Tuesday, July 20, 2010

The truth about boys, men and the average trained monkey

When I was younger and more naive, I thought boys were herculean gods that were to be worshiped.  Then I married one and gave birth to four of them.  Now I am sane and know that these boys may think they are gods, but they are actually closer to a trained circus monkey.  Lets  take a gander down little boy to manhood lane...... 
When boys are young, they think that the world is theirs to conquer, draw on, chop down with swords and pelt with spit wads.  Mothers are constantly doing their best to keep peace in the neighborhood and stores.  The difference between a boy under the age of 10 and the 16 yr old is the cute factor.  When your 3 year old wants to take the tricycle at Walmart for a test ride, well, that is cute; and it carries a high probability that the mother in tow will buy said trike for the tyke.  13 years in the future, the same boy will be taking the newest model out for a test ride, except instead of his mother in tow he will have 3 of his friends cheering him on and playing bumper trikes with each other. 
One of my overactive sons used to, and still likes to do Parcour....  I'm not sure if that is the right spelling but it's the sport of  jumping and flipping over stationary objects and landing on your feet...  One frosty morning before school, this son of mine decided to run and vault over the hood of my car.  He forgot to take into consideration the fact that it was morning and a thick heavy dew was on the car.  Did I mention that it was slippery?  Well, as we all were sitting in the car waiting patiently for him, he came running out the door, placed his hands not so firmly on the hood and proceeded to fly across the front of the car and land crumpled in the dirt on the other side.  Not only was he mad at all of us for laughing, he was adamant that he could do it and land it the next time.  Thankfully for his ego, he did.   This is the same son who climbs trees, like a monkey, and waves at me from the top while the top of the tree is swaying back and forth like it's about to snap.  
Most boys are like this.  They have the inability to realize that they could get hurt.  To tell them that is just wasting breath.  Boys believe they have a built in suit of iron and 9 lives like the cat.  Why else would insurance companies automatically make men pay more for car insurance than girls?  They aren't stupid.   They know that a guy is going to get in the car and decide that the speed limit is optional and it's more fun to play chicken with Grandma Gert who is driving down the street.
I did happen to raise a child that was rightfully scared of heights..... until he went to college.  Then he decided he liked jumping off of cliffs.  I can still hear myself asking them this question: "if all your friends jumped off a bridge would you?"    I guess I got my answer..... and that would be a "yes".    Now all I can say is please make sure you check the depth of the water.   Although I'm pretty sure as soon as I say it their eyes glaze over and the voice inside their head sounds like the authority figures in the Peanuts TV specials... you know the ones I'm talking about, wha wah wah whwa wah.......
No matter how much they make my blood pressure go up, and even though I need to color the gray in my hair quite often, I will keep throwing them bananas..... after all, I have the best four monkeys a mom could ask for.

Tuesday, July 13, 2010

Summer Rain

The sound of discontent making its  way through the valley
It begins with a gentle rumbling and then gradually the murmuring gets louder until nothing else can be heard
Flashes of anger appear on the horizon and dance with random  chaos; kissing the earth with its piercing tongue
Tears of sadness and pent up rage begin to flood the streams; churning the waters into a tangled mess
Then as if it had only been a dream, the atmosphere turns into a gentle mist
Clouds of forgiveness rise from the valley floor and once again everything is new

Wednesday, July 7, 2010

It must be the heat........

