Grapes

The kids are sitting around the kitchen table finishing up the fruit portion of dinner (fruit is required at every meal here). S has had a few bites of apple, but really just wants grapes.

She lines up five grapes in front of her. Exactly five. She had four, but demanded M give her another. Loudly.

She counts the grapes, "One, two, three, four, five."

Then she talks to the grapes. Pointing to each one, she says, "First, I'm going to eat you. Then, I am going to eat you." And on down the line until she has spoken to each grape.

Then she eats one.

S starts all over, "First, I'm gonna eat you. Then, I'm gonna eat you. Then, I'm gonna eat you. Then, I'm gonna eat you."

Then she eats another one.

Repeat until there is one grape left.

S finally says to the last grape, "And now I'm gonna eat you."

She eats the last grape.

Then she looks up and smiles at all of us.

Mango Sauce

One of the many tubes invading C’s little body during his illness was a feeding tube. He had fluid support and meds through IV lines, but needed additional nutrients soon enough. I can’t remember if the feeding tube was put in at the same time as all the other tubes (that is, during the code) or later.

Regardless, it was there, and its removal, along with removal of other tubes and pieces of equipment from his room were significant steps toward and signs of recovery.

However once the feeding tube was removed, we had another issue to address: C wouldn’t eat. He simply refused.

Immediately after the tube was removed, it became apparent that C was exerting the one bit of control he had over his situation. After being poked and prodded around the clock, having painful things done to his incision from the surgery and wounds from chest tubes, and a host of other things, what he put into his mouth was the only control he had left.

The bribery started immediately, and even that didn’t work most of the time. We had food brought in from outside – just about anything, including McDonald’s – but he’d take one, maybe two bites and stop.

We had Child/Life Services get involved. Their staff came down to talk to him about how choosing to eat was choosing to recover, and things like that, but it didn’t work.

His eating finally became an issue in release plans. The staff did not want to release him until he was eating normally, or close to it. Even this barely had an effect. We dangled home in front of him and it was maybe two bites from the food service tray – not quite enough to satisfy the PICU staff.

The more eating became an issue for the people around him, the more C dug in his heels.

Finally, the PICU staff agreed to let him go home, with a promise from him (not fully given, but implied) that he would eat at home.

On the first day at home, C continued to pick at his food. I was stressed – so happy to have him home, but scared to have him there at the same time, without the 24-hour medical support – and C still had a PIC line in his arm for some continuing IV meds. I really tried not to react too much about it in front of C, but I am sure it was apparent. It felt like feeding him was the only thing I could do competently, but his non-eating made me feel like I couldn't support him in the right way.

As I think about it now – and even as I thought about it then – I understand C’s need to have some control over his situation. I’ve reacted similarly in stressful situations. Yet I was also at once frustrated by his inability to see the bigger picture (his overall health) and impressed by his determination – though perhaps I would have liked to see that determination applied differently.

About a day and a half after he arrived home, he said he’s eat if we had some mango sauce from Trader Joe’s (it's like apple sauce, but made with mangoes). There was no Trader Joe’s near us at the time, so buying Mango Sauce had long been a special treat I’d pick up if I was near one. I immediately called my sister-in-law, who was scheduled to come for a visit with her kids later that afternoon, and asked her to please pick up a jar or two from the Trader Joe’s near them. She arrived with five jars, I believe.

And C ate.

C ate all the mango sauce over the next couple of days and continued to eat. We’d broken through the barrier.

We now have a Trader Joe’s near us and every time I go to pick up dried fruit or nuts or some other treat, I see the jars of Mango Sauce. Sometimes I buy a jar or two. It’s another one of those day-to-day reminders of how lucky we are to have healthy, strong, growing kids.

I asked C once recently if he remembered all that, the not eating and then only eating mango sauce for a while. He doesn’t. But he still loves mango sauce.

Adventures in Potty Training

(Also Known As, A Post in Which I Thoroughly Embarrass My Older Children)

Apparently we are potty training in earnest at our house now. S went to school today in underwear – and with four complete changes of clothes.

I have no idea if it will all click just yet. I feel fairly relaxed about it; I don’t care if she comes home in diapers and I’m not worried about giving her mixed messages - she’s going to figure this out at her own pace no matter what I do, so there’s no point in getting into a power struggle. We have some incentives for her, and when she is ready to work toward them, she will.

But S being to this point reminds me about how C and M potty trained. They were very different.

When C was thee years and not quite two months old (and I was pregnant with M), I had taken to asking him if he wanted diapers or underwear each morning. One morning he said, much to my surprise, “If I had baseball underpants, I’d wear underpants.”

