Tuckered Out

Tuckered out after a fun afternoon with her siblings playing outside. She was so tired she didn't even take off her snow pants, and just plopped down on the couch climbing onto it from behind. (Lily, who is not supposed to be on the couch, couldn't help but climb up and snuggle with Sarah.)

Lots of appointments coming up:

 MRI tomorrow at the Cleveland Clinic.

Dr. Rensel (neurologist at the Mellen Center) on Monday.

Dr. Locastro (our beloved ophthalmologist) sometime next week.

The No Title Post

The kids are at a dentist appointment this morning. Bob, the appointment taker, is with them. I am trying to enjoy a morning to myself, but am having a hard time. I am so sorry that my blog has seemed so doom and gloom lately. How unfun is that to read everyday? I know that I would get so annoyed/bored by reading a woman who constantly posted things about how the sky is falling...you might as well call me Chicken Little. Blah!!!!

The thing is,  this is the only place where I go to vent and write about my hopes and fears. I rarely talk about this stuff with actual people because I don't want to get into it. At least here I can control the "conversation" and if something is too raw I don't have to think about it or answer a question about it. I can just ignore the issue altogether until I am ready to address it. I appreciate my friends and family asking about how everything is going, and I know that they do this out of love, care and concern for me and my family. I don't mind them asking, but mostly I will answer with something vague like 'fine' or 'as to be expected' because I think about and live this stuff every waking minute. When I am with my friends and family, that is my escape from my life, and I just want to pretend for a while that my life is normal and all is well. Does that make any sense, or do I just sound like a crazy person?

I think that until our appointment this coming Monday with the neurologist my blog will have a faint taste of sorrow wrapped among the words just because I cannot help that feeling from oozing out of me in this space. I will pick up my feet again. If this is NMO, I will refuse to back down from it, and I will fight it with all that I have. With MS, Sarah has a fighting chance to "beat" to the disease and keep it in remission. With NMO, there is no fighting chance. The disease will win. The only reason to fight it is to be able to say that we tried everything we could to beat it.

Yesterday ended up being both a good and a bad day. It was a good day because Bob worked a day shift and he surprised the kids and brought home a ton of stuff to make ice cream milkshakes. Even Sarah had one. Right now, although diet is a consideration, I am not going to be a food drill sergeant. I want Sarah to smile. I want to see her smile and to feel its warmth penetrate deep inside me. So, if a milkshake is what will do it once in a while, then a milkshake it is.

The bad part of the day was when Sarah started to cry out of the blue because she admitted to me that she can no longer see the images on the computer screen (19"), her Kindle screen, the boys TV (19"), and after a while even the big TV (49") starts to get too blurry. It makes her feel left out when I give the other 3 kids access to those privileges because she cannot partake in those types of things right now. I knew she had some trouble with these items, but did not realize that she had trouble with ALL of them.  I felt like I had been punched in the stomach. It isn't like she has unfettered access to these things, but at least she knew that at any time, if she got permission she could access those things. It isn't like that for her anymore. She will tell you that she can see certain things because it embarrasses her that she cannot. But her actions speak louder than words, and I know when she can and cannot see something. We play cards a lot now, and Sarah told me yesterday that when we play Rummy sometimes she cannot see the numbers on the cards, but when that happens she just quickly counts the shapes on the card so that she can figure out what number it is. It is these kind of stories that leak out of her at random times that break my heart for her in a way that is completely indescribable to another person.

I try really hard to remember that we are the lucky ones because there are so many out there who have it worse. I try to not be angry and not to feel sorry for myself and for my family. I try to be thankful for all that we do have, and to remember that everyone has struggles and hardships. We are not unique in that area. These types of thoughts do help me to feel better for a while, but then something will happen and I will see Sarah struggle with something or one of my other children (like my sweet Josh) will come to me with sadness in his heart, and all of that thankfulness goes out the window.

I hope upon hope that her vision will be restored, but both her ophthalmologist and her new neurologist let Bob and I know that there is definitely some vision damage they were just not sure how much. My heart is starting to worry that what she has now is all that she will have, and that the medications she is on right now aren't going to restore anything, but are working to prevent further damage.  MS or NMO - it doesn't really matter in terms of her vision - one of them has partially robbed her of the gift of sight.

