Funny, I just posted about how I was going to stop writing to much about Sarah in the hospital and all of her medical issues, and here I am about to embark on a 15 day journey of doing just that.
Sarah was admitted to Akron Children's today around 8:45 am. We waited for several hours to get her central line in place (which was put in near her groin) because the hospital is very busy right now. She and I both were pretty cranky as we were both hungry due to the fact that a procedure that was supposed to take place between 10 am and noon got delayed until 2 pm. I stayed with her while she got her central line, and it was pretty hard for me not to break down. She was put under sedation and doesn't remember a thing which is good.
Her plasmapheresis was delayed by a day which means that a 14 day hospital stay is now going to be 15 days. I know that the hospital staff isn't any happier about having to keep her longer than I am, but it was still a pretty frustrating day none-the-less. I feel like we just sat and sat there for hours on end. (I guess I feel that way because that is what happened!)
As always, Sarah was a trooper. She received an IV, had blood drawn from a different location than where her IV was, and had the central line put in. Her only complaint was that her leg was sore where the line was put in. No tears from her. No whining. She was a champ like always.
We were visited by a member of the Doggie Brigade. Sarah met a new friend named Clark. Clark happens to be a pure bred bull mastiff. He was one of the sweetest dogs I have ever met. He brought a smile to Sarah's face which made me happy.
Sarah also had crafts brought to her room along with some new silly bands by the Child Life nurse at the hospital. She was happy to be able to work on something while waiting around for this and that to happen.
Tomorrow her treatment will begin around 9 am. It will last for about an hour and ten minutes to an hour and 15 minutes. She will then be free to go about her day. She will most likely spend some time with her favorite doctor, Dr. Locastro.
The other kids spent time with Bob today, and then Andy babysat for a bit. He did a great job. On top of taking care of Josh and Elizabeth he also straightened up the upstairs as well as did the dishes that the kids dirtied. I was grateful for his help. My in-laws helped to take the kids to their soccer practices. This was a godsend as it allowed me to get dinner (take-out) and have a few moments to straighten up a couple of things at home. My goal is to keep their routine as normal as possible.
My mom will be spending time with Sarah's in the morning tomorrow, so that Bob can work. This will allow me to spend the morning working on school work with the other kids. Tomorrow evening I will be staying with Sarah and Bob will be home with the kids.
As for the rest of the tonight, I plan on snuggling with the 3 kids I have at home. I will also spend some time thinking about how I need to have a better attitude about this whole process. I need to make sure I have a better attitude from here on out because getting cranky like I did today will help no one, and only make these next 2 weeks drag on forever.
Tuesday, April 29, 2014
Monday, April 28, 2014
V - I - C - T - O - R - Y for Sarah
I feel like a warrior who has just won a long hard fought battle against an opposing force that was so much larger and more powerful than myself. I feel relieved. I feel exhausted. Most of all, I feel grateful that I stuck to my guns and fought for what needed to be fought for.
Sarah is going to be getting the plasmapheresis treatment that I have been asking for for the last 6 months or so. She will be admitted to Akron Children's Hospital tomorrow morning, and will remain there for the next 2 weeks.. I am very scared because Sarah will have to have a port placed near her clavicle. I don't want this procedure to hurt her.
I am not sure what additional medications she will be one. I thought I read somewhere that steroids are given along with the plasmapheresis, but I am not sure. We will be getting a call from the nurse of the admitting neurologist in the morning once she has lined up a surgical team to place the port into Sarah.
I am grateful for Dr. Rensel. She heard what I saying this morning, and agreed with my assessment of the situation. She went ahead and found a neurologist at Akron Children's that would oversee Sarah's care for the next 2 weeks because she knew that this was the hospital where we preferred to be. (Which coincidentally is one of the doctor's who told us that she could not help us and that we should seek help somewhere else.) She put in some extra legwork to get Sarah the care that Sarah herself preferred to have, and I appreciate that.
Please keep her in your thoughts and prayers these next two weeks. She sure could use it.
Sarah is going to be getting the plasmapheresis treatment that I have been asking for for the last 6 months or so. She will be admitted to Akron Children's Hospital tomorrow morning, and will remain there for the next 2 weeks.. I am very scared because Sarah will have to have a port placed near her clavicle. I don't want this procedure to hurt her.
I am not sure what additional medications she will be one. I thought I read somewhere that steroids are given along with the plasmapheresis, but I am not sure. We will be getting a call from the nurse of the admitting neurologist in the morning once she has lined up a surgical team to place the port into Sarah.
I am grateful for Dr. Rensel. She heard what I saying this morning, and agreed with my assessment of the situation. She went ahead and found a neurologist at Akron Children's that would oversee Sarah's care for the next 2 weeks because she knew that this was the hospital where we preferred to be. (Which coincidentally is one of the doctor's who told us that she could not help us and that we should seek help somewhere else.) She put in some extra legwork to get Sarah the care that Sarah herself preferred to have, and I appreciate that.
Please keep her in your thoughts and prayers these next two weeks. She sure could use it.
Saturday, April 26, 2014
Everything's Gonna Be Alright
Sarah is feeling better today. Her vision is still 20/100 in her right eye, but her left eye has improved from 20/200 to 20/100. She still has black spots and blurriness in both of her eyes but both symptoms have subsided since yesterday. I no longer look like a cyclops to her because the missing vision in the center of her left eye has returned. I am so glad I listened to my gut and did not have her admitted to the hospital yesterday (or the day before or the day before that...).
Things are not great, but they are better than yesterday - for that I am so very thankful. Despite Bob's and my reservations Sarah decided to play in her soccer game, and I am proud of her for doing so. I am proud of her for listening to herself, and not others (i.e. her parents), and for doing what she knew to be right in her heart. She certainly did not play well, and I knew she had trouble seeing the entire time she played, but to those who don't know what is going on inside her body she just looked like an unskilled soccer player. I'll take it.
Bob and I will be contacting a hospital in Buffalo, NY that specializes in pediatric demyelinating diseases such as MS and NMO, on Monday to find out what we have to do to get Sarah seen by their team of doctors. If that does not work out, we have beloved friends who live in the Boston area, and I know that there is a wonderful children's hospital there that also specializes in demyelinating diseases in the pediatric population. We could stay with those friends while attempting to get Sarah the care she so desperately needs.
Getting family thereapy has proven to be a bit harder than I thought. I have called two well respected facilities and neither can offer the kind of therapy we are looking for. One of them has offered to supply us with a list of doctors who may be able to assist us in learning some tools that will help us not only cope with this diseases effects, but also to thrive in spite of it. I plan on taking them up on their offer.
On another note, I think I am going to limit (or try to anyway) my posts about Sarah's health. I have these 3 other amazing children whom I hardly ever mention because I have allowed this disease to take up so much of my life. I also have an amazing daughter who is amazing for reasons that have nothing to do with her disease. I want to start sharing more of their lives - their successes and triumphs - because they deserve some of the spotlight as well. It is so easy to allow a disease such as Sarah's to swallow a family up whole without ever realizing it is happening. This doesn't mean that Sarah's illness is any less important to me. In fact, that is so very far from the truth, but what it does mean is that I need to start moving on with my life - with our lives. This disease is not going to go away. It is not going to disappear, and unfortunately I am never going to wake up and realize that this past year and the years to come were a bad dream. But I can stop allowing it to take the center stage of a very sacred space - my blog. In doing so I think that this will in turn allow me to move on in other area's of my life as well.
I will of course always keep you updated on any significant changes, any hospitalizations, or any pertinent news regarding Sarah's health. I just want to step back from the heaviness of all that this disease tends to bring. I want to show you all the wonderful things about my life. I want to tell you stories of beauty that surround these amazing souls that live in my heart day in and day out: Andy, Josh, Sarah, and Elizabeth. No sickness, no sadness, no grief. Just amazing stories about amazing kids, and the honest to goodness amazing life that I have been truly blessed to live.
Things are not great, but they are better than yesterday - for that I am so very thankful. Despite Bob's and my reservations Sarah decided to play in her soccer game, and I am proud of her for doing so. I am proud of her for listening to herself, and not others (i.e. her parents), and for doing what she knew to be right in her heart. She certainly did not play well, and I knew she had trouble seeing the entire time she played, but to those who don't know what is going on inside her body she just looked like an unskilled soccer player. I'll take it.
Bob and I will be contacting a hospital in Buffalo, NY that specializes in pediatric demyelinating diseases such as MS and NMO, on Monday to find out what we have to do to get Sarah seen by their team of doctors. If that does not work out, we have beloved friends who live in the Boston area, and I know that there is a wonderful children's hospital there that also specializes in demyelinating diseases in the pediatric population. We could stay with those friends while attempting to get Sarah the care she so desperately needs.