Well, then.

I searched high and low that day for baseball underwear, but there were none to be found. None. I think I went to five stores and called several more. Nothing.

The next morning, I didn’t ask. But C said, as I tried to put on his diaper, “I don’t wear diapers anymore, I wear underpants.” Huh.

So I took him to school in underwear, with changes of clothes.

C had several accidents that day, a few less each of the following days, and we pretty well day trained within a week.

About a week or so after all of that, we had a trip north scheduled that included a plane ride. I was nervous about that part, but he did fine. Once at our destination, I was near a mall and looked in one last store for baseball underwear. Lo and behold, this company carried baseball underwear, though they had none in C’s size. They called around for me and located two packages in a store some distance away, but in the direction we were headed. We had them put on hold and promptly drove there, making ourselves late for our evening plans.

Once the baseball underwear were purchased, C had to be restrained from stripping right there in the store to put them on. Once we were back to the rental car in the parking lot we let him change, however, and he was so proud of his new baseball underwear. It was rather sweet.

I don’t remember too many accidents with C, but I am sure he had them. But overall, that was about it for him.

M’s potty training, however, shocked me. I just didn’t expect it.

When M was about a month shy of his third birthday, he asked to wear underwear over his diaper. I resisted and finally said that he could wear underwear or diapers, but not both. He opted for underwear. I chuckled, thinking he was no where near ready and this would last maybe 10 minutes, but said okay. I don’t think we’d even practiced having him pee in the potty at this point.

I took M to school that day with several changes of clothes and told his teachers that I fully expected him to come home in diapers. I was amazed when I picked him up at the end of the day wearing the very same underwear and clothing I’d dropped him off in.

Over the next week or so, M had maybe two accidents. We made him a chart that first night to track his progress and said that if he had seven days without an accident we’d get him this specific fire truck. Eight days later we went to buy the truck. And that was it. M is one determined boy.

My experience with my boys definitely taught me to not get too worked up about certain things, and potty training is among them.

Today at lunch I went out to a nearby mall to pick up extra sweatpants and leggings for S (surprisingly difficult to find when it's technically spring outside) and her first day’s incentive (pink socks, her request). When I arrived home tonight, I praised her efforts, reassured her that accidents do happen, and encouraged her to keep trying.

Then I gave her the pink ("pinky!") socks. S jumped around the family room, still in underwear, shouting, "Yippee! Yippee!"

How to Make a Mom (and Dad) Cry?

I just walked into my office and set down my things after a nasty commute when my husband calls.

“I’m in the PICU,” he says, as my heart skips a beat, “delivering the mobile. I’m with HP. Do you want to say hello?"

HP, one of C’s main nurses. A dear, skilled nurse. One of the “How Can We?” team.

Of course I want to talk to HP.

We chat just for a moment. She loves the photo of C that we included, thanks us for the mobile, says she thinks of us whenever she looks up at the mobiles in the PICU rooms, asks how the baby (S) is, says her oldest is going off to college next year, and, oh, how it goes so quickly.

I thank her again, of course, for everything. My eyes are welling and I can hardly get the words out while I try to retain composure.

We say goodbye.

HP passes the phone back to my husband, and I say, lightly, “Way to get me to cry first thing in the morning!”

My husband says, “Me, too.”

Do You Feel Lucky?

After being verbose for a while there I am feeling decidedly quieter and reserved this last day or two. For no particular reason. Perhaps it's the dreary sky and rain we've had with this nor'easter and I'll perk up again soon.

We live on a small lane with four houses. The top of a tree on one neighbor's lot broke off in the storm last night, falling right across the road and taking out our cable and phone line - and blocking egress from the other three houses. In a shocking turn of events, the cable company responded promptly to our call and the cable line (and, most importantly, Internet access) is now repaired. The phone company thinks tomorrow, if we're lucky, for their line.

Happy Birthday, S!

Dear, sweet S,

Today you are 3 years old. You are also, in your words, a big girl now.

But not too big. Please, not too big. Yet.

I look at you and your brothers some days and can’t believe my luck. Three healthy, strong, smart children. Or you could say, as in Lake Wobegon, above average. In my thoroughly unbiased opinion, of course.

I thought I knew what I was getting into when you were born. After all, I already had two kids. I was wrong. You have surprised me so often as you have made your unique self known to me and to your father and brothers and to family and friends.