We had two showings at the house on Sunday, and both families said 'no thanks' to our home because it doesn't have a basement and is on a corner lot. I am ready to pull the damn thing off the market. Yes, I would love a bigger home with a true dining room and a basement, but it isn't worth it to me anymore because having a bigger home means a bigger mortgage and bigger utility bills. I would rather stay in my home and use that money to take trips (which we are in the process of planning a couple of things) and create memories with my kids. We are comfortable now, and have the luxury of going places and doing things. I want to make sure that Sarah has the ability to see as many different things as possible just in case she should lose all of her vision. I would very much regret moving into a bigger home at the expense of creating memories with her and her siblings especially because we don't know what the future holds. Bob wanted to leave the house on the market until March when our contract expires with our current agent, but I am thinking after the conversation I had yesterday with Sarah about just how hard it is for her to see, that he may change his mind too. Then again, maybe not. We sometimes are on the opposite ends of the spectrum with things like this.

All I can do right now, is to take things day by day. We are still doing our school work (although we have changed up some of the the things we were doing) and are reading books up a storm. Right now, the kids and I are reading two books - The Baby-Sitter's Club (#9) and Where the Red Fern Grows. I am going to find a list of classic books and begin to read those to the kids. We read for at least a couple of hours each day - a chapter read here and there throughout our waking hours - and then again at night right before bed. I am having Elizabeth read to me everyday as well, and Sarah reads when she can see the words on the pages (which hasn't been too often lately). Once the weather breaks, and it is not so cold out we will venture outside for winter hikes.  We are all eagerly awaiting the arrival of spring, so that we can spend an abundant amount of time out of doors.

I ordered a seed catalog because if we end of staying here I am turning my side lot into a huge garden. I am pretty excited about this venture, and the kids are too. It will be a good learning experience for us all.

Thank you for sticking with me during this messy part of my life. I cannot wait to get back to posting about ordinary days and fun times. I know they are right around the corner...

Off Kilter

This NMO thing is throwing me off kilter. Just a bit ago I was on a new Facebook page that I joined full of people living with NMO. A newly diagnosed individual posted the question, "How long can I expect to live now that I have been diagnosed with NMO?". I almost threw up. Of course the responses varied, and there were plenty of people who have survived decades with this disease - some of whom were even diagnosed in their teens. But still the thought immediately came to mind: no one asks on the MS Facebook page what their survival rate is.

Sarah's neurologist at the Mellen Center called at the end of last week and moved her appointment up a month from March 3 to February 3. I hope she has good news.

I feel like I am holding my breath, and will be until I hear something definitively regarding Sarah's diagnosis. Sometimes I just want to scream out to God, and ask him why he is doing this to my family. I want to shout out to him that we are only so strong and cannot take much more. But then another part of me tells myself that I would just be wasting my breathe because God isn't real. If he was none of this would be happening to not only Sarah, but to everyone else in my family as well.

Josh is struggling with this disease. He has been having a hard time with Sarah's loss of vision (which by the way does not seem to be coming back even after 9 days on steroids). He is having nightmares about Sarah going blind. Her vision loss is affecting him deeply. It hurts me to see him hurting. He has become very protective of Sarah, and his kindness to her is amazing to see. The downside is that he is taking his anger and brotherly frustration out on Elizabeth. He and Andy have been sleeping in my room every night for the last several weeks. The girls will sometimes sleep on the floor too (although more often than not since their room is across the hall from our bedroom they just sleep in their own beds). I don't mind at all. I think being all together at night gives them comfort, and I will not take that away from them.  If I am being completely honest, having them near me at night makes me feel better too.

I love my children and Bob fiercely and with all of my heart. I would want to weather these storms with no one else. They are my world and my rock, and I know that I am their rock. Together we will get through this. One day at a time.

