Wednesday, December 26, 2012

Boxing day

Wherein no boxing or cleaning took place at all. We spent the day sledding on slush, playing with new toys / games and generally enjoying be together with no place to have to go. We went to bull run to see the light show and hit the cracker barrel on the way home. There was something there for each of the boys to enjoy as we waited for our food.



And Andrew.

Sometimes I am struck with alarm at hold old Andrew seems to be and how quickly he has moved on from being a very little boy, but tonight as he exclaimed over the lights display and played with toys in the general store and listened intently to The Secret Garden recording that he really is quite young and sweet and innocent. Will just impresses me with his recall of the lyrics to any Christmas song (he knew the 12 Days of Christmas for goodness sakes), and Porter with how affectionate and loving he is, and the degree to which he still insists on being naked at home.

It was a late night tonight but we loved it.

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Friday, December 07, 2012

I want to believe

"So some guy is going to dress up and pretend to be someone who doesn't even exist?"
--Andrew, upon hearing that Santa was coming to the ward Christmas party.

Will tried to clarify that "that guy isn't really Santa, but Santa is real!"

He doesn't look like he's too big for Santa!

Porter just protested against all who failed to include "Claus" when they said Santa. He had fun decorating cupcakes and I think the individual baggies of frosting were genius.

I never believed in Santa but I pretended to. I hope Andrew can be careful not to shatter will's Christmas magic too soon.

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Thursday, December 06, 2012

50 percent; 85 percent; 100 percent

We are 50 percent ready for Christmas. Not shown in these shots are the many many boxes all over the floor. We could

only hang as many ornaments as hangers available. Hardly any.

I am most proud of my entry way.
Do you like the rug? Not exactly as I thought (online purchase). But I never mail things back.

We had FHE and played UNO tonight. We are around 50 percent on FHE diligence, but my goal is to improve that.

Finally, I am halfway through this pregnancy.

This little boy is 85 percent better and currently 100 percent off tube feeds. He also gained two pounds and grew half and inch over the last 8 weeks.

And this baby is 100 percent GIRL! All doubt removed at today's ultrasound.

Notice how flexible she is. And she has Will's upturned nose. So cute! Those are her little legs curled over her and crossed in such a lady like way.

I'm enroll ing her in gymnastics as soon as she's recovered from her birth.

We are 100 percent ready for a little girl in this family!

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Tuesday, December 04, 2012

Halloween 2012

The boys bought their Halloween costumes during a Costco trip in August on the eve of our departure for the beach. I have finally learned that I really do need to do things months and months in advance because I always run out of time in the end. I also was a pushover for buying these costumes because I was so happy that they still are young enough to want to be superheroes. I don't push costume themes with the boys, but I liked that they all wanted to be the same sort of thing.

About to head out!

"The Mom Stays in the Picture"

Porter had incredible stamina that night. He and I did return home a bit earlier than the boys but he held strong for a good hour. This was the first year Andrew and Will stayed out that long, too. It was really fun.

Pit stop of the Murrays' for drinks. We nearly didn't make it out of there.

The spoils.

Porter was really digging the candy.

At the ward Halloween party, during which Will discovered the joy of winning treats in the cake walk. We accumulated an enormous quantity of baked goods; he was so proud. He barely partook of any, though.

Will Turns 5 (!!)

For breakfast we had spooky Krispy Kreme Donuts. Will didn't finish his spider web creme filled, but he did like what he ate.

We bought him training wheels and put them on Andrew's old bike. We had failed to do this some time ago because we would not let go of the hope that he would learn on a balance bike first and never need trainers. But he is his own guy and he loved his first bike ride, taken the following Saturday at the Dolley Madison Library park and trails.

Will wanted to decorate cupcakes for his birthday instead of traditional cake and I think I am not going back. All the cute ones were designed by our extremely talented nanny, Cassidy. The boys loved them all.
Will learned to play and love UNO during our time at Kennedy.

Bike gear.

More bike gear.

