Wednesday, May 30, 2012

6:46 pm

At this minute I am staring at the folded laundry on my bed, hoping it will grow legs and walk itself upstairs to its rightful owner's room. I'm not sure why, but I loathe putting away laundry like no other chore. It's second only to cleaning the shower in crappy job I put off as long as possible. I even take a strange pride in seeing how tall of a pile of clean laundry I can get before I finally break down and fold it. Someone needs to figure out how to make laundry a one step process. The person who does will be my BFFFFFF....... I think I just put myself to sleep typing this crummy post. But I'm not going to delete it because some day I'll really want to know what exactly I was doing on May 30, 2012 at 6:46 pm. I'm sure of it.

Tuesday, May 29, 2012

Cue the Band....

We had a huge piece of good news come to us today that made a fine silver lining to the cloud that's been over the Cella household for the last few days. Lacy (the district vision teacher) called me today and set up the first appointments to get Zach's IEP started. While that was great on it's own, she followed that with the announcement that she had gone to the principal of Buffalo Point with our updates to Zach's application for a variance, and the principal approved it on the spot! Zach and Noah will be going to the same school next year. No trying to be in two places at one time. While it's certainly not the reason we hoped Zach wold get in, it is such a huge blessing and will make my life a thousand times easier. Zach was so excited that he'll get to go to school next year with his big brother. Even though it will only be for a year, as Noah is going into the 6th grade, it will be so good for Zaxh to have his big brother around to show him the ropes. There were some groovy happy dances going on in the Cella house tonight :) I can't say it enough, but thank you everyone for all your love and support. I'm not sure that we are worthy of such incredible family and friends. We love you all. Mindi

Monday, May 28, 2012

Bet You Didn't Know This Would Happen... Aka. when Your Cat Needs Therapy

Zach decided today that one of his aunt's cats was mortally depressed. While helping his grandpa with some fishing gear out in the garage, Zach kept looking up to the top of the stairway about 10 feet above him instead of at his tasks. He called to the cat "no, stay there!" and when Grandpa asked him what was wrong, Zach replied " Grandpa, do you see Wolfie (the cat) up there on top of the wall? He's going to just off and commit suicide cause he wants to die". Morbid much for a five year old???

Saturday, May 26, 2012

Dear NBC.....

A Community marathon is the only things that has kept my family sane for the last 48 hours. You shouldn't have fired Dan Harmon. He's brilliant. If you ruin my show next year, I'll never watch your network again. And that will leave you with 14 viewers. You've been warned.....

Friday, May 25, 2012

In Need of the World's Biggest Fix

It probably goes without saying, but after yesterday I need a Diet Coke as big as a truck. Anyone make one of those?

Sometimes Life Gives You a Pile of Crap and Tells You To Make The David Out Of It....

I'm probably not in the best frame of mind to write this post, but I need to do it so that some day in the far future when my son asks me, "what did you think when you found out that I'm going blind" I can be as honest and forthright as possible.

First, the back story.

When Noah was about 2 years old, James and I felt very strongly that it was time to bring another child into our family.  I had some complications with Noah which left us worried that bringing another baby into the world might not be as easy as it had before, but we felt like it was a righteous desire and in line with what Heavenly Father wanted us to do so He would make it possible.  For three years we tried on and off unsuccessfully to get pregnant.  I lost faith.  I told myself that our problems were a sign that we weren't supposed to have another child, especially since there was a good chance that child would have the same retinal disorder as our other children.  We gave up and stopped trying for a long time.  But eventually we were humbled enough to admit that our pride was holding us back from whatever blessings and plans Heavenly Father had for us, whether they involved expanding our family or not.  We went through fertility testing and found that because of my issues from previous pregnancies, coupled with issues from James, it was probable that we/d never get pregnant again.  Oddly, James and I found comfort in this news.  It seemed to be a long sought after answer to prayer, and we decided to be happy and complete with the two children we were blessed with.

And yet, I cannot tell you how many times I would be in my home just performing some mundane task when I felt so strongly that someone was watching me or with me.  Without telling James, I prayed over and over to Heavenly Father, promising Him anything and everything if we could just have another child.  I promised to not fret over weight gain while pregnant; that unlike my other two pregnancies I would take care of myself and enjoy that process of creating another being.  I told Him that I would accept any handicap, disease, disability a child could have willingly.  Most importantly, I told Him that I could and would love and accept another child who would be blind, and trust in Him that all would be fine and that there was a greater purpose and plan behind that disease.  I felt like I was truly willing to give everything I had, all my faith and more, to trust in Heavenly Father's plan.