Scenes From Our Life

A few things:

1.) Sarah's sense of color is pretty off key. This worries me as it is one of the signs of NMO.
2.) She also has been getting up multiple times at night to use the restroom. I thought I read somewhere, but I could be completely wrong, that this is a sign of NMO.
3.) I have a doctor's appointment scheduled for Wednesday with her pediatrician. This is to make sure that she is caught up on her vaccines as she cannot have any vaccines while on this new drug. I don't know why...
4.) This new medicine is scary to me. I do not have the gut feeling of 'do NOT take this drug' like I did with Avonex, but I have a sadness in my heart that I cannot explain. I think it is because I know that Sarah needs to take this drug, in spite of all of the risks, to help her get better (maybe).
5.) I want to thank all of you who have reached out to me. I do not know what I need right now, but when I figure it out I will be sure to let you all know.

Our second home right now - Akron Children's Hospital

Me and my girl.

A much loved treat from Aunt Emily, Uncle Mike, Michael, and Lucy

She didn't know I was going to take her picture, and I wonder what she is thinking...She looks tired and sad.  This picture breaks my heart a bit. 

Smiles for the camera. 

She loved how big the cards were because she was able to see them more easily. 

This is what we think of MS and NMO!

The entire room was dark except for this ray of sunlight streaming in through the window. She looks like an an angel to me. 

Uno tournament.

Lily wanting someone to play with her....

Uno is the game of the week in our home.

Andy's drawing of Grecian Vase

Sarah's drawing

Josh's Drawing

Miss Elizabeth's drawing

Twister!

Sassy girls playing dress up.

The Similarities and Differences Between NMO and MS

You know that feeling after you have received really bad news, the one where you wake up and pray to God that you were just having a nightmare and that your life really didn't change at all? Yeah, I am living that nightmare again. I can honestly say that there are levels of Hell. Bob and I were just on the first level after learning that Sarah had MS, and now upon hearing that she may have instead (or also) NMO we have been welcomed into the second level. Here is why I am losing my mind all over again with grief:

Similarities

MS (Multiple Sclerosis) & NMO (Neuromyelitis Optica or Devic's Disease)

Both are incurable autoimmune diseases.

Both cause Optic Neuritis, bladder issues, loss of sensation, paralysis.

Both present themselves with lesions on a persons spinal cord and/or brain.

Both need to be treated with at least steroids when an exacerbation pops up.

Both diseases affect females more than males.

The cause of both are unknown.

A vitamin D supplement is recommended for both diseases.

Both recommend Plasmapheresis as a secondary line of defense when other treatments don't work.

Differences:

MS tends to cause damage to a persons body over time.

NMO tends to cause a good amount of damage over a short time.

MS tends to affect people living away from the equator and inland.

NMO is spread out equally all over the world.

MS can (supposedly) be helped by Interferon drugs like Avonex.

NMO can actually be worsened by drugs like Avonex.

MS tends to affect a greater number of people of European descent

NMO tends to affect people from all descents equally.

MS primarily presents itself as brain and spinal lesions.

NMO mainly presents itself as spinal lesions (although in rare cases it can present itself with brain lesions a bit different than those of MS).

MS affects about 400,000 Americans.

NMO affects about 4,000

NMO-IgG (an anti-body) is not found in MS patients, but it is found in about 70% of NMO patients.

People do not usually die from MS.

People can die from having NMO.

MS patients with Optic Neuritis will generally see an improvement in their vision after one dose of steroids.

NMO patients will not. NMO feeds off on steroids.A person's Optic Neuritis will return again and again if solely treated with steroids. 

MS tends to respond well to IVIG.

NMO does not respond well to IVIG.

50% of NMO patients are blind/paralyzed within 5 years of presenting symptoms.

Sarah's new neurologist at the Mellen Center is not sure if Sarah has MS or NMO at this point. Because her Optic Neuritis is not going away she is going to treat it as NMO. I find it hard to believe that Sarah has NMO (although I believe that I brought up in a past post how Bob and I thought that her symptoms were more in line with NMO) probably because I couldn't think of a lot of worse conditions for Sarah to have. Now that she is facing the possibility of having NMO - I know that there are worse things than MS. 

Sarah was given the drug Imuran to help her to stop having exacerbations. Imuran, as it is being used in her, is off label. (This means that the drug is being used for something other than what it was intended to be used for.) I guess one of the good things about this drug is that it is effective in treating both NMO and MS. There is an increased risk of Sarah developing cancer and just like Avonex, she has to have a blood test every few months to make sure that the toxicity of of this drug is not affecting her liver function negatively. Imuran is an immunosuppressant, which means that the common cold for Sarah could quickly become pneumonia or something else more serious because her body will no longer be able to fight off an infection like it used to. Her new doctor foresees her being on this drug for a loooonnnnnggggg time. 

