Pay it Forward

I am wired tonight. I haven't been wired in 10 years, but I am wide-awake tonight. I just had a conversation with a stranger on the phone. Now before you go getting all judgemental, it wasn't someone I met in an illicit chat room on-line. (I talked to that person last night.) A mother called me from Minnesota; she is the Mom of a 3-month old baby girl with Pfeiffer syndrome. And she has a cloverleaf skull.

Pfeiffer syndrome is a very rare condition. It affects about one in 250,000 babies. And a cloverleaf skull - in which the skull is formed in 3 bumps instead of round due to premature fusing of the skull sutures - is the rarest type: odds are close to one in a million that you will have a baby with a cloverleaf skull. To say there are not many of us out there is an understatement.

This Mom had been sent some pictures of Ava as a baby by a friend on our on-line support group. She then contacted me, wanting to know all the things I wanted to know about Ava when she was a baby. Would she be Ok? Would she be brain damaged? Would she survive the many surgeries she needed to endure? Would she be mentally disabled? Would we ever feel normal again?

It was funny to be on the other end of this conversation. It took me back to a time, almost 7 years ago, when my little girl fought for her life in the NICU at CT Children's Medical Center. In truth, I don't like to think about those days. They were scary and dark. Even 7 years ago, there wasn't alot of info.on cloverleaf skulls, and what was out there was just frightening. I recall one day in the NICU, Malcolm came in holding an e mail from a woman whose daughter had a cloverleaf skull, or at least had been born with one. She had had many surgeries, but was a happy little 7-year old, doing most of the things she should be doing. Her mother wrote me often during the early days...encouraging me and giving me true and honest information. I still have her emails printed and tucked away. They are very special to me and always will be. This woman, whether she knew it or not, was my lifeline. She was my hope. I still keep in touch with her and her daughter is almost 14 now.

This Mom asked me a lot of questions and we "talked shop": surgeries, craniofacial docs, brains, doc appts., home nursing, trachs, G-tubes, shunts, child development...you name it. We didn't know each other, but we knew each other very well. She was in a place where I was...she felt the things I felt and saw the things I saw. She was so happy when she saw Ava's pictures because she said she could see a future for her daughter.

Imagine that. A few pictures, a 90-minute conversation and we were friends. She said so many of the things I used to think. She said exactly what I used to think. I didn't feel the need to let her in on my neurotic way of worrying about everything and anything on earth that could be worried about when it came to Ava; she will learn soon enough.

However, I did assure her that it would get easier and better and that she would come to accept a new sense of normal. i don't think about what I do each day for Ava...I just do it. It wasn't always that way, but after nearly 7 years it is. The constant worry and the stress never go away, but I've learned to battle them (with the help of wine and Xanax). This woman said it was refreshing to talk with someone who understood her, and I couldn't have been happier to be that person.

HOW old am I????

A little piece of reality has crept up upon me: I am getting older. I can't stop it and I can't control it, it's just a fact. I remember when I was a teen thinking that a 40-something woman must be ancient. My God, she had one foot in the grave and the other on a banana peel! (Props to my friend Donna who is the first person I ever heard add the banana peel part.) My parents were in their 40's for Pete's sake and they knew nothing.


Well (insert screeching brakes sound) here I am now. It's funny, when I look in the mirror I swear a cute little twenty-something with big hair and maybe too much eyeliner winks back. When I see a photo of myself, however, it's a different story. Looking at the photos, I have aged. Not badly, but I have aged. This is never more apparent than when hanging with a younger crowd.

We spent our afternoon with some friends today who are a lot younger than us. We are at the same point in life; however, they married and had a family a lot earlier than we did. The husband and wife are ages 30 and 29, respectively, and their kids are 8 and 5. An incredibly nice family. We hung out at their house, watched sports, talked, the kids played. The age difference is not apparent (well, unless you LOOK at us). They are excited because their kids will be in college when they are in their 40s and they will be OUR AGE and free to do as they please. However, they make the point that they did not have the freedom of their younger years to make mistakes and enjoy life; they had kids young and married young. We had a LOT of fun in our twenties, married in our 30s and had kids when we were almost 40.

