I know you are not supposed to write anything when you are emotional. This last week has been spent with me in a constant state of emotions - most of them overwhelming. After more very short nights, and more tears than I can count or control, I am going to write anyway.
This is fair warning to just delete this right here if you still even follow this. This is my journal and most likely is TMI. If you choose to read now, most likely you wont again after.
This last week has been a week of loss. Things and people that are very real and tangible. And I admit right off the cuff that I am not handling any of it at all. Our whole lesson in RS about faith instead of fear has gone right out the window....
I am experiencing great loss in being a mother. Being told that I am a bad mother, in not very nice ways, by multiple people over a short period of time is bringing me to my breaking point. I am beginning to belive them. They seem to have more than enough to say to prove their point. I am losing ground. I know that I am failing each of the kids in some way. I am failing in small ways like not having time to read to little people or have the energy to take them to the park. I am failing in big ways like having all of the wonderful birthday plans crumble apart, and not being able to communicate with the big kids at all these days. I am not able to be the mother they need or deserve...
Photography is another area where I have experienced loss. I am ready to concede that my work really isnt good enough to sustain a business. It has never been about excessive profit, but of asking enough to cover expenses most of the time. I truly felt that I had been given a gift to share, to serve. I have tried to give my all, but it isnt enough. I know that if I was not part of a local small business association, that I would not be doing "pro" photography at all. I will not be offering photography services anymore, unless specifically asked. By Summer, I will most likely not be part of the small business association either, and that will close the final door to this pursuit. Maybe I am foolish to think that photography is important in times like these. Maybe I just finally understand and accept that photography work is important and special, just not mine. I will just go back to being "a mom with a camera" and keeping it as a hobby. That is where I started, and I understand now that it is probably where it should have stayed...
I feel in a place where our whole family is losing ground as far as health concerns. Though we have amazing doctors, darling nurses and wonderful care, I am struggling with how much we are taking on right now. We have at least 1 appointment/day, and usually more. I am in the car by myself or with kiddos constantly, often spending hours in travel. I am so very grateful that most of our medical needs have been covered by insurance. Some needs will not be covered by insurance, and so we will continue to not be able to seek out that help until we can save enough. We most likely will need to let those pieces go. We are continuing to add new specialists and have new concerns emerge. We are seeking help and answers, but I have found it to be a long, slow process. It is also exhausting and painful at times. My arms are black and blue, and so sore. My energy levels, esp after long and emotional appts, are never enough to come home and fulfill my responsibilities for the kids or Preston. We continue to be in battle mode to secure Colton's IEP, even though we have a monster stack of reports from specialists. The big kids are struggling with school because we are in daily need of them caring for little people. Even though we have received new answers, there are still many unknowns of where to even start to pursue them. I found out today that Colton is going to be required to do an EKG before we can even begin to pursue looking at the possibility of ADHD meds, and that a behavioral specialist will be added to our plate with an unknown date of when he won't need one.
Because of me, and my insane ability to mis-communicate and make a huge mess of things, Ky's opportunity to attend preschool has been put in jeopardy. It has been a rough transition month, and I was asked to help make some suggestions to see if things might be able to run a little more smoothly. Instead of being helpful, I ended up doing great harm. I have not been able to stop crying now since Sunday afternoon, and even developed a migraine severe enough to have me throwing up in the bathroom during that night. When I think about the whole thing, and all the words that have been said, and the words not said but implied, I start all over again. He loves school, and his teacher so much, but my failure may not allow him to return.
Over the last year, and esp the last few months, I have watched and felt our social circles crumble. This loss has left me, and the girls, feeling very alone. I think as I look back, it has been lots of little things along the way. Far away friends not including us, or making time for us to visit, or even hearing from them this year. Close by friends replacing us, and forgetting about us completely because we are no longer in regular school, or music, or extra activities where they are. We have extended invitations, and made requests for help, and fun, many times, but we have been forgotten, or they have not been accepted, or most of the time even acknowledged. Because of these things, it has brought us to the point of not asking for help, or playtime, or dates, etc. Being rejected or ignored enough times sends a very clear message. It also leaves us knowing that we are very alone, and not able to ask for help, even at times when we are in the most need of it.
I feel at a loss as a teacher. I have been given a class where I am blending old students with new students. Teaching both sets of kiddos present wonderful opportunities, and heartbreaking challenges. I have students that choose to not attend my class, but attend the other 2 hrs around it. In investigating this, I have run into roadblocks and no help from parents. I have a new student that I have already scared away because of one little thing that happened the first day of class. I was not even aware of the concern until I received a call from the student's mother. Even after chatting with her, and feeling like things were ok, this student still has not returned. I have one student that I know nothing about, who does not attend at all. No one seems to be able to help me find the information that would be helpful to seek out this student. I have another student that is struggling, and I just dont know how to reach out at all.
Some weeks I feel like things go ok. Others, like last week, even with studying and trying, I felt like the lesson didnt go anywhere it needed to. I am not sure the kids left with anything helpful. I often struggle with my calling. I know that I have it still because I am supposed to be the student. This is another attempt to help me learn things that I should already know, but have failed to do. When I am the student, how can I also be the teacher? I cannot teach my class, or my own children, things that I do not know myself. This has been esp difficult when it has centered around gospel principles. Even being a member all these years, I often feel I am no better, and have no more knowledge than I did then - except to understand that I SHOULD know it, and to prove continuously how much I am failing to teach them because I dont know or belive that gospel principles apply to me. How can I teach what I do not have a testimony of? It also continues to prove how dire the consequences will be for not knowing and not teaching enough. It is a constant struggle, and I am at a great loss, always wondering if I am doing what is expected by others and esp by Heavenly Father.
