idea what happens then. I am not familiar with any adult programs that are set up for Maggie and her nursing needs and to be honest I've kind of kept my head comfortably buried in the sand about that. At some point I have to get out of "da Nile" and figure that out.

But not today.

For now I'm trying to figure out the next few weeks. I started worked three days a week at UCSF Benioff Children's Hospital. I am a Parent Liaison, helping parents navigate the confusing medical system at a huge medical center like UCSF. I like it and I am uniquely qualified to do the job. With Maggie out of school, though, it's going to be much more difficult.

The nurses will just have to come during the day and Maggie and I will have our outings in the late afternoon/evening after they go. That's probably a better mall time for Maggie anyway. We always go in the early morning when it's just old ladies like me there. In the afternoon evenings, there will be kids Maggie's age there.


I have one problem with the nurse who can't do anything without help.  I can't be here to help her and I may have to find someone new to work that shift. It's hard. She loves Maggie and has been part of our family since Maggie was about 6 months old, but I need someone who can do the work.  Perhaps Nurse Ratchet is free.

What to do, what to do.....


Oh fiddle dee dee. I won't worry about that today I'll worry about that tomorrow.

Tomorrow is another day.

And I have a whole week to figure this out.

Perking along

You too can enjoy the “perks” of the disabled!! All it takes is about $1300 and a complete lack of morals and grace. The parking is great too!

I read this  yesterday about a new “trend” among some of the more wealthy and vapid members of our society. It is all the rage among  a (hopefully) small group of parents to hire a disabled individual at a price of approximately $1300/day to act as tour guide in Disney theme parks. The disabled individual get the disabled access pass from Disneyland/World allowing the family to go to the front of the line and avoid the long waits that are part of the Disney experience.  One of the rich Manhattanites who used this service said, now the 1% can enjoy the "perks" that the disabled get.

Holy Mother of God. I don't know who is worse. The people hiring these guides or the guides pimping themselves out and threatening a program that is actually of benefit to the disabled visitors to Disney theme parks. 

We utilized it once and it was great, I'm not going to lie. I never even would have attempted Disneyland without it.  There is no way Maggie could wait for several hours to go on a ride, even though there are very few rides she could actually handle. She only went on the tamest of attractions because it is difficult to hold her and she cannot protect herself. Even the Pirates of the Caribbean was a little much for her.  My sons were initially excited at the possibility of going to the front of the line to use Space Mountain until I reminded them that Maggie does not have head control. I have a rule: no head control, no roller coasters. They enjoyed space mountain after waiting their turn in line. Maggie and I just strolled around for that hour or so. I'm such a mean mom. 

Even with the access we were allowed,  Maggie melted down in very short order. It was too much for her, as I knew it would be. Still I felt Maggie should get a trip to Disneyland just like every other kid.

The point is, of course, that Maggie is not like every other kid and needed some accommodation to experience the park at all. The disabled accommodation did not make me want to return. In fact, as we walked down Main Street toward the exit I said to Steve, "There. We did it. I'm not coming back here until I have grandchildren." That was about 10 years ago. And we haven't been back since. 

Today Maggie could probably handle it better, though she still would not be able to utilize many of the rides, and we would not be able to lift her on and off the ones that would work, so a return trip is not likely. If we were to even consider returning,  it would only be if Maggie could have to have the same accommodation. If people are taking advantage of Disney in this regard, that will probably disappear. 

Though it was great, and certainly the only reason I tried Disneyland  then or would consider it now, I would not refer to this accommodation as a "perk" of being disabled or having a disabled member of the family.  Learning how to suction and parallel park at the same time while in rush hour traffic?  Now THAT is a perk, but something that attempts to level the very steep playing field is just a kindness and its good business. Families of disabled individuals know there is one place they can go and the disabled individual in their family can have a sporting chance at fun. That brings many of them back again and again and again to spend those dollars saved from not having to pay parking meters.   

Kindness and sporting chances -- what amazing concepts. I hope these greedy/spoiled people don't ruin this kindness for the people who really need it. The bragging coldhearted woman needs to be slapped and someone needs to find this disabled tour guide and put him/her/them out of business. They should all do a little time in the Toon Town slammer.  

My boys and their cousin Pete did some time in the Toon Town Jail some years back. Straightened 'em right up.  

