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.

Tuesday, June 15, 2010

The blue pill and it's not viagra

Ok,  sooooo, it's been kind of a hard few weeks.  Yep, not gonna lie or pretend to be perfect.  That might shock some, I know, but I guess the truth must come out sooner or later (she says tongue in cheek). 
I know some people don't agree with the use of mood/anxiety stabilizing drugs, I get that.....  sort of.  Don't necessarily agree but that's another blog.......Anyhoo, back in January after I had what I thought was a heart attack but wasn't, I went on Prozac for anxiety.  I know, what could I possibly be anxious about right?  So, I went on it and life was grand, UNTIL allergy sneezon hit!  Then I started downing Benadryl like it was water and I figured maybe I should lay off the Prozac for awhile, Ya know the whole drug interaction thing.......... long story long......  I went off the Prozac cold turkey.  Can I just tell you that it was a really BAD idea?  Two weeks later, I'm  a freaking out, blubbering fool without a clue.  Yeah, so guess what?  I made an appointment with the Allergist; thank God for PPO insurance plans that don't require a referral.......   AND I started medicating again.  And they all said AMEN!  Seriously. 
Onto another story......  Ally hurt her shoulder a few weeks ago.....  she had an MRI on it last friday and I called yesterday to get the results.  Nope, can't give them to me over the phone, we have to go in to see the doctor.  UGH!  Ok, i guess I should be glad that he wants to see her again.  He obviously cares about his patients.... but I'm sort of nervous about what it might mean.  Did they see something on the MRI? Will it mean surgery?  Maybe just physical therapy?  (said as I grab the bottle of Prozac and down a few)    Then on top of it all the Gastrointestinal doc calls about Slayt and wants to put him on a third Medication for spazms and do an upper and lower barrium swallow study.  EEK!!!!!  Do you think they have Prozac in liquid form that I can just inject into a central line? 
Onto another and final story......  my brakes went out on my car.  Yep.  Jake was driving and THANKFULLY he was able to stop but he got home, Ron looked at it and saw that the break line had broke.  NICE!!!!!!  Now, some of you might not recall that my breaks completely went out a year ago coming down the hill ( a very steep, scary hill) in Ron's old truck.  Somehow (yes Virginia there IS a God) I made the turn at the bottom of the hill and slowly came to a stop, but let me tell you, it was a LONG time before I could drive over 30 miles an hour and you might as well forget about me coming down hills.  It has seriously taken me a year to get over having major panic attacks when I drive down a hill.  SO, now that the break line went on my newish car, I'm kind of thinking that I might just give up driving all together.  This might be my time to go completely green and bike everywhere.  I wonder how long it would take to get to Florida or Arkansas on a bike carrying 6 kids?  Hmmmmmm.
Well, maybe after all that you can understand why I need a little stress reducer in pill form.  If not, then you are a better person than I.........  or is it me, myself and I?  How many of us are there anyway????  Oh, that's another blog.

