Thursday, July 15, 2010

Swirling & Twirling

I have this piece of posterboard on AJ's bedroom door.  Bright red.  Easy to spot.  With nothing on it. 

I had intended to write down all the fun activities we planned on doing this summer all in one place. I saw the idea a while ago an a few crafty blogs I stalk have marked in my favorites.

There it sits. Blank. 

Because driving to and from therapies, doctor's appointments, and summer school is not fun.  At least not in my book.

My brain is literally swirling and twirling so much I can't seem to focus, relax, or any of the things I am commonly told to just do and I'll feel alllll better. 

What exactly is swirling and twirling?

I'm frustrated that we can't put a pool in our gigundo yard.  Apparently out lot is too wide and shallow and our lot lines don't leave much give for putting up a above ground molded plastic liner pool.  The whole point was to avoid dragging AJ to another appointment for aquatic therapy at a neighboring city's pool.  Over the last few weeks, I've seen a few pools that are clearly not abiding by the regs and you know what?  I ordered a smaller pool and we'll see if we can stick that sucker in the backyard.  Although, I'm not sure with our mosquitos. If not, we've asked some family friends if we can bring him to swim in their pools every now and then. 

At our appointment last week, AJ's CP doctor told me he should be doing lots of swimming (more on this below), and my heart just sunk.
I'm frustrated we have this gigundo yard and can't use it.  One word: mosquitos.  Ugh.  It makes me miss living in "the city".   We really aren't that far out, but far enough that our neighbors wear mosquito netting while cutting the grass. The mosquitos favor AJ's sweetness especially (he's so cute how could you not?), but seriously?!  We keep our lawn cut, as do our neighbors, and we have one of those bug zapper things that is full of dead mosquitos each and every morning.  It's still not enough.  If anyone has ever wondered why we don't have a patio set, or sit outside EVER, this is why.  A pretty hefty breeze needs to be blowing for us to be out and about.

fgggdff  **That was our yellow lab nudging me.  I forgot to feed them this morning.  Hang on.

I feel bad that forgetting to feed the dogs has happened a lot recently.  I feel bad that the most common words I use with them are no, lay down, out, get, and go potty.  They don't get to play outside as much, due to AJ's schedule and, you guessed it, those darn mosquitos. I never understood why some people would "get rid" of their dog after having a child.  While I would never do that, I now understand it-to a point.  Trying to meet AJ's needs and all of our animals needs has become increasingly challenging.  It does not mean I don't love them or want them, because Lord knows we love our animals, but its a challenge having 4 animals and AJ. 

I'm hoping and praying it doesn't storm tonight.  Ever since the big storm a few weeks ago...I am terrified of storms.  I read someone's facebook post last night about the storm coming in and from that moment on could not calm down.  That big storm shook me to my core.  Jeremy did everything in his power to calm me down, but I was still distracted, looking out the window every 5 seconds until it got dark.   I really, really, really need some good sleep.

I just remembered I need to pick up that receipt from the optical store today.  Ugh.  For our flex spending this year, they gave us something called a Benny card.  Its really quite neat.  It has the amount you determined for your yearly flex spending, and you use it like a debit card.  Well, our card was suspended until we can provide an itemized receipt for AJ's lens in his glasses.  Really?  What else would I buy at an optical store people?  To say the optical store has been helpful, would be lying.

In the 2.75 mile stretch from AJ's therapy clinic to home today, I pulled over 5 times to put his glasses and ears back on.  I've had it.  I'll keep doing it until he gets the clue we keep these things on in the car.  While it would be great to have someone sit in the back and monitor him, I can't have someone doing that everyday, so that plan doesn't work. 

AJ's been extremely sassy this week. We've stopped rolling him on his back on the yoga ball because its reminded him of how it feels to hyperextend.  He's hyperextending all over the place and laughing/giggling to get out of work.  Sometimes he extends so hard his implants fall off-and he knows it-so he laughs.  I'm a very frustrated mom right now.  Its sooooo not funny.  His listening skills are out the window.    He's pushing buttons, and reaching for things despite the word "no" being used intensly.

Go ahead, laugh.  While you think its funny, I do not.

I'm thrilled AJ's doing so well with his Auditory Skills Development. Today was our 4th visit and of course, I tell her he's doing this wonderful skill, and he chooses not to do it.  Which is common, I know.  But this is AJ's pattern, and it has become increasingly frustrating when I say he can do something and no one believes me.  Oh, Auditory Skills Development.  ASD I call it.  What is it?  Its basically AV, but we can't call it AV since we aren't following all 10 of the principles.  He is doing AMAZINGLY well.  I'll blog about this more later.

Today was ASD, and like an idiot, I scheduled feeding therapy right after.  We left ASD late, and as I'm running across the parking lot putting AJ in the car, I'm calling the therapy clinic to tell them we'll be late, like 20 minutes late, and I know it will be a short session, thats ok, I'm ON MY WAY!  We arrive, and I learn that they had our appointment 15 minutes later than what was on my calendar, so we were ok anyhow.   We're there so much, they said I should work there.  Not only that, but I don't check in, they know me by name, and we just walk back to the bathroom when we need to.  Its very casual. I took AJ into the bathroom so he could go before he ate lunch with his feeding therapist, and of course, he starts whining.  He wants to skip the potty and go eat.  Understandable but at this point, the whining was annoying and I hit my limit. 

The tears welled up as I pushed my hands on the peach tile wall, closed my eyes, and recited the serenity prayer.  Moments like that and days like today are often too much to handle.  And it just doesn't stop. After a rockin' feeding session, which included some new "Torchin' Tamale" pringles, we came home and once the whining resumed, I put him down for a nap. 