Getting family thereapy has proven to be a bit harder than I thought. I have called two well respected facilities and neither can offer the kind of therapy we are looking for. One of them has offered to supply us with a list of doctors who may be able to assist us in learning some tools that will help us not only cope with this diseases effects, but also to thrive in spite of it. I plan on taking them up on their offer.
On another note, I think I am going to limit (or try to anyway) my posts about Sarah's health. I have these 3 other amazing children whom I hardly ever mention because I have allowed this disease to take up so much of my life. I also have an amazing daughter who is amazing for reasons that have nothing to do with her disease. I want to start sharing more of their lives - their successes and triumphs - because they deserve some of the spotlight as well. It is so easy to allow a disease such as Sarah's to swallow a family up whole without ever realizing it is happening. This doesn't mean that Sarah's illness is any less important to me. In fact, that is so very far from the truth, but what it does mean is that I need to start moving on with my life - with our lives. This disease is not going to go away. It is not going to disappear, and unfortunately I am never going to wake up and realize that this past year and the years to come were a bad dream. But I can stop allowing it to take the center stage of a very sacred space - my blog. In doing so I think that this will in turn allow me to move on in other area's of my life as well.
I will of course always keep you updated on any significant changes, any hospitalizations, or any pertinent news regarding Sarah's health. I just want to step back from the heaviness of all that this disease tends to bring. I want to show you all the wonderful things about my life. I want to tell you stories of beauty that surround these amazing souls that live in my heart day in and day out: Andy, Josh, Sarah, and Elizabeth. No sickness, no sadness, no grief. Just amazing stories about amazing kids, and the honest to goodness amazing life that I have been truly blessed to live.
Friday, April 25, 2014
Sarah's Relapse
Sarah is having a relapse. Her vision is currently 20/200 in her left eye and 20/100 in her right eye. She is color blind in her right eye. There is a black spot in the center of her left eye which prevents her from seeing anything straight in front of her out of that eye.
Things are bad.
We are going to wait out the weekend to see how things go both because Sarah has asked us to and because Bob and I need to come up with a new game plan. The normal protocal of treating Sarah is no longer acceptable to us which is why we are not rushing to the hospital today and why we did not rush there yesterday either.
Her current treatment DOES NOT work. This will be our 8th time on these damn steroids and each time her vision takes more time to recover, and what she does recover is less and less. As soon as she comes off of her steroid taper she relapses. Steroids come with a cost. They are not a free pass to better health. Her bones and organs cannot take repeated exposure to these types of drugs. I have said that before, and I tired of saying that. I want someone in the medical community to HEAR me. I AM TIRED OF FEELING LIKE I AM SCREAMING FOR HELP FOR MY DAUGHTER AND NO MEDICAL PROFESSIONAL HEARS ME!!! DO YOU HEAR ME, DOCTORS?!!!!! YOUR CURRENT TREATMENT PLAN FOR SARAH IS NOT WORKING!!!! IT HASN'T WORKED FOR 11 MONTHS! NO, I AM NOT GOING TO WAIT JUST A LITTLE BIT LONGER TO SEE IF THIS OR THAT WORKS. I HAVE BEEN WAITING FOR MONTHS AND MONTHS!!!! AND YOU KNOW WHAT ELSE, DOCTORS? I AM WOMAN - NO, I AM A MOTHER - ON THE VERGE OF FREAKING LOSING IT SO YOU BETTER WATCH OUT.
(Thank you for letting me freak out just above. I needed that.)
There is a treatment called plasmapheresis that I think Sarah could benefit from. It is used to treat both MS and NMO patients when steroids are not working. I have inquired about it several times to both the Akron Children's neurology team and the Cleveland Clinic neurologists to no avail. I seem to hit a brick wall anytime the treatment is mentioned. Guess, who is going to plow through that brick wall come Monday? This Mama - that's who. There is merit and value to this treatment method. If you are curious - look it up - it is all right there. I think that the biggest problem is that it is costly....I'll let you form your own opinions right there about why I have not been successful in getting Sarah this treatment.
I know in my gut that Sarah's current treatment is no longer the way to go. I know that sounds so ridiculous that a gut feeling has so much standing in my life, but I know no other way anymore. My intuition is all I have to stand on a lot of the time, and it hasn't failed me yet. It is the only thing that hasn't - doctors, medicines - all of the things that are supposed to work and are supposed to be fail safe - are not. They have both failed Sarah tremendously.
We are going to wait things out at home. It is her request, and as her parents it is our job to honor that. Plus, I agree with her decision with all of my being. She is a smart, brave girl. She knows what she needs. She knows that by staying home her vision may get worse before it gets better. She also knows that her current treatment plan of 3 days of IV steroids followed by a 2-3 week taper does not work.
I am frustrated. I am tired of feeling like no one has any idea how to treat my daughter. I am tired of feeling like a ping pong being passed back and forth between doctors. I am tired of feeling like it is me vs. the establishment. The medical / insurance company system that we have in this country is bullshit. And I wouldn't wish my journey or anything similar on my worst enemy.
Oh, and if you are wondering - yes, I am on the verge of a freaking breakdown. Have a nice day!
Things are bad.
We are going to wait out the weekend to see how things go both because Sarah has asked us to and because Bob and I need to come up with a new game plan. The normal protocal of treating Sarah is no longer acceptable to us which is why we are not rushing to the hospital today and why we did not rush there yesterday either.
Her current treatment DOES NOT work. This will be our 8th time on these damn steroids and each time her vision takes more time to recover, and what she does recover is less and less. As soon as she comes off of her steroid taper she relapses. Steroids come with a cost. They are not a free pass to better health. Her bones and organs cannot take repeated exposure to these types of drugs. I have said that before, and I tired of saying that. I want someone in the medical community to HEAR me. I AM TIRED OF FEELING LIKE I AM SCREAMING FOR HELP FOR MY DAUGHTER AND NO MEDICAL PROFESSIONAL HEARS ME!!! DO YOU HEAR ME, DOCTORS?!!!!! YOUR CURRENT TREATMENT PLAN FOR SARAH IS NOT WORKING!!!! IT HASN'T WORKED FOR 11 MONTHS! NO, I AM NOT GOING TO WAIT JUST A LITTLE BIT LONGER TO SEE IF THIS OR THAT WORKS. I HAVE BEEN WAITING FOR MONTHS AND MONTHS!!!! AND YOU KNOW WHAT ELSE, DOCTORS? I AM WOMAN - NO, I AM A MOTHER - ON THE VERGE OF FREAKING LOSING IT SO YOU BETTER WATCH OUT.
(Thank you for letting me freak out just above. I needed that.)
There is a treatment called plasmapheresis that I think Sarah could benefit from. It is used to treat both MS and NMO patients when steroids are not working. I have inquired about it several times to both the Akron Children's neurology team and the Cleveland Clinic neurologists to no avail. I seem to hit a brick wall anytime the treatment is mentioned. Guess, who is going to plow through that brick wall come Monday? This Mama - that's who. There is merit and value to this treatment method. If you are curious - look it up - it is all right there. I think that the biggest problem is that it is costly....I'll let you form your own opinions right there about why I have not been successful in getting Sarah this treatment.
I know in my gut that Sarah's current treatment is no longer the way to go. I know that sounds so ridiculous that a gut feeling has so much standing in my life, but I know no other way anymore. My intuition is all I have to stand on a lot of the time, and it hasn't failed me yet. It is the only thing that hasn't - doctors, medicines - all of the things that are supposed to work and are supposed to be fail safe - are not. They have both failed Sarah tremendously.
We are going to wait things out at home. It is her request, and as her parents it is our job to honor that. Plus, I agree with her decision with all of my being. She is a smart, brave girl. She knows what she needs. She knows that by staying home her vision may get worse before it gets better. She also knows that her current treatment plan of 3 days of IV steroids followed by a 2-3 week taper does not work.
I am frustrated. I am tired of feeling like no one has any idea how to treat my daughter. I am tired of feeling like a ping pong being passed back and forth between doctors. I am tired of feeling like it is me vs. the establishment. The medical / insurance company system that we have in this country is bullshit. And I wouldn't wish my journey or anything similar on my worst enemy.
Oh, and if you are wondering - yes, I am on the verge of a freaking breakdown. Have a nice day!
Wednesday, April 23, 2014
Sarah
We are coming up on the 1 year anniversary of Sarah's diagnosis. May 18th to be exact. I find myself tearing up at random times, and feel the weight and enormity of the whole situation weighing down on my heart. She had trouble hunting for Easter eggs, and quietly pulled me aside after the first one (my spoiled kids got to partake in 3 Easter egg hunts on Sunday) to tell me that she had only collected a couple of eggs because she couldn't see them. I walked with her on her second hunt to try and help her locate as many we could, but all of the other kids followed us and she was embarrassed at having my help so she went her own way. On our 3rd hunt she seemed to be doing a bit better, but she still needed our help in finding obvious (to those of us with good vision) eggs in plain sight. It is times like these when her disease breaks my heart.
