Shh! Let’s keep these thoughts between us. I don’t want to
jinx myself!
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| Robert - Ready for the 4th of July party at Day Program |
Winter is a rough time for Robert. There are numerous
seizure clusters, he is constantly on the brink of pneumonia and, most days,
can barely stay awake.
Summer is a whole different story!
Robert’s seizures decrease, his congestion is steady yet
manageable and he is awake and a delight.
I suppose the key to keeping him healthy year-round would be
to move to a climate that is warm and sunny all year. Since that is not possible (unless I can magically
transplant my entire family, my job, Richard’s doctors, Robert’s doctors and
day program to a year-round, sunny climate), we have to just get through winter and enjoy
the break that summer brings us.
And we are!
We have been in our new house for a year and have happily
settled into a routine. Robert loves having his own bedroom and I love the
bigger bathroom in which to bathe him (heck, we even have a tub/shower for him!
No more baths sitting on a chair and using the sink and a thousand towels to keep the floor dry!).
Richard loves having a one story house which means less pain
for him on a daily basis. He has created a beautiful garden in our lovely
backyard and we have been enjoying the fruits of his labors (tomatoes,
blueberries, zucchini – I can’t even name everything he is growing!).
My work commute is cut in half (if not more) and even things
at work have settled down after our big move last year. (I am so grateful last
summer is a distant memory!)
We are organizing and decorating and settling in and doing
home improvements instead of packing, unpacking, showing our house and trying
to find a new place to live.
Life is good! No – to
borrow from Robert: excellent!
Of course, there are hiccups. We have made acquaintance with
the local paramedics and they are familiar with us and our new address. No
major emergencies but enough that they’ve had to come out a few times. For us as caregivers, used to living on the
edge and always on high alert for the next hospital stay or medical emergency,
this is minor.
Comparatively speaking, things are really good.
Robert jokes and laughs and hasn’t had a blow up in quite
some time. This means he is not stressed out!
Robert continues to love his Day Program and from what I can
tell has many friends. (I asked him once
who is best friend was at Day Program and he told me, “They are all my best
friends.”) Such a diplomat!
Robert’s drivers adore him and he comes home from program
happy, albeit usually ready for a little nap and a little Family Feud time.
He is still slow and sometimes sleepy and we have had to
stop a few seizure clusters with Ativan before they got out of control (even
the Ativan has worked lately to stop the clusters!). We have to coach him to
eat so meals take 90 minutes instead of two hours. I have my moments of
frustration with the slowness but that just tells me I need to take a break.
That is okay too.
We are within walking distance of one daughter and her fiancé
which makes me one happy mama. I have always dreamed of a family compound (you
know, not living on top of each other but close enough to spend time together
and help each other out). Now we need to convince everyone else that my idea is
not at all crazy. Close but not crazy close. Who’s with me?!
The dogs are even well-adjusted and happy. Sure, Puppy needs
more training but now we have time to devote to that and he is responding well.
We will get there!
Healthy, happy, settled and enjoying life. What more can we
ask for?
Of course, “winter is coming” is always in the back of my
mind (and not just because I am a Game of Thrones fan) but that is not for a
while. For now, we are enjoying summer.
We are enjoying the smooth sailing.
Summer is here.
Life is good.
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