I’ve gone to great lengths not to overdo it on “girl” stuff in this house, yet sometimes it seems to me that you find ways to show me how much of a girl you are. For example, you put your stuffed animals to bed like babies (though you tuck trains in right next to them), you twirl…things your brothers just never, never did. It’s different, but it’s fun and exciting different so far.

I joke about you, that as a younger sister to two brothers, you are no shrinking violet. You get right into it with them. You tease them and goad them. But you have the act down well, you do. You can cry real tears in an instant at any insult, real (rare) or perceived (more likely). Then you know just when to turn the mischief into real affection and offer the boys hugs or the occasional kiss. I love watching you with them.

Some other things I love about you:

• Your belly, and how ticklish you are.

• Your grumpy face. When you drop your chin to your chest, push out your bottom lip, and furrow your brow. And how I can make you laugh by doing that face right back at you.

• How, at bedtime, you put a hand on each of my cheeks and squeeze and say, “I want you, Mommy.”

• Your hair in pigtails, when you let me.

• How you ask for “Friday eggs” for breakfast. Or “choclik” on toast (also known as Nutella).

• How your favorite colors are pink and purple and no one else in the family is allowed to have them as favorites.

• The way you curl into my lap for reading books.

• That you love baseball. With all this early practice, you may well be a better player than either of your brothers. Try not to rub that in to C, ‘k?

• How much you love Dora (and her friends). Most of the time I love that anyway. Swipper not so much.

• The way, when your daddy comes home, you shout, “Yeah! My daddy’s home!” Your daddy, by the way, lives for that moment.

• How you must be the leader to the car at least once a day.

• The way you always ask to give our cat, Mr. S, a treat.

• The way you scream for your daddy when things get a little tough with me, discipline-wise. Okay, maybe I don’t love that, but I respect where you are coming from. I tried the same thing when I was your age.

• The way you like to sing, especially the ABC song.

• How you dance and twirl.

• The way you try to get out of finishing your dinner by leaning over, putting your arms around M, closing your eyes and sighing.

• The way you say “I love you, too, Mommy.” Gets me every time.

That’s just a sampling. I could go on and on. And on.

As I write this, I realize I never wrote your birth story or your first birthday letter, things I did for each of your brothers. I couldn’t write personal things for a very long time, and you birth and first two years was right in the midst of that. I hope you will forgive me. It was no slight to you, I promise. As the third child in my family, I’ve always promised I wouldn’t let important things like photos and baby books and memories of my third child fall by the wayside, and, really, they haven’t. It’s just the writing. I do know that it will be important years from now for you to have those writings like your brothers do. I think writing here will help me get to writing those bits, and sooner rather than later.

But first, tonight, we’ll have your cake with blackberries and strawberries. And there will be three big girl candles on it for you to blow out.

Today, on your third birthday, I see a bright and inquisitive and mischievous and rough-and-tumble and gentle and strong-willed and loving little girl. I hope you’ll continue to be all those things.

I love you, S.

Ms. A

While walking out of the building after dropping S off at school, I saw C’s first grade teacher, Ms. A. She was his teacher the year he was sick.

I almost walked by. I see her every couple of months, and we’re always friendly, but I also recognize that often she is rushing to be ready for her teaching day and I don’t want to slow her down. Today she was collating some papers in the building office.

After taking one or two steps past the office door, I decided no, today was a day to stop and say hello.

Ms. A is a great teacher. She is warm and smart and experienced. Each school year she somehow is able to learn – quickly – about the individual needs and quirks of the kids in her class and begin addressing them almost immediately. She works equally well with parents, parent volunteers, other teachers, and school support staff. When parents receive the letter assigning their child to Ms. A, they rejoice. C loved her.

When C became sick, Ms. A was wonderful. She was scared for C and for us, but supportive and helpful, too. I don’t quite remember the sequence of events that led me to just call her directly and not go through the school office (C had been out a couple days before he crashed), but every time I did call, she dropped everything, had whatever volunteer or support staff was in the classroom at the time take over, and took my call. (Thinking back on it, the mother of one of C’s classmates may have had something to do with it. AW was in the ER in the first hospital in a learning capacity when C arrived by ambulance from the pediatrician’s office.)

Quickly, Ms. A organized the class to make cards for C. And on C’s second full day in the PICU, she asked to visit, bringing the cards along. It was about 7 or 8 in the evening when she arrived, I think. I remember the look on her face when she was buzzed through the PICU doors, and when she saw C through the glass doors of his room for the first time. She was shocked by what she saw.