I'm hoping it's just the heat.  I've been getting more and more bummed this week and I really hope I am just not coping well because of the temperatures.  This fat body just can't take it I guess. 
I suppose it could be because after living easy life for a while after selling the house it's back to "normal" life and it's time to reign in the spending.  That's part of it I guess.  The other part is kids.  Just kids in general.   Summer time bickering and that sort of thing.....  College kid that doesn't want to spend time with his mama...... Ya know, the usual. 
I guess the other thing that bums me out is the inability to take a killer family vacation.  I know, it sounds silly and very selfish, but I just am.  When I say killer family vaca, I'm not talking about spending a ton of money.  I'm just talking about being able to go somewhere.  I'm so used to going places when I was younger and when the older kids were younger that I wish we could still do that.  This time around it's somehow not a priority.  Hmmmmm.  Oh well.  I'll get over it.  I have to.  Right? 
The other things that bum me out are hearing how the world is going to hell in a hand basket fast.  Or how the economy is going to crash.... again.  BOO HISSSSS.....  Honestly, I guess I just want to stay in my own little bubble and not think about it.  I don't want to dwell on it.  It's going to happen anyway so why talk about it and make everyone worry?  We pretty much got what we deserved anyhoo.  When you bail out companies with money we don't have and then ram a health care plan that we can't afford through, what does anyone expect? 
And last but not least, I guess I'm sad that Danny is starting his summer school schedule next week.  It's only 3 hours each morning, but it is still time away from him.  I know, in a way I'm looking forward to the break, but most of me is just plain sad.
Sometimes I feel like I am an idiot and probably the only parent on earth that has a child with special needs that sometimes just feels sad and scared and whatever the heck else I'm feeling.  I know that isn't true but it just feels that way.  Then I feel guilty because I think of all the other people out there with kids that have WAY worse needs than Danny has and they probably would love to have a child as easy(in comparision) as Danny.   So I know there is no need for me to feel sorry for myself, but I really just do sometimes.  As selfish as that may be.  Sooooo, that being said, I'm hoping it just is the heat.

Friday, July 2, 2010

I have a LOT to accomplish today but I thought I'd write for a few minutes first.  Hope that's ok......  So, during the winter I had this brilliant idea to make a fifth bedroom downstairs in our basement.  Well, it's not really a basement like you would think, it's not dark and dreary and cold, it's bright (for the most part) and has lots of windows and a french door so it feels like a regular floor in a house.  Anyway, I am digressing........  Back to the bright idea from the winter.  I wanted a fifth bedroom.  Ron said it probably wasn't a brilliant idea but maybe a slightly ok idea and being the patient man he is allowed me to dream the impossible dream of building the room.  My motto is truly "if you build it they will come".   I know, I know I'm plagiarizing a line from a movie, but I just knew that if we had this fifth bedroom my life as a mother would be perfect.  All the kids would have their own rooms.... well, the ones still at home.  College boys can fend for themselves.  I also go by the motto that 'possession is 9/10th of the law' and all that sort of jazz........ 
Fast forward to summer 2010, which would be now of course.........  I buy the wood, the sheet rock and the screws.  The men at the lumber yard think I'm crazy which is half true,  I'm crazy AND determined.  There IS a difference!  I build the three walls to make the room, do the mud on the sheet rock, and voila!  It's a room.  Now, Abby has already claimed this room so it's now a bright turquoise with black bedding and soon to be black carpet..... No, she isn't goth.  HOWEVER, and there always has to be a however........  my niece graciously pointed out that MY room is right above Abby's new room!  Did I fail to mention the fact that I'm not finishing off the ceiling yet?  As in, no insulation, no sound deadening aspects?  Hmmmmmmm,  I guess I should invest in a good set of ear plugs.  FOR US, not her, come on people, where is your mind going?  Sheesh!  Danny on the other hand, is THRILLED he has his own room.  Now Santa can see him through 2 windows and not just one (his words, not mine).  If you ask me, the thought of having an old guy lurking at my son's window in the dead of winter is kind of creepy, but I won't tell Danny that.  I'd have a third room mate in my room if I made that mistake. 
So, I guess I'm off to accomplish what I need.... after all, Ron is gone for the day and that means the sky is the limit..........  Who needs a wall built?

Thursday, July 1, 2010

Oh Danny Boy!

Wow, it feels like a long time since my last post.   Time does not stand still around this house, I can tell you for sure.  The other day on my way back from Slayt's doctors appointment in Rochester, I was thinking that I had never told Danny's story on here.   So, guess what?  Here goes...........

