Archives for the month of: July, 2010

Kevin and I use a term internally “cousin envy” – but tonight without really thinking about it I used it in conversation.  I wasn’t asked to define it at the time, but as I drove home I wondered what I would have said had I been asked.  To me cousin envy is in part appreciation of the abilities of Grace’s cousins. It is wonderment at their abilities, the way they use their hands, how and what they play with, their imaginations, their vocabulary, their running, the questions they ask, their communication skills, what they eat even.  It is also not unusual in a family situation for one of us to say to the other….did you see that? or isn’t that amazing? or can you believe he knows what that means?  Most of the time I think we try to keep our awe of the abilities of others around us to ourselves…it just doesn’t seem to translate well.

The other part – the envy I guess- is about wanting those things for Grace – wanting for her to have those abilities.   Wanting her to be able to join in the fun with equal excitement, not necessarily having to adapt it to her, not slowing down her cousins just so she can be included.  But the thing is, that’s what we do.  That is what Grace needs.  In a lot of ways the burden falls on them to adapt to her and I never want that to take away from their enjoyment of cousin time.  So far, I think its working out ok.

The picture is of Grace (not feeling exceptionally cooperative) and my nephews-  Adam, beside Grace, Nathan in the middle, and Eli on the end – aren’t they amazing (and totally cute)?

Joy

 

 

 

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Tuesday we saw Dr. Doescher , Grace’s Epileptologist in St. Paul.  The parking ramp across the street was pretty full, and the first parking spot I found was on the 5th level.

Leaving the ramp took some time; the ramp is one of those ramps that you make a big circle to go up or down a level, each lap with tight corners, speed bump and a bump out for the elevators and stairwell that you have to go around in the middle of each lap.

Backing out of the parking space in this St. Paul parking ramp after we left the appointment I was a bit stunned, we don’t have to go back for six months and we will not make any changes.  Proceeding down the lane, over the speed bump, around the stairwell and elevators, a sharp left turn, a turn to the right, a turn to the left and down to the next floor.

We have never really made no changes, no tweaks, no turns after an appointment. We had an appointment already scheduled in September but the doctor says we don’t need to keep it, a new first.  We are so used to routine, we only cut back if we are making way for something new.  In four years we have seen spent more time in hospitals and clinics that most do in their lifetime.  We know this game, why are we changing the rules now?

Down the lane, over the speed bump, around the stairwell and elevators, a sharp left turn, a turn to the right, a turn to the left and down to the next floor.

Vitamin B-6, Clonazapam, ACTH, Topamax, Depakote, Felbatol, Zonegran, Ketogenic Diet, Sabril (Vigabitrin), Lamictal, Banzel, and Vimpat, Corpus Callosotomy have all been tried to help control Grace’s seizures.  With each turn a new hope that we would see a reduction in seizures.

Down the lane, over the speed bump, around the stairwell and elevators, a sharp left turn, a turn to the right, a turn to the left and down to the next floor.

Even though Grace has had thousands upon thousands upon thousands of seizures and tried treatment after treatment after treatment, a part of you still thinks ‘what if’ this next medication could be the one! The missing link, the fix all, the quick exit.  Even though the odds of this are beyond slim to none…there was still a glimmer of hope that the next one will be it.  We knew that surgery was the next option as no more medications were available; it was essentially the last resort.  I knew going into this appointment that there was nothing more in the immediate future but there was still a glimmer of hope that there would be something to try, a little tweak, an adjustment, something to reduce the seizures.

Down the lane, over the speed bump, around the stairwell and elevators, a sharp left turn, a turn to the right, a turn to the left and down to the next floor.

It’s hard to separate the different things going on in Grace.  She does not just have Epilepsy.  There is her hypothyroidism, the severe acid reflux and other GI issues I won’t mention here, her bone age is five years and she is only four, and she is developmentally delayed to the point where she is considered to have severe mental retardation.

That glimmer of hope that the next treatment will eliminate the seizures extends to eliminating all other problems.  There is no magic cure that will make Grace like every other four year old, Grace is different, Grace is unique.  I would love an instant cure to take this all away and not change but wipe out the past with a new beginning.  But I also know that Grace has changed me, and changed me for the better and there is no magic cure.

Down the lane, over the speed bump, around the stairwell and elevators, a sharp left turn, a turn to the right, a turn to the left and down to the next floor.

The next steps are to let Grace be Grace, get her involved in more therapies, expose her to more music, keep riding horses, play at more playgrounds, go swimming, build her a new home that will meet her needs going forward.  Instead of turning out of state doctor appointments into mini family vacations actually take a family vacation.

Handing the ticket to the attendant, ‘that will be four dollars.’  Handing him a twenty he asked if I had anything smaller, but unfortunately I did not, the change came back, the gate went up and we began our new journey.  I’m sure there will be setbacks along the way, there will be some speed bumps, sharp corners, quick turns, and we won’t always have correct change.

Godspeed.

kevin