A first

It started with a a question that for most couples isn’t that big of a deal.  “Why don’t you take Thursday and Friday off?”, I asked Paul on the Wednesday before the 4th of July.  “Do we dare take time for an actual day off instead of for hospitalizations, appointments, or surgeries?”  I can count on one hand the number of times Paul has taken time off “just because” instead of using his vacation time for medical stuff.  While on the phone with him, we calculated hours out…how many he has left for the year, how many we know we will need for upcoming Cinci trips, ect.  It would be a little risky (What if Keyan takes a turn for the worse), but we agreed to take the chance.  He called me back moments later and said it was official, he would be on vacation for 5 days!  My brain immediately went into overdrive…what would we do?????

I turned to facebook for suggestions for day trips and I was up at 3am scouring the internet for something special to do with the kids that would also accommodate our unique needs.  Anything that would require a hotel stay could not be considered due to all of Keyan’s equipment.  Anything outside would not work because of the heat, and I needed something that would work for all five kids….and than a plan came to mind.  It required some bravery, the help of some very generous friends, a lot of coordination, and a whole lot of spontaneity!  (which can be VERY difficult when it comes to our life)  We would visit the Indianapolis Children’s Museum!  We have friends that live in Indianapolis who just happened to be out of town so I called them and asked if they would mind us staying at their house and they immediately said “yes.”  All I had left to do was convince Paul, and that was a big job! 

We discussed it, we argued civilly, and we fought about it until he finally agreed to give it a try.  What was he so worried about?  If you didn’t read between the lines…I wanted to do it without taking a nurse.  It would be the first two nights in 6 years that a nurse would not take care of Keyan.  I had contemplated it all for awhile but I just needed to get him up to speed and on board!  It was something that I desperately needed.  I needed it to be just the seven of us.  I needed to know that Paul and I could do it.  I needed a break.  I love our nurses, and would not trade the relief that they give us for anything.  They have saved Keyan more than once and without them, we would get NO sleep and Keyan’s health would be at risk.  However, for the last six and a half years, we have had someone else in our house 50% of the time.  I wouldn’t change it for the world but I just needed some time with my family.  No nurses schedule, no nurses opinion, no giving and taking report to a nurse….just a family on a quick get away.  I knew it sounded crazy, but with the use of a house, and an area that has a great children’s hospital, I thought we might be able to pull it off.  I knew we wouldn’t get much rest, I knew that it would add tremendously to our busyness, and I knew that it was taking a huge chance, but I also know that while Keyan is having good days, we have to take every opportunity to embrace life.  And that is just what we did!

I had a friend here Friday morning who packed the other kids stuff while Paul and I focused on getting everything ready that Keyan needed.  We literally packed up our “mini hospital at home”, checked and rechecked our lists, and went thru every worst-case scenario.  I had to laugh when my friend yelled, “how many pair of panties do you want packed for the girls?”  My response, “Well, each girl needs two pair plus we had better bring two extras so for two nights away, we need 10 pairs of panties!!!!” We both just stood and laughed.  We never could have made it out the door by 12:30 had she not been here to help.  Everything fell into place….oxygen was delivered by noon, TPN (Keyan’s IV nutrition) was here by 12:15, I was able to cancel the nurses, we had a house to stay in, my parents could feed the dog and all of the crayfish (yes, we still have lots and lots of crayfish!), and we were off!  I was thrilled to be trying this trip and cried as we pulled out of town!

I won’t bore you with every detail of our trip.  We ate at some fun places, we played at the museum, we did a little shopping, we read books on the back deck under the stars, we laughed, we made very important memories…and we all survived!  Paul and I were exhausted, but it was worth it.  We had pulled off a trip that we previously had thought was impossible.  God had laid it all out, took care of the details and luckily, we were brave enough to take the leap…we could only have done it together…it was beautiful.  I will say though, that I don’t want to be the nurse again anytime soon!

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