January 8, 2002 I gave birth to a still born baby; his name is Daniel William Norman.  The doctors were all rushing around and the look on everyone's face told the story.  I knew the story wasn't good, but I prayed it would have a happy ending.  I think Ron finally told me that he was breathing and after that I don't remember a whole lot, until the following morning.  
Our Pediatrician came in the do his rounds and check on our little miracle the following day.  I knew something was up, but I wasn't sure what.  The doctor asked me if he looked like our other kids.    Gosh, what a funny thing to ask a mother still half strung out on all the pain meds...... In my head all I could think was that he was implying he wasn't actually both Ron's and mine.  Indignantly I said, "of course he does", however, in my heart I knew he didn't.  There was something different about Danny.  I just couldn't put my finger on it at the time.   My mother-in-law thought it might be because he was so swollen from the delivery so I thought she was right.  When it came time to nurse, Danny was so lethargic that I pretty much had to strip him down every time just to get him awake enough to eat.  Another oddity that somehow I didn't catch onto in the hospital was that it was more difficult for him to latch on.  I thought that was weird considering I hadn't had a problem with my other 5 kids... but after much practice and holding his mouth just right, we got him to nurse ok.  Not great, but enough. Looking back now, I think having large boobs that squirt milk like a fountain was a good thing in Danny's case.
Before we left the hospital, I think I had started to worry that Danny had Downs Syndrome.  He just had a funny look about him and that is the only thing I could think of.  It wouldn't be long before we had a few answers. I can't remember exactly the order of events, but I know at the one week appointment for Danny, the Pediatrician said they needed him to have some genetic work done.  He never gave me his thoughts on that but I just went with it.  I knew something was different, but I didn't know what so I just trusted his opinion.  In the meantime, my MIL contacted a friend who she knew who knew a pediatrician in Corning.  So when Danny was 3 weeks old we went to get a second opinion.  We just wanted answers.   We were silly to think that ANY answers were better than no answers at all..... 
At the appointment with the new doc, we felt like even though he couldn't put a name on Danny's problem, we at least were getting somewhere.  It may sound strange, but at this appointment we first figured out that Danny wasn't blinking.   I think we knew that he wasn't closing his eyes but we never even realized that he wasn't blinking.   I think it was at that appointment that our brains started to make the connection that Danny wasn't like the other kids at home.  He didn't do anything.  He didn't coo, he didn't move, he didn't smile, he didn't cry, he didn't do ANYTHING.  It was like having a shell of a baby that stared of into space.  I began to be fearful.  Right about that same time, within a day or two Ron and I noticed that everytime he would lay Danny on his arm and lay him on his back he would go limp and look like he fell asleep.  I took Danny into see our regular Ped. and he wanted him admitted to check for sleep apnea. So off to the St. James we went.  Good Lord!  If I didn't know then that they are complete idiots at that hospital, I sure do now.  
We got settled in our room and they laid him on a bassinet with an alarm that would go off if he stopped breathing.  It also picks up the heart rate and thank God for that!  He hadn't been laying on that silly thing for more than 5 minutes and the alarm started to go off.  The respiratory therapist came in and pushed some buttons and  the alarm stopped.  Another 5 minutes passed and the alarm started going.  So this time the nurse came in and checked some things and pushed some more buttons and the alarm stopped.   5 minutes later the alarm goes off again, this time the nurse AND therapist come in and notice the heart monitor.  I think by that time Danny's heart rate was up to 190 and climbing fast.  By the time it was over 200 the nurse turned to us and said "Do you think that's normal?".   I was like, um that's YOUR job to know if it's normal or not. 
The doctor was paged and they rushed Dan down to the ER.   I was freaking out by then.  When the doctor came in, she had to do a maneuver to stop his heart and make it start beating in a normal rhythm again so they made us wait out in the hall........  that was the longest 5 or 10 minutes of my life. 
