Waiting...

We're still waiting for the final results of the Monkey's MRI... not very patiently might I add, but waiting all the same.  There were preliminary findings that showed thinning of the Corpus Callosum.  The corpus callosum connects the left and right hemispheres of the brain.  It controls all the communication between each hemisphere.  As of right now we are still unsure if the thinning is a new development or something that has been present since birth (which would be more typical and not progressive).  The Monkey's neurologist is working with a pediatric neuro radiologist and will be reviewing all previous scans and comparing them with the one done last week... he is working really hard to get this done quickly, hopefully it happens sooner rather than later.

I am really trying not to get too carried away with some of the jumps that could be made here but it's hard... for me at least, to step back and be patient... to not get carried away.  

Next week the Monkey will have an EEG... I am so not looking forward to that.  It must be done sleep deprived, aka. cranky, and although it isn't painful, it definitely creates some discomfort and aggravation.  About 24 electrodes will be placed all over his head and are adhered with a toothpaste like gel.  Because they are trying to stimulate a seizure different activities are required.  They will try to get him to hyperventilate by continuously blowing on a pinwheel, they will also use a strobe light, and other visual seizure inducing activities.  Then after all of that they will ask him to go to sleep... which will not happen so they will continuously come into the room to tell him to "just try to sleep".  Is it me or does that sound ludicrous to you too?  

Thankfully these things don't really need to be done more than every year so he'll be all set for awhile now.  He has started complaining about all the appointments lately.  He's made several comments that he doesn't want to go to the hospital any more... kind of heartbreaking.  

Beautiful Day...

Good Morning Beautiful...

Yes, I listen to country music sometimes... it's a guilty pleasure.  We'll blame it on all the time I spent in Texas and Wisconsin.  ;)  I will actually listen to just about any music, as long as the lyrics resonate with me then I'll probably like it.  I find myself singing the song above often... it's such a sweet way to start the day, even though ours never seem to start as peaceful as that.  It's typically one of the kids or possibly even the dog or cats eyes I'm staring into, it's perfect to me though... it's the life I've always wanted... it's being a family.

We are a big music family... none of us can play a lick and, contrary to some beliefs, none of us can carry a tune either, but we always have something playing in the background.  You should see me dancing all over the kitchen while I cook dinner... the kids are all equal amounts of horrified and itching to join in.  Music prompts some of my happiest memories and has put words to some of my saddest times as well... I love having a soundtrack to my life.  Which reminds me, I just found the greatest app!  Our iPod was recently stolen and then a week later my phone got wet and died.  I was having withdrawals from my playlist but I just found out that DoubleTwist will sync everything from iTunes onto my new Android phone, amazing!  I am so excited!  We won't talk about how long it's taking me to figure out this new phone though... embarrassing.  Apple products really are so intuitive that everything else seems tricky... to me.  ;)  Now Android just needs to push out their Pinterest App and I'll be a happy camper.

Speaking of Pinterest (like how I can segue from just about anything to Pinterest.) all my recipes for the Super Bowl were found scouring that site.  I have to share... they all look fantastic!

Ham and Cheese Sliders 

 

Loaded Baked Potato Dip

Cheddar Bacon Ranch Pulls

you've seen this one before but it's totally worth repeating

Chubby Hubby Truffles

subbing the PB w/ Sunbutter

and, lastly, my very own Chocolate Chocolate Cupcakes.

(I am clearly not a photographer but they'll taste fantastic!)

Ok, after looking at the line up I'm thinking I had better make a salad!  We're all going to be in a carb coma after this.  Maybe beer will help?

Enjoy the game, if you're so inclined, and, if not, do like me and just enjoy the company.  I feel it would be sacrilegious to not throw in a GO PATS though! 

Strength

Have you ever felt so much pride in someone it was actually palpable?  The kids do lots of things that make me proud... the positive choices they make, effort put into school work, selfless actions they do for others, there are many times when I feel pride in my children but yesterday was different.  I was amazed, in awe.

