Post Christmas Post

Maggie's Christmas socks from Eddie and  Grace. 

Christmas has come and gone. It was lovely. Exhausting, but lovely. Maggie stayed healthy (but she's getting sick now), my boys were here. All was right with the world. Now I am fighting the urge to throw the Christmas tree out the front window so I can restore what passes for order around here.

Eddie and Grace arrived from Southern California late Friday night and stayed until Monday. My father in law arrived Thursday and was here for the whole weekend. Tim stayed here on Christmas Eve night and had to sleep on the floor because there was no room at the Inn. We tried to draw the parallels, but a pad and sleeping bag on the floor isn't quite a manger.

Here are Maggie and Tim just before we left for Church on Christmas Eve. 

We stayed home for both Christmas Eve and Christmas Day. This year, for the first time I didn't even take Maggie to church with us on Christmas Eve afternoon. It's a difficult time of year for her health wise and the crowds of coughing people at church seemed like an easily avoidable risk. Besides, the stares of people in church creep all of us out. They are either fascinated or look at us doe eyed like we have given them perspective at Christmastime. Thanks, but that's not a role I care to play. Of course once there I felt tremendously guilty and sad that she wasn't with us. Can't win.

We have had a Christmas Eve dinner of cracked crab and ravioli for as many years as I can remember. This year was no exception. My mom and Steve's dad were here along with my brother and his family and all of us. My sister Joan and her family came by before dinner to visit so there were 16 people in and out of here. Christmas Day is was just the five of us and my father in law. Poor Tim had to work at noon on Christmas Day because God forbid people have to do without their Starbucks Latte for a day. That was a bummer for him, but he was here for the gift giving frenzy and came back and ate dinner here. Best of a bad situation.

Of course there was one dramatic moment after everyone left on Christmas Eve night. Steve was upstairs helping his dad get settled, the boys and Grace were in the living room talking and Maggie and I were in her room. I put her up on the bed and was changing her diaper. Maggie's room is straight back from the living room - a distance of maybe 20-25 feet through the dining room. They can see me, which turned out to be a very good thing. Maggie's muscle tone is especially tight lately (probably because she was getting sick) and changing her when she's like that is very challenging. She was in a very awkward position and suddenly did this Olympic diver twist and flew off the (very high) bed. I screeched as it happened and was able to "catch" her in mid air to break her fall, but there was NO WAY I could have held on.

 I didn't have to. The boys appeared out of nowhere before she hit the ground and saved the day. They must have seen it unfolding because they were there in a flash. I didn't know either of them could move that fast. It was like they had winged feet. They said it felt like one step instead of five or six. Maggie thought it was hilarious. She already thinks of them as heroes. Right then, so did I. We were damsels in distress and they saved the day.  

If that was my Christmas magic moment, I will take it happily.

Take your daughter to church day

Historically, attending church with Maggie has been an adventure. Her appearance, her wheelchair and or her behavior, are a constant source of fascination, and wonder to all the other congregants. When she was little, she was in my arms, not in a wheelchair, but she looked very different from other babies, so she stood out even then. Things have not changed that much in 15 years, even though we have attended three different churches.

We started out at church #1, where the boys first attended school. The family service was at 8:45 AM, which is E A R L Y when you are getting three little kids ready on a Sunday morning. We inevitably came in about 5 minutes late. Others would come in far later than we did, but everyone always watched everything we did. One day the priest commented about us from the altar. Nice. That was in our waning days there and hastened our exodus. Too bad, though, because there was a man there that used to insist on giving me money to buy the kids doughnuts after church, it could have been very lucrative if we stuck around. FYI, I never kept the money, I think he just needed to do that for whatever reason. It was always uncomfortable for me, like we were a charity case or something, but it clearly made him feel better. The boys were not pleased when the doughnuts never materialized.