This is where I am at with all of this:

 Sarah was diagnosed as having MS by two separate doctors - one of whom specializes in pediatric autoimmune diseases. I would think that if she really did have NMO one of them would have caught it. Sarah's MRI's have all shown (she has had 3 of them in the past 8 months) no spinal lesions. She does, however, have brain lesions. (This makes me more inclined to lean towards MS). When she had her spinal tap Sarah did not have any oligoclonal bands (which are found in MS patients) and she did have an increase in white blood cells (which are more prone to be found in NMO patients). Her Optic Neuritis does well when she is on steroids, but comes right back shortly after ending steroids (which leads me in the direction of her having NMO). She shows signs of fatigue easily which is a first line symptom of MS, whereas fatigue is a secondary symptom of NMO (meaning that she is tired only because something else caused it - lack of sleep, lack of exercise, etc....Basically, she would be tired for the same reasons that you and I get tired.) This leads me to believe that she still has MS...until I start to think about something else and it pulls me in the other direction...I guess for Sarah there are no clear cut lines saying that she has one of these diseases or the other. If I had to rely on my gut (which may or may not be tricking me right now because of how scary NMO is to me) I would say that Sarah has MS with just a really bad case of Optic Neuritis. I guess time will tell...

We now have the neurologists cell phone number (which suggests to me that we are dealing with something pretty serious). We are to call her immediately if we see any negative changes in Sarah's vision. We no longer have the luxury of staying home. She will need to be placed on steroids right away to deal with the acute stage of the disease. I have expressed my concerns about Sarah and steroids, and while those concerns were heard I get the feeling that there is not much I can do about it. My only hope at this point is that this new medication (when she starts it) will put this case of Optic Neuritis to bed and I won't have to worry about putting her through another round of steroids for a long time. From what I understand, if Sarah has MS, once we get her eyes back on track, we may have years of being symptom free. If this is indeed NMO, I do not think that we will have that luxury. Hospital visits will become part of our norm. 

We will know in the next couple of months (after another blood test and MRI) if Sarah has MS or NMO. For now, it is just a waiting game to see how much of Sarah's vision can be recovered. 

It's funny - I woke up on Monday morning so excited to see this doctor because I thought that she was going to go over some long term care options for Sarah's MS. Instead, I walked out of the door more scared and confused than ever. 

Here are some useful resources in case you are curious:

http://www.mayoclinic.org/medical-professionals/clinical-updates/neurosciences/neuromyelitis-optica

http://myelitis.org/symptoms-conditions/neuromyelitis-optica/signs-symptoms-nmo/

http://www.nationalmssociety.org/about-multiple-sclerosis/related-conditions/neuromyelitis-optica-nmo/treatments/index.aspx

***Disclaimer - I am not a doctor. Do not take this information as medical advice.***

.

A Time For Everything

For everything there is a season, and a time for every matter under heaven:

 a time to be born, and a time to die;

a time to plant, and a time to pluck up what is planted;

 a time to kill, and a time to heal;

a time to break down, and a time to build up;

a time to weep, and a time to laugh;

a time to mourn, and a time to dance;

a time to cast away stones, and a time to gather stones together;

a time to embrace, and a time to refrain from embracing;

a time to seek, and a time to lose;

a time to keep, and a time to cast away;

a time to tear, and a time to sew;

a time to keep silence, and a time to speak;

a time to love, and a time to hate;

a time for war, and a time for peace.

(taken from: http://www.esvbible.org/)

Tidbits

I know you have been patiently waiting for me to fill you in on how Sarah is.  We spent all of the morning and most of the afternoon at the Mellen Center in Cleveland with a neurologist who is going to oversee Sarah's care. So far, Bob and I are both impressed with her.

Sarah ended up spending 3 days in the hospital receiving a bout of steroids this weekend. There was a lot of b.s. that went down between doctors and getting her the care she needed, but to be honest I am too exhausted to even go into any of that.

