Redefining Perfect

Six years ago I met her online.

Five and a half years ago we had our first phone call.

We’ve exchanged pictures and gifts. Talked about our husbands, our children. 

She was the first person my husband called when I went into the hospital in labor – or for surgery. 

I sat helpless miles away as she suffered through a difficult divorce.

She sat feeling just as helpless as I struggled with my children, their diagnoses, daily life.

Last week I took a last minute trip.  I packed in an hour, loaded all three kids into the truck and I drove.

For almost 700 miles we crossed four states to end up in Virginia. 

I stepped out of my truck and onto her front lawn and finally got to embrace my best friend. 

We hugged, laughed, talked, and cried.  She got to see my girls and play with them.  Our sons met and became fast and very close friends (as we expected them to). We sat two feet from each other and played on the computer, laughing and joking that we should log on and chat online at the same time.

My reasons for going no longer mattered as much as being there. With my friend.  Seeing that it isn’t the distant connection that keeps us close.  It is a real connection, and now been cemented by face to face contact, long hugs and comfortable silence.

I traveled almost seven hundred miles and felt just as at home as I do now.

Always my friend.  Always my sister.  Now more “real” then ever.

There is nothing I can write.

Not at the moment.

There is too much.

It can’t be said here. It can’t be said there.

I am on a trip.  I’m visiting my best friend Jess.  We are meeting for the first time and that is wonderful…but the reasons behind it are too heavy to divulge right now.

I will be back. Soon. I will be posting.

Eventually it will come out, but for now when I return the posts will focus on the joy of this trip and my children. 

The rest will wait until I am in a better place to explain my absence.

I have not forgotten you. I just cannot put into words where I am. Or I could, but I won’t. This isn’t the place for it. It isn’t the time for it.

Please forgive me this brief break of posting that I had this week. The events were coming for a while, but hit suddenly as all things do.

I hope to return by Monday if I’m recovered from my long drive home on Sunday. If not, Tuesday. Then you will be able to see and hear of the joy I have felt in being here in this place, surrounded by the love of a dear friend that I have known online for six years – but have just now met face to face this week.

Until then.

Angel had her go-round with the Developmental Pediatrician on Monday. Avoiding discussion of the horror of a day surrounding said appointment, I’ll get right into the actual facts and (lack of) diagnosis!

The short of it – we may never know what causes our little one to struggle.  It may be that she was born so early, or just a quirk in her brain that makes her crooked physically and mentally. 

However, that won’t stop us from a) looking for a cause and b) getting her all the help she needs.

To that end, the Ped did see her unevenness in her gait (we walked and/or ran down a long hall to display), and tone.  She again listened and heard all I had to say on everything we’ve been through the past couple of years with her.  She gave advice and took a good look over her, just as she had with Riley.

Her solutions here were a little more complex, but not by much.

1. We are doing an MRI on her brain.  Taking a good hard look to be sure that there is nothing specific or noteworthy that could have caused this.

2. We are doing a full-run genetic test. AFter a pre-approval by her dual insurance plans, of course. 

Why are we doing these?  Because the ped recognized that almost as much as we want to learn the HOW’s of Angel’s issues…we also would like to know WHY’s.  She said that while it is likely just her early birth date, we should exhaust the remaining bit of question.

And onto the HOW’s…

1. Restarting Speech Therapy
2. Restarting Occupational Therapy
3. Having a psychological exam done to determine need for Behavioral Therapy
4. Returning to the Feeding specialist for  monthly visits
5. Restarting Physical Therapy

All of this will be done at Riley Hospital, and all should be covered by insurance (if not primary, then secondary) as part of her diagnosed issues.  Thank goodness for Indiana’s wonderful Special Needs insurance (now if only we could get Riley qualified for it *sigh*)…it has saved us more than I can ever say.

And that is where we stand now.  Therapy, therapy…and more therapy.  I’ll be doing a bit more traveling once it all gets started…but if it helps, it’s all worth it.

All taken w/ Canon Rebel XTi. All SOOC.

Beautiful Disgrace:

Making Magic:

Color to draw the eye:

Color to draw the ear:

Color to draw the mind:

The rarely seen self-portrait:
(taken in window, and taken because I knew it would be softer/muted/fuzzy)

That’s it for this week!  Check out more amazing winners over at Lotus’!!

And if you’re curious, the reason that gorgeous cheesecake picture has the title it does is because it was the worlds most beautiful cheesecake but because I had make it in a larger pan than I was used to I’d undercooked it…so it was gorgeous, but ultimately inedible.