Porter was still heavily in his naked, pants-free, shirtless phase in October. He wears more clothes more of the time now.

Ruining some cupcakes for the rest of us.

We can't believe our little Will is 5.

The power ended up going out during the end of that party and did not come back on again until Halloween evening, just in time for trick or treating. Will feels that the power outage contributed to the adults-only vibe of his family party (lack of Segura cousins, unlike Andrew's at Chucky Cheese), and I am not disposed to correct his misperception. But next year I have a feeling we will be able to put on the kind of party he has in mind.

Thoughts on Will's Last Day There /First Day Home

Everything always seems to happen with Will in October. In October of 2010, he had g tube surgery, and at the end of the month did a week at a feeding program at UVA. This October he started his 8 week treatment at Kennedy Krieger. We completed those 8 weeks today.

It was such a milestone in our lives, to finally undergo this program. And it was such a strange time, too. For the first time as a mom, I was away from two of my kids basically all day long. Some days I only saw Porter for 30 minutes. We had a live-in nanny, which made it all possible. It was a program that I had not wanted to resort to, and which I was dreading beginning. But in the end, as strange as it was to be gone all day with just one child, the strangest part was that we got completely used to it, and there are many things about it I know I will miss. It was really nice to spend so much time with just Will. I doubt I will ever get that sort of one on one with any of my kids again. I treasured that.

He is going home with heavier protocols then they anticipated at the beginning of his admission. We are not able to put a full plate of food in front of him, as they thought. But we will get there, and as we do, we have protocols that get him to eat enough each day that he is no longer reliant on his g-tube. He wouldn't have it removed for at least 6 months, since it requires a surgery to re-install if that became necessary, but a dormant tube has been the prayer of my heart for years now.

It was strange to go home today after so many weeks of such an intense program. It is sort of like stepping off an airplane into a new place, and it is all the stranger to me that I will probably be over it again in the next two days. Adjusted again already, like it was just a dream.

I want to record a bit about Will as he is right now. He has always been a really very sweet boy. Always quieter, more subdued and milder than his older brother or other boys. But he seems to have outgrown that lately, and those traits all but disappeared during his admission. It was kind of irritating, actually. I felt sad the other day when I saw another boy his age get a huge smile and run to his feeder when she appeared at the playroom to take him to his meal. Why was Will suddenly acting so old and too cool? He would have been sweet like that last year, 6 months ago. Apparently it is also common for kids in these programs to begin acting out in other ways as their control in the meals disappears. He began to seek out attention by acting out a bit. He would throw pieces of food at me during feeding times, call me "sucka!" or wiggle around excessively in his seat. I most hated his heavy usage of "Duh!" and the eye rolling. These behaviors persisted outside the program, too, and he found ways to shame us during Primary or with extended family. Because he was doing these things for attention, I am supposed to ignore them so as not to reinforce, but it drove me crazy. Will's "feeders" (behavioral psychologists) were really amazing, and a huge support to me in handling both is eating and his annoying behaviors. I will always love them and owe much to them.

I am treasuring signs of his old, softer side. He was so thrilled when the team presented him with his new backpack. He even loved that it features a little monkey chewing food, opening his mouth to show that he's swallowed, and then getting praise, just like his protocols. I was thrilled that the teenager possessing him has not totally swallowed up his guilelessness. He got a t-shirt, too, which he declared he couldnt wait to wear every day. Just like a little boy I know he is. He participated in a swallowing study today, for which we received a $20 gift card. He told Andrew about it and said sweetly that "at least [he] got some bucks!"

He fell asleep on the drive home (we left after lunch) and my speeding plus lack of traffic meant that we were in time to pick up Andrew from school. Will insisted that he had not been sleeping, but admitted that he "could barely keep [his} eyes open." Then he remarked, while crossing the school parking lot, that he could barely recognize the school, it had been so long since he'd last been. He held my hand. Andrew doesn't really do that anymore. Andrew was happy to see us. The boys played on the playground together before we left, wrestling and playing soccer. It was really the first time Will had been outside during the day in months. He looked so happy. When we got home, the boys played soldier in the basement. They didn't argue once. It was wonderful, really. I feel so much hope and joy right now.

