The Lucky Pumpkin

What is the proper etiquette for emails? I have a friend who I emailed last year when Emily was born. She replied, and I sent a note back with replies to her questions and some questions of my own. She finally replied almost a year later! She is super nice, so I gave her the benefit of the doubt and answered the email the same day it was sent. That was about three weeks ago. What gives? Is this considered normal or appropriate? I haven’t seen her in a year and a half because she lives in another state. To be honest, I had written the friendship off as a casualty of moving until I got the note a few weeks ago. I am hoping that it isn’t because I told her about Emily having Down syndrome. There have been a few situations where I have thought that we were being avoided for that reason. I just think, “Who needs those people anyway?” But this person is very good friends with another person who has a child with Down syndrome, so I really don’t think that is the reason. Oh, well, I am seriously considering ignoring any other correspondence that comes my way from her just because this is starting to feel insulting.

Oh, my poor babies! They have been so sick this week. We all have had a very bad cold. Bob and I actually both got an earache out of it, and we were both commenting that we hadn’t had one of those since we were about four years old! Emily and Anna both had fevers. Emily wakes up every morning with her eyes and nose covered with with dried mucus, and even her tongue has been covered the last two days. I really feel badly for her. I have to wash her face a few times a day because her eyes get all matted again. I think that because her nasal passages are very narrow that there is no room for the drainage to go. She sure is a trooper, though. She is SUCH a good kid. (Speaking of “kid,” when I call Anna a good kid, she says, “I’m not a kid, I’m a CHILD!” Too cute.)

I would just like to thank the teacher of the music class that we have been going to for infecting the family. I am almost sure that this is where the virus came from. The teacher passes around instruments and I know that she doesn’t wipe the instruments down in between uses. She also encourages the babies to put the instruments in their mouths, so there is plenty of germ sharing. At $175.00 per child and $90.00 for the second child, it was a very expensive cold that we got. I think that this will be the last time we take that class. I am going to look for a Kindermusik class in the area. The teacher of the class we go to tells the parents to not show the kids how to play the instruments. “There is no wrong way to experience music. If they want to experience the song by having the instrument in their mouths, that is fine.” Sorry, but there IS a right and wrong way to play instruments. And it is ten times harder to unlearn the wrong way and than to just learn it the right way in the first place. This class was recommended to me by some neighbors, and the teacher has a phD, but I later found out that it is in something totally unrelated to Music or teaching. She has no qualifications for teaching music. She’s a really nice person, but there is more to teaching than a two-week course can prepare you for.

I read a blog written by someone I know. About six months ago she went off on a rant about how “older people” had no right having children. She never defined what “older people” meant, but I assume she was talking about her brother-in-law who is in his early 50s (but his second wife is younger,) and who has two small kids. She said it was selfish, etc. She wasn’t referring to me, but I’m sure she would think that I had it coming to me to have a child with Down syndrome. That I was “playing the odds and lost.” HA! That’s what she thinks! Emily is the best gift that I could have ever received from God. I consider it the highest honor that God trusted me enough to take care of the two precious girls that I have. It’s not that I am THAT old, anyway. I was 38 when Emily was born, 37 when she was conceived. Plenty of people are having kids much older than that these days. I would have liked to have my girls when I was a little bit younger, but this is the way it worked out. I know it happened this way for a reason. I spent almost all of my 20s and 30s working on my spirituality. I have read countless books, studied hard, prayed, worked on myself to forgive my family, and tried to become a better person. I still have work to do, but I can see now how much more mature I am (not in age, but actual maturity,) than when I was 22, which is how old she was when she had her first daughter. I really think that if I had had my children in my early 20s, I would not have had Emily as a daughter. I know that some people think that this is what I should have done, then. But because I raised my level of spirituality, God knew that I was at a level where I could be trusted to care for her in the manner that she deserves. (I don’t mean with “things,” either, but with the full understanding and KNOWING that she is the most precious of gifts, and not something to be hidden or to be ashamed of.) I think that metaphysically, this is why most children with Down syndrome are born to older parents. (I am sure there is a biological reason, too, but I am talking about in the grand scheme of God’s plan.) The parents have to be at a certain level of maturity. Certainly, younger people can be at that level, too, that is why some younger people are blessed with children with Down syndrome. But for most of us, it takes time to get there. Anyway, my friend who is so vocal about older parents just said that her 18 year old daughter will have a baby is August. She will be 41 and her daughter will be 19. Now this happens all the time, but she feels like a failure as a parent and is devastated by the whole thing. I just wish her the best, and I hope that maybe she will realize that she shouldn’t be so judgemental about other people’s choices when her situation turned out to be so “devastating” as she puts it.