We went camping on Monday and she fared no better. (Our camera ran out of batteries, so I have no pictures. Boo!) Our campsite ran along a river, but in order to get to it you had to walk through some brush and trees. She kept getting caught in the pricker bushes because she could not see them. She walked into a bush while we were walking to the van to get something out of it because it did not yet have its leaves and blended into the background. The boys were so gracious with her, and I found them quietly leading her to the river holding back a pricker branch here or pushing aside a fallen twig there. They would warn her when the ground would become uneven so that she would not trip. I spotted a frog that I tried to point out to her when we were sharing some time alone and she could not see it. It was a miracle that the frog was so patient because the only way I could get her to see the frog was to take her hand and have her touch it. Once she touched it her eyes focused in on the animal and she was able to see it.
Her vision seems good at home because this is familiar. She does okay riding her bike along familiar routes and has a couple of girlfriends that she plays with and does not seem to have trouble seeing at their homes. Put her in new surrounding and the damage to her eyes becomes apparent to those who know her best. Her disease is a source of embarrassment for her, and I have witnessed her lying to people that she can see something that someone is trying to point out to her when she cannot. I know this because I know her, and I have learned to watch her like a hawk for the discreet signs that something is amiss.
As of yesterday, she began to have trouble again with blurriness. Bob and I thought this was because of the excitement of Easter followed by camping and not getting enough sleep. I asked her this afternoon how she felt. She was quiet for a moment, and said that she did not feel any better, but did not feel any worse either.
You can mark my words that she will be having another relapse soon. I have been through this too many times and have seen the signs and symptoms too much. I know that this sounds callous, but it is the truth. I worry because we have a trip planned to NYC in just a couple of weeks. I want that trip to be fun and filled with laughter. I want her to be able to see the sights and enjoy all NY has to offer.
I guess more than being able to enjoy a family vacation I want for her to have some stability in her vision. For this disease to just give her some peace. Even if only for a little while.
We went camping on Monday and she fared no better. (Our camera ran out of batteries, so I have no pictures. Boo!) Our campsite ran along a river, but in order to get to it you had to walk through some brush and trees. She kept getting caught in the pricker bushes because she could not see them. She walked into a bush while we were walking to the van to get something out of it because it did not yet have its leaves and blended into the background. The boys were so gracious with her, and I found them quietly leading her to the river holding back a pricker branch here or pushing aside a fallen twig there. They would warn her when the ground would become uneven so that she would not trip. I spotted a frog that I tried to point out to her when we were sharing some time alone and she could not see it. It was a miracle that the frog was so patient because the only way I could get her to see the frog was to take her hand and have her touch it. Once she touched it her eyes focused in on the animal and she was able to see it.
Her vision seems good at home because this is familiar. She does okay riding her bike along familiar routes and has a couple of girlfriends that she plays with and does not seem to have trouble seeing at their homes. Put her in new surrounding and the damage to her eyes becomes apparent to those who know her best. Her disease is a source of embarrassment for her, and I have witnessed her lying to people that she can see something that someone is trying to point out to her when she cannot. I know this because I know her, and I have learned to watch her like a hawk for the discreet signs that something is amiss.
As of yesterday, she began to have trouble again with blurriness. Bob and I thought this was because of the excitement of Easter followed by camping and not getting enough sleep. I asked her this afternoon how she felt. She was quiet for a moment, and said that she did not feel any better, but did not feel any worse either.
You can mark my words that she will be having another relapse soon. I have been through this too many times and have seen the signs and symptoms too much. I know that this sounds callous, but it is the truth. I worry because we have a trip planned to NYC in just a couple of weeks. I want that trip to be fun and filled with laughter. I want her to be able to see the sights and enjoy all NY has to offer.
I guess more than being able to enjoy a family vacation I want for her to have some stability in her vision. For this disease to just give her some peace. Even if only for a little while.
Saturday, April 19, 2014
Criticism
“The motive behind criticism often determines its validity. Those who care criticize where necessary. Those who envy criticize the moment they think that they have found a weak spot.”
Criticism is a fickle thing. What one person deems with critical eyes another sees with no faults. It is only when trying to look at the person behind the criticism can it be deemed valid advice or just something that should go in one ear and out the other.
I am the type of person that takes criticism - especially when it catches me off guard, and in which I think no criticism is warranted - very hard. I think about it and think about it and think about it, and then I stew about for a really long time. I take a person's own envy and make it out to be so much more than it needs to be. What I should be doing is taking a better look at the source, and determining if that source is a credible person in my life. If not, I am going to start to let those critical thoughts pass right from their mouths into one of my ears and right out the other. Even better, I think I am going to try and just avoid those persons altogether because those types of people will always be critical of something.
I am a good enough critic of myself, thank you very much. I am trying very hard to work on my own critical voice. Between myself, my family, and those select people I consider my true friends I have enough people to point out (constructively) my flaws and inaccuracies. I don't need false witnesses to critique my life or the lives of my children.
Part of learning to be Real, for me, means letting go of all of those who are enviously critical and only letting those who care stay in my life. Maybe that means losing some people I considered good acquaintances, but for the first time in my life I am okay with that. The freedom that comes along with knowledge is uplifting. It is like a weight has been lifted off of my shoulders.
So, go ahead and be critical. Yell and scream and spew your poisonous thoughts that are meant to disrupt. Slyly sneak in a comment or two here or there. Make your opinion known to anyone and everyone else. Just know that I will no longer be listening.
Friday, April 18, 2014
Getting It Done
We are slowly getting the interior of our home done. I will be posting pictures soon. Bob painted the girls room today, and we will be going to purchase them new bedding, lamps, and wall decorations this weekend. They are so excited. The upstairs of our home is one of the last things to get done and I am slowly seeing a vision. And everything will be completed within our budget. Even better. My house is beginning to feel like a home. The good feeling and mood of our home is priceless.
The outside is taking shape as well in terms of a vision, and we will begin to get things done in that regard as well in the next couple of weeks. The seeds have been planted that will hopefully supply much of our summer produce. They will be spending the next couple of weeks indoors growing strong enough to manage the outdoor temperatures.
I am finding some much needed peace within the walls of our home and the surrounding property, and I know that no matter what happens to our family we will always have this sacred place to come back to. There is nothing better than having a home base. This space is becoming very much loved despite its size and location. It is something that grounds us and is our one constant in our ever fluctuating life of such highs and lows that make up our every day. For that, I am very thankful.
The outside is taking shape as well in terms of a vision, and we will begin to get things done in that regard as well in the next couple of weeks. The seeds have been planted that will hopefully supply much of our summer produce. They will be spending the next couple of weeks indoors growing strong enough to manage the outdoor temperatures.
I am finding some much needed peace within the walls of our home and the surrounding property, and I know that no matter what happens to our family we will always have this sacred place to come back to. There is nothing better than having a home base. This space is becoming very much loved despite its size and location. It is something that grounds us and is our one constant in our ever fluctuating life of such highs and lows that make up our every day. For that, I am very thankful.
Wednesday, April 16, 2014
Coming Full Circle
Friends of our received some devastating news about their child. The kind of news that makes Sarah's issues seem like a walk in the park right now. My heart hurts for them in ways that I did not think was possible. I just want to hug them and cry with them and tell them how sorry I am for what they are going through now and will have to go through in the future.
And now I know. I know what our community of friends and family have felt like these last 11 months watching us go through everything we have with Sarah. I know how much they must have hurt. How much they must have wanted to do something, anything to help heal our pain, if only for a moment. How, if we would have let them, they would have shouldered our burden too and taken some of the load off of us so that we didn't have to feel like we were carrying something so heavy all by ourselves.
I see both sides now, both the receiver of terrible news and the bystander of loved ones receiving terrible news, and I didn't see it before. I couldn't see it before. It took something so terrible to happen to people that I love - unexpected medical news regarding their child - something that I could relate to in a way that most other people cannot - that showed me the other side. I have come full circle.
How I wish that I could make things better for them. How I wish that my loving them was going to be enough to carry them through the dark times they will have to somehow get through. How all of our love - their friends and collective families - could just be enough that it could make any and all of their hurt disappear. How I wish that somehow they could just wake up from their sleep (or lack thereof) tomorrow morning, and have the last few days of their lives be nothing more than a bad dream.
