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.