My Family

My Family

Sunday, February 24, 2013

Now and Then

We reached a milestone recently.  Sitting in Cary's social worker's office we signed papers to put into motion an adoption petition.  Six months have passed.  I talked about how different our daughter looks now.  See for yourself.

This is our first meeting of our little peanut.  See how tiny and bald she is:).

Wow!  Here she is now.  Note the hair:)

What a difference.  But she is not the only one who has changed.  I have changed.  Often I don't recognize who I was before.

Lots of things changed me.  The first was pre-Cary.  I had a difference of opinion on how a new program was to happen.  I spoke about my concerns.  I begged people to hear me out.  Instead I was rudely told that I needed to follow leadership and if I didn't like it just leave and whatever you do don't make waves.  Leadership knows best.  Let's just say I was shocked.  Hurt, betrayed.  This was a place I took Marvin.  A family place.  All I wanted was to be heard.  So we left.  But I do owe them something.  They woke up a part of me.  A sleeping part.  I like everyone to get along, hold hands, and sing.  I HATE CONFRONTATION.  But I also realized that people who don't ask questions, research, and follow blindly are never going to grow.  So I am very thankful.  They helped me more than they realize.  They helped me be a better mom to my children and a stronger advocate for them.

Other changes have occurred as well.  I don't think twice about having a zillion doctor's appointments a week.  It used to drag me down.  But now I just pack a snack, tea, and water (oh and Cary, too!) and we head out.  The people at VCU know us.  At Au Bon Pan (French for very expensive and tasty) they ask how Marvin is while I pay for coffee.  At Einstein's they know what I order and they love Cary.  I also have to stop at the gift shop to say hi to a worker when she is there so she can pinch Cary's cheeks and tickle her nose.  These are my realities and I find myself enjoying them.  Finding the humor in them.  Taking time to find the good instead of dwelling on another visit.

I also find that I have to speak up.  Loudly.  I am not afraid to argue with doctors.  I do research, ask questions, do more research and ask more questions.  I used to worry that I would upset them and go meekly along.  Let me tell you, meek gets you jack squat.  The doctor's like me, respect me, and at the heart of it we all want what is best for Cary.  I am stronger than I knew I could be, smarter than I knew I could be, and really loud (but I already knew that:) ).

The last thing I noticed was today.  You see right now I should be in church.  But Cary started acting funny.  By that I mean crying and pulling her ear and saying ow while being generally inconsolable.  It could be her ear infection has returned.  My original plan was to have Shannon rock her while I ran my Sunday school class.  A nice person offered to stay so I could get Cary home and throw some ibuprofen in her.  The old Amy would have been in a flap over all this.  The new Amy felt guilty for five seconds over leaving her class and ran home.  I go with the flow more easily now.  I don't let these things ruin my life.  I went home, threw some ibuprofen in her and since I will probably be at the doctor's tomorrow again put some laundry in the wash and did my blogging in case I don't get to it tomorrow.  Cary is sleeping and wants to be left alone.  I get that.

So I have grown and changed.  It is taking me a while to get used to the new Amy.  I miss the old me on occasion, but the new me is stronger, smarter, and so much more capable than the old me that I think I am better off this way.  Happier and a stronger advocate for my family and their needs.

Tuesday, February 12, 2013

The Other One

So I noticed lately that my posts have been very Cary centered.  Cary takes up a good chunk of time and I love giving it to her, but I have TWO children.  Both have special needs and both are so important to me.

A lot of people have been asking about Marvin.  How is he?  What's he up to?  Does he still wear the glasses?

Marvin has his moments, but all in all, I couldn't ask for a better brother for Cary.  He is patient with her, involves her in his play, and most of all just loves her.

Here he is.  I think I posted this picture already, but I just love it.  He is so awesome with her!

Marvin also continues to thrive in school.  Who would have thought that the die hard Montessori teacher would be eating crow and saying how much she enjoys public school.  At least this one.  Marvin has blossomed this year!  He does well in class and now that I am not his teacher, our relationship is so much better.  It was hard being teacher and mommy.  I was not always enthusiastic about the role, but it had good parts to it.  This year his teacher is an awesome woman who works her  tooshie off to make sure the children learn, grow, and have fun.