Church #2 was home for us. It is across town and it is where the boys attended school or the second half of their K-8 education. It is a beautiful church with a very loving feel and loving congregation. It was, however, not accessible for the wheelchair. Our entry there required taking a very noisy lift into the church. We were generally on time because being late was very disruptive. Of course, these were Maggie’s screaming years. She loved going to church and hearing the singing and watching everyone sit, stand and kneel in unison. That was HILARIOUS for her. However, whenever the church became quiet, which is generally the most important part of the Mass, and the time for personal reflection, Maggie would scream her head off. The echo was AWESOME. People were generally kind about it, but we knew they were annoyed. One woman complained to the usher right in front of me saying Maggie did not need to attend church anyway because she could not sin. (Obviously, this woman did not know Maggie very well.) Inevitably, I would have to leave church with Maggie. We (ok I) would have a bagel and coffee at one of the local shops while the boys attended mass. Too bad the guy from church #1 didn’t move with us, he could have paid for my bagels.

Once the boys went to high school, we started going to church closer to home. Because Maggie’s screaming and hollering was so pervasive, we generally left her home. We went to church separately, waited for the nurse to come or just did not bother. Then she got the trach and lost her ability to scream. Sad. But at least we could start taking her to church with us again. Of course, the sound of the screaming was replaced by the whirring sound of the suction machine, but too bad. In the last year or so, the suction has been less frequent (maybe 4 times an hour, instead of 4 times a minute).

So, lately we have been hitting church #3, which is about ½ mile up the hill. It is a fantastic place that seats around 2500 people. The noise of the suction machine is barely audible in that giant place. Only the people immediately around us can even hear it. We still tend to hit the family Mass, just because it is at a convenient time. There are many little kids making noise, so we look relatively pious. One or two little kids always come up to Maggie’s chair and gingerly touch the wheel or something. It’s cute, but it kind of bugs me too. Maggie loves it, so what the heck. Seems like we’re finally settling in to a routine.

Nope. Maggie will not have it. Since she cannot scream and carry on any more, she has taken to yanking on the trach ties throughout mass. She is very able to pull the thing out and has successfully done so on numerous occasions. We have to jump into action to get a new one in so she can continue to breathe. This would NOT be something that would be appropriate for church. Yesterday I had to hold her left arm down for the entire hour while we were at church. If I let go to scratch my nose or anything, wham! Her hand was right back pulling on the ties. You should also know that holding Maggie in any position is almost impossible. She is amazingly strong when she wants her body a certain way. And her arms – feggedaboudit – they are like springs.

It’s funny because Maggie LOVES to go, she just cannot stand not being the center of attention for that long of a time. I think there is a possibility she is missing the point of going to church. On the other hand, perhaps she is trying to tell me she’s not Catholic. Too bad. Unless she finds someone to push her to a different church, this is where we are going. I have to wonder, though, whether or not she will continue to join us.

If she does, I am going to have to find my old friend from church #1. Maybe now he will buy me a drink.

Teach your Children well

We went to Mass at St. Ignatius on Christmas Eve. St Ignatius church is an amazing place. My family frequently went to this church for special occasions, including my dad’s funeral mass. The place means a lot to my family and to about 10,000 other families like mine. The church is visible from many parts of the city because it sits on top of a hill right in the middle of town. Our house is just a few blocks below it and we can see it out the back windows upstairs. Though not politically correct, the church is lit up at night and it is spectacular. It is also enormous. I think the church holds something like 3500 people. On a regular Sunday with the regular churchgoers it seems almost empty; but on Christmas, the place is packed.

There is a Christmas Mass at 4PM on Christmas Eve. That is perfect for families who want to go but cannot get everyone to church on Christmas morning. It is perfect for us too because we start our Christmas with that Mass and come back here for Christmas Eve dinner. As I noted before, Maggie was well enough to join us this year, so everything felt right.