After reviewing Sarah's case today this doctor thinks that Sarah MAY have something called 'Devic's disease' (also known as NMO - for those of you who like to google this stuff), Devic's disease appears to be an offshoot of MS. It affects mainly a person's vision, but can affect most of the other areas that MS does such as bladder control and paralysis. From the little that I have read, this disease seems a little bit scarier to me than MS does. 50% of patients with Devic's disease either end up paralyzed or blind within a 5 year period. People can also die from Devic's disease (at least from what I have read), but I am not putting too much stock into that. I will be doing more research on that though to be sure.

Her doctor gave us an ugly drug to try and help this case of vision issues. I haven't given it to her yet. I am scared to. It is controversial and the side affects are Avonex type issues with liver damage and an increased risk of getting cancer.

Sarah's spirits are low today. She had to get more blood drawn. Her arm is hurting from that, and her opposite arm is hurting from her IV this weekend in the hospital.

From what I understand after her doctor's appointment today, hospitalizations may become a routine part of her life if she does indeed have this Devic's disease (although not as frequent as she has been). We should know in the next couple of months if this is what she does have - she will need to have another MRI, blood drawn again (when she has been off of her steroids for a bit), and possibly another spinal tap.

We were told that we can no longer let her stay at home when she shows signs of eye regression. We need to act on it the day it happens. Sarah's eyes are now 20/200 & 20/100. It is taking much longer to get them back to where they need to be. Her neurologist would like to see her get to 20/40 or 20/50 in each eye.  Both Sarah's ophthalmologist and her Mellen Center neurologist told us that some of her vision loss is now permanent. It is just a matter of seeing how much.

It really seems like every time I think that things cannot get worse they do. I am not sure that Sarah even understood the conversation today between her doctor and Bob and I. How do you even being to explain all of this to a 9 year old? Do you even attempt to do so? Will it just make her worry more or does she have a right to know everything about her care? Those are questions to be answered another day.  I don't know what I think or how to feel anymore. I do know that I am exhausted. We all are.

I Hope

Today is a good day for hope. I signed Bob and I up for Pedal to the Point. The sun is shining brilliantly. Our bags are packed as we are preparing for the worst, but hoping for the best. Hope is the best feeling in the world. It gives me the courage to face another day of uncertainty. It puts a smile on my daughter's face. I hope for a good day. I hope for Sarah to be able to come home with us after her appointment. I hope for good news. I hope...

Stand By Me

This song keeps on playing in my head, and has been for about a week. Unlike Bob and Elizabeth I usually do not have a "song in my heart" (as my Aunt Julie likes to say). I cannot help but think that there is a reason that this song popped into my heart. Here's to good news...

Stand By Me

Written by Ben E. King

When the night has come
And the land is dark
And the moon is the only light we'll see
No I won't be afraid, no I won't be afraid
Just as long as you stand, stand by me

And darlin', darlin', stand by me, oh now now stand by me
Stand by me, stand by me

If the sky that we look upon
Should tumble and fall
And the mountains should crumble to the sea
I won't cry, I won't cry, no I won't shed a tear
Just as long as you stand, stand by me

And darlin', darlin', stand by me, oh stand by me
Stand by me, stand by me, stand by me-e, yeah

Whenever you're in trouble won't you stand by me, oh now now stand by me
Oh stand by me, stand by me, stand by me

Darlin', darlin', stand by me-e, stand by me
Oh stand by me, stand by me, stand by me

Tick Tock Tick Tock

I can feel each second baring down on me holding my heart in a vice that I cannot seem to escape from. Sarah feels it too. Tick tock tick tock. The seconds go by, each one bringing us closer to our 10:45 appointment with the ophthalmologist tomorrow morning. The weight on my chest is making it hard for me to breath. Each inhalation and exhalation is felt. I know that Sarah feels it too.

Last night as I was tucking her in bed I promised her that I would not ask her how her eyes were doing today. Not once. This will be hard for me to keep, but I will do it anyway because I know that she needs the respite. She told me that she would tell me if her vision gets any worse, but I do not think that this is true. She is scared, and I know that. She mentioned to me that when she closes her left eye she can see almost nothing out of her right eye. Everything is very blurry. Her left eye is faring a bit better. She can see out of that eye, but things are still blurry at a distance. The black dots obscure her vision in both eyes. I thanked her for offering me that information without me asking. I told her that I want more than anything to be able to understand what she is seeing and experiencing because I want to know how to help her.