Thursday, October 25, 2012

it never has felt so right to have been so wrong

I have resisted enrolling Will in the Johns Hopkins feeding program since he was 2. Back then, he was accepted for residential treatment only, meaning that he and I would live in the hospital there for 8 weeks. That Porter was due right at the date of his admission gave me a respectable out (no siblings allowed to accompany). But I didn't want to do it, anyway.

We have tried a few other programs, and they all proved to be unworthy of the time and money they cost. We saw no change in Will's eating no matter what we did and how much we spent. It just wasn't worth jumping through meaningless hoops just to prove to doctors that we were following their instructions.

This summer, though, I sort of hit a wall. We could not go on like this and we really had no options left. I knew that Hopkins would be by far the most expensive and the most inconvenient. Most of all, I did not have much faith that they would be able to achieve any more success with Will than any other program. Maybe the Holy Spirit sometimes feels like intense anger and aggression, because despite all of those misgivings I plowed ahead with getting him on the waiting list because I didn't know what else to do with my overflowing outrage at our life situation. Making the necessary appointments was sort of like boxing a punching bag. My expectations were very low; with this final, devastating and time/money/strength draining failure of a program my righteous anger at the universe could be complete. I think cutting myself might have been in my future.

But I could not have been more wrong. About every aspect of this undertaking.

Maybe I should be careful not to speak too soon. We are finishing up week three of the 8 week program, but so far, so miraculous. The staff does not think Will is going to need the full 8 weeks. His success at meals in the hospital is largely mirrored at home on weekends, too, even without the special feeders and their protocols. The entire staff feels that Will is going to eat just like any other kid his age by the time the program has run its course. He is really proud of himself, and I am so proud of him.

I hate to find solace in my own baggage by comparing it to the burdens of others, but nothing has humbled me more than seeing the other families here at Hopkins. They all manage other intense issues aside from eating--issues that will be lifelong challenges. I have struggled so much under the relatively small weight of an otherwise perfectly healthy kid who just wouldn't eat. The other parents with so much more to shoulder are so full of love and patience. They love their kids so much, and though those kids will always be challenging to care for, their parents are just grateful that their kids have been able to survive so that they can. It has been moving and inspiring and a little shaming to see. I am 14 weeks pregnant and I have been so worried about whether we will beat the odds with our CF genes. Being here has made me see that so many people do not beat the odds in life, and there are harder illnesses to manage than CF.

The drive to and from Baltimore is long, but now that I am completely comfortable navigating my way, I have been able to shave 15 or so minutes off the trip. Plus traveling with just Will is quite pleasant. I did drift off for a second on the freeway one evening, which was terrifying, but I have taken it as my warning to insist on napping each day in the playroom. Luckily I have no shame, so I can fully fall asleep on a small mat I put in the corner of the busy playroom each afternoon. There is not much judgment in that place, so its fine.

It has been a pleasure, too, to spend so much time one on one with Will. He is so sweet. And hilarious. All the staff loves him: he is charming inside and out. Because he does not suffer from any other problems aside from eating, they all want to pull him into their various therapies to be a leader and model. The most wonderful thing, though, is that he doesn't notice that the other kids are different. He is their friend and playmate and it is all cool with him. I love that.

I thought that these 8 weeks would be extremely stressful and exhausting. The opposite is true. Once I just bit the bullet and hired a live in nanny (we have the most wonderful college student helping us. A faithful LDS girl, oldest of 6 kids, from Arizona, who keeps her scriptures right by her bed, whose voice is incapable of formulating any sound at high decible, who is so gorgeous the boys are basically in love with her), all the stress disappeared.