It's obvious by the fact that I have three kids instead of two that Heavenly Father heard our prayers and at the right time- His time- we were blessed with our Zachary.  The last 5 years have been a whirlwind with Zach.  From the trauma of his first few days of life to his unshakable stubbornness and fierce independence, I always thought those would be his challenges to overcome and it has never once entered into my mind that Zach might have RP.  But to fulfill due diligence, we decided to have him tested to rule it out.  As I stated, I felt it was just a formality so I put it off as long as possible.  Fortunately, my good husband was much more in tune with the Spirit and pursued the testing sooner rather than later.

Today Zach spent 4 hours at the Moran Eye Center with Dr. Hartnett.  I must begin by saying how incredibly blessed we feel to have been led to Dr. H.  We have fought with our insurance company for almost 8 months to get her as an approved provider.  She is the only pediatric retinal specialist in the West, and the only Dr. really qualified at Moran to diagnose RP so early.  With this knowledge, James went to war with the insurance and two weeks ago got the approval (another incredible blessing).  Zach was first seen by a technician who noted that his acuity was 20/60, but that it was not uncommon for a child that young to fail the test.  Next we saw Dr. H's resident who did a more thorough exam of the retina.  She finished and began telling us about all the tests Dr. H would want to run and setting up further genetic testing.  It seemed she was beating around the bush so she didn't have to say what she had observed or concluded from the exam.  Although I knew she probably had to defer diagnosis to the senior physician, I decided to be blunt and ask her if she was seeing mottling in his retina.  Without going into a complicated description, mottling of the retina is the only was to visually diagnose RP without genetic testing.  She was surprised that I knew this, although after dealing with Noah for 6 years I think I'd be a dummy to not.  She said that she did see mottling consistent with RP.  The minutes she affirmed my assumption, I lost it.  Not crying. weeping or whaling losing it, but I couldn't force the tears back from my eyes.  I'm pretty sure I say "oh crap". James was very quiet.  Then this young doctor did the most amazing thing.  Her eyes welled up with tears and she said "I am so sorry".  I imagine these doctors have to give bad news to dozens of patients everyday.  It must be so emotionally exhausting, and I've always understood that as the reason most try to be very objective and composed in front of their patients. Her empathy in that moment was so unexpected and so appreciated.  I love the Moran Eye Center.  Everyone there is so kind and so compassionate.  They are unsung heroes.

Dr. Hartnett came in after to confirm the diagnosis and offer all the help and support she could give.  She has a bevy of tests that will need to be run on Zach to get his baseline numbers, but she was so understanding of his age and the trauma that going under anesthesia would cause.  She kindly offered to wait for a year until most of them can be performed without any poking, prodding or being put out.  She offered to put us in contact with RP parents groups, social workers for rehab, anything we need.  On the spot she wrote us a letter to the school district confirming the diagnosis and authorizing the use of all her resources and asking them to do them same.  She requested 3 different kinds of retinal photos which we were then able to compare to Noah's at the same age.  It was amazing to see how similar they looked.  I am so grateful for the technology that will help us follow the progression of the disease.  I'm grateful for a doctor who had empathy, who told us she wished she had a magic pill that would make this disease go away, but that she had great faith in science and technology and that they would find a treatment someday.

On our way home I called Lacy, Noah's vision specialist and braille instructor, to apprise her of the situation.  True to form, she was on the job within minutes of our call.  By the time we reached her school to drop off the letter from Dr. H, Lacy had called her boss Karla and they had started the IEP process and had the forms waiting in the office for me to fill out.  In all this, I am so overwhelmingly grateful that Zach was diagnosed before he enters Kindergarten in the fall.  He will be able to learn to read in print and Braille concurrently, with each form aiding and assisting the other.  Noah started Braille in the first grade after he was already reading, so his print efficiency has always been so much higher than his Braille and they are trying really hard to bring his tactile reading up to the same reading level as his print literacy.  Zach will not have that problem.  He will learn both at the same time.

In all this I have forgotten to tell you what a rock star my son is.  Zach was perfect the entire time.  He was obedient, helpful, funny..... he charmed the pants off of all the ladies in the office.  He has no clue what's going on and I don't think we'll explain too much until he's older and can understand the situation.  Right now we just told him that his eyes are sick and he was good with that.  James and I are, well, not exactly okay but made it through today.  We held it together until we were in the car on the way home.  James was overcome when he called his mom to tell her the news, then later as he sent an email out to all of our siblings.  I feel so bad that my crummy genetics have caused this.  I know that this is Heavenly Father's plan for my boys, and they are strong enough to face this challenge.  I also know that without a doubt how they view themselves and their capability rests 100% on how we teach them to look at themselves, and how they face this disease.  If we feel sorry for them and allow them to us blindness as an excuse for not trying, they'll never be successful.  But if we tell them they can be anything and do anything they want to, they'll find a way.  They are learning Braille now so that they'll be successful, literate adults.  They are training in braille and low vision technology that will make them able to work in their chosen fields.  They are going to go to college and study whatever they have a passion for, and they'll make careers out of it as blind adults because they will be prepared for what is coming.