Last year I was afraid to try again.

Five months ago I took the leap.

Four months ago I was afraid to hope, but felt it creeping in.

Today was the big day.  Technically it was the FIRST of TWO big days.  We met with the Developmental Pediatrician. It was a scant hope, but it was my last ditch effort. The final specialist in a long line of specialists and the last thread of hope in a dim and dismal heart.

I got up and the crack-of-dawn o’clock and hopped in the shower.  I got the girls dressed (In-Laws were sick so the 1 child at a time ruling had to be abandoned), fed and in the car.  Along the way I stopped and used my gift card from the Moms Marbles twitter party last month (thanks, ladies I loved my mocha!!) at Starbucks and we headed up to the North Side of the city.  We arrived perfectly on time and headed back for Riley’s appointment at the exact time we were supposed to be in.

And we waited.  and waited. and waited.  30 minutes later the nurse popped in to tell us the doctor had gone to the wrong office. So we waited another 30 minutes and the doctor showed up.

It was worth the wait.  It was worth the 4 months it took to get into her office to even see her.  It was worth the hour wait.  Why?

For an hour and a half – a FULL 90 minutes – she sat in that room.  She never left. She sat there.  She listened.  She talked.  She HEARD me. After years of frustration and fears…to be HEARD…that is the most joyous part of it.

She looked over Riley – took a full history asked many many questions – questions not even I could remember the answers to.

We have confirmations, we have suggestions…we are feeling hope.

I go back on Monday with Angel.  At that point the doctor will give me a list of items from today’s visit where she’ll write down EVERYTHING we discussed today.  Suggestions for therapies, help for insurance/assistance, suggestions and numbers for groups not just to support Riley (and Angel when it’s her turn) – but to help US cope.  The adults. 

Do we now have all the answers?  Heavens, no.  But this doctor is helping us define a path.  For each girl, individually.  She is listening to us. 

And that…that is the most wonderful thing in the world.

In the morning when you rise
I bless the sun, I bless the skies
I bless your lips, I bless your eyes
My blessing goes with you

In the nighttime when you sleep
Oh I bless you while a watch I keep
As you lie in slumber deep
My blessing goes with you

This is my prayer for you
There for you, ever true
Each, every day for you
In everything you do

And when you come to me
And hold me close to you
I bless you
And you bless me, too

When your weary heart is tired
If the world would leave you uninspired
When nothing more of love’s desired
My blessing goes with you

When the storms of life are strong
When you’re wounded, when you don’t belong
When you no longer hear my song
My blessing goes with you

This is my prayer for you
There for you, ever true
Each, every day for you
In everything you do

And when you come to me
And hold me close to you
I bless you
And you bless me, too

I bless you
And you bless me, too

~Celtic Woman – The Blessing

(Day one of NaBloPoMo and I’m already cheating…but really, the song called to me…I thought the words were beautiful…so I tied in some pictures of my wonderful family…what better way to start a month of posts?)

Until now I’ve been happy with our school system. Brandon has thrived and learned and had his intelligence recognized.  Not one thing has given us pause when it’s come to his schooling. The girls were a different matter – but with Brandon we’ve not had problems…

Yesterday became the day – the first time I had to really sit back and wonder at things.  I became very disappointed in the school’s handling of a situation that affected me, my son, my husband. 

Brandon blacked out in school. We don’t know why. We don’t know how. We only know that it was for a couple of minutes, and that it improved after he ate lunch.

We never had a chance to get him and take him to the doctor when it would have been effective. We didn’t even know it happened.  Why?

They called us – twice. Once on the home phone and left a message (I was in the bathroom – heard phone ring but not the answering machine).  Once on my cell phone (which had a dead battery).

Did they call ANY other number on our emergency number list?

Did they call Archie? My mother? My father?

No.

They didn’t even LOOK at his emergency card. They asked HIM for the numbers (he doesn’t have all of those memorized!)!! 

They did not try to call the home number again. At all.

It wasn’t until I happened to glance at our answering machine 4 hours after the initial phone call that I found out.

Meanwhile Brandon spent at least 30 minutes in the nurses office freaking out over what had happened to him and he had no one to comfort him but a school nurse.  I live two minutes from the school I could have picked him up and had him at the doctors office (another 3 minutes away) in no time.

By the time I found out he’d finished the entire school day.

Archie and I are NOT happy.  We are trying to decide how best to address this with the school.  It was handled exceptionally poorly and we are nowhere near okay with it at all.