Crappy Week

This last week has tanked.  In a big way.  It seemed like life waited and dumped all the crap it could on me at once.

We started out last Sunday with Cary feeling crummy.  She has a pretty high pain threshold but something was off she cried and wailed and I ended up having to rush her home from church and Sunday school.  After a big dose of ibuprofen we made it though the day.  She had a rocky night and I rushed her to the doctor to find out that her ear infection is still there.  We started round two of antibiotics.  I also had to cancel her therapies for the week.  Cary was just too sick and unhappy.  Rare for my little one.

We made it through Tuesday and she seemed to be rebounding so I decided to keep her hearing testing on track.  We went down to Staunton on Wednesday to do another round of tests.  The results weren't good.  We are looking at hearing loss.  How much we don't know.  We also are unsure if it is because of her infections or if it is more sinister.  I got to the car with her and cried.

On Thursday we went back to the pediatrician to find out that the antibiotics aren't doing anything and her infection is still there.  We go back this week to see what to do next.  I also made an appointment for ANOTHER specialist.  An ent and an audiologist.  Fun fun fun.

I also found out Cary needs some adaptive toys to help her out. Adaptive toys are not cheap.  I no longer am employed and we live off of one income.  These toys would help her out with her development, but the cost is unreal.

Cary has also been refusing solids.  I have to put them in her bottle to get them down her at all.

To end the week Marvin and I got some sort of GI bug that has had us feeling not great.  I will spare you the details.  You're welcome.

Like the proverbial toddler I just want to met down and have a tantrum and throw things.  Scream.  I understand that things will not always go great, but really?  All at once?  It is so frustrating and feels very overwhelming.

There have been a few bright spots that have make this week somewhat livable..  We have a great team at VCU who moved heaven and earth to get me in soon.  When I posted on my facebook page about needing adaptive toys friends came forward with suggestions that I am following through on.  We got to a fish fry and be with friends.  True I didn't win a quilt I had my eye on but I got a funky new piece of furniture at the action.  I am still deciding what it is going to be.  Long story, did I mention it was unusual?

This week begins a little calmer, but I don't expect it to stay that way for long.  We have had a bunch of changes and early intervention is out of compliance with my IFSP.  I expect it to get ugly with my vision provider and the head office.  I will be calling for a meeting and an overhaul my IFSP.  Oh joy.

We are also expecting snow.  Not that that is a bad thing, but I am kind of ready for spring.  I am tired of sick children.  Ready to be outside a bit more.

I know things will get better and that these things will pass, but I am impatient and want them done now!

Life goes in cycles.  There are good ones and bad ones.  We are just stuck on a bad one now.  I march on through this, grimly determined to see it through and ready and waiting for a good cycle.

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.

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.

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.

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.

The tying and breaking of binds

My adoption journey has never been a simple path.  It seems like when my parents took that same journey many years ago, they went in, requested kids, had a visit or two, and whamo two little girls came into their home.  Easy peasy right?

For us we have dealt with social workers, classes that tell you your kid will have issues, foster families, and a system so broken that it seems like it just should be scrapped and someone should come up with a whole new one.  Roller coaster days and nights.

But never in all this mess did I have to worry about bio parents.  Until last Wednesday.  Last Wednesday I took my anger, resentment, hostility, and fear to court.  My social worker had sent me soothing e-mails about what a good Christian I was and that she was sure I would treat Cary's bio family with compassion.  But I alas, am very flawed.  I didn't feel compassion.  Many other things, but compassion, not so much.

Our case was at ten so naturally we didn't get into the court room until 12:30.  Thankfully I had support that day.  A friend of mine came and sat with me and kept me talking and thinking about other things.  Plus she brought chocolate! I don't know if she will ever know how much that meant to me.  It meant everything just to think about normal stuff.  Plus my rocking mother in law came along.  She kept Shannon distracted.  Not that he seemed remotely phased.  Only his wife was coming unglued.  I had requested sedation, but everyone thought I was being funny.

When we went in my friend came with me.  The bio family has a few other children outside of Cary.  When bio mom and dad came into court I found myself looking at them.  They were both in handcuffs. Bio Mom was petite and had traces of prettiness that jail was working hard to take away.  She turned and mouthed "I love you and it's O.K. " to a woman who sat weeping behind me.  I am sure it was her mom.  Bio dad was tall and slender.  I could see where Cary got a lot of her looks from.  She has his hair, his face, and eyes.