One more note that I cannot forget.  Much is said of the purity and completeness of a parent's love, but second to this is the love of a sibling.  When we dropped off the paper's to Lacy, it was close to the end of school so we decided to check out Noah.  As he was at recess I went in search of him on the playground.  The minute he saw my face he started crying.  He cried "oh no, why Zach? Why does my brother have to have this disease.  It's not fair."  All his questions were valid, but what struck me as so amazing was that never once did Noah ask why WE. His only concern was for his brother, and he was brokenhearted that his brother was going to have to face RP.  What an incredible child.  He has wisdom and compassion far beyond his 11 years.  After he had composed himself, Noah started formulating a plan to teach Zach the Braille alphabet over the summer so that by the time he started formal training in the fall he'd be ahead of schedule.  Zach could not have a better or more loving brother. His sister was pretty worried too. Taylor spent a miserable day at school after I texted her from the Dr. office with the results. Her misery was written all over her face when she came in from school.  She is so hurt, and so worried about both her brothers.

It has been such a long day with so many tears.  Right now I feel numb, just like I did after Noah was diagnosed.  James gets all his tears and anger out the first few days, but I stow it away so inevitably it pops up at the oddest and most inopportune times.  It's surreal: I am going to have two blind sons with moderate to profound hearing loss.  Is this really my life?          

Wednesday, April 4, 2012

Just for me...

I just had a déjà vu moment while reading. I flashed back to my favorite moment in Rome. We were walking down the bridge from Castle Sant Angelo, the famous one that is lined with avenging angel statues, when all of the sudden I heard the most beautiful cello melody. It's very famous but I can't remember it's title. I turned around to see a young street performer playing at the top of the bridge. The emotions that hit me were almost overwhelming. I was really truly in the most beautiful country in the world, surrounded by thousands of years of history displayed in architecture, art and sound. I have dreamed of this trip my entire life. I wish every day I never had to leave. But I guess that if I didn't leave then I wouldn't have anything to look forward to going back to in the future. But first James and I have to go to France and test out his French :)

Thursday, March 22, 2012

Road Rage

To the psycho mother pulling out of my son's school this morning who tried to sideswipe me because she forgot the rule that if you want to turn right you need to turn on your blinker so that other's know that is your intention: bless you and your stupidity. I hope you make it to where ever you peeled out of the street to safely, and without hitting anyone else. From the way you were dressed and your impatience, I assume you were late to work. I hope you are able to have a decent day so that you dont cause the anarchy you did this morning on your way home. Oh, and thank you for reminding me of why I drop my son off 15 minutes early daily, so that I don't have to deal with last minute freaks like you. I won't leave my house later than 8:25 ever again.

Tuesday, March 20, 2012

What I Learned in Italy

Italy is, without a doubt,the most beautiful place on earth. For the first time in my life, I have never wanted a trip to end. Had we not left our youngest son with his grandparents, I think I would have refused to leave and relocated permanently. I could write pages and pages about all we saw and experienced, but those words must be left for a later day. Today I need to record the most important experience I had in Italy, mostly so I never forget it and the lesson I learned. This experience will probably seem anticlimactic, especially as I've just described it as "the most important", but stick it out with me. It occurred about midway through our time in Florence. We had visited Cathedrals and galleries and gardens for days, and at each location Noah was able to identify the Roman figures and tell us the mythology behind them. He's been a Greek and Roman mythology buff since reading the Percy Jackson novels, and we were amazed at how much knowledge he had retained. It seemed that we had found the perfect mix of his two great loves: art and history. Yet all he could say as we left each location was, "can we go find a notebook now?". That seemingly minor request turned into the bane of our existence. You see, there were no Walmarts in Florence. There wasn't even a supermarket. There were thousands of little stores that catered to a specific commerce, but no "paper store". There were stores that sold leather goods that had bound journals for about $15, but that seemed way too exorbitant of a price for what was likely to become a doodling pad. So Noah was grouchy and quickly pointed out to us that we were holding back his talents whenever he saw artists sitting in the piazza sketching the landscapes or copying the great works of art that were around every corner. One afternoon while walking back to our apartment, James happened upon what I can only describe as a Chinese "Dollar Store". He grabbed Noah and they went inside to check it out. After digging through racks and racks of random items, they landed upon the jackpot: a regular old notebook and fountain pens.  Five Euros later they were leaving the store with the most innocuous treasure of all time. Noah ran home, sat down on the couch and did not emerge from the notebook for hours. He drew everything he'd seen. When he'd exhausted his memory his imagination took over and the pages were filled with recreations of roman battles, gladiators, and mortals fighting Gods. He was content and happy from that time on, as long as he could come home every day and draw. I've wondered over and over at this compulsion my son has to draw, to create. We had traveled half a world away; he was surrounded by the greatest Renaissance art and thousands of years of history were right at his finger tips. We took him there to SEE, to create memories for when his sight is gone. Yet he wanted to interpret and store everything he experienced through his HANDS.  His love of art has been one of the hardest things I've had to come to terms with. It seemed like such a cruel irony that the thing he loves and is most talented at has the weight of his sight hanging over it like a hangman's noose. I just don't understand why Heavenly Father would give him such a talent when he won't be able to use it some day. Art is like breathing to him: he can't live without it. I've never had a compulsion like that towards anything before. As much as I love music, especially the piano, I am not a fraction as passionate about it as Noah is about his art. I'm not a creator; I'm content to play and enjoy the work of others. But Noah's mind is moving constantly, designing and imagining every waking moment. I cannot comprehend the limitiness of his imagination, so I guess that is why I will never understand the compulsion he has to create. But I finally understand that art is a NEED for him, and I'm going to support him and have faith that Heavenly Father will open doors for him and make all things possible. After all, I imagine it was a similar compulsion that drew Beethoven to cut off the legs of his piano so that he might be able to hear the vibrations of the sounds as he lay on the floor. He was deaf and still composed. My son is an artist. My son will be blind. After this trip, I'm convinced for the first time that he'll find a way to be both.

