Friday, May 13, 2011


1. A period of time devoted to pleasure, rest, or relaxation, especially one with pay granted to an employee.
2. a. A holiday.
b. A fixed period of holidays, especially one during which a school, court, or business suspends activities.
3. Archaic The act or an instance of vacating.
intr.verb. va·ca·tioned, va·ca·tion·ing, va·ca·tions
To take or spend a vacation.

People have been saying that they hope I am having a good time on my vacation.

Thing is, this is anything but. I may have gone overboard comparing this place to Disney. I am more than ever, being reminded of my life's circumstances. There has been no rest, relaxation or pleasure. The only one who is having any fun per se, is Cole. That is, in between the torture. Today on his activities list were things like a nephrology consult, someone scrubbing his scalp violently with acetone to remove 5 day old superglue, a fasting blood draw, adjusting to a new medication, a kidney ultrasound, the usual daily poking and prodding, a very long process of washing his scalp and laboriously combing out the remnants of the glue...5 times. Not exactly what I would call fun.I don't know of any retreat that requires bringing three binders full of medical records as part of your luggage. Brian does not have paid time off built up yet, so technically, this is not even a vacation in his employer's eyes. We are going without pay to be here. We get the unique pleasure of sitting in a small room, in uncomfortable chairs all day and speaking to doctors. There has been very little rest on my part. It's not easy to sleep in a hospital bed, with a restless toddler whose knees are in your back, arms flying everywhere. To top it off, you have to hold a button in your hand and be poised, ready to hit the trigger at the slightest movement throughout the entire night. The only one who gets room service, is Cole. The rest of us are left to fend for ourselves, cafeteria style. The anxiety of the entire thing has done a number on my stomach and it will probably take a couple of weeks to get back to normal. I wish that I was actually in Miami to lay on the beach with a pina colada (virgin) in my hand. Really, we could be in North Dakota for all that we have seen of this town. We're not even close to South Beach and the only sights we have seen are the 3 floors of MCH.The truth is, we are here because things have been getting worse...not better. Just because we have had access to great doctors and nurses here, does not mean that Cole is going to be cured or that he won't still have to struggle every day for the rest of his life. We are just hoping to give him the best chance possible at having some freedom from seizures. To actually want your child to have seizures, is one of the strangest phenomenons I can think of. Especially when you have been praying for almost his entire life that he won't have them. To wish him struggle and pain, just makes me sad.

Believe me, I wish we were in Florida to take our 3 year old to a theme park. Truth is, the money (which we don't have a lot of) spent and lost from time off, on this trip could have taken us all on a Disney Cruise...and then some. Honestly, I am worried about paying our rent. However, this is the right place for Cole. I have felt it every day, multiple times a day since we set foot on campus. It helps when every one who comes in the room tells me how adorable he is and how they wish all patients were as cute as him. Even some random older woman, who brought a couple of toys to give to children, was paraded directly to our room with a staff member to present Cole with a Handy Manny flashlight. The staff knew that he would give the perfect reaction and a gracious "thank you!".

One of my friends sent me an e-mail the other day exclaiming that reading the blog has made her "homesick for Miami". She brought her son here a few months ago. Now, I don't know anyone that wants to pack their bags and go to a hospital. I think I know exactly what she means though. She misses the support. She misses having everyone already understand, to an extent, what her little boy is going through. She misses not having to explain herself over and over. She misses the peace of mind knowing that while she is within these walls, everything humanly possible is being done for her child. So even though Brian got to go water skiing and we spent an hour and a half at the beach, this has still been a hospitalization. A tough one. Yet, the opportunity to meet other families, swap war stories and get state-of-the-art treatment for our son has made it bearable. I would do anything for Cole. Anything. And this hospital is going to help me do that.Dr. Ian Miller, physician extraordinaire


  1. Niki, I'm so glad you're in the right place for Cole. You know what is amazing about your blog? Even though you are going through so much, you always manage to be funny and I end up smiling or laughing at least once in almost every post. You are a great writer and an even greater mother. And I love the pictures because I agree with the staff there that Cole is utterly adorable and charming.

  2. Sounds like a great hospication to me! You're not even in the PICU. ;) It's all relative, right? :)

    When you get a chance, let me know how the depakote addition is going. Seizures? Sleepiness? No rage, right (like keppra)? (We're thinking B may actually have to go up on his depakote next week.)


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