Balance

How does one balance all the different aspects of their lives?

I look back at the person that I once was. I look far, far back to the toddler Carrie (yes my memory is very long and precise), the child Carrie, the adolescent Carrie, the teenage Carrie (god help my parents), the young adult Carrie, and now the mommy Carrie. So have I changed? Have any of you really changed? Do we want to? Many people might say that I really haven't changed. I look at myself, and think "boy I really haven't changed!" I am still a great person, a funny person, a vain person, can still get my BITCH hat on, still have a temper, still have no patience for stupidity (including my own at times), still caring, and passionate, spiritual, emotional, strong, loud, inappropriate/annoying (just to see how others react for my own entertainment purposes only), determined, generous, incredibly thoughtful, realistic, and loyal.

I use all of these attributes god gave me and I basically... well just live. Now throw in a major life altering traumatic event and try to keep balanced. I hate that I keep talking about how hard life is for us, but it is HARD! I know life is all just how you look at it. I try and convince myself every day that it's not hard it just is what it is. And maybe Sam's care is not that "hard" anymore because you get use to it. And maybe learning to live with the fact that my baby may never do this and that is not that "hard" anymore (doesn't mean it doesn't hurt) but you get use to it and that becomes OK too. You learn to accept certain things. But... what I do find so hard is trying to balance every aspect of my life each and every day, and trust me it is a constant struggle.

Making decisions about when, why, what, and how to do things and knowing the ramifications if you are wrong kills me. Knowing when to be kind, assertive, curt, playful, etc. with all of the people I have to deal with on a daily basis just throws me into a gigantic tornado where I just want to yell STOP! Having to balance the feelings I feel, my emotions and at the same time keep my cool for my son and those around me and also being careful not to step on toes or hurt any one's feelings is just beyond exhausting...(sigh).

Example... Here comes the roller coaster again... Yesterday Sam had a follow-up eye doctor appointment. Before I even stepped into the day I knew this appointment was not going to be good. The doctor is wonderful and we didn't have to wait, not even for a minute. We were in and out of there within 1/2 hour. So within that 1/2 hour it was determined that Sam has a drift in his left eye which can lead to blindness in that eye if we don't patch his right eye two hours a day. And even that may not be enough to fix the problem. Imagine the enormous pit in my stomach at the thought of the slightest possibility that my child, on top of EVERYTHING else mind you, may lose his sight out of his left eye. Of course I was on the verge of tears but I'd never cry, at least not in front of anyone. So here I am with baby and nurse in tow my mother waiting in the car, plop Sam into the car seat, put on his eye patch, trying to keep my cool, all the while the nurse is saying we should wait until we get home for the eye patch about 10 different implicit ways, my mother asking me twice what happened in the doctor's office, me saying don't worry about it it doesn't matter, then getting a "thanks a lot Ca" because I obviously offended her. All the while I am trying to keep it in the breath and then I got one more annoying comment and finally SNAPPED! I said something nasty to my mother; she got mad at me and stayed that way for a few hours. I can't say I blame her because when the bitch comes out everyone get on their thickest armor. I can be absolutely scary or at least stick the knife in and turn it in just the right way. I don't mean to be this way. I don't want to be mean. I want to be mellow and kind. I am sick of fighting the battle of the everyday maybe you should do it this way versus that way. I wish I could just tune everyone out and not care how many times things are said that bother me.

My question is when is enough enough? How many times do I have to say, "I'd rather not talk about this now, or I am not comfortable with this, or I would prefer if we did it this way." My limit is 3 times. You get 3, everyone out there gets three. If I have to repeat myself to the same person 3 times, well run. If you ask me three times, run. If you bombard me with 3 things when I am already overwhelmed, run. My limit is 3. In this I have changed. My limit use to be 2. I would grow impatient after 2. I honestly would like there to be no number. I would LOVE it if I had the power and the mental where with all to just let it slide…

I have asked many parents in my situation what it is they do. You know, how do they react to those who have the best intentions of course but are adding a little bit too much to the plate at the time and do not get the point after the first few times that they say back off for now. Please do not get me wrong. My intention was not to single out my mom or my nurse. Both are AWESOME and only have the absolute best intentions for Sam and myself. But in my specific situation I am constantly walking on the edge of a very steep cliff. My nerves are shot. So anyone and everyone on any given day could really push me over that edge without even realizing what they are doing. I know we can't control others, only ourselves. So I am asking for advice. What would you do if you were constantly being bombarded? Is there really a nice way of saying fuck off? I dunno, anyone care to give it a whirl? How do you balance being kind, tough, assertive, etc…?

Memorial Day!

Memorial Day was one of the best days we have had in a while. Sam has had some issues with feeding which has really gotten Scott and I down. However... Sam has been making some gross motor gains which have made us very proud. He is trying to crawl using his head as a fifth appendage and he has actually moved forward a bit. But the biggest thing Sam has done was push himself to sitting all by himself. He did this about 7 times yesterday!!! This is a HUGE milestone and one that is indicative of a prognosis that leads to one day being able to walk. Some of the CP scales and research state that if a child can push to sitting independently before the age of 2 there is a 90% chance that child will be an independent walker.