I don't know if there is an ideal time to do things in life. Different things work for different people. I would have been a crappy mother at age 25...was way too self-absorbed and immature. I am glad I had my 20's to explore, make a LOT of mistakes, make a lot of good decisions, and learn about the kind of person I was and wanted to be. I guess I feel like I am a better mother because I had the benefit of getting a lot "out of my system"as they call it. i don't feel like I am missing out on anything life has to offer; to use a well-worn and tired expression, "been there, done that."

I do think the one funny thing is...I really haven't changed all that much. The one thing that has changed, however, is that the party needs to be much earlier. For example, I still love to go out, drink a bunch, eat a bunch, but....I cannot rally and go out after that. It's one round of partying, max. And if the party starts at 3pm and ends at 9pm, all the better. Then I must go to bed. if I don't get enough sleep, i can do nothing the next day. This is a sharp contrast to the girl who could come in from partying at 3, go to work by 9, then do the whole thing again the next night. if I tried that now, I would die.

I stay out late sometimes - and I hate it. The next day I am USELESS...if I don't have 1 or 2 naps, the whole day is shot; and mind you, the whole day is shot anyway, because I have to sleep so much I can't do anything anyway.

Time is a funny thing...as we age, we become more confident, more content, and more in control of what we do with our free time. Trouble is, we're too tired to enjoy it...

"I Wear the Chain I Forged in Life"

My father, a fellow blogger, just wrote an excellent blog about pet peeves of his. I could write pages - volumes - about things which irritate me. The apple does not fall far from the tree. I responded to his blog with a quote from A Christmas Carol, one of my favorite books of all time: "How can I be merry when I live in a world of fools such as this?" My father retorted with another line from the classic book.

I am not sure why this book fascinates me so much. It is definitely one of my favorites, if not the best book I ever read. I read it every year at Christmas time. And I watch the 1951 version of the movie every year. I think the idea of the 3 ghosts is so clever. And I just love to read the words as they appear. They are poetic and intelligent. One must have a solid knowledge of the English language to understand the text. I know I sound like a snob, but I am not. I have read other books by Charles Dickens, even if it was under duress for school. There's something about HAVING to read a book that makes it less enjoyable. I enjoy his work, but not nearly as much as I enjoy A Christmas Carol.

I love the words he uses. I love his descriptions, and I love the fact that Scrooge is a grumpy old sot who doesn't give a hoot or holler about what anyone thinks....until he gets those visits from the Three Ghosts. I enjoy the glimpse into the life of Victorian England. (I wouldn't have lasted 10 minutes.) It seems the poor of that time, e.g. Bob Cratchit, didn't have ovens so they had to bring their roasts to the butcher or another marketplace to be cooked. We know they had a fire upon which to cook, as Mrs. Cratchit was described as being nervous about her plum pudding (she was unsure about the quantity of flour) as it steamed in the kettle. By the way I've had plum pudding and it's awful. Desserts in Victorian England were crap. (Not a quote from Dickens, by the way).

I am also intrigued with the scenes where the "laundress" and the undertaker fight over Scrooge's belongings, the ones the laundress and the housekeeper have stolen from Scrooge in death. The took the "fine shirt" off his cold, dead body ("As if calico ain't good enough for buryin") and sold it. They took down the bedcurtains "rings and all, with him lyin' there" and sold those as well. I was scared to death (no pun intended) of this part as a child, but yet found it morbidly fascinating.

I know Christmas is a ways off. But if you're looking for something to read, try A Christmas Carol. Read all the lines over and over until you get the true meaning. Realize the beauty of language and how it can convey so much. And then go have a dessert other than plum pudding.

Watch Out CCD!

Another summer is behind us. Well, it's not really, since we'll likely get a 98-degree heat wave in Sept and Oct, and fall doesn't actually start until Sept. 21. ( think). However, the whole ritual of Labor Day signals that summer is about to come to a close and autumn will soon follow. Fall is my favorite season. I love the cool, crisp air; the ability to be outside without melting in the heat; and the days coming to a close a little earlier. I like the school schedule now. I hated it as a student and as a teacher, but as a stay-at-home Mom it rocks! Most people dread winter, but as I've said before I don't mind it at all. I definitely could do without the snow and ice, but the cold and dark don't bother me one bit.