The first part of was sad.  Their first child was set free to be loved by another family.  The bio family sat behind me and wept.  I felt for them.  Then they all cleared out.  It was as if Cary did not even exist for them.  Fine with me.  I was so keyed up by then I was sure I was going to puke on Shannon or my friend.  I also wanted to yell at bio mom and dad.  Or faint.  I was a mess.  I thought about shoving some of that chocolate in my mouth, but I am sure that would have been frowned upon.

The judge commended the bio family on signing over their rights.  All parties agreed that the minor was doing well and she was in a family that was willing to adopt her with all of her issues.  It was going great, the end was coming, and the papers were going to be signed.  It was a great feeling.  I was also holding it together and not bringing shame upon our area of the court room.

Then bio mom turned around.  She looked at me.  She looked right at me.  I don't know how she knew who I was but she did.  She mouthed two word at me.  Just two.  Thank you.  And she meant it.  She willingly gave up her child.  She released her child to people she does not know and she knows that she will never see her again.  She broke her bond to let Cary have a chance at a good life and a happy home.  The breaking of one family for the creation of a new one.

I was able to let go at that point.  I mouthed "thank you" back at her and I cried.  Hard.  I was pretty sure they were ready to check me into a mental home, but I didn't care.  Bio parents were cuffed and sent back to jail.  We walked out. I left my bad feelings in the court room.  There just isn't room inside of me for them any more.

We are now free to move forward.  To make plans, have hope, and dream dreams.  I am ready.  So very ready.

The Good, the bad, and the downright annoying

I was hoping to post a little later on today, but Marvin's school decided that it needed to close at 1pm due to the impending doom of snow.  Really?  I remember growing up in the Midwest.  We WENT to school.  In snow.  In rain.  In fog.  And no, I did not walk uphill 3 miles both ways in a raging blizzard.  I got a ride.

So another week of doctors and drama. I feel like sometimes I live in a soap opera and all I want to do is turn it off and crawl under the covers.  But since life doesn't work like that I have to roll with it.  I must say that lately I have been rolling a lot better.  I think it has to do with my goals from my previous post.  I have been working on them and it has improved my attitude in general.  That and all the love and support around me.  It has helped.  More than most people realize.

On the good note Marvin is having a fantastic kindergarten year.  I would never have guessed.  Being the Montessori snob that I am I had pooh poohed public school and really thought that we were all that and a bag of chips.  I would have to say that I also did not display an appropriate attitude towards other forms of learning.  Thankfully, I have had a much needed attitude adjustment.  Marvin's teacher is the most amazing woman who has taken time, shown love, and kindled Marvin's fire for learning.  She is amazing.  Wonderful.  Perfect for my child.  Plus she has been so super with our family.  I want to take her home with me:).  And I get to abdicate from being his teacher.  No more power struggles with that.  It has improved our relationship tenfold.  I still love Montessori, but  have become more open to other options.

Another good thing is that Cary Lynn has had no sign of seizure activity.  She grows, she eats, she poops, and is generally a very happy baby.  As I am typing this she is in her pink bouncy seat banging on her toys and going "MMMM MMMM MMMM."   Which is Cary talk for life is good and I am soooo stinkin happy!

On the bad notes the termination of parental rights is around the corner.  Everyone expects good things, but it ties my stomach up in knots.  My social worker said that we are "kind Christian people that will be compassionate towards the family and show love to them."  Now I am going to be honest.  I do feel pity toward them.  But love??  That is something I am working on along with forgiveness.  I don't think I will be in court holding hands and singing campfire songs with them just yet.  Give me time.  This is a process.  I have to go through it a bit at a time.  Plus, I am now annoyed with my social worker so now I have something else to work on.

We also found out that Cary Lynn has abnormal growth patterns.  She is low on her growth hormones.  Not tragically bad, just the low end of normal.  Endocrine does not need to see her until July, so I am not letting that bother me for the time being.

On the downright annoying note the award goes to Cary's GI doctor.  I bring in a chubby 17 pound baby and he has the nerve to tell me she has not gained enough.  After thoroughly worrying the snot out of me about getting her a button for tubal feedings and telling me she needs to eat more, go on Pediasure, but she is refluxing because she was eating too much, and by the way good job mom I went out to the parking lot, got in my car and screamed.  Then I felt better.  Then I got smart and called the feeding clinic.

After a panicked call, the nutritional counselor assured me that Cary was just fine.  Her weight gain is great.  That GI doctors get special pleasure out of bringing doom and gloom into our lives.  I also got the calories she needed daily, grams of protein needed, and all sorts of good advice.  I felt better.

So now I can pick up and continue in the soap opera of life. Stayed tuned for next week's episode about the TPR trial:).