I approached her and thanked her for coming. She gave me a hug. I asked if she’d ever seen a child this sick before, and she said no. I told her she didn’t have to go into his room. Being here was enough, and we’d do everything we could to let C know she was here. She took a deep breath, and said she’d like to go in if she could.

Ms. A donned the universal precautions required of everyone at that point: gown, mask, gloves (though by this point he’d already had enough meds that risk was minimal in either direction), and I introduced her to C’s nurse. I then stepped out of the room, and watched.

She just talked to him. She stood near him, held his hand, and talked to him.

After about 15 minutes, she came out of the room, and she gave me another hug. I promised to keep her updated on C’s progress. And then she had to go.

The next day at school, Ms. A organized the class into sending C a big bunch of balloons. She skillfully talked to them about a classmate being very sick without scaring them, and each child brought in a dollar or two to contribute. We still have those deflated balloons in that box I found last week.

Over the next several weeks, Ms. A cheered his progress and helped us plan for a smooth return back to school. She saved some work for him to catch up on, and, once he was home, arranged for a tutor, and other little details. She suggested I get C an email account so the class could send him email during his recovery. It was a great way for C to start to feel connected again.

When it was time for C to come back into the classroom after seven weeks, she arranged a visiting day before he started back (half-days for a couple of weeks) so that everyone could get the nervousness out of the way. Upon arrival that afternoon, she let all the kids say hello for about ten seconds before starting them in on an activity, including C. This was just the right way to handle it – making C a regular part of the class again was just what C and his classmates needed.

I thanked her frequently that spring and since, and knit her a seaman’s scarf (Interweave Knits, Fall 1998) so she could be literally wrapped in our thanks. Years pass and I still feel so much gratitude for her strength during that time. It continues to mean so much to us.

Standing there in the office today, I told her this. She gave me a hug, we chatted for a few moments, and then it was on with our respective days.

The Cat Falls In Love with the Gum

Today at the grocery store, I bought a pack of gum. Dentyne Ice in Cool Frost. It was kind of an impulse buy – I succumbed to the intent of the product placement, you might say – but was thinking perhaps chewing gum could help curb my snacking habit.

Once in the car, I opened the pack and started chewing a piece. The rest went in my purse.

Upon arrival home, the grocery bags made it in from the car, and I dropped my purse on the kitchen floor while I stowed away the strawberries and other goodies.

About 20 minutes later while sitting at the kitchen table, I noticed my elderly cat, Mr. S., with his head stuck in my purse. I tried to shoo him away from where I was sitting, but he would not budge. I stood and walked closer to him; he pulled his head out of my bag, but wouldn’t move otherwise.

Mr. S then started purring insistently, nudging my purse with his head. Repeatedly.

Immediately I considered the gum. This 17-year-old cat has never been remotely interested in my purse before, so why now? It’s the only thing that’s new in there. I took the gum out and set it on the floor to see what he would do, then S distracted me and soon I was settling her down for a nap upstairs.

I came downstairs later to find Mr. S in the dining room, lying in the sun, purring, and nudging and gnawing at the pack of gum.

I have no idea what makes the gum so attractive to him. I’ve taken it away for now because I don’t want him to be inadvertently harmed by some ingredient.

But now he’s walking around, meowing plaintively for his new love.

Pre-Breakfast Omens?

All I did was go down to the basement to water the seedlings we have going. I didn't notice anything on the floor.

But a container of deck prep from the last time we painted the porch has started leaking and there was some fluid on the floor. I stepped in it of course.

I didn't realize it until I noticed the throw rug in the kitchen with some bleached out areas on it that curiously resemble the tread of my slippers.

Then I noticed a little spot on the rug in the family room. My favorite rug in the whole house.

I've ruined two rugs and I haven't even finished my coffee yet.

Real Life, Home Opener, Something That Makes Me Laugh, and Bunny Breads

With all these "uplifting" bits I am writing, you might get the impression that I dwell on what happened to C in my day-to-day life. I don't. Truly. My real life is far too busy and full to do that. While we do have moments that reflect or refer to that time that he was so sick, there's plenty else to deal with, worry about, manage, enjoy.

This blog has been good for processing what has been bouncing around in the back of my head. I think I am more even in everyday life because of it. At least I hope so. Feelings and memories need and needed to be processed so that they don't take over.

That said, there probably will be more about what happened to him over the next couple of weeks. Then, hopefully, it will taper off.

My life is good. I am well aware of that, and thankful for it.

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Today is the home opener. C had a bit of a melt-down last night that I finally tracked down to jealousy. Turns out there is a boy in his class who won't be in today because that boy is going to the home opener with his father. This family apparently has season tickets inherited from the boys grandfather. Sigh.

