Where to start.......

Noah came to me the other morning overly tired and not at all ready to head off to school.  His lack of energy was due, as he explained, to staying up late reading the book form of my blog from years ago.  As he excitedly retold story after story from the blog, I grew ashamed.  How much of our shared history as a family have I neglected to record over the last 18 months?  All the little day-to-day happenings that seem so inane at the time but mean so much when you start to forget how little the kids hands were once....how they struggled to say "motorcycle" correctly (it was noodle cycle- so precious).....the first time they became too cool to kiss you goodbye in front of their friends (6th grade for my oldest son).  Zach is starting 1st grade this summer.  Yes, I said this summer- his school is changing to tracks so for the next 6 years I'll have a child on year round and the other two will be traditional schedules, albeit high school and college schedules in some part.

This is a weird stage in our lives as parents.  We have this elementary age child and then teenagers.  It's almost like two families.  James and I constantly have to remind ourselves that Zach will have so much one on one time with us as he gets older and Tay and Noah move on to college/missions/marriage.  We remind ourselves because it seems like he gets lost so often in the shuffle of his older siblings' busy lives, and it's easy to feel guilty that their needs take precedence over his.  I must say though, I am so overly emotional when it comes to Zach.  Knowing he's my last makes everything he does all that more significant.  He's my last "first day of primary"- my last "first day of Kindergarten".  I'm going to cry a whole lot as all these "lasts" approach.  I love holding his hand.  It's my last "little hand".  I think a child's hand symbolize so much to us as parents: love, complete faith and trust, need, hope, promise.  Watching his hands grow has been one of the hardest things I've done.  I remember those milestones of growth: being able to grab just a finger, then the first time his fingers clasped my hand as he walked by himself.  Watching your kids grow up is equal parts joy and pain.

There's a reason I'm so nostalgic lately....a reason why Noah's musings made me feel so regretful.  We've had some serious things going on in our house the last few weeks.  I want to record them so that in the future I'll be able to remember this time in our life, but then I also want to forget it all as well.  I want to remember how incredible my daughter is.  How her faith surpasses my own and how she's taught me so much.  About how I never knew she had such a strong and unfailing testimony.  About how Patriarchal Blessings are such a gift and a guide.  But I want to forget about just how scared you can feel- scared to your bones and very core- when you don't know what's wrong or how to fix it.  When you are waiting up all night for answers you're not sure you want to get.  When you are so frustrated you want to yell and scream and cry but you have to put this face of serenity and strength because you're the mom and you have to set the tone for how everyone should act.

My daughter is sick.  No one has answers for us.  We are going to our 6th dr. Appointment tomorrow.  Her spine is so swollen we've nicknamed her Gollum. X-rays and MRI's haven't yielded answers.  There was a scary week when they thought it was an inoperable tumor.  Her symptoms have gotten worse as each week passes.  The swelling has moved up her spine and into her neck.  She's losing function in her hands and to a lesser degree, her feet.  She has terrible headaches and nausea.  We pray for answers which we know will come, but are taking time and patience has never been one of my strengths.  I know whatever she has can be overcome- thats the blessing of a Patriarchal Blessing- but we need to know what we're fighting in order to start fighting.   It's been a blessing in some ways: we've spent so much time together as a family, and we've tried to keep everyone close to home.  The boys are kinder to her and their tears in her behalf show just how much they love her.  As a mom, I'm cherishing all the one on one time I'm getting with my almost-adult daughter.  In just a few years, she'll be off to college and I can't imagine the hole that is going to leave in our lives.  Selfishly, I love that she needs me for the first time in her life.  Tay was born an adult and has always been so ferociously independent.  It's nice to have her lean on me and allow me to do little thing like brush her hair, put on her makeup, and hold her while she rests on my bed.  I cannot put into words how much I love this girl, how much I love these children.  Seeing them struggle and hurt is the worst feeling in the world.  Your heart breaks over and over and then somehow repairs itself in time just to feel it break again.  What a glorious torture being a mom is

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.

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

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???

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.....

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?