The Monkey's MRI was scheduled for 11:30, we arrived a few minutes early to check in and got comfortable in the waiting room... for an hour and a half.  Now, that's a long time for anyone to wait, never mind a 7 year old that is feeling anxious about what's coming.  A friend of a friend came out to check on us and talked to the Monkey for quite some time, explaining things and making small talk.  He was much more relaxed after and I was so thankful.  We played lots of games and the Monkey was doing well... I was pretty confident that he was going to come out of this with shining colors.

Once we were called in and walked down the long hallway to the MRI room everything changed.  I'm pretty sure it was a combination of lots of different things but all in all it was an assault on every. single. one. of his senses.  Between the smell in the room (you know, that hospital smell) which triggered memories of all his other visits, to the sheer size of the machine, and everything else, my poor sweet boy lost it.  He was begging that they allow him to come back another day and promised he wouldn't be upset next time, he kept saying he just couldn't do it today.  He was getting more and more anxious by the second and really seemed unable to hear or at least focus on what I was saying.  Within less than 5 minutes he was in a full blown panic attack.  The Monkey was sweating, heart pounding, hardly able to catch his breath, and in such obvious emotional and physical distress... it was heart wrenching.  He turned to run out of the room and his legs were barely able to carry him.  (If you have ever had an anxiety attack you know how debilitating they care be and how scary the symptoms are, especially when you don't know what's happening to you.  If you haven't click this... anxiety attack)

I brought him into the bathroom and tried to calm him down.  We did some deep breathing and lots of deep pressure to try to bring him back.  He calmed a bit and I was able to talk to him about how having the MRI while awake was scary but so much better than being sedated and then admitted for 24-48 hours.  My little Monkey agreed immediately.  I also explained that it was his choice, it had to be done at some point, but whether it happened at that moment or not was his choice.  When I was confident that he understood he was in control, that there was nothing in that room that could touch him, hurt him, or put him to sleep, and that I would be with him and in his view the entire time, we tried again.

This time he allowed me to lay on the table with the mask or cage, whatever it's called, over my face and be put in the tube, all the while I was telling him that nothing hurt and he was going to be ok.  Once he couldn't see my face he wanted me out immediately.  We left the room one more time and I told him again that it was his choice but that I also knew he could do it.  I told him how I hated to see him sedated when he didn't need to be and that I wanted him to be home... to be happy and playing, not having to stay at the hospital.  Something clicked and he agreed immediately.  His resolve was tangible.  The change in his posture, his expression... it was amazing, he's amazing.

He marched back into that room, let me lay him down on the table and held still for the entire scan!  He had tears in his eyes, his heart was pounding, and he had me lay across his legs holding onto his hands the entire time but he did it and it was the biggest display of strength and bravery I have ever seen.  My little Monkey went from a full blown panic attack to completing a full MRI.  He amazes me.  He humbles me.  I have never been prouder in my life.

We are blessed

What a day... seriously!  I don't think I could possibly do another thing even if I wanted too.  I actually sat there with iCarly on for an entire show and just realized I could have changed it... the kids have been sleeping since 7:30!

The day started with our usual craziness... me getting 6 kids feed, 5 dressed and ready, and 7 out the door.  Insanity before 8:30am!   Mornings have forced me to become a drill sergeant.  LOL!

The Princess had her kindergarten assessment first thing this morning.  Things went well, relatively speaking... we've had some concerns about her progress over the past year and I was able to address that with the director today.  I have been watching her closely and have been extra diligent with working on things with her.  Over the past couple months though, it became clear that she wasn't progressing as she should be.  I spoke to our fantastic pediatrician and also discussed things further with the Monkey's neurologist and it seems to be more than likely that the Princess has the same learning disabilities as her brother.  Add that to the anxiety that they both share and I knew I had better get her IEP in place before school even started.  The Director agreed, (she had also worked with Nicholas for several years and immediately saw the similarities) we have our first IEP meeting for her in just over a week.