At any rate, the home team enters this home opener 3 and 3. The pitching has been decent overall, but the bats are a little dormant. Sunday night's game in Texas was a bit of a nail-biter in the 8th - until our loved closer came in and got the team out of a jam (two on, one out) with five smokin' pitches. Then he completely shut down the other teams' bats in the bottom of the 9th. Yes, this closer wants to be a starter, but my-oh-my, he's a good closer.

(As of last season this closer would exit the bullpen and walk to the mound to "Wild Thing." I wonder if he'll have the same music this season.)

I'm looking forward to checking the score between meetings.

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If you have a sense of humor about religion, go to this link and watch the clips:

Mr. Deity

If you don't have a sense of humor about religion, don't go there! Really, save yourself the aggravation.

I, however, laugh heartily with each new episode.

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I wrote about spring baking season and bunny breads a couple of weeks ago.This is what bunny breads look like:

April 9, 2003

While April 8th is C’s “bad day” (as he doesn't remember much past that day), April 9th was the worst for me.

We’d made it to morning light after an awful overnight. After getting C transferred from the suburban hospital into the urban PICU, we had been trying to use this special pressurized mask with C to get him good oxygen, but it was very uncomfortable for him and he actively fought it. No one had slept.

Sometime around morning rounds, maybe earlier, a portable xray was brought in to take another film of his chest. Immediately after seeing the film, the attending physician came to get us. He needed to speak to us, and he looked grim.

He showed us the films. Fluid had been building up in C’s left chest cavity, his trachea was deviated from the build up, the pneumonia was spreading, and his little body was getting very tired. His oxygenation wasn’t good. Dr. F said he thought C needed to be intubated.

I remember feeling hollow inside. My husband sucked in a breath and bent over at the waist, his face in his hands.

I looked at the doctor and could see that we really had to do this.

I don’t remember the next few minutes. I do remember going in to kiss C and tell him how much I loved him and say I would be right next door and what a great job he was doing. My husband was going to stay with him.

At some point some phone calls were made or received or something. Someone was on their way to sit with us.

I don’t know how long I sat in the empty PICU room next to C’s, hearing activity and shaking.

I remember the all-hospital pages starting and my husband coming in to the empty room with me and he was crying.

At once I understood what was going on and didn’t want to believe what was going on. Every breath was a desperate gasp of air yet I had no idea how I kept breathing. I was trying to break the boundary of a nightmare and couldn't.

I begged God, and all our relatives who have passed to send him back, it’s not his time yet.

Then our friend H was there and we were crying and my husband and I were holding onto each other and H had her hand on my back and the all-hospital pages kept going.

Then one of the nurses brought a person I didn’t know into the room. The nurse introduced her as M, one of the pastoral care counselors. My husband looked up and said, “Yes, I know M,” and the look on M’s face was one of horror. My husband knew M from his own work at the hospital; she often is brought in to talk with families when things aren’t going well.

At some point, my brother-in-law arrived (M had gone to stay at their house the night before), not yet understanding what was happening, and I remember my husband holding on to him and crying.

I bargained with God. I'll get him a dog, I'll take him LegoLand, I'll do anything, I pleaded.

My husband had to get in touch with his office. The head of his division called, and my husband said to him, “Oh, J, we’re in deep trouble here,” and he could barely get out the words to tell him why.

Time passed, I don’t know how much, and we just kept holding on to each other.

At some point, Dr. G was able to stabilize C. The fellow came in to talk to us to tell us that C was in very critical condition and there were no guarantees but that they were doing everything they could.

We went in to see C. There were fourteen tubes going in and out of his body, and a high-pressure ventilator making a ton of noise. There were two nurses (D and J) very busy tuning everything every second but making time to tell us that we were always welcome to be there with him. I was scared to be in there, and I was scared to touch C. There was blood on the floor.

Time continued to pass and I continued to breath even though I wasn’t sure how all that was possible.

Then there were more people there, I think. More phone calls had been made. One of the nurses moved a pull-out chair into a room near C’s so perhaps I could sleep. I laid down, but sleep wasn’t possible. I remember being encouraged to eat but every bite was a battle. How could I eat when my baby boy was barely alive next door? I remember thinking I should try to talk to these people around me but every effort seemed stupid because I just wanted to burst out of my body and scream and turn back time.

My memories of that day continue like this, in snippets of fear. I don’t know how they link together. People came, people went. Colleagues of my husband, family, friends. Doctors, nurses, other hospital staff. Phone calls. Coffee.