This year, along with starting first grade, Ava will embark on a new chapter - her religious education. She is scheduled to begin CCD classes at the end of September. In preparation, I have been teaching her to pray each night, and I took her to church yesterday. I've been wanting to go more often myself, so this is a good excuse to put Mass back into our weekly schedule. I have tried as best as I can to explain God to her; I haven't even attempted any of the more complex ideas, such as the Trinity, the Resurrection, or Communion.

I don't recall how I learned any of these things. They were taught to us in Catholic school, but I remember not really understanding any of it. We were just told to believe it, and that was that. Because of all Ava's been through surgically, I have tried to break down complex ideas into terms she can understand. But I am not sure how to break down religion; I am going to wait and see what the CCD teacher does. I am apparently the Assistant Teacher, since I have to stay in the room because of Ava's trach. So I might as well make myself useful.

Of course, our church visit was a typical Laura Beeler event. Ava has been to church before, but she is getting more curious. Of course, I was running late, and here in CT the 10:30 mass starts at 10:30 and not a minute after. I waited in the back of the church until everyone sat down for the readings, and then Ava and I, along with another tardy mother and kids, scrambled to an empty pew. It's a full house at our church, which is nice. There are only 2 Sun. am masses, so it gets full. We no sooner sit down when Ava gives me the potty sign. I knew it was coming..she has her tube feed an hour earlier so I knew she had to go. She wiggled around until everyone stood for the Alleluia, and then we hurried out the back door into the hallway to use the bathroom. I timed our re-entry perfectly, while everyone was still standing for the Gospel, but I forgot where we were sitting so as everyone is sitting waiting for the homily, Ava and I are wandering about looking for our seats. "HI everyone, please stare at us!" I was cursing under my breath, and then had to say a prayer of confession for thinking swear words in Church. I finally found our seats and sat down, mortified.

Ava was quite well behaved. I brought a book for her, but she was quite content to look around and listen to the music. The likes the kneeler. She wanted to stand and jump on it, so I had to put the ki-bosh on that. She tried kneeling but then decided she's rather sit. During the Our Father Ava signed potty again. (At least she's polite enough to sign instead of loudly stating what she needs, which is her usual MO.) Again she grabbed at her crotch while I waited until Communion and made a second mad dash for the bathroom. We entered as the Communion line was dwindling and I was able to get Communion and slither back to our seats. She liked the rest of the Mass, particularly passing the basket of money.

I didn't even know my church had a bathroom until i was about 14. I was standing in the Church hallway waiting for something, and a door swung open. I peered in, thinking it was an entrance to a secret crypt, but was I surprised to discover a bathroom in there! A BATHROOM? In CHURCH? How had this escaped me all these years? I am sure my parents never told us about it as they did not want to spend the entire Mass running to the bathroom with us. We either went before we left the house or suffered through the Mass, our own private little Passion.

I told Ava we'd be going to Church more often and that we'd be going to a class to learn more about God. She looked interested, but asked few questions. All I know is it will be interesting to see what Ava does with a bunch of nuns...God help me.

Welcome to the World of the Dull

Well here we are again. Saturday night and I am ready for bed. (Did I mention it's 7:30 pm?) Sometimes I feel like such a slacker. It was a beautiful day, but instead of going to the beach we decided to stay at home and hang out in the backyard. Now, I do have to say, I worked at the office until 11:30, went grocery shopping, and did a few errands, so by the timeI got home it was 1:30. Malcolm had already taken Ava to the park and for a bike ride, so the idea of staying home was fine with her. We filled her wading pool, and took out her Bouncy House, so she had plenty of amusements. Malcolm and I sat (well, for minutes in between answering requests) and chatted and enjoyed the sun and outdoors.


We are meeting some friends for dinner tomorrow evening (with Ava) and so I just wanted to hang out today. The beach involves a one-hour drive (more, if traffic is bad), paying for parking, shlepping countless items onto the beach, setting up beach spot, and then trying to keep as much sand as possible away from Ava. (Did I mention that kids with trachs really should not be near sand? She can wear a trach cap, but we still have to be hyper vigilant.) We also have to watch her carefully in the ocean, as does any parent.