Tuesday, June 8, 2010

C'est la Vie

I find it interesting at how different the Christian view on things can be. I have found over the years that what one person or group of people believe to be the most important part of scripture can vary quite wide.  I'm not talking about the basics of Christianity or the differences between Muslims and Christians.  I'm strictly talking about bible believing folks.  Those of us that believe that God came in the form of man (Jesus) died on the cross to save us and forgave our sins and died and went to Heaven and that he also takes the form of the Holy Spirit and He dwells within us in that form.  Ok, now that we are all on the same page........
I have a friend who up until a couple years ago I thought that she and her husband had a direct line to God.  Seriously.  I hung on every word she said and agreed with her on everything relating to God and her thoughts on the subject.  After much growth and partly because I grew something called a backbone, I realized that I didn't have to necessarily agree with EVERYTHING she said and if I didn't it didn't mean I was less of a Christian.  I'm sure some would disagree with me about the less of a Christian part, but oh well.  Back to my thought..... There are just parts of being a Christian that I find to not be or shouldn't be such a huge issue.  Partly because it causes such a huge riff in the church and partly because I think the scripture can be interpreted differently on the subject.  What is this subject you might ask?  It's the whole gifts of the Holy Spirit thing.  Now don't get me wrong.  I do believe that there are gifts of the Holy Spirit.  I just don't always agree with those that think that is the be all end all part of being a Christian.  Ok, speaking in tongues......  that is a big one for some.  Personally I believe that the Holy Spirit gives each of us the gift of speaking in tongues if we needed it to edify someone.  BUT I believe the person would be able to understand what I was saying.  AND I don't think I would have to TRY to do it.  Let me give an example.  I think that if I was speaking to someone that didn't know English....  and I started praying for that person or trying to witness to that person, the Holy Spirit would give me the ability to speak or pray to that person in their language.  Otherwise what would be the purpose of speaking in tongues?  It doesn't do me any good because I can't understand what I'm saying and If it isn't in anyone elses language that I'm talking to it doesn't do them any good.  All it does is say "look at me, I'm more spiritual than you".  Nope, not going to agree there.   To be perfectly honest, I haven't studied ALL the different uses of speaking in tongues but honestly, am I going to be less of a Christian if I don't? I know there are those that would say "how can you call yourself a Christian if you don't believe that..."  all I can say is Oh well. 
The other thing that I've heard lately is that God doesn't allow bad things to happen, if bad things happen it's because the enemy has a hold on your life in some area.  I absolutely disagree with that one.  I don't think God WANTS bad things to happen, but I don't think that it's always because of sin in our lives or because we are allowing the devil into our lives that bad things do happen.  I think bad things happen because we live in a fallen world.  How we handle things is where our heart is. If we allow Christ to teach us through those tough times then awesome... if not then oh well.  How we deal with things sometimes shows unbelievers Christ better than anything else.  There is NO WAY someone could convince me that my Dad died because he allowed Satan in his life or had sin in his life.  I think he died because of  airplane failure and it was just time for him to go.  Also, I'm pretty sure I was closer to the Lord than I had ever been when I had Daniel so how would me doing something sinful play a part in why he was born the way he was?  First of all we sin all the time so with that logic we ALL would have sickness or bad things happening to us all the time, and second, Daniel has pointed my family and others to Christ MORE with his disabilities than if he had been born "normal". 
Oh golly, I guess I could go on and on, but I won't.  I just  had this discussion with someone and it got me all hot and bothered so I thought I'd write.......  if you disagree with me then I'm ok with that.  If you agree with me then I'm ok with that too.....   either way, pray for me because isn't that really the part that matters?

Saturday, June 5, 2010

Kids say the darndest things.

 One of my college age sons (I have two and it wasn't the oldest) came to Ron and I the other night and said "So, I want to live at Grams for the summer".   Now, I don't know if he was expecting me to be upset, or cry.....  he has very valid reasons why he wants to.  Well, valid for an 18 year old.  In his world he sees it as a hard transition to go from being away at college to coming back into the fold and being required to say, weedwack or mow or whatnot.  Even eating what I prepare for dinner is not fun for him because he has been at Culinary school.  Soooooo  he wants to be 'free' of the ol ball and chain like his big brother was at that age.    Back to how I feel about this.   I say " fine with me bucko".    First of all, I know that there will be guidelines of what he can and can't do at grams.  Grandpa isn't always the most fun person to be with and Grandma eats Gluten free so if he wants something Yummy he will have to fend for himself.  Ha!  I'm seriously giddy!  I know, he will NEVER, EVER, EVER tell me it's not going well for him down there if that is where he makes his bed, but that's ok.  He has to remember, I grew up at grandma's house, well yeah, it was my moms but same thing.  He also has to understand that it's just as hard for  us to get used to him being back as it is for him to come back.  We ALL have our own routine.  However, where I was willing to make some concessions, like give him his own room and move everyone around, he still felt the need to bolt.  Ahhhh the tempestuous teenager.  
Now his biggest challenge will be for him to actually aquire a job AND get the car that we gave to him on the road, pay for insurance and make enough money to put gas in his car.  Ok, he sort of might have a job.  I'll give him that.  He talked to a guy who needs house painters.  BUT he hasn't talked to him since and even if he does get the job, he is wholly dependant on the weather.Almost working doesn't pay the bills... at least not at our house.  Maybe it's different in the real world.  I don't like to go there often, it's not a fun place.
Soooo  this whole moving transition thing isn't going to happen overnight but that is what he would like to do.   It's going to be all up to him and Grandma AND Grandpa, and the latter might not be so easy to convince it's a good idea. 
Anyway, that is my life right now.  Well, part of my life.  Kids are awesome, aren't they?  Most of the time, yes..... then there are the times when you just have to say "welcome to the real world".