At some point later in the day, I remember asking if there was someplace I could take a shower.

I wanted to wash it all away.

Easter

Sometimes it’s hard to wind down after especially busy days. In my case, especially busy several days in a row.

Thinking back to Friday morning feels like a week or more ago. After C’s appointment, we spent part of the afternoon with friends, then C and M had (much-needed) haircuts. S was quite melty during the early evening while I was trying to get dinner on the table AND make another batch of bunny breads. She was too tired to wind down easily for bedtime and was awake quite late. Once she finally was asleep, my husband and I spent the little time remaining of the evening folding laundry. Oh, so romantic.

Saturday was filled with errands, cleaning the house, making more bunny breads (the kids devour them), squeezing in some exercise, making dessert for Easter dinner, dyeing eggs, dinner again, more cleaning up.

C was scheduled to sing at the early service at church so we were all up earlier than usual. I pulled a typical Mommy thing and realized I had no clue what I was going to wear to church. I'd made sure the kids and my husband had appropriately spring-like items to wear, but hadn't thought a stitch about myself. Our church doesn't go all out in dressing up for Easter, but we do put a little more effort into things. I dug through the back of my closet and found a dress I don't think I have worn since 1995. Seriously. I wore it to my husband's medical school graduation (just found some of those photos while unpacking the loft last week) - and became pregnant with C just about a month later. Twelve years and three babies later, I was kind of shocked I still had it, much less that it actually fit. Yeah, I can be a bit of a pack rat.

Attending the early Easter service meant we were done early, too. We were able to chill out a while at home before I started in on Easter dinner. C planned an egg hunt for his siblings and cousins, S took a nap, M read a book. Family arrived.

And suddenly the afternoon and early evening were gone.

My husband’s brother’s family left a few hours ago. I’d made ham, asparagus with vinaigrette, potatoes and sweet potatoes au gratin, and a pink grapefruit tart. They brought a spinach salad. It was a very full afternoon, both in terms of our bellies, and general activity.

It was good to be busy today. April 8 is C's "bad day." The busy-ness distracted me from thinking about it, and I think it distracted C, too. I think that reaching this day brings me over the hump in anxiety over the anniversary of his illness.

But now that it's quiet in the house, I am thinking about it. I am physically tired but my mind won't stop.

Four years ago, Easter was about a week and a half into his hospitalization. C had made it through the worst and was going to recover. Some friends brought us Easter dinner and we ate it just outside the PICU doors in the family waiting room. My brother-in-law even snuck in some wine. The rector of our church, who had visited us often, had suggested to me that we must feel like we were living our own family resurrection. We did, but we'd dared not say it.

Lingering Effects

C had his annual physical today. He’s tall (4 ft, 11 ¾ inches), skinny (80 pounds), and healthy. Playing the French horn has been great exercise for his lungs and his asthma is currently under control.

He asked before we left the house if he had to have any shots. I said no. But when we arrived I was told there was a vaccination to be had: meningococcal vaccine.

Upon hearing this, C’s face changed completely. He had been in a decent mood, but that was gone in an instant. He drew his long bangs over his eyes and I could just see that he was struggling to hold in a tear. Then he accused me of lying to him. He was angry.

C dislikes the doctor’s office in general – and hates shots. And I really mean hates them. M dislikes them but understands that he needs them, and somehow manages. But C...well, when he gets his flu shot, it takes one or two nurses plus me to hold him while he actively fights us as the doctor administers the shot.

C, understandably, hates anything remotely invasive since his illness. A prick on he finder for a lead test is a battle. If he knows there is a vaccination coming, or a shot of any kind (Novocain for a filling, for example), his anxiety level shoots up. We really have to work to manage him through these experiences, and it’s emotionally exhausting for all involved.

We don’t lie to him about needing these pricks and pokes. I’d rather have the opportunity to talk to him about why we do these things, discuss ways we can get through them and then help him through than lie to him and later ambush him with the reality. I didn’t lie to him today; I didn’t know there was going to be a shot.

With these aversions, I worry about C being able to manage his own health care as he gets older. Maybe it’s premature, and sure, we have a few years of being the responsible parties in this area, but I still worry. Will his aversions and fears compel him to avoid routine medical care?

C also has difficult reactions to certain noises. The fire alarm at school really freaks him out. While I see the obvious connection between his aversion to pricks and pokes to when he was constantly poked and prodded when sick, the noise thing is more interesting. It seems like to comes from a deeper well of fear.