The Leader of the Band by Dan Fogelberg

An only child alone and wild
A cabinet maker’s son.
His hands were meant for different work
And his heart was known to none.

He left his home and went his lone
And solitary way. And he gave to me
A gift I know I never can repay.

A quiet man of music denied a simpler fate.
He tried to be a soldier once but his music wouldn’t wait.
He earned his love through discipline
A thundering, velvet hand.
His gentle means of sculpting souls
Took me years to understand.

The leader of the band is tired and his eyes are growing old.
But his blood runs through my instrument
And his song is in my soul.

My life has been a poor attempt to imitate the man.
I’m just a living legacy to the leader of the band.

I heard this song tonight when I was shopping. It just brought back a flood of memories. I actually had to duck into an empty aisle because I started crying. This song was popular when I was in High School. (Did I just date myself?) We did a fund raiser for the Music Department on Valentine’s Day where we did singing telegrams. We decided to sing this song for our Band Director, Mr. E. I remember that it touched him so much that he cried. It felt nice to do something for him to show him how much he meant to us. He was really my Father figure. My own father was so disappointing. My dad was old-school, German-catholic, strict, and emotionally abusive. (And sometimes physically abusive.) I don’t remember a time when I didn’t dislike him. (I know that’s a double negative, but I am consciously trying not to use the word “hate.”) Mr. E. was really a role-model and mentor in the best sense. He showed us that being a good citizen was what was most important. Of course, the music was always important, too, but what I really learned was how to be kind, caring, and humble, and still have fun. Mr. E. has a wonderful sense of humor, always laughing and telling jokes. Anytime he was conducting and there was a miscommunication, he would take responsibility. He’d say, “Sorry, That was my fault. I didn’t cue you in correctly.” Or something like that. That was the first time I heard an adult man say “sorry,” to me. I know that sounds crazy, but it’s true. I remember thinking how odd it was that he would apologize to the band when nine times out of ten it was our fault. But it really went a long way for me to learn the proper way to treat others. He also would always agree to take the band anywhere someone needed us. We would play for the town’s annual celebration when the other high schools in town wouldn’t play because it was summer. We played for the Fourth of July kiddie’s parade, the other high school’s homecoming parades, we played for President Reagan at the airport, and we even put together a small dixieland band for the interment of a veteran who loved dixieland music. (His widow was so pleased.) Now, however, my favorite memory is playing for the opening ceremonies of the Special Olympics in our town. I did that many times and I am so pleased that I have that memory now. I hope that Emily will have the opportunity to participate in the Special Olympics when she is older, and I hope that there are some high school kids who will play the National Anthem and Also Sprach Zarathustra (the theme to 2001: A Space Odyssey) for her.

“He gave to me a gift I know I never can repay.”

“His gentle means of sculpting souls took me years to understand.”

“His blood runs through my instrument, and his song is in my soul.”

“My life has been a poor attempt to imitate the man. I’m just a living legacy to the leader of the band.”

I hope that Mr. E. knows that every kind thing I did for my kids as a Music Teacher was inspired by him, and through that he is responsible for helping the thousands of kids that I taught. I pray that God continues to bless Mr. E. and his family, and that the love that he sent to the universe through his kindness and good works rebounds upon him a thousandfold.

Whooooo Mama! It is cold out there! Wind chills of -35 today, and it is only going to get worse. This reminds me of the winters in the mid-1990s, when it was so cold the governor closed schools for the state because the wind chills were in the -60s. When we lived in Iowa and Michigan the temperatures never got this cold. Cold, yes, but not freeze-your-snot cold. (Seriously, it’s disgusting seeing it on guys with mustaches.) We have shut our house down except the bedrooms and the kitchen/living room (which really is an eat-in kitchen without a table. We have an eat-in island so we sit there for meals. We took the table area and put a couch there and a throw rug so the girls can have a place to play while I am cooking.) The rest of the house we are heating only to the upper 50s. Basically, we are living in the kitchen right now. But, hey, we’re not complaining. We Minnesotans are pretty proud of our winter survival skills.