There were HUNDREDS of little kids there. They were all dressed up and running around. It is very cute. They stare at Maggie open mouthed, which is not that cute. She sits in her wheelchair in the aisle, so she is quite visible to all of them. The bravest kids walk right up to her chair and start investigating all the nooks and crannies. We are talking little kids, maybe 1.5 to 2.5 years old. It does not bother Maggie and therefore it (generally) does not bother me. (Ok, it does a little). I understand that Maggie is different and her wheelchair is a HUGE draw to the children. I guess I do not always understand their parents. Or many parents.

One little boy wandered by uninterested in Maggie. He was about three. He walked up the aisle, back down and up again. He was looking for his parents. I watched his face change, saw the lower lip go out and knew he was lost. I told Steve to watch Maggie and approached him. “Do you want me to help you find your mom?” He nodded and took my hand. We walked up and down a couple of aisles. I presumed I would see his mom or dad frantically looking for him. Nothing. I walked across the back of the church and asked the people standing if they knew to whom he belonged. Nope. They thought he was with me. We went half way to the front to the church and I picked him up figuring again, that I would be able to see someone searching for him and he would be more visible in my arms. Remember, there are over 3500 people in this church. Nope. I asked him his name, told him mine, and said, “Let’s go up another aisle.” He was scared to death and trying not to cry.

We walked around for at least 10 minutes. I went farther across the back of the church when suddenly a man appeared, grabbed the child and said to him angrily, THIS is why you don’t wander away from me.” Not a word to me. Not ‘Thank you’, not ‘Merry Christmas’, not ‘Keep your hands off my son’, Nothing. He just grabbed him and walked away scolding the frightened child. I just stood there and quietly said to no one, “You’re welcome”. A woman standing next to me saw the whole thing and just said, “Poor kid.” My thought exactly.

I missed a good portion of the mass dealing with that little guy. That is fine, but his dad was a creep. I am sure his father was frightened and I hope he had been looking for him the whole time, but … please.

You do not know what you have there, mister. He is a perfectly healthy little boy who needs you to tell him he is safe. He needs you to keep him safe. Do not blame him when you screw up. Pay attention. Be a responsible parent.

I made my way back to my family and sat down. I just shook my head and watched the kids investigate Maggie’s chair again. It did not bother me so much after that. They may have been slightly inappropriate and their parents seemed to encourage the inappropriateness, but at least those parents were watching their children.

The Sounds of the Season

Christmas is here. I’m wondering if I really finished my Christmas shopping. We will soon see.
Today we will head to the Christmas Mass at 4:30. Maggie is coming. Maggie and church have an interesting history. She used to come with us all the time. But things changed over time. She hasn’t been to church in a long time.

When she was little people smiled sweetly at the little girl in the teeny wheelchair. One older man at our former church used to hand me money occasionally. That was bizarre, but very sweet. I would tell him no, but he was very insistent. I just threw it in the collection box over the protests of the boys who were quite insistent the man thought we should buy doughnuts.

After a couple of years Maggie found her voice. She could never “talk”, but she could really scream. And the quiet confines of the church made for great acoustics. Couple that with mom trying to get you to shut up and you have the perfect setting. She wasn’t upset or angry. She was doing a comedy routine for everyone in the quiet place. She thought it was hilarious. People stopped smiling sweetly. Maggie was disruptive. We would start out all together, but I would generally leave with her and walk around the neighborhood until the boys came out.


Now she has the trach and she can’t make any sounds. Her screams have been silenced. Ironic, isn’t it. Maggie still squirms and causes all sorts of trouble, but no one can hear her so they are back to smiling sweetly. Of course the noise of her screams will be replaced with the motor on the suction machine, but that’s only occasional. Tonight at Mass the little kids will be all dressed up and staring, mouths opened, at Maggie and all her paraphernalia.


Good times.


I hope the man who gave me money comes.


None of it matters. It’s Christmas and the church will be beautiful, the music will be beautiful and the peace of the Holiday will finally settle in.


I hope you all have a very Merry Christmas.