C remembers almost nothing about the hospital. The time when there were the most noises in his room was during the time he was unconscious and/or heavily sedated. His fear of certain noises seems to come from this time. By the time he was becoming alert, the noisiest machines – ones that made noises I could compare to fire alarms - had been or were being removed.

When C is anxious or stressed, we have a little relaxation technique we use – I used it to help him relax for bedtime long before he became sick: we go for a walk on the beach together. I tell him to close his eyes and imagine we are walking along the beach together. It’s very hot, the sky is bright blue with a few passing wispy clouds. We’re walking at the water line, slowly, looking for beach glass among the pebbles the tide has brought in. The cold water is lapping at our ankles and the contrast of the temperature of the water to the temperature of the air is striking. We look for boats out on the bay, and feel the motion of the current and the waves.

Today, at his appointment, we took our walk on the beach. C still hyperventilated a bit and buried his head in my hands, but we got through the shot. Overall, this was in improvement from the last shot he had, but it was still hard, for both of us.

The Window

I remember looking out the window of the PICU room, six stories above a busy downtown street, watching the people walk by, skirting the peripheries of life and death dramas, oblivious to them.

I remember wishing I could be one of them again.

Every time I drive to or by the hospital now, I look up at the window that was C’s room, and I remember that moment and that feeling.

And I say a little prayer for the drama that is happening there now.

Legal Drinking Age

I met my husband 21 years ago today.

(Neither of us were at the time. )

Grin with me, won't you?

I Am the Easter Bunny

I’ve never hidden the fact that I am the Easter Bunny in this house. The kids know that it is me who purchases the little trinkets in the baskets at their places on the table on Easter morning.

This year, I sunk to a new low, however, and put the baskets on the dining room table last week and started putting things in. There’s a basket for each of the kids and one for my husband. The kids walk by daily to see if there is anything new.

Last Friday M asked where my Easter basket was. I told him I didn’t have one, that I didn’t need one. That I enjoyed doing the baskets for each of them and their dad, and that was enough. I mean that.

This did not sit well with M, however. He started to ask where we had other baskets. I said I didn’t know. The truth was I would have had to stop and think about it and I was pretty focused on some cleaning at that moment (a fairly uncommon event, mind you).

M went searching around the house, and soon was rummaging around in the basement. A few minutes later, there was another basket on the dining room table, and in it was just one item: a sheep made out of clothes pins, a piece of paper and some cotton balls. M had made it for me at his afterschool program.

So Much For That

Opening day was yesterday.

Much excitement in the air.

Much hope.

The first inning was promising.

But the rest of the game, not so much.

Sigh.

Sigh, again.

Let’s just see what wonderboy can do tomorrow night.

And the 103.11 million dollar man and the knuckleballer after that.

Expect the Unexpected

Over the last two and a half years my husband has been slowly building (in his “ample” spare time) a built-in in our study. Yeah, two and a half years. His work on it is almost done. Done enough that we can start putting things away at any rate.

Last night we finally started unpacking some (well, many) home office boxes that were stashed up in the loft. We opened up boxes of family photo albums, kids’ artwork, loved novels, general paperwork, knickknacks, and more.

I thought I mostly knew what was in each of the boxes, but one box surprised me. It was a box I hadn’t intended to open just yet, and especially not now. It was a box of items related to C’s illness. Among other things, I found:

• Notes from various people, including a note from the PICU fellow, to whom we had sent a small gift after C came home. In it she thanks us for the gift, and thanks us for the opportunity to learn from C and his case.
  
• Pictures from the PICU. Someone had suggested that a take just a few pictures during the process because C might want/need to see them one day. They are extremely difficult to look at, even though I agree that it was in important thing to do.
  
• Cards from C’s 1st grade classmates. Words and drawings from 6 and 7 year old hands who probably did not understand how dire a situation it was.
  
• My notebook from the stay in the PICU with scribbles about the staff that was treating him, who needed to be called, lists of things we needed to remember about life outside the hospital (who was feeding the cats?), and some writing I did in the midst of it.

Early in the crisis – probably within about a day - my husband and I figured out something of a schedule to keep one of us with C at all times. We alternated sleep and awake times, overlapping mostly mid-day and early evening. I would sleep about 7PM to midnight, he would sleep midnight to 6AM, I would sleep 6AM until about 10 or 11AM, and he would sleep about 2PM to 5PM. We’d usually have a visit with M around dinnertime.

Although it was hard to sleep at all the first couple of days, we quickly were exhausted, emotionally and physically, and sleep was welcome, especially when we knew that the other was with our boy.