We were so happy that this very special occasion was shared by my dad, who I was on the phone with the first time this happened yesterday morning. I think I blew out his ear drum. Sorry pop... Then our friends Nicole, Jack, Nicole, and Eric came and got to witness for themselves in person. We all had a great day as Sam once again was able to shine his light onto everyone he meets.

Take a look for yourselves to witness this amazing event.

Make video montages at www.OneTrueMedia.com

5 Things I Love About Being a Mother to Sam...

5. I love that I have learned more in the past 21 months from my son than I have
ever learned from anyone in my whole entire life.
4. I love not taking for granted every little piece of my son's being.
3. I love how when I am holding Sam he will not go to anyone else.
2. I love that I can kiss him 1 million times in a minute and I still cannot get enough and no one can tell me to stop because he's mine!
1. I love the way Sam can look at me for what seems like hours and how I can just get completely lost in his big amazing eyes. When he does this any pain, issue, trouble, or concern, just melts away and there is just peace.

Regulations

Have I ever mentioned that Sam is not a good sleeper. On top of all of our other trials and tribulations I can count on my fingers and toes the amount of times that Sam has slept straight through the night. I always thought this could be due to him being fed continuously throughout the night. Since Sam had his Nissen Fundoplication surgery we can now feed him more throughout the day and keep him off all feedings at night. Well we started not feeding him at night this past Sat. and he has been sleeping straight through the night beautifully. But now we are having trouble regulating his feeds during the day. We are getting there slowly but surely with lots of set backs and changes. Its all so frustrating and scary. I am such a bundle of nerves lately I don't know how anyone can stand me. To be honest its hard getting up in the morning knowing that on top of the usual every day battles I have yet another to contend with that so much of Sam's existence weighs in on. So how do I get up and move forward. I have no frigging idea... and this too shall pass...

P.S. No word from Duke yet, though I can just barely feel for the day when they call and set the date for us to go down there.

"It's all in the Cookie"

Did I ever mention how much I HATE taking Sam for doctor's appointments??? He actually has been traveling quite well since we got The Leshin Family Truckster. But the doctor visits are just down right miserable and most of the time pretty negative experiences. So we went to this particular visit today and the doctor was really negative. According to her at this point Sam has not made any gains in the swallowing department and things don't look hopeful. Also did I mention that Sam is OFF continuous feeds. Yup you heard me. We can feed him 3 times a day and he has been doing great. Not only is he tolerating the feedings but he has never been more calm and happy and engaging even during PT and OT therapies. But according to this doctor Sam is extremely uncomfortable and I am nuts for feeding him the way I am. So I asked if she had any suggestion of what to do instead and guess what??? She didn't... OK thanks doc. After I left the appointment I felt awful, sick to my stomach, my whole world collapsing all around me, again. I just couldn't get it together the rest of the day. Scott came home and took over (what an amazing guy I have!). He even took the liberty to order us dinner - Chinese food. Guess what my fortune cookie said??? "The physician heals, nature makes well." Pretty apropo considering the day I had. But I have a better fortune, "The physician's a F#$%ing moron, and mama knows best!"

There's a Mouse in my House!!!!!!!

So last night a get a phone call from my nurse... The same nurse that is sitting in Sam's room for the night. So you can only imagine what was going through my head when I saw her number come up on my caller ID. I pick up the phone and said what's wrong? She tells me a mouse ran out from behind Sam's crib under the door and down the stairs. So I immediately start SCREAMING! Scott jumps up and starts running in circles asking "What do I do, what do I do? So I said "How the F*%$# am I supposed to know, go get rid of it!" So at 10pm Scott's running around our living room/ kitchen area with a flashlight in one hand and a swiffer in the other. I don't know what he thought he was going to do with the swiffer? Clean the mouse maybe? All of a sudden the mouse comes running out from behind the couch and what does Scott do??? He runs away too. Way to go Scooter... There was no way I could help him. I was so freaked out! Instead, I took pictures of Scott running around the house trying to be our brave knight in shinning armour.

The Thinking Place

Yesterday, I had a lot of thinking to do. I get distracted pretty easily with all of the goings on in my house so sometimes I need to step out and go somewhere to just think. When its nice I like to go the "The Thinking Place". Its at this particular place where everyone comes, big, small, thin, tall, Asian, Russian, Mexican, Indian... Alot of people come to this place to do the same thing. I never realized how many come to this place to well, just think. Here we all are just looking out at the water in silence just thinking. I felt a sense of peace that I haven't felt in a long long time. I even had many moments of clarity and direction to where we go from here.

Today I am going to visit a school for Sam in Edison, NJ. Yeah you heard me NJ. The Garden State, beautiful this time of year if traveling away from the turnpike. We are looking to move back to NJ because schools for kids with multiple disabilities are much better in NJ than in NY. I know from experience and this is only my opinion, but its a strong one that I have. I still have a few more schools to look into but this one I know has a very intensive program. We will see.

So the other question is where do we move to. Scott and I have been doing a lot of thinking and we know that we want to be close to friends and family. We also want to be a commutable distance to schools for Sam and the city for Scott. I think we are deciding on Holmdel???? Maybe. Yes cousin Scott that is only 10 minutes from you guys and you are part of the decision... As is all of our friends and family in the area. The thing is before we make that move I have to research a little more in terms of what can be available for Sam in the area. To be cont...