I am worried for her but also so thankful that we have such a wonderful support team in place.  As hard as it is to think we will have to do this all over again it's also old hat at this point and there is some sort of comfort in that.  Don't get me wrong... it's heartbreaking, but I think I've always known.  They are so close and love each other so much it's almost poetic that they would go through this together too...
 
The realization hit me a couple weeks ago, the one that comes when you know your world had been changing but you hadn't truly grasped the gravity of it yet.  I was going to have to watch another one of my children struggle through things that most take for granted.  Her life wasn't going to be easy either... It's was a staggering moment.  The Princess will have to work harder than most, she will have to be taught and retaught and taught again, just like each day is the first time she's being presented with the information... just like her brother, but she will eventually learn each new task and we will rejoice and celebrate with her.  She will be so proud of herself because she will have really worked for it... and we will be even prouder.

The Monkey's MRI was today as well... it was hard for him in the beginning but ended up going pretty well.  Thank you for all your kind words and prayers!  I will fill you all in on it tomorrow when my eyes will keep themselves open... we should have the results by then too.

For now, I'll leave you with something I wrote after meeting with the doctors about the Princess.  It's pretty personal and I never imagined sharing it but it feels right right now.

How much more can I handle... Shall I allow myself to fall and crumble?
Just for a moment?  I must deserve some self indulgent pity?
Alas, I know that I cannot... My love is too great, they are too important.
They need me... I will not fail them.  They never fail me... I need them.

I will fight, I will hold back the flood of tears that comes from wishing they had no struggles, that their life was boringly average.
They are not boringly average though, they could never be
They are the glistening light over the ocean
They are the butterflies dancing in the summer evening's breeze
They are everything... they are pure and good

They have an abundance of  love, compassion, excitement, and desire for everything and everyone.
They will do amazing things because they are amazing!

How could I ever, for even a moment, allow myself any self pity?  For what?
I am blessed... I am in awe of all that they are and I will fight for all that they deserve.

How do you parent?

This morning was not one of my finest parenting moments... I wish I could say it won't ever happen again, that I've learned from my mistakes and will now be more effective instead of affected but that would be a lie.  I am human... I have a temper... I hate to be disrespected.  I also want to raise responsible, driven, respectful, and empathic children and expect a great deal from them.  They are capable of it and it is required in our household.  To have blatant disregard for others and for what is asked of you is not tolerated... throw in some self entitlement and a know it all attitude and you've got yourself the behavior I witnessed from 2 of our 4 children last night and this morning.

When I first sat down to blog about this I was angry... way too angry.  I typed up several sentences all stating how completely appalled I was at them, particularly the Teenager.  None of it was sitting right with me though... yes, their behavior was appalling, that was accurate but there was something I was missing.  Then I spoke to a friend and realized my responses were too tied up in how I perceived their behaviors and actions to reflect on my parenting skills rather than viewing them as their own persons with free will.  Yes, they were wrong, they did not do what they were told to do, they ignored explicit instructions numerous times and when consequences were given there was more disrespect.  They did not own their mistakes and instead they chose to argue and lie, but, it wasn't personal.  It wasn't about me... it wasn't because we didn't teach them any better.

I will say it again, they were wrong.  They will be wrong again and again... they are 9 and 14... they will make lots of mistakes.  How can I be effective though?  How can I help them to see that their choices and lack of responsibility is not a short cut.  It will not help them?  Taking the easy way out doesn't work.  Not taking responsibility for your actions and choices, needing to place the blame on someone else is not acceptable.  It seems these are near impossible habits to break.  We continuously correct the behavior.  We try to teach them how this mentality will backfire but they haven't learned it yet.  We are always there demanding that they fix things before it's too late and the consequences are greater... particularly for the teenager.  Because we are the ones presenting them with the consequences I don't believe they've been able to make the connection.

How do I get them to understand that our punishments are nothing compared to what they would suffer later?  How do I keep it together when it happens for the millionth time?  How do you not lose your cool?

*on a side note... I googled positive parenting and one of the first sentences in link that came up said "Every parent goes through times when they want to shout at their kids to get their point across,".  I found this highly amusing... do you think this person really has kids?  I promptly closed the link.  ;)