I watch my friends go to the beach. They have to shlepp a ton of stuff too, but they seem to have a higher tolernace for the sand and heat than I do. And, if I was at a rental house,or hotel on the beach, I'd likely have more patience too. it just seems like so much work for so little payoff. But I do love the beach. I love swimming in the ocean and bouncing in the waves. I always did, even as a kid. I have a healthy respect for the ocean, as its waves tossed me around and washed me upon shore like an old soda can many times. I will always love the smell of the sea, the riding on the waves, and the thrill of watching a wave build and seeing if it was going to kick my butt. I love the beach.


But, as I've said many times, things are different when you are the parents of small children. My friend Debbie recently wrote a blog about vacationing with small children, and it was so true. Vacations are rarely restfull or relaxing for adults; they are really for kids, BUT they are so worth it when you see your children smile with joy. And a beach vacation is something special. Last year, we went to Myrtle Beach in SC with a bunch of craniofacial families. It was Ava's first time in the ocean and she really enjoyed it.It was kind of funny...all these kids with trachs were under umbrellas, with not one grain of sand on them, while every other kid was covered in the stuff.


We always used to get sand everywhere, and my mother diligently scrubbed us all when we got home. We knew before we went anywhere, we had to have a bath. I also recall my mother's cousins Joan and John had a summer beach house in Long Island; we'd go there at least once a summer to spend a day or two at the beach. It was very rocky...there were pebbles everywhere. But we loved it, especially because there was a playground (the old-fashioned kind where the metal slide hit 108 degrees by noon) and a man who sold Italian ice from a push-wagon. I am thinking of getting a push wagon and selling hot dogs, beer, and Italian ice from my propery next to the golf course. My husband insists I'd need a liquor license and a few other assorted permits, but he is a spoiled sport, and I bet none of the golfers would rat me out. While I know this is crazy, I would love to do it.

But I digress, as usual...I am not sure what my point was when I started...oh yes! It was that one can be content in one's life, even if one is just sitting about in one's livingroom. Whether at the beach or at home, today was one nice day!

Weekend Notes

Well it's been a busy weekend here in Beeler-ville. Friday night started out with my monthly game of Bunco. Bunco a really easy, pointless dice game that you play with a group of 12. It's usually played by housewives who will take any excuse to get out of the house and have a cocktail. ("What are we doing? Cleaning out your garage? But you're providing wine and snacks? Count me in!") Anyway the game went on for a couple of hours and then a few of us hung around in my friend's hot tub. It was fun but by the time 11:00 came around I had to go home. I've learned something: I don't like being out late at night. The spirit is willing, but the body can't take it. I am tired. Always. By 10pm my favorite place is in my bed, under the covers, watching TV.

I didn't always used to be this way. I remember my parents moaning and groaning when I went out at 10pm. I thought they were so uncool. Now I get it. They were sleepy and didn't want to stay up to wait for me to drag my skinny little teenage butt into the house. I recall my poor father driving my boyfriend home on Saturday nights because my boyfriend was too young to have a car. I am sure the last thing my Dad wanted to do was schlep some loser across Staten Island at 11 pm, but he did it. And my Mom waited for us to return.

Anyway, back to the weekend. Saturday morning I worked, while Dad took Ava to a birthday party at a gymnastics place. Ava loved it. of course she did...the kids jumped on a huge trampoline and ran around like maniacs. After I got home we took Ava mini golfing at our local place. Ava said last weekend "I want to go mini-golfing as a family." Ava has a "thing" about her family, meaning me, my husband and her. She likes it when it's just the 3 of us. She also loves big family parties, but she gets very excited when the 3 of us go somewhere "as a family." She will say "Isn't it nice to do something as a family?" It's very sweet and cute, and I am glad she enjoys this time, as someday she will want me to hide behind a potted plant so no one knows we're related. The rest of Saturday was spent in our yard, with Ava on her swings and us making a barbecue.