I know that everyone grieves differently. Some people (like me) want to hide in their own little world and cocoon themselves away from everything and everyone to take care of their own immediate family. Some people want to live like nothing has happened because processing such life altering news is too much. Still others want to talk to everyone and anyone about their life situation because talking about it makes them feel better. I don't know how my friends will grieve and get through this hard time.
What I do know, is that they have been amazing to me and Bob and to all of our children these last 11 months. They knew when to call and they knew when to back off. They found the perfect gifts for our family and sent them without telling us they were coming. They took the time to figure out what type of grievers we are, and they followed our lead. They offered their support and their love in the most perfect way. I only hope that I can do the same for them.
And now I know. I know what our community of friends and family have felt like these last 11 months watching us go through everything we have with Sarah. I know how much they must have hurt. How much they must have wanted to do something, anything to help heal our pain, if only for a moment. How, if we would have let them, they would have shouldered our burden too and taken some of the load off of us so that we didn't have to feel like we were carrying something so heavy all by ourselves.
I see both sides now, both the receiver of terrible news and the bystander of loved ones receiving terrible news, and I didn't see it before. I couldn't see it before. It took something so terrible to happen to people that I love - unexpected medical news regarding their child - something that I could relate to in a way that most other people cannot - that showed me the other side. I have come full circle.
How I wish that I could make things better for them. How I wish that my loving them was going to be enough to carry them through the dark times they will have to somehow get through. How all of our love - their friends and collective families - could just be enough that it could make any and all of their hurt disappear. How I wish that somehow they could just wake up from their sleep (or lack thereof) tomorrow morning, and have the last few days of their lives be nothing more than a bad dream.
I know that everyone grieves differently. Some people (like me) want to hide in their own little world and cocoon themselves away from everything and everyone to take care of their own immediate family. Some people want to live like nothing has happened because processing such life altering news is too much. Still others want to talk to everyone and anyone about their life situation because talking about it makes them feel better. I don't know how my friends will grieve and get through this hard time.
What I do know, is that they have been amazing to me and Bob and to all of our children these last 11 months. They knew when to call and they knew when to back off. They found the perfect gifts for our family and sent them without telling us they were coming. They took the time to figure out what type of grievers we are, and they followed our lead. They offered their support and their love in the most perfect way. I only hope that I can do the same for them.
Tuesday, April 15, 2014
Sarah's Appointment & Bob's Birthday
I don't have really any news to report about Sarah which is both a good and a bad thing. Her MRI came back clean meaning that there are no new lesions, no active lesions, and the ones that she did have are getting smaller. This poses a bit of a problem though because she is still relapsing at a significant rate. Normally, a person such as Sarah would show active lesions which would be represented in her continual vision loss once she ends her steroid taper. Dr. Rensel said that Sarah's body could just be responding so quickly to the steroid treatments that her brain appears to be doing so well. She said that if an MRI was done when she was off of her steroids then it could have showed different results than the one that was done on Friday when she was well into her steroid taper.
Sarah is going to be on a 2.5mg dose every other day for the next 3 months to see if that keeps her relapses at bay. If it does not, then we most likely will up her Imuran dosage. Sarah's neurologist explained to us that with diseases such as NMO (or even MS) a lot of times it is hit or miss with medicine, and that it takes some time to find not only the right drug, but the right dosage as well that will effectively treat the symptoms one is experiencing and keep the disease in question at bay.
She will have a more in depth MRI in 3 months. We will look at taking her off her steroids at that time. In the mean time I am going to begin doing some research on my own to see if I cannot find something that maybe the doctors are accidentally over looking. Something just doesn't seem right. Dr. Rensel mentioned that she might be suffering from a second autoimmune disease relating to the eyes, and I want to see what I can find out there. Bob and I stumbled upon information regarding NMO before Sarah started to be treated for the disease, and thought that she might have it based on what we found out about it online.
Bob pointed out recently that Sarah had her best stint of health between mid-July and the end of October this past year. The weather here was warm and sunny, so we are curious to see if she remains relapse free again during the end of the summer months. If this is the case I think we will seriously consider moving to a warmer climate. If she remains relapse free as well over the course of the summer I would be more inclined to consider her as an MS patient. The weather seems to have more to do with MS patients (in terms of there being less people who suffer from MS in warmer climates near the coast) than NMO (location and weather seem to have no effect on incidents of people suffering from the disease).
She has been getting belly aches on and off again and can distinguish between a normal belly ache and a steroid belly ache. I will be keeping an eye on that because of the increased risk of developing an ulcer because of her prolonged use of steroids.
Finally, her vision is testing out at 20/100 on her left eye and 20/50 on her right. I am a bit discouraged by this as she has regained very little of her vision back since her last course of high dose steroid treatment. Her black spots are also an ever present nuisance and have also not gone away. If she relapses again I think I am going to seriously inquire about plasmapheresis again. I have brought this treatment up several times, and have been told that steroids are the only effective treatment for Sarah's acute state when she relapses, but based on information I have found online this just does not seem to be the case. I have read where there have been patients who have not responded well to steroids (which I would consider Sarah to be a part of that group since her steroid treatments are doing nothing to eradicate her eye issues as they are supposed to do) and those people do very well once they go through the plasmapheresis process. One thing I do know about that treatment is that it is very expensive. I have learned enough to know that hospitals (no matter what they may proclaim on their taxes) are big business where money is king. I can see getting push back on this treatment not because it doesn't work, but because it costs so much money. I don't know...
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Bob's birthday was pretty good. I signed him up for piano lessons to take alongside Josh. I also booked a 1 night camping trip next week to Mohican State Park. Just the 6 of us (and Lily too) and will heading out for a couple of days of fun.
The Great Lakes Brewery restaurant was a lot of fun. The kids loved the West Side Market and haggling with the vendors over their produce. We all agreed that I am better at scoring a deal than Bob. Josh was the most impressed by the variety and the environment. He wishes we could shop up there every week.
Sarah is going to be on a 2.5mg dose every other day for the next 3 months to see if that keeps her relapses at bay. If it does not, then we most likely will up her Imuran dosage. Sarah's neurologist explained to us that with diseases such as NMO (or even MS) a lot of times it is hit or miss with medicine, and that it takes some time to find not only the right drug, but the right dosage as well that will effectively treat the symptoms one is experiencing and keep the disease in question at bay.
She will have a more in depth MRI in 3 months. We will look at taking her off her steroids at that time. In the mean time I am going to begin doing some research on my own to see if I cannot find something that maybe the doctors are accidentally over looking. Something just doesn't seem right. Dr. Rensel mentioned that she might be suffering from a second autoimmune disease relating to the eyes, and I want to see what I can find out there. Bob and I stumbled upon information regarding NMO before Sarah started to be treated for the disease, and thought that she might have it based on what we found out about it online.
Bob pointed out recently that Sarah had her best stint of health between mid-July and the end of October this past year. The weather here was warm and sunny, so we are curious to see if she remains relapse free again during the end of the summer months. If this is the case I think we will seriously consider moving to a warmer climate. If she remains relapse free as well over the course of the summer I would be more inclined to consider her as an MS patient. The weather seems to have more to do with MS patients (in terms of there being less people who suffer from MS in warmer climates near the coast) than NMO (location and weather seem to have no effect on incidents of people suffering from the disease).
She has been getting belly aches on and off again and can distinguish between a normal belly ache and a steroid belly ache. I will be keeping an eye on that because of the increased risk of developing an ulcer because of her prolonged use of steroids.
Finally, her vision is testing out at 20/100 on her left eye and 20/50 on her right. I am a bit discouraged by this as she has regained very little of her vision back since her last course of high dose steroid treatment. Her black spots are also an ever present nuisance and have also not gone away. If she relapses again I think I am going to seriously inquire about plasmapheresis again. I have brought this treatment up several times, and have been told that steroids are the only effective treatment for Sarah's acute state when she relapses, but based on information I have found online this just does not seem to be the case. I have read where there have been patients who have not responded well to steroids (which I would consider Sarah to be a part of that group since her steroid treatments are doing nothing to eradicate her eye issues as they are supposed to do) and those people do very well once they go through the plasmapheresis process. One thing I do know about that treatment is that it is very expensive. I have learned enough to know that hospitals (no matter what they may proclaim on their taxes) are big business where money is king. I can see getting push back on this treatment not because it doesn't work, but because it costs so much money. I don't know...
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Bob's birthday was pretty good. I signed him up for piano lessons to take alongside Josh. I also booked a 1 night camping trip next week to Mohican State Park. Just the 6 of us (and Lily too) and will heading out for a couple of days of fun.
The Great Lakes Brewery restaurant was a lot of fun. The kids loved the West Side Market and haggling with the vendors over their produce. We all agreed that I am better at scoring a deal than Bob. Josh was the most impressed by the variety and the environment. He wishes we could shop up there every week.