I think I'm still reeling from AJ's appointment with his latest addition, an orthopedic surgeon earlier this week.  I wasn't nervous going in, since I know the man.  We all met in Guatemala.  You see, Jer and I adopted AJ at the same time his daughter and husband were adopting their son.  The boys were one bassinett away from each other until they came home.  This surgeon was there in his "Grandpa" role.  His daughter and I are good friends.  We have a unique friendship, in that we adopted "together".  Same country, same place, same country, same timing.  She's always had this zen about her, I wish I could possess for even just an hour.

AJ will be getting botox in his calf next week.  This decision was not made lightly, and was made by myself, AJ's CP doctor, and the orthopedic surgeon.   The botox isn't as big of a deal as I thought it was, which is where the whole "knowledge is power" thing comes into play.  Well do this, and see what happens.  AJ's not only got a foot thing going on, he's got a bone thing too.  Yep, you guessed it.  I'll blog more about this later.

Sseing the ortho took me back to Guatemala.  Where I was silently comparing our kids in the courtyard while simultaneously enjoying the fountain.  God, I will never forget the sound of that fountain...mixed with the robust sound of the city buses.  It made me wonder if he "knew" when he saw AJ that something was wrong.  It also flooded my mind with memories of what we thought would be, and that...has been hard.  In early August, AJ will have been home for 3 years.  When and how that happened, I don't know.  But this time of year is always celebratory, and yet still holds a sadness for Jeremy and I.  A sadness that no one else can understand but he and I.  A panic, a trauma, a love so deep for this child that only grew deeper as we began our journey into parenthood

We don't often see the CP world.  What do I mean?  Well, we are immersed more into the world of hearing loss than we are with CP.  So when I see another CP Mom, I watch her like a hawk and ask a billion questions.  In my head of course.  Her son was in his chair (which wasn't a wheelchair but not a stroller either) and the big/little (I'm not sure) was there with her.  Again, with the tears.  At Mom's gentle request, the brother started wheeling the other brother around so Mom could finish the paperwork.  We want so badly for AJ to have a sibling.  How wonderful it would be for him, and for that sibling.  I stifled my tears as I noticed AJ was playing with the toys that were set up in the waiting room.  Another momentus occassion.   He was enjoying himself.  I find myself never understanding why expanding our family has been and continues to be such a battle.  I've posted on this before, so I won't drone on about it.  But it does bring me a great deal of heartache, and seeing that Mom with another special needs child, + 1 was bittersweet.

We're torn between a rock and a hard place with school/therapy related things for AJ.  While I won't go into specifics, my mind is constantly swirling, thinking, and re-thinking.  I'm constantly thinking of things for him to do, to reach his goals, and surpass them, but our days are full of therapies, and sometimes, I'm just too damn tired.  I can't do it all.  And yes, I KNOW I CAN'T DO IT ALL.  But when you are constantly being told what he isn't doing, you feel a sense of responsibility to get him to that place, especially when you BELIEVE HE CAN.  That line, "He's where he is today because of you two, his parents," carries a lot of weight.  if we weren't advocating for him, I can imagine the comments that would come flying out of people's mouths.  AJ needs to be pushed.  Jeremy and I know, all too well, what happens when we don't push AJ.  Even things as simple as us forgetting to brush him in the morning, or not reading books at night.  All of those "simple" things mean so much more in AJ's world. 

AJ's world.  It terrifies me to think of what would happen to AJ if we weren't here. If something should happen to both of us, what would happen to AJ?  This question was one of the reasons we went to the Guardianship seminar a few months ago.  While it is too early to tell whether AJ will need a guardian at the age of 18+, we still need to have a plan in place, heaven forbid, anything happens to Jer and I. 

Drafting a will with young children is hard enough.  Drafting a will when you have a young child with special needs is even harder.  Who do you choose?  It is NOT as simple as just adding your brother's kids to your own brood.  And if the people you chose say "no", who else is on your "We'd like you to consider taking AJ should something happen to us."  How's that for a conversation over dinner?   Its something that has been weighing on my mind heavily, for a long time.   If the need arises, I want this to be as simple as possible.  I've read on special needs trusts, and all that jazz.  Frankly, its a bit much if you ask me.  If you have someone competent, and knows exactly what your wishes are, that sounds more simple and realistic to me.  Anyhow, its weighing on me.

The responsibility of being AJ's mother is weighing on me.  A lot.  I am tired, exhausted, crabby, ok bitchy if we are being honest.  My patience is slim to none and the slightest thing makes me annoyed and stressed out.  I don't want to drive across town for summer school, I don't want to drive to therapy.  I don't want to play the guessing game of trying to figure out how AJ is feeling or what he wants. I just don't wanna. Its been just short of three years of craziness, and I'm ready for a break.  We're ready for a break. 

Jeremy and I have decided to take a REAL vacation for our 10th Wedding Anniversary next year. We've loosely planned trips before.  Many trips.  None that ever came to fruition due to something with AJ.  A surgery, an unexpected cost for something AJ needed.  Always some reason it didn't happen.   It is also terribly difficult for Jeremy to take off of work.  I'm thinking with months notice in advance, it may, dare I say it, be easy for him to actually use his time off for a vacation? 

Where?  Somewhere farther than 1 hour away.  Somewhere by plane.  That's sunny.  And tropical, with fruity tropical drinks.  Relaxation and Rejuvination Central. Where we can sleep all day, or spend all day at the pool.  No hiking, skydiving,  or shopping for us.  We want to do NOTHING. Somewhere where the food made by someone else and the sunsets are so incredible you don't want them to end. Somewhere where my husband can swirl & twirl me as we dance in the sand on the beach.  Yeah. That's my kind of swirling & twirling.

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