Bob came home earlier than normal last night, and was able to tuck Sarah into bed as well. When I talked to him a bit later on in the evening about everything going with her and updating him on the days events he mentioned that she was talking about fears no child should have to talk about. Things like needles and iv's, the pain of medication, and the fear of being admitted to the hospital. I know that her talking this way hurts his heart. It hurts mine too. I am grateful that she is being more vocal about her desires to not want to go to the hospital. The last 4 times she was hospitalized she seemed to give up the fight, and resigned herself that she had no power over what was happening to her. I am thankful to know her thoughts and desires. It will help Bob and I make some of the decisions that need to be made on her behalf.

I guess in a way, the signs are obvious that she is struggling. The boys even notice it. They can tell in the way that she holds the cards in her hands when we played Uno the last couple of days. They can tell by the way that she needs to sit so close to the TV when I let the kids watch a movie with their Papa last night. They can tell in the way she needed to play in the shade at the park yesterday because something about the sunshine makes her have less visibility. They can tell with how grouchy she is.

I, too, see the signs. The grouchiness is definitely a for sure sign. She has displayed this rage the last 2 or 3 times before being hospitalized. She gets very upset and mad at everyone for everything.  I know better than to try correct her attitude. As long as she is not physically hurting anyone (and she is not) and is not being verbally abusive to anyone (she is not) then I let it go. Her rage is how her 9 year old mind and body are responding to the fear, uncertainty, confusion, hurt, and anger she is feeling. I feel it too, and I don't even have the medical issues she has. I cannot even fathom what she must be going through. There are other signs too. Being at the library the other day, and her not being able to see the computer screen while locating a book she wanted to check out. Needing extra help yesterday and days prior with her math and spelling homework.

The boys and I talked for a while couple of nights ago after the girls had gone to bed about Sarah's MS. It was the first time they really opened up to me with their thoughts about everything going on. I told them that it was okay to have a wide range of thoughts and emotions. I told them that even though Sarah was the one who carries this disease in her body, we are family, and therefore this disease affects us all. They wanted to know if Sarah was going to have to live with Bob and I forever if she loses her vision or shows any other signs of having MS? They wanted to know that if she did live with us what would happen to her when we died? They wanted to know if Sarah loses her vision would she be able to have a seeing eye dog help her to live her life? We talked about how if Sarah's vision keeps deteriorating that she will most likely never see the face of the person she chooses to marry (should she choose to even marry). If she chooses to have children, she will never see the faces of her sons and daughters. Josh hung his head low, and said, "Mom, why is this happening to us? Why is this happening to Sarah?". I responded in the only way that I could think of, and I told him that it was happening to us because we were strong enough to handle it. Because even though it was hard, sometimes really hard, we would thrive despite the odds of MS. Andy chimed in that we are close family who takes care of one another. He noted that not every family has that, and this is why the Universe chose Sarah to carry this disease. I agreed with Andy, and told him that Sarah will be a beacon of light for so many by her grace and beauty. I also explained to the boys that just because a person is blind doesn't mean they cannot see and just because a person has vision in both eyes doesn't mean they really see. Sight, to me, is more than what meets the eye. It is important for my kids to understand that. How many of us pass through our lives with vision in our eyes, but yet fail to see what is around and before us? I live my life blindly more often that I can to admit. I bet you do too.

 In about 24 hours we will be in the waiting room of the doctor's office waiting to find out Sarah's fate. Tick, Tock, Tick, Tock....

Ups and Downs...Then Repeat

As those of you know who follow my blog with any sort of regularity, Sarah has not been doing well since January 1st. Her vision comes and goes on a whim, but mostly it goes, and life has been hard for her to say the least. We have an appointment with her ophthalmologist this coming Thursday, and have a pretty good idea that he is going to want to hospitalize Sarah again. Of course, we are not for sure, but given where her eyes are now with previous visits when he has admitted her we feel pretty confident we will be spending some time at Akron Children's again this weekend.