(This picture is probably 1993ish, definitely before Maggie was born. We probably had more fun on this trip without the passes than we did when we went with Maggie.  Just sayin...) 

Special Olympics pictures

Special Olympics was last Friday. I promised more pictures and haven't had two minutes to post them. Finally, here they are.

This particular Special Olympics is for the kids in special education in San Francisco Unified. There are hundreds of competitors, each one having more fun than then next.

I really love the Parade in the beginning. All the kids line up by school and parade in front of the "crowd." Of course there isn't much crowd with the kids and the teachers all in the parade, but the few parents and supporters in the crowd, along with some kids attending on field trips, cheer wildly.

game face

 The Mission High kids were especially fearsome this year, starting with Maggie's Game Face.

It's less scary when she's laughing

Maggie's class

The events are generally not designed for the kids in chairs, but they adapt things to make them work. Maggie and her peers cannot push their wheelchairs on their own, so each had a teacher or paraprofessional pushing them. They take it seriously too. Check out Maggie's teacher Mr. G. and Mr. David gearing up to push Amber and Victor. (Maggie is hanging out behind them with Ms. Laura)

The races are short and hilarious.  Here's a 10 second video to give you an idea.

At one moment one of the kids looked like she was going over in her wheelchair. She only teetered and was righted immediately. The students and all the staff were laughing uproariously while I grabbed my heart. I looked up at the one other mom there and she had a hold of her heart too. We laughed when we saw each other. It was the international worried mom's sign.

I have said it before but it needs repeating. If you have the opportunity to attend a Special Olympic event, do it. It will help your heart and you will find yourself smiling over and over again. . You can see Ms. Maggie and her friend Bob definitely enjoy it.

______________________________________________________________

This post is written in memory of Mikaela Lynch, a nine year old special ed student from San Francisco who was found in a creek today after wandering away from her family home on Mother's Day. I didn't know Mikaela, but it is very likely she is in one of those crowd shots at these Special Olympics last Friday. My heartfelt condolences go out to her parents, family, friends and teachers.

Kiss your children, special or otherwise. Tomorrow is never promised.

Mothers and Mondays

Monday again. How does that keep happening?

I hope everyone had a lovely Mother's Day. I did. Steve got up to take over for the nurse letting me "sleep in."  Of course I am so programmed to get up early, I didn't sleep, but I did stay upstairs playing words with friends and luxuriating in the fact that I wasn't on duty.

While I lounged, Steve and Maggie went out into the garden and picked some flowers and made a breakfast tray. I messed them up by appearing so early, so my breakfast was biscotti and 4 fresh cherries. But the presentation was lovely.

Maggie made me a refrigerator magnet with her picture on it, which you can see on the tray in the picture. She also grew a plant from seeds in school and decorated a flower pot to put the plant in, but Steve didn't see that on the windowsill so it didn't make the tray. Both were great.

We had my mom, my brother Pat and his wife Julie came over for dinner. My sister Kate and her family came by for, and brought, hors d'oeuvres.  Steve cooked like a fiend all day and we feasted on paella. Company and dinner were both wonderful.

I did get the best card for my mom.

She seemed relieved. 

Special Olympics

This may get posted twice.  I wrote it from my phone but it didn't post and it's floating out there in the blogosphere somewhere. I'm trying again.

Today is Special Olympics and Maggie has her game face ON

Not too many athletes put on eye black for track and field events, but Maggie is not like too many athletes anyway.

More to follow!

Kiss a Nurse!

Today is the beginning of National Nurses Week. It is a time to recognize and appreciate the unsung heroes who do the lion's share of the work and get relatively small recognition in the medical communities. It is an exciting profession offering opportunities in a myriad of ways. If you are looking for something important to do with your life, consider nursing.

Nurses are everywhere -- no one knows that better than we do.There are nurses in hospitals, schools, doctor's offices, homes, businesses, and many other places.  They are not always wearing scrubs either, they may be in the boardroom, or the person behind you in line at the supermarket. If you are lucky there will be a table of nurses sitting next to you in a restaurant when a heart attack strikes or you choke on your food. They will care for you and go right back to their dinner when you are safe.