A lot of things fell into place all at once. Aside from the nanny, which was a random find (I had not even thought of getting a live in), Porter was accepted as a peer model into a county preschool. He is one of five kids (two teachers) and he comes home each day (Tues, Wed, Thurs) so happy. This is the third preschool program I have seen first hand, and I have to say that it is also the best. And since it is county run, it is free. He takes a backpack and eats lunch there. He insists he is a big boy. It took all the guilt out of me for leaving him all day, since now his day is broken into school, nap, dinner, then I return. Plus our nanny takes wonderful care of him.

Andrew has had a bit more of an adjustment and sometimes prays that I will return home early the next day so that "Cassidy won't be [his] mom," but he seems to have settled into the routine of it, as well.

Taking care of one super compliant 4 year old, whom other people feed, is so much easier than taking care of 3 kids and having to feed them all myself, all by myself. The weeks I dreaded so much are flying by, the way precious, beloved time does. I am not in the biggest hurry to reach the end of our stay.

I may be driving for several hours each day, but I'm driving to about as good a vacation as I can hope for these days. It is even better than my previous vacation fantasy, which consisted of a non life-threatening condition requiring a hospital stay.

Sunday, October 21, 2012

"War is Hell:" A Boys' Birthday Party

Andrew's family party at home on his birthday with his requested "pumpkin shaped cake"

Andrew was a bit spoiled this year on his birthday. He has been having a hard time with our current arrangement of me and Will departing for Baltimore every morning and not returning until bedtime each night. His birthday fell on a Thursday, and I felt bad having him just eat dinner with our (wonderful and heaven-sent) babysitter and not having cake until 7:30 when we all returned. I called my parents, who intervened and took him to Chucky Cheese. My sisters and all their kids joined them. Will was desperate to be in on it, too, so in defiance of all good sense, we drove all the way out there after "feeding camp," not arriving until close to 7. I ended up regretting this decision. Suffice it to say that the only way I could ensure the physical safety of the boys from each other (and possibly from me) on the drive home was to get out my laptop and let them watch a movie as we drove. When we got home, we had cake and opened presents. It was a loooooong night. He received legos and weapons.

Fast forward to the friends' party on Saturday. I am so glad that we held this years' joint Andrew-Will birthday party at a locale outside my house, since Brigham ended up going out of town this weekend.

This year we held it at a laser tag place. I chose the one way out in Sterling because it was closer to most of the kids from Andrew's school, but in the end only two of them came. Darn Chinese school on Saturday (and skating lessons?). Fortunately there is no Hindi school, so Andrew's best friend from Kindergarten was able to make it. They were so happy to see each other. The kid he is hugging is not that kid, though. And that little boy ended up crying in pain in the corner for a few minutes after this exchange. Poor thing.

The whole thing was sort of a rush because another party was using the room right after us, but kids don't notice anything and I didn't care so long as I wasn't called upon to be cleaning it up and moving it along. You can see the worker in the background getting things done. We had the arena all to ourselves and the kids ranged around like little gangs, failing to make a lot of hits, but more importantly, failing to recognize that.

Andrew and Will decorated the blank Costco sheet cake I'm so glad I bought with their toy soldiers, tanks and helicopter (that I boiled). They wanted me to inscribe the Happy Birthday in red frosting (we didnt have blue) and since I am an idiot I did. I knew it might look kind of like bloodshed, but I was not taking into account how awful and shaky my frosting writing is. It looked like a poster for a movie about the carnage of war.

We had a theme going and didn't even mean to.

The kids all seemed to have a wonderful time, the other parents who stayed were so gracious and helpful (taking photos for me, watching kids, and carrying things out to my car afterwards. It was so nice to not feel stressed like I usually do about these things. It was what it was and it wasn't hitch-free but it was perfect. It seems like everything I do these days "takes a village." Oh well, I'm over pride and martyrdom and self-reliance. Some other season of life!

I only put four candles on Will's side of the cake and six on Andrew's. They were laughing about it and it took me a moment to figure out what was so funny with turning four and six. Its strange to have a seven year old, and that little Will is FIVE (that seems impossible), but I guess I am too tired right now to wear myself out further with my typical melancholy and sentimentality. It was a good, fun party and I'm glad its over.