Sarah is not a happy camper because of this. She is scared and nervous, and has asked us to see if her eye doctor will let her just stay home and weather this bought of vision issues. He just may honor her request as Optic Neuritis is supposed to go away on its own. It just takes a bit longer to restore one's vision when forgoing steroids. Sarah has done 4 rounds of steroids in the past 7 months and two rounds of IVIG treatment. These treatments are not working. They just aren't. The last line of defense that we were told many months ago when she was staying at the Cleveland Clinic was a treatment in layman's terms known as plasma exchange. Basically, this involves removing a portion of the blood in her body, cleaning it, and then putting it back into her body. I do not know if this is done on an outpatient or inpatient basis and I also do not know how many days she would need to have her blood cycled through this cleaning process.

I called her ophthalmologist to give him a heads up on her condition, so that when he sees her on Thursday he won't be completely shocked. The last time he saw her he was hoping that after this upcoming visit he wouldn't have to see her again for another 6 months. We have been visiting him regularly since her diagnosis, and we are all hoping that she was getting better for real. I let him know our thoughts on why we don't want to admit her and my thoughts on what treatment I would like to try if we do end up having to admit her. I am hoping that he will have had a chance to form his own thoughts or get some things set up so that we aren't waiting too long for any decisions to be made involving her care. We never really have had to wait awhile, but I know how nervous Sarah is so I just want to make this visit as smooth as possible for her.

It doesn't help matters that Sarah is very stressed about Thursday's visit. Honestly, I think she is making her condition worse because of the stress she is putting herself under. I know I am not helping the situation either by asking her several times throughout the day how her eyes are doing or how she is feeling. I am trying so hard not to bother her, but I am scared too. I have no control over this issue nor do I have any idea what she is seeing or not seeing through those beautiful blue eyes of hers, so I feel compelled to try and understand this experience as much as I can. The only way I can do that is to ask her a million questions. I really need to stop doing this to her. After all, Bob is constantly telling me that what will be will be - there is no use worrying about anything or stressing out about anything concerning her care because we have no control over it right now. Of course, he is right.

So, I am doing what I have learned to do, and am preparing for the worst while hoping for the best. I have made a grocery list, and will be going shopping tomorrow evening to make sure that I have simple, but nourishing foods for those who will be in my home to prepare meals for my kids. I am trying to arrange care for the kids that are not going to be hospitalized. I will be contacting friends and family to see if they can shuttle my kids to their activities this weekend, and all the while I will be hoping that I can contact all of these people back and let them know that their services are not needed after all because Sarah does not need to be hospitalized.

I have learned to go into hospital mode. In hospital mode I have very little time for emotion. I am just in a place of getting things done or arranging our lives to get from point A to point B. I am wondering what nurses will be on call this weekend - remembering their names and demeanor. This is just what those of us who deal with chronic illness get used to doing.

Sometimes it feels like we live a split life. Our normal home life and our hospital life.

For those of you who pray, I ask that you send up some words of love and hope for Sarah. Please ask that she does not need to be hospitalized. Please ask that her vision is restored. To normal. For good. Please ask that if she is hospitalized that she does not have to undergo steroids or IVIG because her little body cannot handle another round of either. Please pray that God gives Bob and I the strength to get through yet another round of uncertainty.

For those of you who don't pray, I don't mean to sound like a gosh-darn hippie, but please send us some warms thoughts of love and health. Please send our family some good juju. Sarah needs it. I need it. We need it.

I will do my best to keep you updated. Her appointment is at 10:45 am on Thursday. I hope to come back to you with some good news. I hope....That phrase has sustained me so much these last several months....