Monday, April 14, 2014
A Birthday Celebration
Today is Bob's birthday. He is turning 35 years young. His birthday is the first in family, and is then followed quickly by Andy, me, and then Josh. Today, though, is all about him....
Today is a day of celebration. A day to start anew. A day to dream of what the next year will bring. A day of Hope.
We will be starting off our birthday with a nice big birthday breakfast made of bacon, eggs, english muffins, and some freshly brewed coffee. Following that will be present opening (or if the kids cannot wait - which what kid can? - we will be opening gifts and then having breakfast.) We then have to make a trip up to see Dr. Rensel. She will be going over Sarah's eye exam and MRI from this past Friday. (PLEASE wish us some good luck.) Hopefully, she will have some news as to why Sarah is having such a hard time with her eyesight once she is off of her steroids. After her appointment we are going to head over to the Great Lakes Brewery for some lunch. This will be followed by a trip to the West Side Market so that Bob can pick up a steak to cook out here at home. This evening we will be low key with cake and family time along with video games for Bob and the boys.
I am pretty excited about Bob's gifts. I think he will like them. I tried really hard this year to make them something special. To go along with our theme of 'No Regrets' living. I think I succeeded. I cannot tell you yet what I got him in the event that he reads this before he opens his gifts. I have worked too hard on this to let it be spoiled. Needless to say I feel like it is Christmas morning. I cannot wait to see the look on his face when he opens his card. Sarah bought him a card for his birthday that I think is going to make him cry. I started crying right there in the store when she handed it to me. It is the perfect birthday card from her to him, and it will be one that he will treasure and keep forever.
Bob is a really good man. An honest man. A hard worker. A really sweet and good husband. And an amazing father. My kids and I are so lucky to have him in our lives. He is a genuine man. A rare man among the many that are out there. A man of character.
Happy Birthday, Bobby. I love you so very, very much.
Today is a day of celebration. A day to start anew. A day to dream of what the next year will bring. A day of Hope.
We will be starting off our birthday with a nice big birthday breakfast made of bacon, eggs, english muffins, and some freshly brewed coffee. Following that will be present opening (or if the kids cannot wait - which what kid can? - we will be opening gifts and then having breakfast.) We then have to make a trip up to see Dr. Rensel. She will be going over Sarah's eye exam and MRI from this past Friday. (PLEASE wish us some good luck.) Hopefully, she will have some news as to why Sarah is having such a hard time with her eyesight once she is off of her steroids. After her appointment we are going to head over to the Great Lakes Brewery for some lunch. This will be followed by a trip to the West Side Market so that Bob can pick up a steak to cook out here at home. This evening we will be low key with cake and family time along with video games for Bob and the boys.
I am pretty excited about Bob's gifts. I think he will like them. I tried really hard this year to make them something special. To go along with our theme of 'No Regrets' living. I think I succeeded. I cannot tell you yet what I got him in the event that he reads this before he opens his gifts. I have worked too hard on this to let it be spoiled. Needless to say I feel like it is Christmas morning. I cannot wait to see the look on his face when he opens his card. Sarah bought him a card for his birthday that I think is going to make him cry. I started crying right there in the store when she handed it to me. It is the perfect birthday card from her to him, and it will be one that he will treasure and keep forever.
Bob is a really good man. An honest man. A hard worker. A really sweet and good husband. And an amazing father. My kids and I are so lucky to have him in our lives. He is a genuine man. A rare man among the many that are out there. A man of character.
Happy Birthday, Bobby. I love you so very, very much.
Thursday, April 10, 2014
Just Do It
I think Nike really has it right with their "Just Do It" slogan. Sometimes life really stinks and there seems to be no end in sight to the madness. It can seem overwhelming or even hopeless. Sometimes life doesn't make sense and things happen to people that shouldn't. Sometimes you wonder if you can make it through all that has been thrown at you.
Maybe you find yourself slogging through your days getting only what absolutely needs to get done ever so thankful when your head hits the pillow that you made it through. What got you through that day? You just did it.
Maybe that next day you find that you are able to not only get through the day, but you are also able to find a tad bit of joy, not too much mind you, but a tad bit. And when your head hits the pillow that night you find that your day was better than yesterday - still a long way off from the 'good old days', but still better than it had been the day before. You know what got you there? You just did it.
After several more days of getting through your days you find a little bit more joy in each day until one night when your head hits the pillow you realize that you actually had a pretty decent day. Again, I ask you, what got you to that point? You just did it.
Day in and day out we all just do it. Some of us are able to do it better than others for a while, and then the pendulum of life's circumstances change and where you were once slogging through your days and your buddy was flying high you are now the one flying high and your buddy is slogging through life. But no matter what your current circumstances are you are getting through them by just doing it.
I see a light at the end of the tunnel now because I have gone through so many days just doing it and doing it again and again. Even in the darkness I kept at it because life demanded that I do so as a mother and a wife. Was it always pretty? Absolutely not. Were there times when I thought there was no way I could do it anymore? You bet. But I did it anyway.
I am glad that life has forced me to keep at it even when I wanted to push the 'pause' button and just get my crap together without all of the day to day stuff. To just have the time to figure out some pretty heavy stuff going on in my life. I am glad that I couldn't stop my life because, you know what? I am super proud of myself now. I got through, and will most likely have to get through again and again, some pretty life altering things. But I am stronger now than I was then because I was able to make some headway even with the daily grinding of life's everyday requirements. Am I out of the woods yet? No way. I still have so much farther to go until the light is no longer viewed through my eyes with tunnel vision. But I know that someday, with a little bit of hope, and a lot of stick-to-it-ness I can get there. I underestimated my strength. I mistakenly saw my despair as a weakness. But I will do that no more. Despair is a blessing in disguise because it reflects to you, from the heights of joy, just how far you have come.
I am a strong, powerful woman - that is Real. I am able to see that now only because I did what Nike encourages people to do every single day. I just did it.
Maybe you find yourself slogging through your days getting only what absolutely needs to get done ever so thankful when your head hits the pillow that you made it through. What got you through that day? You just did it.
Maybe that next day you find that you are able to not only get through the day, but you are also able to find a tad bit of joy, not too much mind you, but a tad bit. And when your head hits the pillow that night you find that your day was better than yesterday - still a long way off from the 'good old days', but still better than it had been the day before. You know what got you there? You just did it.
After several more days of getting through your days you find a little bit more joy in each day until one night when your head hits the pillow you realize that you actually had a pretty decent day. Again, I ask you, what got you to that point? You just did it.
Day in and day out we all just do it. Some of us are able to do it better than others for a while, and then the pendulum of life's circumstances change and where you were once slogging through your days and your buddy was flying high you are now the one flying high and your buddy is slogging through life. But no matter what your current circumstances are you are getting through them by just doing it.
I see a light at the end of the tunnel now because I have gone through so many days just doing it and doing it again and again. Even in the darkness I kept at it because life demanded that I do so as a mother and a wife. Was it always pretty? Absolutely not. Were there times when I thought there was no way I could do it anymore? You bet. But I did it anyway.
I am glad that life has forced me to keep at it even when I wanted to push the 'pause' button and just get my crap together without all of the day to day stuff. To just have the time to figure out some pretty heavy stuff going on in my life. I am glad that I couldn't stop my life because, you know what? I am super proud of myself now. I got through, and will most likely have to get through again and again, some pretty life altering things. But I am stronger now than I was then because I was able to make some headway even with the daily grinding of life's everyday requirements. Am I out of the woods yet? No way. I still have so much farther to go until the light is no longer viewed through my eyes with tunnel vision. But I know that someday, with a little bit of hope, and a lot of stick-to-it-ness I can get there. I underestimated my strength. I mistakenly saw my despair as a weakness. But I will do that no more. Despair is a blessing in disguise because it reflects to you, from the heights of joy, just how far you have come.
I am a strong, powerful woman - that is Real. I am able to see that now only because I did what Nike encourages people to do every single day. I just did it.
Wednesday, April 9, 2014
State of Affairs
As much as I want to press the 'pause' button on my life so that I can get my bearings on all that has happened in our family life outside of the normal things that happen when one chooses to have a family, I have not found a way to do that. Therefore, each day I trudge on trying to make the best of each day. After all, that is all that any of us can do, right?
Some days around here are better than others and it seems that as of late there have more bad days than good (at least with me), but as each day passes and I get a hold on this life I have created for both myself and my family I find that my roots are once again taking hold and I am able to see the light at the end of the tunnel.