Tuesday, June 05, 2012

Will's Plans

"When I grow up, I am going to live in a beach house in Florida!"

B: "Sounds awesome, Will! What are you going to do for your job there?"

W: "Nothing. I don't think people work in Florida."

B: "Then how will you support yourself and afford your beach house?"

W: "I will get my money from you. When you die. Of old age, of course." (I suppose this is better than acquiring it, as Andrew does, from "careless people who leave it lying around." Which is still us, actually, so I guess it comes to the same.)

Until then we are most welcome to visit him any time.

Monday, May 14, 2012

"Pain is a Reliable Signal"

(I am stealing this title from a high school classmate of mine who put out a very good album with the same name. You can listen here.)
On Friday morning, while he was packing for a trip to Duke to watch my sister graduate from her nursing program, my dad suffered a serious heart attack. He said that he felt perfectly fine one second and the next he felt a pain so excruciating that he knew he needed to get to a hospital immediately. This from a man who almost died in his own bed from pneumonia and pride. Twice.

We were lucky. My mom got him to the hospital quickly (though we learned that the thing to do is call 911 because the EMTs can begin treatment immediately en route) and he was able to get a stent placed immediately. It took a bit of testing to determine that he had suffered a heart attack; his initial EKGs revealed little at first and left my dad apologizing for the trouble he was causing the same hospital workers who, fearing he would not survive, were asking him about a living will.

My mom called me when I was on the road taking Andrew to school. The kids were listening to my side of the conversation. "Who is in the hospital?" Andrew demanded, and then added passionately, "It better not be Papa!"

Dad looked really bad when we got to the hospital to see him and the staff was predicting he would not be discharged until Wednesday. We even saw him eat a banana, which was truly alarming. He wondered at first what the heck kind of hamburger it could possibly be. On Saturday evening, Brigham and Agustin gave him a blessing. The next morning the doctor felt he had made huge improvement and could go home Monday. He looked perfect today, back at home, and he says he feels just as he did before the heart attack. He will undergo bypass surgery in a couple of weeks.

When we were in the hospital, (the boys donned their marine corp costumes from Halloween to rally him: "He will say, 'Oh, I am proud of myself, I am a marine!'" predicted Andrew happily as he got ready. It was totally their idea) I noticed the Wong-Baker Pain Scale.
My dad had reported an 8 on the pain scale upon admittance, which means that a normal person would have reported a 10. I obviously noted, because I am obsessed, how perfectly the pain scale analogizes to Motherhood, with the children substituting for pain, and realized that I am often at an 8 (children interfering with basic needs--sleeping and eating) and some other number, even 0, simultaneously. I thought about how it was lucky my dad's pain was acute enough to overcome his pathological insistence on avoiding aid of any kind. I thought about the panic I felt at possibly losing my dad. I kept thinking all day Friday about how much my life would change, how much I would miss him, how much my boys would miss him, if he were taken from us.

Papa is such a huge part of our lives. He loves his grandkids so much and would do anything for them--and basically does, the only exception being that he will not deviate from his daily 10:30 am brunch appointment at McDonalds, but he will invite any grandkid along and pay for their hot grease meal. (Post heart attack he is open to trying out Arby's or Wendy's; he suggested getting hotdogs at Costco on the way home from the hospital today. This is actually a positive evolution in the man who thought butter had protein (2001--we had to get out the nutritional label to convince him otherwise) and that rice was a vegetable (Andrew set him straight).) Even when the kids are causing me to register at a 10 on the Wong Baker scale, they somehow never seem to bother him (probably because any tendency to be annoyed is overpowered by a satisfaction and amusement in knowing that he can just look on while his daughters have to deal with it.)

From the reading of depressing poetry about bunnies caught forever in traps and men who will never recover from WWI to the ever-willingness to jump on the trampoline, go on walks, fail to rub in hugely excessive amounts of sunscreen slathered on your face, obsession with hamburgers and television and Civil War maneuvers and conservative politics, life would just not be the same without Dad.