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.


Ie Li said...

Alexandra! Congratulations on your pregnancy! I am so happy for you.

I'm so happy that Will is doing better and that you get to nap!

Love you!

Sarah said...

First of all, congratulations! What wonderful news! And how fun that our babies (and Abby and Kat's) will be so close!
Also, the program Will's in sounds perfect- for you, for him, for everyone. I'm so glad that all worked out and that you can have a great nanny there with your kids at home to make it all work.

terrah said...

Congratulations! How fun to add a new little one to your home. And, how wonderful to find some solutions for what you've been working with for so long. I'm so happy for you. And happy you get to take naps at such a tired part of pregnancy!

Alisha said...

Hooray for Will's success! I am grateful that he got into this program and that all the pieces fell into place for him and you to attend.


When you get back, I'd love to catch up. I wondered where you'd gone to.

Nap as often as you can!

Dan and Hilary said...

First of all, I had no idea you are pregnant! Congratulations and you are so brave!

I loved reading about Will and how well he is doing. I am very happy for you and your family!

autumn said...

Alexandra - it's Autumn (Pettit) Baldwin - thanks for your nice comment on my blog! It was really fun to hear from you. I've been reading back through the past few months on your blog and I can just hear your voice in your thoughtful comments - it reminds me of sitting on your bed in the dorm room w/Monica freshman year - too bad you live so far away. Anyway, thanks again and BTW you're gorgeous in your profile photo.

Tara, Doug, Isaac, and Lucy said...

What a great post. None of this sounds easy or "good," (even pregnancy, because there's a whole lot of bad that comes with that particular blessing) but it sounds like you are handling all of this so well. And your perspective improves mine. Thank you!

The Cannons said...

Your post made me a little misty. I was actually thinking about will on Sunday. His cute little faced popped into my head and I wondered how he was doing. I remember talking with you about this John Hopkins treatment. Reading that he will actually eat at home and that the nurses think he will eat like a normal child of his age made me do a little dance inside. I'm so happy for you and especially Will. Hopefully these next couple of weeks will be gloriously advantageous!! Good luck driving, with the program, with the pregnancy and fighting for Mommy rights with the nanny:-) ( I want one of those!!)