This schedule meant that he, the one with the medical knowledge, would be up and about while the PICU team was rounding in the morning. He knew what questions to ask, and it was easier for the staff to talk to him. They could speak their language.

It also meant that I was the one up during the wee hours. I didn’t mind that. It was quieter. Even with the beeps of the ventilator and other equipment, it was quieter.

I spent the time reading to C, talking with whatever nurse was on duty, or whatever friend was there with us that night. Sometimes I flipped in vain through the TV channels looking for something, anything to watch. Sometimes I just held C’s hand and looked at him.

I also wrote. Whatever came into my head, I would write.

When I found this notebook last night, it disarmed me. I knew it was up in the loft, in a box, but I didn’t expect to see it. I figured I’d find it later, read it when I was really ready, maybe even transcribe a bit of it here.

The notebook was at the top of the box. A plain white binder. I didn’t realize at first what it all was – we have plenty of other white binders in other boxes. I opened the notebook, and a glance at the words brought so much of the raw emotion flooding back.

It was already too late to close it up and forget about it until another day.

So I looked through the box. The notes, the cards, the pictures.

It was just an hour after I’d kissed that same boy goodnight. On his 11th birthday. After he’d said thank you to me for a great birthday.

One More Day to Opening Day

With one more day to opening day, I am reminded of two favorite moments from the 2006 season.

The first – arguably my favorite moment of the season – was the day our home town team played their arch rivals for the first time.

Over the winter, management traded away a key player – a catcher. This catcher was experienced at catching our knuckleballer. Management’s plan was to bring a younger, less expensive catcher into the role and groom him. The plan didn’t work out so well. The young catcher, talented as he was, was struggling.

The day of this game (also the day a formerly loved player returned to the park for the first time wearing – gag – pinstripes), a deal was made. The young catcher was to go out west, the experienced catcher was to come back home. The only question was, would he make it in time for the game? The knuckleballer was set to pitch regardless of who was catching.

News stations were abuzz. As game time approached, there were live feeds from the park and from the airport. Twenty minutes before the first pitch, a private plane landed. A state police SUV pulled up to the plane, the catcher stepped in, and the whole region held its breath. A news helicopter followed the SUV’s drive to the park.

Eleven minutes later, that SUV pulled up to the park. The catcher stepped out of the vehicle, already in uniform (the catcher changed in the back of the SUV during the fast ride), ran into the clubhouse, put on his shoes, said bare hellos to his teammates, and ran to the field to catch the first pitch.

To make the moment even better, our boys won that night.

My second favorite moment is more about our family, but it happened in the context of baseball.

My husband acquired two tickets to a Sunday game through work. He ended up taking M. Before they left, I perused the team store Web site, thinking it was about time S had a team hat of her own. I asked my husband, as they were leaving, “Would you mind going into the team store for me?”

My husband replied, indignantly, “I hate that store. It’s so crowded and people are so rude!”

Me: “It’s for S.”

Him: “Oh, okay, what do you want?”

And S got her pink floral team hat.

My, how the balance of power has shifted in our house.

Happy Birthday, C!

C turns 11 today – or rather he did, just after midnight. I spent most of March 31, 1996 in labor, and had he not had such a big head (seriously, it was off the charts) he might have been born before midnight.

April 1, I decided long ago, is a great birthday. Everyone remembers it! Seriously, people will send us notes or email or call today saying, “I always remember today is his birthday. How are all of you?”

C and I have a little thing we do. We lie down next to each other on the floor and put one leg straight up in the air, comparing lengths. Then we compare arm length. It is downright scary to see how tall he has become. His foot is close to my ankle and his arm is just a finger shorter than mine.

He’s been growing his hair long the last few months. It’s a little scraggly at the moment and needs a trim, but it really suits him. I can see he’s going to be a handsome young man. I dread the first phone calls from girls. It may be a year or two away, but it’s going to feel like five minutes from now to me.

C’s birthday will forever be tied up with memories of his illness. This is bittersweet for me. While I would change history if I could so he wouldn’t have to go through that, I recognize that I can’t, and if having him here with me today means that he had to be sick in that way, then I have to accept it. The most important thing is that he is here and strong and healthy, as are his siblings and father and the rest of our family.

C is truly one of my favorite people in the whole world. We have our moments, and mothers and sons do, but he’s really a good kid. He’s a great big brother, a good friend, a nice guy. Like I was telling him late last night, his birth day was one of the happiest days of my life. He and his dad and siblings are the best things that ever happened to me.

Thank you, C, for being my son.