After the doctors got his heart back to "normal" they let us come back in.  My poor little guy was hooked up to monitors, IV's, all sorts of stuff.  I kept watching the heart monitor like it was a huge monster ready to devour my innocent little one at any moment.  Each time Danny's heart rate would start to creep up, I'd panic.  In the meantime, the decision was made to had Dan taken to Strong Children's Hospital in Rochester but we had to wait for a team to be assembled from Strong and come down to get him.  It took about 3 hours for them to get there.  When the doctors and nurses from Strong got there I relaxed a tiny bit.  By that time it was midnight and I was mentally and physically exhausted!  Thankfully they let me ride in the ambulance with my baby and we hopped in and off we went with sirens and lights blazing. 
We were in Strong for a week.  While we were there Danny was seen by every IST you can imagine.  He saw the Geneticist, the Cardiologist, the Ophthalmologist, the Neurologist the Audiologist, and who knows who else.   Some of the tests they did were so painful to watch and I just couldn't.  They had to take blood from his carotid artery which sounded and was REALLY scary.  They hooked him up to wires, IV's, monitors, etc.   The one test they did was an MRI and so they wisked him away and said we could wait in his room.  Well, what they didn't tell us is that it would take a long time.  After about an hour I started to panic.  I started looking all over the hospital for him.  I know, that sounds like a fruity thing to do, but at 3 weeks post delivery, I was raging all kinds of hormonal freakiness..... so I didn't care. Just about the only thing the doctors could tell us, was that Danny had an extra set of "wires" that had not dissolved at birth like normally happens and that was the reason for his heart rate.  So his first diagnosis was SVT.  Supra-ventricular Tachycardia to be exact.  They gave him Digoxin through his IV but at home I would have to give it to him three times a day at the same time every day by mouth.  In my head I'm thinking, oh my gosh! I'm not going to be able to do this, I can't even remember to give the kids their antibiotics everyday, let alone a medication that keeps my son's heart from freaking out.  By God's grace, I managed to do it though.  I got myself on a schedule and it wasn't to hard.  But I"m gettting ahead of myself......   While we were still at the hospital, the doctors also gave us a tenative diagnosis of Moebius Syndrome and after the MRI they added a third diagnosis of Agenesis of the Corpus Collosum. 
Moebius Syndrome is a rare disorder that affects the cranial nerves and also many things midline on the body.  Most kids with this condition can't suck, blink, close their eyes or have any facial expression.  At least Danny could nurse, so I felt like we were ahead of the pack in some ways......   The diagnosis of complete ACC was harder to grasp for me.  All I could think was that he was missing a very important part of his brain.  With both diagnosis the doctors couldn't and CAN'T predict what the future will hold.  Some kids do ok, others don't.  So far, Danny falls somewhere in between the two.  The third diagnosis was the heart problem but that was the least of their worries and really mine.  Even though it was stressful, I at least knew what I had to do  to make it ok.  With the other two it was and still is a waiting game.  Let me tell you, patience and waiting to see what happens is NOT my strong area!
8 years have passed since that week in Strong.  Since then we have made another week long trip to Strong when Danny had Pneumonia and many other day trips to see specialist.   At the age of four, Danny was able to be weaned off the Digoxin for his heart and we see the Cardiologist only once every few years unless there is a problem.  He still has chest pain at times but so far they can't find the cause.  They think it might be a virus that makes the chest wall hurt and not actually his heart.  The doctors at Strong have gotten to know Danny and it almost feels like a second home in some ways.  Danny's pediatrician here in Hornell has taken a strong liking to him and makes sure he tells Danny's story to all the student nurses that train in his office.  If we are there he brings them in to meet Danny and each time introduces Danny as his 'special friend'.   It's nice to know that Dr. Virdee cares so much for him.  Dr. Virdee and I also have an understanding from now on that if Danny ever gets admitted to the hospital again, it will NOT be at St. James.  I'm not dealing with incompetent nurses that expect me to know more than they do, which isn't to hard.
Danny see's the Ophthalmologist in Elmira and Dr. Morello is THE BEST!  Dr. M has done four surgeries on Danny's eyes and is wonderful with him.
For the most part, Danny is a happy and relatively healthy boy.  We have our up and down days and his   Autistic tendencies are present and show their ugly head at times.   We make frequent trips to the doctor it seems but I guess that has just become normal for us.  Even though Danny is 8 1/2 he is still at about a 6 year old level on most things.  He is at a 7 year level on a couple things but there are some places he only is at 5 year old.......  some days it makes me sad but all he has to do is give me his funny little "smile" and all my fears disappear.