Spring, it seems, has finally arrived. With that comes the knowledge that my children are out of doors more often than not enjoying the fresh air and the (sometimes) sunshine. We aren't letting a little bit of rain deter us though, and last week we found ourselves on a 2 miles hike in the rain that led us through muddy paths and puddles. Springtime also means kids who pass out almost immediately upon their heads hitting their pillows. This turns out to be a bonus for me as there are not children in my house who climb out of bed 50 times needing to tell me one last thing or to get a drink or use the restroom. It also means that friends are once again in abundance and laughter fills the air.
Sarah is doing okay. On Friday, she will have an MRI and an appointment with an ophthalmologist at the Cleveland Clinic who will (hopefully) be able to determine if she has a second autoimmune disease which is causing her frequent relapses when she comes off of her steroids. I am not holding my breath as time has taught me that so much of what is happening to Sarah stumps even those who have years and years of training is diseases such as hers. Vision wise it seems that she has once again gained some of her vision back, but I find that she still struggles with distances very much. Glasses will not help her as the damage that is causing these vision issues are not at the front of her eye, which is where I understand glasses can help improve vision, but rather in the back of her eye deep in the recesses of her optic nerve where glasses cannot help. She is taking her medication faithfully although I am not sure if this is even helping. Time will tell, I suppose. Mood wise she has her struggles. Steroids can cause an increase in a persons agitation level, and I see Sarah losing her patience with Elizabeth a little more easily than normal. She is also struggling with her weight as she now weights as much as Josh. (She found this out when both children were weighed to determine the appropriate resistance level for bands while on a bungee type ride at Fun-N-Stuff.) I have told her that while her weight is higher than it used to be this is only because of her medication, and that once we can figure out her right dosage of Imuran (which should stop her frequent relapses), and can get her off of steroids her weight should begin to fall off. Still, it is not easy having to have these kinds of conversations with a little girl, and is yet another side effect of a disease of such gravity as the one that resides inside of her small frame.
Soccer season has begun which is both a blessing and a curse. I love watching my kids play soccer, and I would most definitely describe us as a 'soccer family' with myself at the helm as your typical 'soccer mom'. All 4 kids are playing again this year and their practices all fall on Tuesdays and Thursdays. It becomes difficult when I am trying to get all of them to different practice locations at around the same time. It does not help in the least bit that 3 of the 4 soccer teams are going to be changing their practice locations on a regular basis as well. This coupled with Bob working second shift means that it will make for an interesting season as I navigate through the web of different practice schedules for all of them. I am thankful that I have had several families offer to help get the kids to where they need to be and I very may well end up taking them up on their offers. We shall see.
I am getting ready to put my garden in, and I am very excited about this. I think that we are almost getting to the point where the temperature at night will not fall too low as to kill any seeds I am trying to grow. I hope that I have a somewhat successful garden, but I also know that a lot can go wrong. I do know that gardening has a learning curve, so I suspect that I will learn a little more each year allowing me for more and more success I get a garden or two under my belt.
The changes inside the house are slowly taking shape. I think that we have a game plan for every room now which is a comfort. I do realize that I need to stay off of Pinterest for a while, as I will never be the type of person to have a Pottery Barn interior. I was finding that I was getting extremely discouraged at what was taking shape in my home because it didn't look any where near perfect. Bob was able to pull me off of the ledge this week, and get me to realize that our house isn't going to look the way I want it to over night and as long as we make some progress each week that is all that we can ask for.
Schooling is back in full swing much to some of the kids dismay. For a while there we were on a bare bones schedule of Spelling, Reading, and Math so as to give the kids some time to explore their own interests, but after talking with Bob we both realized that they all need a bit more than that to get the kind of education that we want them to have. So, we are once again back to grammar, writing, reading, spelling, latin, logic, math, history, and a smudge of science. I learned this year that I am terrible at science in terms of creating a curriculum, and for those children who will be staying home with me next year I will be purchasing an actual science curriculum. Josh and Sarah have taken to this new schedule very well. Elizabeth, too, seems to be getting her work done without too much of a fight. Andy hates this renewed schedule and feels that he has too much work to do. I think that he just tends to be a bit lackadaisical and would rather be spending his day in his room playing cards or reading.
I am still hoping that all of the kids will choose to stay home in the fall although the likely hood of that does not look too good. I am trying to prepare myself to let those that want to go back to do so, although it will make me very sad to send them back. Our school district seems to be going in the pooper with lines drawn between the school board and the rest of the community. I hate Common Core, and feel very badly for teachers now-a-days as they struggle to keep up with the ever increasing demands of what the government is mandating children "learn". I also worry about the fast paced environment of technological advancements that I will be sending my kids into. They will be walking into a world where cell phones, ipods, ipads, and the like are welcomed by our school district, and in which children are accessing porn and other things I absolutely don't want any of my kids exposed to. (When Andy was in the middle school last year he regularly told me that kids would pull up inappropriate content while on school property even though when I inquired about this I was told it was impossible because the school "blocked" access to certain material online.) I find my conservative parenting to be even more challenging when I send my kids out into a world such as this on an almost daily basis during the school year, and it makes me want to hold on to my group even tighter and for longer. I want to make sure that they have a really solid foundation so that when they do have to be thrust into this world they will have the ability to handle adult situations and adult content with more skills emotionally than just sending them into this world with immature minds that are still growing and learning how to navigate between childhood and adulthood.
I am going to try and venture out to do more things with the homeschool group that is available in the Falls. I did 1 thing with them all year and I think that my kids may have benefited from getting together with others in their same situation a bit more. I wonder if they would have had the opportunity to forge friendships with some of these kids if Josh and Sarah would be so eager to go back to school. (Josh is now leaning more and more towards going back to school - although his reasons - school lunches and hanging out with his buddies more - are not sitting well with me. We still have time to discuss this with him though to make sure that he wants to go back for something more concrete than those two reasons.Especially since he sees his buddies on a regular basis. I know that he doesn't like it when his friends talk about stuff that is going on at school and he has no clue what they are talking about although, again I struggle to see the validity in that being the main reason he wants to go back.)
Bob's birthday is on Monday and the kids are I are really excited about the gift he will be getting. I think he will enjoy it as well although he is a tough cookie to buy things for sometimes. Sarah has another appointment on Monday with Dr. Rensel, so we are going to spend the day in Cleveland hitting up the West Side Market and the Great Lakes Brewery when her appointment is over. It should be a relaxing day - provided we don't get bad news from Sarah's MRI that she is having the this Friday.
Bob has really been helping me out lately, and I appreciate the man he is more and more as our lives move forward. He really is a stand up guy, and he puts up with a lot from me. I am a very complicated woman, and it takes a special guy to handle all that I am. I am grateful that he has stuck by my side all of these years because I don't know that I would have had the strength to do so if our roles were reversed. I am trying to soften up a bit because I am just such a tough cookie.Taking the time to figure out what it means to be me in a Real sense has helped our relationship by leaps and bounds. We have been through so much this past year, and I truly think that most couples would have cracked - to be honest there was a point recently where I thought we were going to crack, but we stuck it out and worked harder than we ever have to get through a really tough time. I am so grateful to him that he is as willing to make this marriage work. There have been times when it was his willingness alone that has carried us, and it means the world to me that I matter so much to him to stick it out. Marriage can be really hard, and when you add in a child that is as sick as Sarah is it can make it all that much harder as each person tries to come to terms with the illness both on their own and together as a family.
I am still working very hard each day to find out what it means to me to be Real. I have never really taken the time to get to know myself as I am, and not as I should be that there is so much about myself that I do not know. I find myself retreating a lot and reflecting on a lot of things, and taking this time has helped me in a lot of ways. I still have so much work to go, but just getting myself on this path and working towards this goal is a step in the right direction.
I find that I am cautious about the future as of late. I am no longer optimistic about it, but I am not pessimistic about it either. Experience has taught me that both optimism and pessimism haven't served me as well I as would have liked them to, and so now all I can do is wait for each new day to come while doing my best to not worry or celebrate the future too much. I am constantly trying to remind myself that all I have it today - actually all I really have is this moment.
Life can be really, really hard sometimes. Harder than I ever imagined it possible. I hope someday I can look back on this part of my life and reflect on all that I have learned, and more importantly, to see how this piece fits into this puzzle called My Life because sometimes nothing seems to make sense.
Some days around here are better than others and it seems that as of late there have more bad days than good (at least with me), but as each day passes and I get a hold on this life I have created for both myself and my family I find that my roots are once again taking hold and I am able to see the light at the end of the tunnel.
