Saturday, April 10, 2010

What Goes Up

Eleven days. We are eleven days into this now, and somehow I still expect it to suddenly make sense. Like in the next moment, I will be adjusted to the reality, and I will understand the scope of its affect on our lives, and I will know how things are going to play out. Or at least that I will feel something other than an earth swallowing sadness or lighthearted denial. I have figured out that I can go two or three days without crying. With the fundraising efforts and keeping the unbelievable quantity of Jackson's and our supporters informed, I can stay busy for that long, and as long as it feels like I am DOING something to save him, it can't swallow me up. But on Friday we went back to the hospital for his first fallow up. Just pulling into the garage of the castle-shaped home of joy and sorrow put me back to diagnosis day. The grief welled up in me with an unexpected force as we walked down the hall, past Radiology, and up the elevators to the CF clinic. The waiting room wasn't empty as is was last week- instead crowded with children and parents in varying degrees of illness. We found a place to sit that carefully kept Jackson above the recommended minimum 3 feet from all the other patients. We held our breath as we undressed him at the Vitals Check as he laid on the scale and the nurse converted his weight from grams to pounds. We cheered when he clocked in at 8lb, 3 oz, a 12 oz gain, and again when he measured half an inch longer than his last appointment. I literally wanted to go up to the roof and shout. The appointment was brief and informative after that, we discussed which chest sounds should be alarming, got some medicine to help alleviate the gas pains that were dominating his hours and preventing any sleep for any of us. We were thrilled as we left, the news was all good at this juncture.

It wasn't until I began to plan out his daily medicine schedule that I began to choke on my tears again. (I'll explain all his meds and what each one does again later, as I want the blog to be as educational as possible.) Breathing treatments twice a day, Zantac twice a day, Chest PT as needed if breathing treatments don't alleviate coughing, enzyme capsule at every feeding, vitamins and a salt supplement each once a day. It just seems like so much for a little guy who hasn't even finished a month of life yet. Too much. I tried to get angry, just to have an outlet for some of the emotion. Angry at the pregnant women in the store who had experienced none of this, angry at irresponsible teenage mothers with perfectly healthy babies, angry at all the other shaded carriers in grocery carts. I tried to get angry at my genes, angry at God, or angry at my statistical fate, all to no avail. I can't bring myself to blame the blameless.

My worry is compounded by the apparent affect Jackson's illness may have on my daughter. We have explained to Emily that her brother has a sickness, that he will a=always have it, and it will mean he has to do some things differently. We will have to be more careful about washing our hands and things like that, and he will take lots of medicines to stay healthy. I thought any more than that might be too much for her to process. I don't know if someone at her father's house has been discussing it or someone at school said something- I've certainly not uttered or entertained thoughts of this nature myself- but somehow she has gotten the idea that her brother is going to die, ultimately leading her to have a panic attack at school. Anyone who knows Emily will vouch for my saying she is best summed up as a bouncy ball of sweetness and light. She is tender and maternal and a born care taker, and she is very worried about her brother. Her counselor at school is putting her in contact with another student who has a sibling with CF, and I think and hope that helps her grasp what it may be like to live with. We are also talking with the Child Life specialist at the CF clinic about some play therapy to help her cope. I still worry that having Jackson's medical schedule dominate so much of the day she will feel left at the wayside. I've managed to pencil in Mom and Bitty only time at least weekly to try to maintain my bond with her.

There is so much more to share...I consciously decided to share this journey, no matter how painful. There have been moments I second guessed that and executive decisions about privacy since I began, but I think it's important enough to share. Most of us let slide details of our personal lives for the frivolity of facebook, or twitter, or the like- certainly this merits a bit more than that. Someday someone might find themselves in my shoes and eek out some comfort from my words. Maybe you have learned by reading this about Cystic Fibrosis. Inform and educate, certainly that is worth something.


  1. My friend, your mother-in-law, pointed me to your blog. Wonderful writing that brings back so many awful memories for me. I don't know you and I don't presume to tell you how to feel. But if it does you any good, I remember being just as angry and confused and scared as you when my then-six-month-old son was diagnosed with a very rare seizure disorder. And again, at age 5, when he was diagnosed with autism.

    So much of our world has changed because of it that it's almost as if Disability has become another person in our household. But, for better or for worse, my son is who he is (now 20 years old and working at an Austin hotel!) and the rest of us are who we are. It takes a long time to get past the anger and denial to reach acceptance. Not that one day has passed that I didn't wish that this had never happened. But -- for all the inconveniences and disasters his disability has given us -- I love my son just the way he is. If he didn't have autism, he'd be very different. Probably "better" -- whatever that is. But he wouldn't be Nathan.

    I wish you and your family all the best. If there's ever anything I can do to help -- even just to listen or to take a sneak peak at one of your blog posts -- please ask.

  2. As you told me unfortunately we are bonded in sorrow, but bonded nonetheless as we suffer through the worry, despair and hope for our sons, even though our circumstances are polar opposites. Your words are unexplainably comforting to me. I know too well those feelings of anger, finding myself in a fit of the "mad reds" as I look at other mothers and children who have no thought or understanding of what we have endured already in our boys' short little beautiful lives. You, my dear friend, are such a brave and beautiful soul and I have all confidence that Jackson could not have been born into a better family. I also have faith that Bitty will come to her own understanding and become another source of strength and inspiration to her beloved baby brother. I think of you all daily and my heart, thoughts and prayers go out to you and I am incredibly thankful for our friendship. My love to you!

  3. Steve thank you so much. (And you too Jules!) Such a bittersweet part of this new journey is just how many people we are united with in our grief. People tend to trip lightly through life never feeling or realizing just how fragile we all really are, but when things change there's a welcome wagon the likes of which I never imagined.