April 27, 2014

The Squeeze

All too often lately I have been in Sadie's position in the above picture on the left -- pressed up against a wall with other people/things squeezing me from the other side and the whole world spinning without giving a darn if I am near the brink of losing my marbles or about to throw up my lunch.

April has nearly squeezed the breath out of me.  The ride isn't over yet.

I can't explain it in a way that 97% of my readers would understand. . . so I will just sum it up with hundreds of hours of insurance administrative work and appointments, including pre-authorizations, appeals, justifications, letters of necessity, prescriptions, prescription overrides, paperwork, IEP blehk, equipment orders and corrections to orders, accessibility remodeling and researching to find the most accessibility-friendly building supplies and accessories for such, supply shipment management, mri's under anesthesia, orthotic casting, all the prep work taking place for Bridger to participate in an IMOT (Intensive Model of Therapy) and hoping that some of the above mentioned work will bring it down from a 5-digit out of pocket amount to a 4-digit out of pocket payment for us.  And for the record, the above list is a pretty scant summary.  The long version is going through my head daily as I am juggling more balls right now than any clown ever should.

I realized I had reached my cracking point when the incredibly mischievous. . . charming, cute, BUT wickedly mischievous little 4 year old of mine took advantage of the 5 1/2 minutes of time I took for myself last week (in the form of a shower) and snuck outside and reached her curious hand in the Robin's nest she had been eyeing for some time and took a tiny little blue egg out.  That same mischief and curiosity overcame her and she couldn't resist the urge to crack it open. . . and. . . fingerpaint with the contents.  Yep.  Just, yep.  That is still all that I can say.  It took every ounce of self control I had to sit on my hands and tie my tongue in a knot and just rock in place for a few minutes.  Then I washed her hands a few hundred times over and called my husband (out of town) and told him I needed to get away.  When he got back in town that afternoon we discussed the options (or lack of them) I had at my disposal.  

Spring break hadn't really been a break for any of us, especially my older three who shoulder more responsibility than any child their age really should.  So I decided that I needed a spring break do-over with them.  I secretly packed an overnight bag for us and placed it in the trunk.  Sunday evening I told them that we were going to go for a drive while Dad put the two littles in bed.  They got in the car and we drove. . . and drove and drove.  We had delightful conversation for THREE hours without anyone the least bit suspect.  I was cracking up.  Every once in a while they would ask if I thought if Dad had the babies to bed yet.  I replied that he probably did and that we would be home in 15 minutes.  Then 30 minutes later we would repeat the same dialogue.  Not a question was raised when we passed by several rest stops down I-95 or even Kings Dominion.  We continued on to Williamsburg where I pulled in a parking lot of a hotel when, finally, a wondering word was raised from the back seat.  I laughed and told them about my secret plans all along and the surprise news that they would be missing school the next day as we were going to Busche Gardens. Ahh, it is so fun to be the messenger of such announcements and for a husband who took off of work to do other kiddos at home so I could steal away with them for a much needed break!  They were giddy for the next 5 hours in the hotel but finally fell asleep.  You know what was one of the things they were saying that they were so excited about?  That we could stay at the park as long as they wanted and not have to leave early because of Bridger.  That shows what an impact Bridger has on every facet of our lives -- even our vacations.

So the next morning we donned the sunscreen, hats and comfy sandals and had a entire day of fun!  I got to take off my Special hat and just be a mom -- a mom that can laugh and ride all the rides and not stand on the sidelines hold a wheelchair or calming a sensory meltdown, a mom that had patience enough to last me through a whole day of amusement park doing's and a long drive home, a mom that could focus on the needs, emotions and conversations of my other children with my undivided attention.  I got to be a Normal mom, and it was really, incredibly fun.

Now, 6 days later, I am back in the squeeze again.  Bridger is very sick and I am having to pump electrolytes down his g-tube in 15 minute increments in 15 ml doses all day long, carefully intertwining the dosages of Zofran and Motrin to keep his high fever down, seizures at bay and constant vomiting reduced so the fluids can stay in him to avoid a hospitalization (which is just the basic intervention to maintain the medically fragile - there is so much more beyond that to be concerned with.)  Vomit laundry is swirling around the washing machine with the next load ready to go and I lift, bath, brush, clean, hold, rock, sing and cuddle and hope that the others won't mind that cereal is for dinner and look at all those life-sucking tasks that I listed above, a to-do list that seems to grow before my eyes, that will have to wait until midnight tonight - when I will have a free hour to face it.

Until then, I will smile and think back to this past week when I got to be a delightfully refreshing person. . . I think we will call her "Normal Mom".