Spring, it seems, has finally arrived. With that comes the knowledge that my children are out of doors more often than not enjoying the fresh air and the (sometimes) sunshine. We aren't letting a little bit of rain deter us though, and last week we found ourselves on a 2 miles hike in the rain that led us through muddy paths and puddles. Springtime also means kids who pass out almost immediately upon their heads hitting their pillows. This turns out to be a bonus for me as there are not children in my house who climb out of bed 50 times needing to tell me one last thing or to get a drink or use the restroom. It also means that friends are once again in abundance and laughter fills the air.
Sarah is doing okay. On Friday, she will have an MRI and an appointment with an ophthalmologist at the Cleveland Clinic who will (hopefully) be able to determine if she has a second autoimmune disease which is causing her frequent relapses when she comes off of her steroids. I am not holding my breath as time has taught me that so much of what is happening to Sarah stumps even those who have years and years of training is diseases such as hers. Vision wise it seems that she has once again gained some of her vision back, but I find that she still struggles with distances very much. Glasses will not help her as the damage that is causing these vision issues are not at the front of her eye, which is where I understand glasses can help improve vision, but rather in the back of her eye deep in the recesses of her optic nerve where glasses cannot help. She is taking her medication faithfully although I am not sure if this is even helping. Time will tell, I suppose. Mood wise she has her struggles. Steroids can cause an increase in a persons agitation level, and I see Sarah losing her patience with Elizabeth a little more easily than normal. She is also struggling with her weight as she now weights as much as Josh. (She found this out when both children were weighed to determine the appropriate resistance level for bands while on a bungee type ride at Fun-N-Stuff.) I have told her that while her weight is higher than it used to be this is only because of her medication, and that once we can figure out her right dosage of Imuran (which should stop her frequent relapses), and can get her off of steroids her weight should begin to fall off. Still, it is not easy having to have these kinds of conversations with a little girl, and is yet another side effect of a disease of such gravity as the one that resides inside of her small frame.
Soccer season has begun which is both a blessing and a curse. I love watching my kids play soccer, and I would most definitely describe us as a 'soccer family' with myself at the helm as your typical 'soccer mom'. All 4 kids are playing again this year and their practices all fall on Tuesdays and Thursdays. It becomes difficult when I am trying to get all of them to different practice locations at around the same time. It does not help in the least bit that 3 of the 4 soccer teams are going to be changing their practice locations on a regular basis as well. This coupled with Bob working second shift means that it will make for an interesting season as I navigate through the web of different practice schedules for all of them. I am thankful that I have had several families offer to help get the kids to where they need to be and I very may well end up taking them up on their offers. We shall see.
I am getting ready to put my garden in, and I am very excited about this. I think that we are almost getting to the point where the temperature at night will not fall too low as to kill any seeds I am trying to grow. I hope that I have a somewhat successful garden, but I also know that a lot can go wrong. I do know that gardening has a learning curve, so I suspect that I will learn a little more each year allowing me for more and more success I get a garden or two under my belt.
The changes inside the house are slowly taking shape. I think that we have a game plan for every room now which is a comfort. I do realize that I need to stay off of Pinterest for a while, as I will never be the type of person to have a Pottery Barn interior. I was finding that I was getting extremely discouraged at what was taking shape in my home because it didn't look any where near perfect. Bob was able to pull me off of the ledge this week, and get me to realize that our house isn't going to look the way I want it to over night and as long as we make some progress each week that is all that we can ask for.
Schooling is back in full swing much to some of the kids dismay. For a while there we were on a bare bones schedule of Spelling, Reading, and Math so as to give the kids some time to explore their own interests, but after talking with Bob we both realized that they all need a bit more than that to get the kind of education that we want them to have. So, we are once again back to grammar, writing, reading, spelling, latin, logic, math, history, and a smudge of science. I learned this year that I am terrible at science in terms of creating a curriculum, and for those children who will be staying home with me next year I will be purchasing an actual science curriculum. Josh and Sarah have taken to this new schedule very well. Elizabeth, too, seems to be getting her work done without too much of a fight. Andy hates this renewed schedule and feels that he has too much work to do. I think that he just tends to be a bit lackadaisical and would rather be spending his day in his room playing cards or reading.
I am still hoping that all of the kids will choose to stay home in the fall although the likely hood of that does not look too good. I am trying to prepare myself to let those that want to go back to do so, although it will make me very sad to send them back. Our school district seems to be going in the pooper with lines drawn between the school board and the rest of the community. I hate Common Core, and feel very badly for teachers now-a-days as they struggle to keep up with the ever increasing demands of what the government is mandating children "learn". I also worry about the fast paced environment of technological advancements that I will be sending my kids into. They will be walking into a world where cell phones, ipods, ipads, and the like are welcomed by our school district, and in which children are accessing porn and other things I absolutely don't want any of my kids exposed to. (When Andy was in the middle school last year he regularly told me that kids would pull up inappropriate content while on school property even though when I inquired about this I was told it was impossible because the school "blocked" access to certain material online.) I find my conservative parenting to be even more challenging when I send my kids out into a world such as this on an almost daily basis during the school year, and it makes me want to hold on to my group even tighter and for longer. I want to make sure that they have a really solid foundation so that when they do have to be thrust into this world they will have the ability to handle adult situations and adult content with more skills emotionally than just sending them into this world with immature minds that are still growing and learning how to navigate between childhood and adulthood.
I am going to try and venture out to do more things with the homeschool group that is available in the Falls. I did 1 thing with them all year and I think that my kids may have benefited from getting together with others in their same situation a bit more. I wonder if they would have had the opportunity to forge friendships with some of these kids if Josh and Sarah would be so eager to go back to school. (Josh is now leaning more and more towards going back to school - although his reasons - school lunches and hanging out with his buddies more - are not sitting well with me. We still have time to discuss this with him though to make sure that he wants to go back for something more concrete than those two reasons.Especially since he sees his buddies on a regular basis. I know that he doesn't like it when his friends talk about stuff that is going on at school and he has no clue what they are talking about although, again I struggle to see the validity in that being the main reason he wants to go back.)
Bob's birthday is on Monday and the kids are I are really excited about the gift he will be getting. I think he will enjoy it as well although he is a tough cookie to buy things for sometimes. Sarah has another appointment on Monday with Dr. Rensel, so we are going to spend the day in Cleveland hitting up the West Side Market and the Great Lakes Brewery when her appointment is over. It should be a relaxing day - provided we don't get bad news from Sarah's MRI that she is having the this Friday.
Bob has really been helping me out lately, and I appreciate the man he is more and more as our lives move forward. He really is a stand up guy, and he puts up with a lot from me. I am a very complicated woman, and it takes a special guy to handle all that I am. I am grateful that he has stuck by my side all of these years because I don't know that I would have had the strength to do so if our roles were reversed. I am trying to soften up a bit because I am just such a tough cookie.Taking the time to figure out what it means to be me in a Real sense has helped our relationship by leaps and bounds. We have been through so much this past year, and I truly think that most couples would have cracked - to be honest there was a point recently where I thought we were going to crack, but we stuck it out and worked harder than we ever have to get through a really tough time. I am so grateful to him that he is as willing to make this marriage work. There have been times when it was his willingness alone that has carried us, and it means the world to me that I matter so much to him to stick it out. Marriage can be really hard, and when you add in a child that is as sick as Sarah is it can make it all that much harder as each person tries to come to terms with the illness both on their own and together as a family.
I am still working very hard each day to find out what it means to me to be Real. I have never really taken the time to get to know myself as I am, and not as I should be that there is so much about myself that I do not know. I find myself retreating a lot and reflecting on a lot of things, and taking this time has helped me in a lot of ways. I still have so much work to go, but just getting myself on this path and working towards this goal is a step in the right direction.
I find that I am cautious about the future as of late. I am no longer optimistic about it, but I am not pessimistic about it either. Experience has taught me that both optimism and pessimism haven't served me as well I as would have liked them to, and so now all I can do is wait for each new day to come while doing my best to not worry or celebrate the future too much. I am constantly trying to remind myself that all I have it today - actually all I really have is this moment.
Life can be really, really hard sometimes. Harder than I ever imagined it possible. I hope someday I can look back on this part of my life and reflect on all that I have learned, and more importantly, to see how this piece fits into this puzzle called My Life because sometimes nothing seems to make sense.
Sunday, April 6, 2014
Just What The Doctor Ordered - A Night Of Family Fun
I don't know if it is because we have a gaggle of kids and getting everyone to agree on the same thing is difficult, or if it is because going out can be pretty expensive, or if it is just that we don't take advantage of the time we have - we don't get out and do much as family. Going out to go bowling or to the movie theater is just not something that we do very often or like, ever. We talk about how we would like to do those things, but executing those thoughts has never been our strong suit.