Monday, March 19, 2012

Anatomy by Noah

Apparently Noah should have stayed home from Italy and attended the Maturation program his grade put on while we were gone. He just asked me what "nut sacks" are for. When I gave him a definition, he looked relieved and said " oh good, cause I thought that was where the pee was stored. Good thing we got that cleared up.

Friday, February 10, 2012

Jail Bird

Our conversation in the car after Zach had taken off his seatbelt for what had to be the 1000th time in his life: Me: Zach put your seatbelt on now. Zach: But mom, I like this song (he was dancing). Me: Zach do you know what will happen if you don't put your seatbelt on? A policeman is going to pull mom over and give me a ticket. Zach: Okay (resumes dancing) Me: Fine, do you know what else will happen? The policeman will take mom away and put me in jail. Is that what you want to happen? Zach: (without skipping a beat) It's okay mom. Dad and I will visit you and bring you a cake. On the day this kid graduates from college I'm going to show him this blog and say, "spend the next few hours reading this and you'll see why your dad and I gradually went insane during the last 21 years". I bet he'll offer to bake me a cake.

Friday, February 3, 2012

Too Risqué for Facebook, But It Had ToBe Written Down Somewhere...

A story about an important moment of discovery: Setting: Zach playing in my bathtub while I'm reading just outside the door in my room The conversation: Zach- Mom, come here! Zach- Mom come here right now! I have something very important to ask you Me- What's up Zach? Zach- Mom,what are THESE? (points to his man parts) Me- Those are your testicles Zach- My WHAT? Me- Your testicles. Those are the things that will make you a daddy some day. Zach- They'll do WHAT???? Me- Make you a daddy. They hold your semen and that's how boys create babies. Zach- Oh. (few minutes of silence as he mulls this info over) Zach- I guess I won't pop them then. Good call Zach.

Tuesday, January 24, 2012

All I Have To Say Is.....

President Obama, you rock. Thank you for your commitment and passion for our country. Thank you for your strong leadership. I'm out.

Friday, January 6, 2012

When Cousins Date Cousins....

Taylor and I we perusing Awkward Family the other day and it hit me that I couldn't come up with the single most awkward moment of my life. it's bothered me since then, as I love uncomfortable situations like a dog loves fleas and feeling such you'd think I'd have a treasure trove of them stored up. It finally came to me today while I was getting ready and trying to make my face look ten years younger than it is. The time my cousin asked me out. To be fair, he was at least a third cousin but a cousin still. We were sitting in Sunday School when the horrible words were spoken "so, we should go to a dance together". How do you answer your cousin's proposal with any kind of decorum or democracy?? Say "wow, I'm flattered but no thanks", or "sorry, I have plans that night"???? I was too shocked to be kind. I just hurridly spewed out "that would be weird cause you are my cousin" while trying to hold in the vomit at the back of my mouth. He tried to recover by questioning the validly of my claims to familial ties, but let's be honest here. We lived in a small town where everyone came from one of 4 families. Our ties re so close it would probably be considered incest on multiple levels. We didn't take much after that. Awkward.