As V-day was rapidly approaching I broached the subject of cards.  Marvin and I have been making homemade cards for years now.  It started out with the fact that he just didn't like store bought cards. So when he was the only child I humored him and we had fun making them.  But this year I just didn't feel like I had the energy or desire to do so.  So when I started talking about buying them his face fell and the lower lip started quivering.  So I caved.  And I ended up being glad I did.

Now here is my little disclaimer before I go on with the story.  I AM NOT trying to say that you SHOULD make homemade Valentines or that what we did is superior.  We always make our cards and bake goodies for the teacher.  It is a special thing for us.  It does not mean that I have tons of time on my hands either.  I probably have less than you:).  In fact while we were doing this I had laundry piled all over the place, the rabbit cage needed cleaning, and my bathrooms were a disaster.  But spending time with Marvin is precious so I took a breath, closed the bathroom doors, and let it go.  I guess I would rather say that I spent time making memories and special things for people we care about than saying I cleaned pee.

Now that I have rambled on long enough about that, back to the original story.  Marvin and I gathered rocks, paper, glue, and glitter.  Say what??  Well we took the idea from the Artful Parent.  Plus with a five year old anything involving rocks and glitter is fun.

 First we cut out the hearts and added glitter.  We put in the child's name so it read "Chris you rock."  Aha, now you may see why we need rocks:).

 So here is Marvin painting glue on rocks and glittering them up.

 Here are the rocks.  He had fun and I will be cleaning glitter out of my kitchen until the end of time.

Here is the finished product.  It isn't mushy, Marvin is not into mush.  Plus he says you can keep a rock forever, candy is gone until you poop it out.  (Did I mention he is not into mush?)

He also insisted that his teacher get the biggest rock.  What teacher hasn't wanted a giant rock to throw at things when you get aggravated  hold papers down with.  We also made her cookies in case she is not into rocks.  Which means I will be hauling everything to school tomorrow (Cary has a doctors appointment Thursday).  I did mention less time somewhere, didn't I?

But in the end it was worth it.  Spending time with Marvin doing something we both love makes it worth it.  I feel like sometimes he gets the short end of the stick and I don't get the quality time that I would like with him.  He is such a great kid that he never complains, but I don't want him to be resentful of his sister so I grab these moments when I can and leave the pee for another time.

Tuesday, February 5, 2013

Seizure Watch

It has been a long two days but we are back home now.  I don't like hospital stays, but at least this one was planned verses surprise, you are going to the hospital!

We checked in at noon and in 15 minutes we were in our room.  Then the fun started.  First I signed my life away stating that I would be videoed non stop.  Then the hook up guy came.  It was awful.  The glue they used gave Cary and I an epoxy high.  This is my little one all hooked up.

She is pretty happy.  Here is a picture of her "tail" of wires she is attached to.

We were well wired.  She could travel to about 2 feet away from her bed so I brought her pink chair so she could at least have something different to do.  I also brought 2 giant duffel bags, one suitcase, and Cary's medical binder and my laptop loaded with a new Solitaire game.  I figured that I was going to be well prepared this time.  In the Epilepsy Monitoring Unit or EMU for short, a parent has to be with the child at all times unless a nurse has pity on you and lets you leave for food.  Otherwise you have to eat what they bring you from the cafeteria and that is not pretty.  So I was set.

It was still hard.  And scary.  Every time a new nurse came in they asked the same questions over and over.  I asked a lot of questions too.  They were pretty surprised that I was only there for 24 hours and that Cary was not having massive seizures.  They were also surprised that I was doing PT, Speech and vision therapies.  What was I supposed to do, sit around and fret?  They did state that they wanted her to do "normal" activities.  These are normal.

I'm not complaining.  The nurses were great!  I loved Donna.  She reminded me of one of my friends.  She was soothing, funny, and very matter of fact.  Plus she let me go get good food.  She spoiled Cary shamelessly.  Cary was into Donna too.  She put on her happiest act for her.  Then Marvin and Shannon came by.

Cary loves Marvin!  Marvin was a little upset seeing her like this and it is really hard to explain this stuff to him in simple non-scary terms.  I think we did O.K.  He cried when he had to leave, so of course I cried.  I hated not being home.