I decided to take take the bull by the horns yesterday and do something about our poor record of getting out of the house and doing something non-nature related. Now, let me be quite honest we did not have all of the kids last night. My mom had scheduled a special weekend with Elizabeth, and she was at my parents house having a wonderful time and Andy was invited to my sister's house by my brother-in-law so that they could hang out - which is perfect for Andy because my brother-in-law is just a big kid at heart. So that left us with just Josh and Sarah.
Bob and I decided to take the kids to their favorite restaurant, The Golden Corral, (which if you have never been there - is a prime example of what is wrong with the world) and then we went to an indoor play place called Fun-N-Stuff where we rode go carts, roller skated, played laser tag, and the kids and Bob did some type of jumpy thing with bungee cords (I know - great explanation of that event, right?).
We all had a blast. We ended up spending about $100 for the evening, and if we had Elizabeth and Andy with us it would have been about $150. I never spend that kind of money on nights out because I always thought that was really expensive, and we could be doing something better with that kind of money. Spending that cash was worth every penny. I am going to try and start planning family nights like that once or twice a month. I know that it will be expensive, but I always stress about money, and there is always just enough no matter what our monthly expenses are. Because of the type of lifestyle we have chosen to live we will never be rich, and I think that I will always worry about money, but I also think that last nights money was so well spent that I will find a way to make it happen as often as I can.
To watch my family laughing, and to be apart of that laughter was so much fun. To be able to create a memory like last night was amazing. We didn't do anything crazy or super cool, but we lived with no regrets and had a ton of fun in the process. That is what living is about.
I decided to take take the bull by the horns yesterday and do something about our poor record of getting out of the house and doing something non-nature related. Now, let me be quite honest we did not have all of the kids last night. My mom had scheduled a special weekend with Elizabeth, and she was at my parents house having a wonderful time and Andy was invited to my sister's house by my brother-in-law so that they could hang out - which is perfect for Andy because my brother-in-law is just a big kid at heart. So that left us with just Josh and Sarah.
Bob and I decided to take the kids to their favorite restaurant, The Golden Corral, (which if you have never been there - is a prime example of what is wrong with the world) and then we went to an indoor play place called Fun-N-Stuff where we rode go carts, roller skated, played laser tag, and the kids and Bob did some type of jumpy thing with bungee cords (I know - great explanation of that event, right?).
We all had a blast. We ended up spending about $100 for the evening, and if we had Elizabeth and Andy with us it would have been about $150. I never spend that kind of money on nights out because I always thought that was really expensive, and we could be doing something better with that kind of money. Spending that cash was worth every penny. I am going to try and start planning family nights like that once or twice a month. I know that it will be expensive, but I always stress about money, and there is always just enough no matter what our monthly expenses are. Because of the type of lifestyle we have chosen to live we will never be rich, and I think that I will always worry about money, but I also think that last nights money was so well spent that I will find a way to make it happen as often as I can.
To watch my family laughing, and to be apart of that laughter was so much fun. To be able to create a memory like last night was amazing. We didn't do anything crazy or super cool, but we lived with no regrets and had a ton of fun in the process. That is what living is about.
Thursday, April 3, 2014
Should & Be
One of my biggest struggles with the Judge is that she is constantly telling me what I should be doing and who I should be. I should be spending quality time with everyone around me. I should be preparing delicious, healthy meals at every sitting. I should have a wonderfully clean house. I should eat well and exercise almost daily. I should be more patient and loving and caring and kind. Should, should, should.
But sometimes I don't want to do or be any of those things. Sometimes the only person I want to spend quality time with is me, but I don't do that often or regularly enough because the Judge is constantly whispering in my ear that a good mom would be spending this time alone with her children. A good mom would be happily engaged in some domestic duty. A good mom and wife would be in the kitchen humming a tune whipping up a warm bath of cookies. A good mom and wife would be taking care of her body and appearance for the sake of keeping face. A good mom and wife is always there for her children and spouse with a smile on her face and a song in her heart. A good wife and mom is always creative and kind and caring and loving and patient.
In thinking about what it takes for me to be Real I have to know who I am. I have to give myself time to just be. Time to just sit and get to know myself as I am rather than who I think I should be. That is a little bit of a scary thought because I have spent pretty much my whole adult life being the person I think I should be. I have no idea if who I really am is anywhere in line with the person I have been living my life as all of this time.
I guess I just want to get to a point in my life where I can run 'the should' thoughts right out of my brain and just Be. I wonder if that is even possible for me...
But sometimes I don't want to do or be any of those things. Sometimes the only person I want to spend quality time with is me, but I don't do that often or regularly enough because the Judge is constantly whispering in my ear that a good mom would be spending this time alone with her children. A good mom would be happily engaged in some domestic duty. A good mom and wife would be in the kitchen humming a tune whipping up a warm bath of cookies. A good mom and wife would be taking care of her body and appearance for the sake of keeping face. A good mom and wife is always there for her children and spouse with a smile on her face and a song in her heart. A good wife and mom is always creative and kind and caring and loving and patient.
In thinking about what it takes for me to be Real I have to know who I am. I have to give myself time to just be. Time to just sit and get to know myself as I am rather than who I think I should be. That is a little bit of a scary thought because I have spent pretty much my whole adult life being the person I think I should be. I have no idea if who I really am is anywhere in line with the person I have been living my life as all of this time.
I guess I just want to get to a point in my life where I can run 'the should' thoughts right out of my brain and just Be. I wonder if that is even possible for me...
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| Taken from quopic.com |
Tuesday, April 1, 2014
Here We Go Again...An Update on Sarah
Bad News: Sarah's eyes deteriorated quite quickly again....On Sunday, 1 week to the day after she stopped using her steroids she started losing her vision again. By Monday morning when we took her to see Dr. Locastro her left eye was 20/200 and her right eye was 20/60.
Good News: She was able to get into the infusion center, so that she could receive her high dose of steroids on an outpatient basis rather than being admitted to the hospital again.
Bad News: All of the neurologists at Akron Children's have officially signed off on helping get us the care we need because either they do not have the time to help us or they do not want to "tackle such a difficult case". This, quite frankly, is bulls%^it, but it is what it is.
Good News: Dr. Locastro, once again, has shown his amazing ability to be not only a great doctor, but also a great man. He spent hours yesterday trying to get us the care Sarah needed at the hospital we wanted to be at, and he was successful.
Sarah's neurologist at the Cleveland Clinic wants to have Sarah looked at by a neuroophthalmologist to see if she isn't suffering from a second autoimmune disease. Her rapid deterioration in her eye sight is uncommon even among those suffering from uncommon diseases such as NMO.
The infusion center nurses were wonderful yesterday, as are almost all of the nurses we have encountered in our 10 month journey of medical craziness. Two more days of infusions and then she is done. We will be on a longer steroid taper this time around in hopes to keep her vision loss at bay. We are getting to the point where there is beginning to be a bit more urgency to get Sarah off of steroids as she has been on them for so long - even her doctors feel this way and it is not just the worries of a scared mama anymore as it has been in the past. The Imuran that she is on is what we are all hanging our hopes on that will solve her dependency on steroids, but as we know so well, there is a chance the drug might not work. Then it will be back to the drawing board...again.
Please keep Sarah in your thoughts and prayers. Send her your love. Most importantly please sent her your Hope. She really needs it right now, as do I.
Good News: She was able to get into the infusion center, so that she could receive her high dose of steroids on an outpatient basis rather than being admitted to the hospital again.
Bad News: All of the neurologists at Akron Children's have officially signed off on helping get us the care we need because either they do not have the time to help us or they do not want to "tackle such a difficult case". This, quite frankly, is bulls%^it, but it is what it is.
Good News: Dr. Locastro, once again, has shown his amazing ability to be not only a great doctor, but also a great man. He spent hours yesterday trying to get us the care Sarah needed at the hospital we wanted to be at, and he was successful.
Sarah's neurologist at the Cleveland Clinic wants to have Sarah looked at by a neuroophthalmologist to see if she isn't suffering from a second autoimmune disease. Her rapid deterioration in her eye sight is uncommon even among those suffering from uncommon diseases such as NMO.
The infusion center nurses were wonderful yesterday, as are almost all of the nurses we have encountered in our 10 month journey of medical craziness. Two more days of infusions and then she is done. We will be on a longer steroid taper this time around in hopes to keep her vision loss at bay. We are getting to the point where there is beginning to be a bit more urgency to get Sarah off of steroids as she has been on them for so long - even her doctors feel this way and it is not just the worries of a scared mama anymore as it has been in the past. The Imuran that she is on is what we are all hanging our hopes on that will solve her dependency on steroids, but as we know so well, there is a chance the drug might not work. Then it will be back to the drawing board...again.
Please keep Sarah in your thoughts and prayers. Send her your love. Most importantly please sent her your Hope. She really needs it right now, as do I.
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