Today Malcolm mowed the "lawn", which actually contains some grass now as opposed to just moss and weeds. Ava played in her wading pool, her bouncy house, and swings, while I chased after her and and helped her change activities every 15 minutes. She does something for a while, then moves onto the next thing. She did enjoy the wading pool and brought her doll along to "give her a swimming lesson." Tonight we had another barbecue and Malcolm is already asleep on the couch.

Life is funny sometimes. We plan and we plan, and things don't always work out how we imagined. If I planned these two days, they would have never worked...we just went with the flow and did just enough to keep us occupied, but not too much as to make us exhausted (although the snoring from the living room leads me to believe that Malcolm may disagree). It was a nice weekend and I enjoyed myself. And the best part is i can go to bed early tonight.

Random Thoughts

Well July 4th is here. For some strange reason, there aren't many fireworks on July 4 itself here in CT. Most of them are the weekend before, the day before, the week after. Who knows why. CT has some strange laws. For example, fireworks are legal, but you can't buy alcohol on Sunday. This must date back to some Puritan code that dictated that alcohol was the Devil's Drink. I guess God was OK with explosives.


I've heard only one firecracker today, a sharp contrast to yesteryear, when the idiot who lived across from me as a child would spend the whole day and night setting them off. I learned a good many swear words from my father as he cursed this kid, who was making just a heap of noise all day. I remember as a young adult going with a boyfriend to his friend's house for July 4. This friend had a last name that just so happened to be the same as several famous Mafia members, and the boatload of illegal fireworks he assembled on July 4 was confirmation of his obvious "connections." He would start by setting off the pretty ones and then end the night basically setting the whole street on fire. I remember one year, the noise was so loud, it somehow tripped some electronic device in my boyfriend's car, and the car would not start. I have no clue how we got home, but we obviously made it.


Today was an interesting July 4. The weather was OK, which means it didn't rain continuously, as it has for the past 40 days and 40 nights. My daughter won a Perfect Attendance award at her karate class this past week, so we decided to let her pick a place she'd like to go. She chose the park with 3 playscapes and a sprinkler park. She put on her little bathing suit and played happily in the sprinkler for about 15 minutes. Then she got cold and played on the playground. We ate the picnic lunch we brought. All of a sudden she decided she wanted to go home and was being quite a brat about it. (We had been there a total of 45 minutes.) We told her that it was too nice to go home and watch TV, and she proceeded to throw a huge screaming fit. After several minutes of this we told her firmly that if we left, we were not going home, but were going to do a "Mommy and Daddy" thing instead. "I DON"T WANT TO DO A MOMMY AND DADDY THING I WANT TO GO HOME!" After threatening to take away all TV privileges for the day, she quieted down and we stopped at a local winery, since any "Mommy and Daddy thing" required a drink by that time. She behaved perfectly there, of course. The person pouring the wine even commented on how well behaved she was, and I swear that my daughter gave me the finger. Only my child would be happier at a winery than at a playground.


Next we did go home and she watched one hour of TV and then we shut it off and played in the backyard. She swung on her swing, jumped in her bouncy house and ate shrimp cocktail (she's 6, but acts like she's 40). My husband and I had a few beers and barbecued, and all was OK.

Sometimes I feel sorry for myself. My little girl has a lot of medical needs, and this sometimes interferes with her ability to either do things other kids can do easily, or just makes it harder for her; thus, it makes things harder for her parents. I know all kids have meltdowns and are uncooperative; but other parents can sit back and not worry if their child's airway will get plugged. Other parents don't need to worry if their child is screaming because they're being a normal kid, or is the shunt that diverts excess cerebral spinal fluid from her brain clogged? Most parents just feed their kid; they don't need to count calories to make sure they're eating enough to make up for a tube feeding.

And then I come out of my little pity party and watch my daughter swinging and laughing on her little swing, something she couldn't - and wouldn't- do 2 years ago. She says "Thank you, Daddy, for making my playground nice." (Daddy put down nice, soft rubber mulch under her playground last weekend.) I think of our little family of 3 and how much we all love each other. And then things are OK again. Things will never be perfect, I know that. I am just grateful life has given me the chance to realize that perfection is not necessary; what we have is wonderful. Happy July 4th everyone.