On a separate note, Emily has improved her skills by leaps and bounds this week. She has been babbling up a storm, and she seems to understand that “Dada” is Bob. She can find his nose, too. She has also started babbling “kiki,” which we are taking to mean “kitty.” We praise her when she says it and show her one of the three cats who are always around. AND, she can clap her hands, HOORAY!!! This is big stuff for her, and we are having big celebrations at our house. Let’s hope that it all continues!

I am really enjoying watching A Daily Show and The Colbert Report again! The first few shows of course had some minor bumps, but every show gets better and it is just nice to see them back. I love having a show for adults that I can watch after the girls are in bed. Anna always gets upset if I watch anything that isn’t child-oriented, and frankly, I don’t have time to watch t.v. while the girls are awake. I know I should be in bed at the time these shows air, but sometimes I need down time. I love to watch these shows with my parents who are the most conservative people I know. Well, actually, my dad is the most conservative person I know. He makes George Will seem moderate. (George Will has a child with Down syndrome, by the way, and he wrote a really good essay about how he is grateful for the government programs for people with developmental disabilities. I remember that I read this a long time ago because it seemed so ironic coming from him.) My mom is just a follower and takes on my dad’s views. My parents are devoted to Jay Leno. When they are at our house, we watch Stewart and Colbert. (I do this because I hope that they will get so uncomfortable that they will go to bed, but they rarely do.) They just complain and say, “I don’t get it. It isn’t funny.” So I say to them, “And there lies the generation gap.” My mom hates that because she thinks that she is the young and hip grandma. (She really isn’t.)

Speaking of t.v., the other shows I like to watch are home improvement and decorating shows, The Office, Grey’s Anatomy, and The Amazing Race. Sometimes we watch American Idol, it all depends on the season. Being a musician can make it hard to watch.

Emily’s teacher came, and it was so nice to share my frustrations with her. She was great. She really made me feel better that I am working with Emily well. She shared my concerns that Emily has been creative in her ways to get out of working. (On the plus side, she feels that Emily has “good problem solving skills.”) So, the result is that we are having the physical therapist come next week to see if she has any new ways to help Emily work on the same muscles or different ways to get her to work on standing and crawling. In the meantime, we are focusing on signing, getting in and out of a seated position, and eating more textured foods. The eating part is to help strengthen the mouth and tongue muscles to help her get ready for speech therapy down the road. I can’t tell you how valuable Emily’s teacher is to us. You know, just when I am feeling at my wit’s end, she comes in and reassures me and makes a plan for further progress. Emily is so precious to me, I am so glad to have good people who are rooting for us and helping us along the way. I’ll keep you posted on her progress.

Well, Emily’s teacher is coming to the house on Friday, and I just feel horrible! It has been over two weeks since we saw her last because of Christmas vacation. (Minnesota is one of four states that has early intervention administered by the local school districts instead of the public health dept. or another agency.) We LOVE her teacher and respect her greatly. She always leaves us with a list of things to work on during the week, so this time it was a list for two and a half weeks. She will be expecting great progress, and I feel like there was no progress, and possibly regression. We have been working on standing, so I am supposed to have Emily stand at a low chair and play with toys there. She sits on a case of pop when she gets tired. She figured out that she can push her butt out to make herself fall out of the position. She does this as soon as she gets a toy in her hand now. I end up trying to get her to stay there, but the little stinker has the whole thing figured out! She does the same thing when we work on trying to get her to crawl. I get her in a crawling position and she lurches herself forward so she can flatten herself on the floor. Then she does her other favorite trick of rolling out of that position. I am so frustrated with trying to get her to work on these things!!!!!! And then there’s the guilt. I feel so guilty that I don’t have the time to make the therapy work. I do spend time everyday, usually twice a day doing therapy and I integrate it into her play as much as possible, but I do have another child who needs attention, too. (And the other mommy chores like cleaning, cooking, etc.) I sure hope things start to click soon with the therapy, (and that her teacher doesn’t think that we haven’t been working on things!)