December 10, 2018

Could I Order a Seizure Salad?

In Life with a Side of Special, there is always a base layer of stress, angst and anxiety - caused by one thing or another.  Sometimes I feel frustrated that our moments of joy are never without the co-existence of a little knot of sick in my stomach.  I was trying to describe it to someone the other day.  The best physical description I could give it is like swallowing a burning hot marble -- and always feeling that hot marble rolling around in your gut.  There is a rare moment that I can get so busy that I can forget that it's there - but almost always, that hot marble ensures a constant awareness that not all is well.

One extra layer of angst this week has been an increase in seizures for Bridger.  The school called on Monday reporting some convulsive seizing, then called again later that day to report more.  I brought him home to observe him.  By Friday we had 2 pages full of noted seizures.  I cancelled my plans for Wednesday and took B for an EEG, which I try to convince both he and I that it is indeed a fun date by having lunch together after.  If his EEG could read perseverations in his brain it would have shown that all he could talk about during the test was what Wreck-It Ralph car he would get in his Happy Meal.

There was a hair salon next to McDonald's, so I applauded my bold move to take him to Great Clips after lunch and let the stylist scrub all the EEG goop out of his hair and give him a haircut at the same time.  That stuff takes forever to get out so I was smiling all the way home from his appointment. {simple joys}

Whenever we have a health *bump* -- even one that will resolve itself in time, it means opening Pandora's box to a few extra doctor's appointments/tests, a few more days home from school, a change in medication - which means some negative behavioral changes while he adjusts to the new dose, and a few more insurance phone calls.  Always extra time for that in December, right?

So if I seem distracted at times, please forgive me.  I am thinking about that hot marble I swallowed and the seizure salad I am being served this week, that I didn't order.

December 06, 2018

Picking Up

Picking up from the present.

Picking apart the 6000 blogs that have filled my head since my hiatus.

Picking through the memories of Virginia that I took with me in our new family adventure in Dallas, Texas.

What a year.

How did we get HERE?

I ask myself that same question in disbelief some days.

It started with a question that Alan and I looked at each other and asked,

"How do we want it to end?"

We said the same answer to each other,

"Not this way."

The "it" was the beginning of the end of parenting our littles as they become bigs and find their wings and fly.  Lance was a sophomore.  How that happened, I don't know.  We realized our precious oldest child would soon be gone.  Then would follow his sister, the very next year, and another sister 2 years after that.  

I'm not ok with that part of God's plan -- that we care for these children that we love so passionately to our core, and then they leave.  But we don't get a say in that, so at least we can have a say in how that chapter ends.  When we had 5 children in 7 years, it was all we could do to keep juggling all the chaotic toddler circus that we were immersed in.  Never did I get a thought that having the children so close together meant they would leave just as fast, on each other's heels.  It is surreal to think how those crazy days of 5 kids 7 and under, could go so slow when time can go so fast.

For the better part of the past 20 years, Alan would leave for work with the children still in bed and he would return home from work and the children would already be in bed.  He would work on vacation -- I will never forget the many conference calls he tried to be on while in the lines at rides at Disney.  

Lance is everything we could ever dream or want in a son, and we didn't want his last two years at home with us to end like that -- with Alan at work when Lance's day started and coming home after Lance was asleep.  We wanted to leave this chapter with no regrets - making memories every second that we could so that when each of these older children leave, our hearts our satisfied that we did everything we could to savor this gift of time with them.

We decided that it was time for Alan to leave law firm life and go work as in house counsel for a company.  Corporate 8-5 life, vacation time, sick days -- all the luxuries we had never experienced.  He started looking, not sure when a position matching his seniority and expertise would pop up.  It was a slower process than we thought it would be with the criteria we had set.  Well into the summer of 2017, the perfect position was discovered.  HR worked quickly to make the transition for us in time for school to begin in Dallas, which was just a couple weeks away.  We tried to find a house in a whirlwind 48 hour trip to Dallas.  I cannot even begin to go into the restrictions and criteria of a house to meet Bridger's needs and be wheelchair friendly.  There wasn't one on the market and the decision was made that we needed to build - even though that meant an 8 month time table and a non-wheelchair friendly rental.  We got a late start into the new school year, packed ourselves in a rental, signed a contract to build, put our Virginia house and cabin on the market and started our new chapter in Dallas.

It was a mess.  The house didn't sell immediately, nor did the cabin.  We had some strong grievances with the school system for Bridger as well as the high school.  Living in a non accessible house - even for a short time, was torturous on us physically and mentally with Bridger.

Abort mission.

We made the decision that I would return to Virginia with the kids and finish out the school year there in our house while it was on the market.  We found better school district and location to build our accessible home in another suburb and signed that contract to start digging.  Alan would fly home on the weekends.  We called our first attempt our "Faux Move" and had the comfort of our brief three weeks in Dallas to know that we loved it, and to know what things we needed to change to make it the best we could for everyone.

We took the opportunity to squeeze in as many East Coast adventures that I could with the kids knowing that our time as Virginians was almost over as we would soon convert to our new title of Proud Texans, and let our inner "y'all" find its way into our vocabulary.

So here continues the story of these little acorns growing into great oaks, Texas Edition.