After a night that involved 3 hours of sleep, Cary decided playing with the night nurse was more fun, I was up and ready to get some answers.  I met with the neuro doctor and the results were in.  Drumroll.......   Cary has abnormal brain activity.  Yup.  Not a seizure in sight.  I was slightly annoyed about wasting time in the EMU for something I already knew, but I was mostly relieved.  Now Cary is still at a high seizure risk and still requires monitoring, but it looks like for now we get to skip new treatments.   I am so thankful.  And relieved.

So we came home today.  Cary's hair is a greasy gluey mess.

It will take several (thousand) washes to get all the gunk out.  I scrubbed hard.  You can't see from the pictures but she has red "burn" marks left from the leads.  They will take time to heal.  Poor baby.

But we are home.  No meds for the time being and the only thing Cary got from monitoring was a cold.  We can deal with that.  Bed is going to feel great tonight!  Or after I post this:).  Most of all I am grateful that this is one bullet we have managed to dodge for the time being.

Saturday, February 2, 2013

Abnormal is our normal

I hear people say all the time that they wish that things were just normal.  I have long ago given up and decided that normal simply does not exist.  Or if it does, it is just going to elude me forever.  But I don't mind.  To me normal is vanilla.  Plain, same old, and boring.  It's the path that people choose and then complain about things being the same all of the time.

Our lives, even before Cary, were very topsy turvey and we liked it that way.  My husband and I both are strongly opinionated (stubborn to most), live out loud people.  We like it that way.  It makes us stronger advocates for our children and teaches them to be strong people as well.

My weeks are never the same.  This last week my parents flew in from Colorado.  My kids loved it.  I saw Marvin for a whole 20 minutes this last week.  He was in heaven playing swords, trains, bear hunting, and any activity that involved movement.  I think my dad needs a vacation from his vacation.

Cary and I also made another journey to Staunton and were able to have another round of hearing tests done on Cary.  Even though they tell me things are great and we don't have the whole picture yet, I am pretty sure she has some mild hearing loss in her right ear.  That is what all the testing is pointing to.  It makes sense as the right side of her body has more damage to it.  Her right eye, I believe, is about useless, her right limbs are weaker, so it makes sense her ear has damage.  But it is still a hard pill to swallow.  My husband insists we all have hearing loss, but because Cary's language skills are emerging, not established, any hearing loss can make learning the native tongue harder.  I hate that she has so many problems already.  The poor kid needs a break!

But the school is wonderful.  Kathy and Casey are a breath of fresh air to me.  They have done more with Cary than my vision lady has ever done and in less time!  Kathy put me in touch with people who will help Cary get braille books.  I am so exited about this!!  I am also eager to learn braille and teach it to Marvin.  Making little bumps into words and teaching my daughter to read with her fingers will be an amazing experience.  It's the teacher in me.  Every time one of my students would put sounds together and make a word and then realize they could make a words was a high for both of us!   I can't wait to do this with Cary.  Granted, she is a bit young, but I already feel that the more she is exposed to now, the easier it will be later for her.  And reading is something we love so I am eager to share it in a new format.  She loves books and we spend time reading now, but this will be a new and amazing journey for both of us.

On the journey topic, we will journey back to MCV/VCU for our seizure watch.  I go in Monday and stay until Tuesday.  I am not excited about this.  I will be stuck in the hospital again with crummy food, cooped up while Cary is hooked to wires, and generally bored, anxious, and probably cranky from having to sleep in an ice cold room with a skinny blanket and chair.  Plus, I am just sad about this one.  My husband's grandfather passed away and the funeral is Monday.  I wanted to go badly, but when I called in to see about changing the visit the nero was less than pleased.  They feel like I have put it off long enough and he tried to guilt me into feeling like I was a bad parent for even entertaining the request.  So I got rather irritated and suggested that if his family passed away perhaps he should still come to work because that was more important.  He got the message. Loud and clear.  I got an apology and we were both nicer at that point.  He pointed out some findings on Cary's previous test and just said he was uncomfortable and really wanted her in.  So we will be in.  Sometimes it is hard making choices.  But somehow we muddle through.

All this in a week's span.  You can see why abnormal is our normal.  And frankly, I wouldn't have it any other way.