A Matter of Perspective

Our circumstances, and what we make of them, really are a matter of perspective. I was reminded of this lesson a few weeks ago and then again this weekend. I know of a family in our community who has several children with series medical issues. I am talking about Sarah size medical issues multiple times over. I think about this family often, especially when I am feeling down in the dumps about Sarah's condition, because we are the lucky ones, my family and I.  I need to be reminded of that more than I would like to admit. We don't have several diseases we are battling - we have one. I (and we) are strong enough to handle one disease. I don't think I could handle more than one. I hope I never ever have to find out.  It would  behoove us to carry ourselves with grace and dignity because I imagine that this family (or any family with multiple children with medical issues) would give up a lot to be in our position. To some people, those maybe with no serious medical issues, might see our family situation as a curse. They might see our family situation as such a sadness. Me? I see it that way too sometimes, but then I think about those (and they exist) who have it worse off than us, and I am reminded that my family really doesn't have it that bad. A change in perspective makes all the difference in the world. It wasn't until  Sarah was diagnosed with MS that I realized how good we have it now. It wasn't until the dark days fell upon us that I was truly able to see how lucky we are.

The second situation that really brought about some serious thought was an evening out recently. I finally decided to stop hibernating (there will be another post about this in the future), and go back out into the world. I went out for a beer with some friends and heard some of the saddest stories I have ever heard. Stories about conflict and violence. Stories about family discord. I took these stories home with me and thought them over and over. I thought about how we all carry stories of sadness in our hearts and memories, and that no matter how sunny a person's disposition that sadness still exists deep within. I also thought about how lucky I truly am. I definitely have had sadness in my life, but really I have it pretty good. In fact, I have it really great. My kids have it even better. They have two parents who are completely involved in their lives who not only love them, but love each other. They have two parents who don't scream at each other and spew hateful words back and forth between them. My kids have never witnessed parental violence because it doesn't exist in their home.

The sadness that we have isn't born out of shame or hurt or violence or mistrust or lies - the sadness that we have is that our lives have been altered by a disease that could permanently negatively impact our daughter's/sister's life. That is a sadness, although I wish we didn't have to deal with it at all, is definitely manageable. It took a devastating illness to see that, but we still see it now none-the-less. Life truly is a matter of perspective. How I choose to see my situation in the world will affect not only how I live my life, but how my children live their lives. I know that sometimes there will be dark days, but over all I know deep inside that we are the lucky ones.

The Turning Point

Photo courtesy of: google.com

A New Kind of Day

With Sarah having trouble with her eyes again (she was able to see a bit better before bedtime last night, so that is good news) I started to think about something that has stayed with me since the moment it popped into my head. The question is this:

If Sarah only has a little bit longer with her vision, what would I want to show her? What would become the important things in life?

 (Now, please, please, please understand that this is not at all what I would like to happen. I would give up years of my own life just to allow her to have the ability to see, and even better, to be able to see clearly, for the rest of her life. I just think that in all that we have been through these last 7 months I need to be able to look at this situation from all angles.)

Bob suggested that we take this week and just have fun. So we are because, you know what? Diagramming sentences are not that important. Learning Latin is really not that important. Doing worksheet after worksheet is, guess what? - Not that important. It's really not.

Yes, there are some school related things that we will be doing because I don't want the kids to stop learning, and some of their book work is important to me. So we will continue to do some of that, but I don't want to look back and regret any of my choices that I made during this time in terms of what I did and what I could have chosen to do. I don't want to bog everyone down with pointless paperwork when we could have instead chosen to read together snuggled up on the couch or put on plays or made forts or baked together or played hide-and-go-seek.

Instead of hour after hour of work - that I am not sure is even very relevant in the adult world - we are going to take a new approach for a while. It is scary for me to take this approach because some of our learning will not be visibly quantifiable. I am the type of homeschooler that wants to be able to show everyone what we have been doing. To be able to produce papers upon papers so that everyone knows that I am not a slacker homeschooling mom who let's her kids run amok while she watches Oprah eating Bon-Bons.

If this recurrent vision loss is telling me that my time to show my Sarah the world is limited I want to make sure that the memories stored in her mind if her world goes black are full of color and beauty. Doing paperwork on diagramming sentences is going to produce neither of those things in her minds eye.

For the time being, this is what our life will look like - unstructured media free time together - playing, laughing, and loving on each other.

Ingredients for making play dough.

Elizabeth - working on her puppet.

Andy in his land of make believe.

Lego fun in the sunlight.

Our favorite new series to read out loud.

Gifts from Christmas.

Josh helping Sarah make play dough. 

Miss Elizabeth finishing up her puppet.

Making play dough.

Sarah working on her puppet. 

Josh trying to work on his puppet.