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Saturday, February 11, 2012

2 Corinthians 5:7 "For we walk by faith, not by sight"

It is about 1am and I can't sleep...so I figured I'd vent on here to all you lucky (not) listeners.

We took Max to his third evaluation a few weeks ago. Both of the ladies that come and work with him twice a month...one from CDSA (Child Developmental Services Agency) and one from Governor Morehead School for the blind have said how well Max is doing. Even his daycare teachers praise on how active he is and that he must be able to see more than they originally thought he would.

Well, I have always been a pessimist while my husband is the optimist. Having Max in my life has really taught me to force myself to be or try  to be optimistic. I really REALLY had my hopes up for this third evaluation; So much so that I couldn't stop imagining what Dr. Toth was going to say...I only slept at most 12 hours the whole week before his appointment and not in fear this time, I was just so certain we were going to get such great news ya know?! The night before his appointment Max and I were playing. Max is my baby so I am past the point of "evaluating" his "condition". I really have for the most part forgotten that he was even diagnosed with PFV...OK thats a lie...erase-erase. Example of me trying to force myself to be optimistic.

What I am trying to say is that I have reached a point that I accept it no matter how good or bad his condition really is...so instead of always being the first thing I think of everyday it's the ya know 4th or 5th...Anyways...I was playing with Max the night before his 3rd evaluation and for some reason I could see the "white spot" in his left eye more than normal. After we put him to bed snug as a bug in a rug Allen and I went to bed. I just couldn't sleep...much like tonight. I ended up coming back downstairs and looking at all of the hundreds of pictures of my sweet little Max man. I felt like Barbara Hershey in the movie Beaches as Hillary Whitney looking for that picture of her mother's hands...yeah it was like that. Maybe it was lack of sleep, paranoia...I saw the *&^%$#@ white spot in my babies eye in every picture. That sharp paid was back in my chest, tears started pouring...you know the cry that is silent and painful with a big ol' touch of pissed the hell off. I got really pissed folks. I hadn't been in that mental place since the day he was diagnosed and I had been so excited about this appointment and BAM that jack a** of a pesimistic got the best of me. Its like in the movies the little angel on one shoulder and the devil on the other...you catch my drift right? Well after the silent, painful cry turned into straight Whaaaaaa, tissues got involved..it was ugly I tell ya...I got myself together and I...sitting by myself in my livingroom, dead silence other that the deep short repetitive breaths...you know the ones after a good cry? Little kids get them after whoopin's...I litterally (as crazy as it sounds) took my left hand and flicked that little bastard of pessimistic devil off my left shoulder, gave the optimistic angel dap, and took my my strong, forced optimistic a** to bed....crickets...and I laid there.........and laid there. I straight up was so sleep deprived myself was arguing with me in my head. Somewhere in the midst of me and myself's arguments mixed with prayer I dosed off.

It must have been about 3am and I heard my Max through the monitor. I could tell he was moving around and surely about to let it go so I went in there to save Allen's sleep. I changed my booga bear and gave him a bottle. We sat there and just stared at eachother. Here come the tears now just thing about it. My Max was looking right into my eyes. Now...again people Morg has had very little sleep, but I swear Max and I were having a moment. In the middle of his bottle he just stopped and smiled at me, then shook his head no. It was like he knew I was worried and just telling me in his little Max way "Chill the heck out Mama, Dada knows everyhtings fine sleeping like a baby upstairs...just simmer down Mama." I put him to bed and I to went to sleep.

His appointment was at 1:30 pm....remember that folks ONE THIRTY P.M....Allen, Max, and I got to Duke about 12:15 and checked in....off to the bland waiting room we went filled with elderly people wearing bifocals....Now wait just a minute! Were we in the right place? The fella at the front desk checked us in so we must be. Just as I was contemplating going back up to the front to verify we were indeed in the right place a lady came in with a little boy around 5ish....ohhhh there goes the sharp pain again. The little boy was noticeably visually impaired. His mother guided him to his seat. Thoughts started pouring in muh head...Oh Lord bless her heart, bless his heart, wonder what condition he has, could it be PFV? As the thoughts were racing in my mind the little boys mother looked right at me and my mind went blank. She looked at me and did one of those smiles...probable the same smile I gave her when they first waled in...the one that expresses sympathy. I tried distracting myself and took Max for a walk. It was 3:00pm and we had still not been seen or so much as had someone let us know how long we would be waiting. At 3:30 Mama Morg reached the boiling point. I knew that if I didn't go say something Allen was soon gonna and it would get real ugly up in there. I marched...not walked...I marched up to the front desk. "'Scuse me...." Homeboy had the nerve to ignore me which sent me overboard...."HELLO DID YOU NOT HEAR ME SAY EXSCUSE ME?" he responded with a quick "Yes ma'am can I help you?" "Can you help me? Umm my 13 month old son's appointment was at 1:30....it is 3:30 are we going to be seen anytime soon?" The guy said he would find out and come let me know and to go back to the waiting room. I marched back to my seat, Max was fussing understandably and Allen had smoke coming out of his ears. After 15 minutes and still no answers I stomped back up to the front desk slapped my debit card in front of the dude and said put my co pay back on my card and I want the name, number and address for whoever is in charge here. A nurse came over and asked my name etc that she would check to see when we would be seen. I said "Now Ma'am, I don't know whos fault it is that My 13 month old son, husband and I are still waiting nealry 3 hours after my sons appointment time, but this is unacceptable. I want the co pay put back on my card and we will take our child else where to be seen." Just as me and the guy from the front desk were walking back through to go to wherever he said we had to go to get the co pay put back on my card a nurse came out and said "Max Crowder"..................I grabbed my card from the front desk dude and Allen and I Max in toe stompped to the docotrs office...we must have lloked like we were doing some kind of angry Harlem Step Team ensamble b/c we were strating stomp stepping in unison OKAY!