Before Maggie was born, I admired nurses in a general sense, in that way you respect and admire people who are called to do certain work. I didn't have too much cause to interact with nurses because everyone was healthy, so the respect and admiration were from a distance. When Maggie entered the world, we received a crash course in Nursing appreciation and I never forgot it.

It was a nurse who encouraged me to question a doctor about a decision when Maggie was a baby and I haven't shut up since. It was always a nurse showing us  how to do things for Maggie, how to use the feeding tube, and a catheter and care for a trach. I learned how to read monitors and when NOT to worry about the numbers. I still remember trying to learn sterile technique from Adrienne, a veteran in the PICU. We went through a lot of gloves and suction sets until I got the timing right. I deal with nurse practitioners in several of the specialties Maggie sees and always get prompt, reasoned advice. When things are not going well in the hospital, it is always a nurse who has my back and gets things back to where they need to be.

 Maggie owes her life to the nurses who have cared for her over the years. But they didn't just care for Maggie. They cared for the rest of the family too. The boys were fawned over when they came to visit and, in addition to the education we received at their hands,  Steve and I were always treated with tremendous respect and kindness.

There are a million examples I could give, but one always pops into my mind first. Maggie was a tiny baby, maybe 10 days old. She was in the NICU, where she would stay for 11 weeks, and just out of her second (or third) surgery. It was a big one. When she was born her esophagus was in two pieces. This surgery was going to connect the two pieces and it was extremely delicate because there wasn't quite enough tissue to reach. After the surgery Maggie had to be on Pavulon, a paralyzing agent so that there would be absolutely no movement. Without the ventilator would not even be able to breathe. Seeing her like that is still the most difficult memory I have.

As I stood over her isolette looking down at that frighteningly still baby, I felt completely empty and fought back tears. I was helpless. I could not do a single thing for her and this was day 1 of 10 days. I didn't know how I was going to make it.

Carol, the nurse on that day saw the struggle I was going through. She seemed to know what I was thinking. She looked at me and said, "Maggie can hear you, Talk to her. Let her know you are here."  

Those words were perhaps the best gift I have ever received, and not just because I like to talk. They gave me a purpose at the lowest possible moment. They empowered me to help Maggie. I sat there next to her little bed and told Maggie about her brothers and the house she hadn't seen yet. I told her what was going on with the other babies around her and who was coming and going out of the NICU. I told her how tough she was and that things were going to get easier. I read her stories and payed music.  I talked her little ears off and probably forged the basis of the relationship we have to this day.

So ... yeah, I do have an appreciation for nurses. The problem is I don't think I can show it all in just one week.

Mall withdrawal

This broken foot is really slowing me down. It hasn't really been painful so I just went about my regular activities. Perhaps walking 12 blocks on Friday wasn't that good of an idea.  I'm paying the price for that now. It's a bit painful, but mostly it is just exhausting me. I have to choose one outing and pace myself.

This morning Maggie asked if we could go to the mall. She hasn't been in nearly two weeks and she may be having mall withdrawal, a serious condition that targets teenage girls. Sadly, her condition will go untreated as the mall was not the one outing chosen for today.

The outing du jour was Costco. We  have been needing to do a Costco run for a while and I wanted to do it while Steve was available to help me. Even I have limits, and pushing Maggie's chair and pulling one of those giant carts with a broken foot is just too pathetic. When we got there Steve suggested I ride around in one of these. He even offered to rig it up so I could tow Maggie and the basket.  I politely declined. 

 Maggie wasn't buying my argument that  Costco is just a mall without walls. There was quite a bit of eye rolling by someone.

As we were finishing up, a man walked around us to get something. I was suctioning Maggie and probably blocking traffic. I saw him look back at us, but didn't really pay any attention until I heard him say "Hi Maggie, what are you doing here."  That is something that just doesn't happen very often and it surprised me.   

He turned out to be Mr. D, a teacher from Mission High.  Mr. D doesn't teach special ed, but he certainly knew Maggie. He was one of her best customers when they used to do the coffee cart on Mondays.Maggie was beside herself with joy when she realized who it was, reaching out her hand and throwing herself back in her chair laughing. 

 Mr. D's simple greeting and chat completely changed Maggie's affect. He saved me from a pouting Maggie just by saying hello.

 The mall withdrawal is in remission.