The nurse was very apologetic and said the doctor would be in shortly...as she went to shut the door I grabbed it and said if the docotr will be in shortly then theres no need to close the door now is there!!! The doctor came in...Folks....mind you we had just waited for 3 hours, I am running on very few hours of sleep, Max is irritated and hungry, and Allen is fuming. The doctor put the honey I shruk the kids contraption on her head looked in max's eyes for 5 minutes tops...swings around and starts typing....Now lets just enter MOMENT OF SILENCE......so I don't say too many bad words. WELLL........how do his eyes look??????????????? She nonchalantly responds they look the same, how has he been doing?     (*^#$%^&)!@#$%^&
Lemme tell ya how he has been doin'.....mmmmk! He is wondaful (THE DURHAM IN ME STARTED COMING OUT! I started talking in a new accent-even Allen was looking at me as if I should simmer down) Max is the most active in his class, both of his therapist praise on how amazing he is doing and that they both think he sees a lot more than what the records show from his diagnosis, he loves books, picks up the smallest of things....as I was telling her about my Max she grabbed a tissue, wripped off a small piece, rolled it up, and held her hand out....Max picked it right up out of her hand. Her response was that it is great that he is doing so well. The main reason for this appointment is jus tto make sure it hasn't gotten worse.

I wanted to stand up, grab Max, do a hair flip and say girl bye, and get the hell out of there! Thats about all we got from that 30 minute appointment that we waited 3 hours for on top of the mental roller coaster ride I had been on for the previous several weeks...

I am no doctor but I what I am is Max's Mama. I see him everyday...he loves to laugh, help me do laundry (or try to get in the dryer rather), he will tare up some food, he likes not wearing a shirt and banging on his chest like that...whats his name?(can't think of it-lack of sleep) you know who I am talking about, he loves to color, he thinks bath time aka bah tine is the shiz nit, he loves playing with my hair and my jewelry, he thinks blocks of all kinds are off the chain, he loves to open and close doors aka doe's, he loves to give kisses (although he doesn't understand he needs to close his mount-they are still the best kisses in the world-slobber and all), his best bud is Aiden, he loves his teacher Ms. Tonya, he gets real irritated when Mama and Dada hug unless he is in the middle, his Toy Story tent is his #1 chill spot, he is not a fan of raisins, he loves music of all kinds and has some super sick dance moves, he loves his Elmo aka Elbow, his Mama is his fav, he thinks dogs are strange looking children and is terrified of them, he thinks books are awesome, asks for deuce on the regular(juice), but most of all he is just who God intended him to be...and Praise God my son!

I have had it up to here (muh hands raised over muh head as far as possible) with specialists who don't seem special at all if I say so myslef and I do say so...I am sick of having my booga bear poked and prodded and evaluated and hospitals, waiting rooms, no real answers, the anxiety and depression that goes along with all of this...I just want it all to stop! Max is happy, healthy, loved, and PERFECT! And....he is calling for me now. Thanks for listenin' feel a little better already.

2 comments:

  1. Doesn't he get evaluations under anesthesia? Usually they can't see very much just with an in office exam, especially if there is scar tissue in the eye.

    Hmm. That sounds weird. And I always had to wait for hours at our retinal dr.'s office partially because they give those dialating drops and then you have to wait for them to work. I don't know what it is about eye doctors. It is always so slooooooow. Our pediatric ophthalmologist is very slow too. But I always feel like I get a good evaluation and they tell me exactly what is going on in the eye. How the retina looks etc...

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  2. Totally relate to this! I always wonder how it is that I give the doctor the power to define Elsa. It is like somehow I imagine at an appointment they will sit down and say "this is an amazing person we have the blessing to spend time with today and you are all working so hard and doing so well..." I guess that is where these blogs sure help my brain...seeing you other moms doing your best loving your babies and being real about the garbage that comes along with it. Thanks for the post!

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