I try to give all that I have, but again I have been brought to the point that no matter what I do or say, it is never, and will never be enough. I know many would say, it doesnt have to be. But also knowing that there is nothing to fill in for my inabilities and losses, it just makes things so much harder. Things that I don't understand, and strongly feel that apply to everyone else BUT me. I thought for awhile the fortress walls were coming down, forward progress was being made. This week the walls have gone back up, and progress has been severely reversed. I am not sure about anything anymore, except that I am failing, and not handling loss or finding balance at all.
Monday, January 24, 2011
Saturday, January 22, 2011
Iron Infusion #3
Things went slightly better this week, I think.
When I got there, I had a new nurse assigned to me. I started off with extra low blood pressure again. Now that I think about it, I didnt get it checked before I left...We also started off with piling on the heated hospital blankets. I woke up freezing to the point of shivering, and couldnt stop at all. Those blankets sure are wonderful, so is hot chocolate which they have on hand for patients. She got me all settled and the IV nurse came over to get things started.
Deb gave it the old college try (extra heat, extra sm needles, extra everything) - and came up empty. After a painful poke in the left arm, and trying to thread the catheder, she tried to flush the line only to make me about jump out of the chair. She pulled the line back out, only to discover the catheder hadn't gone in at all...
Good thing (for me and her) was that she stopped with that try and called Erin to do the rest. Erin tried my mid arm on the right again. I about jumped out of the chair anyway, and even with a cute new nurse trying to distract me with chatter, I was not doing so well. The 2nd try didnt go either.
After applying more heat and letting me rest a bit, Erin started hunting on my right wrist. Not a good sign, esp since my left wrist is still bruised and tender from LAST week. It took everything I had to sit in the chair and not move while she poked and dug to get that dumb needle and line in. She finally got it in, though not without both of us being very distressed. She was visually unnerved when she was done, and I was already exhausted. It took an hour to finally get a line in.
She ran the iron with 2 pints of saline over 2 hrs. She ended up having to brace my arm in one position like last week too, as well as securing the line in several places with tape. I tried to sit really still and just read. It was a really long 2 hrs.
When I was finally done, we went through the fun of getting the line back out-undoing all the tape, flushing the line, etc. Being in my wrist it was extra painful coming back out. It also decided to bleed more too. Erin had to put pressure on it longer than usual before she wrapped it up. I know that both of us were still feeling very unsettled.
Both arms were very sore and it was a challenge to get them into a comfy position to drive home. I ended up being so worn out that I took some IB after I got home and slept for 2 hrs. Also really struggled during the evening. My arms were really shaky and I felt pretty crummy. I was back in bed when I put the little peeps down at 730. It took until after 9pm to finally fall asleep though. I am glad that our Saturday is going to be quiet and I can rest as needed. This appt was just plain hard.
This is appt #3. Half-way done. Not sure that Erin or I are looking forward to the next three....Hoping that my arms will be healed enough to give them somewhere to work next week.
When I got there, I had a new nurse assigned to me. I started off with extra low blood pressure again. Now that I think about it, I didnt get it checked before I left...We also started off with piling on the heated hospital blankets. I woke up freezing to the point of shivering, and couldnt stop at all. Those blankets sure are wonderful, so is hot chocolate which they have on hand for patients. She got me all settled and the IV nurse came over to get things started.
Deb gave it the old college try (extra heat, extra sm needles, extra everything) - and came up empty. After a painful poke in the left arm, and trying to thread the catheder, she tried to flush the line only to make me about jump out of the chair. She pulled the line back out, only to discover the catheder hadn't gone in at all...
Good thing (for me and her) was that she stopped with that try and called Erin to do the rest. Erin tried my mid arm on the right again. I about jumped out of the chair anyway, and even with a cute new nurse trying to distract me with chatter, I was not doing so well. The 2nd try didnt go either.
After applying more heat and letting me rest a bit, Erin started hunting on my right wrist. Not a good sign, esp since my left wrist is still bruised and tender from LAST week. It took everything I had to sit in the chair and not move while she poked and dug to get that dumb needle and line in. She finally got it in, though not without both of us being very distressed. She was visually unnerved when she was done, and I was already exhausted. It took an hour to finally get a line in.
She ran the iron with 2 pints of saline over 2 hrs. She ended up having to brace my arm in one position like last week too, as well as securing the line in several places with tape. I tried to sit really still and just read. It was a really long 2 hrs.
When I was finally done, we went through the fun of getting the line back out-undoing all the tape, flushing the line, etc. Being in my wrist it was extra painful coming back out. It also decided to bleed more too. Erin had to put pressure on it longer than usual before she wrapped it up. I know that both of us were still feeling very unsettled.
Both arms were very sore and it was a challenge to get them into a comfy position to drive home. I ended up being so worn out that I took some IB after I got home and slept for 2 hrs. Also really struggled during the evening. My arms were really shaky and I felt pretty crummy. I was back in bed when I put the little peeps down at 730. It took until after 9pm to finally fall asleep though. I am glad that our Saturday is going to be quiet and I can rest as needed. This appt was just plain hard.
This is appt #3. Half-way done. Not sure that Erin or I are looking forward to the next three....Hoping that my arms will be healed enough to give them somewhere to work next week.
Wednesday, January 19, 2011
School Extremes
It has been interesting to me to watch the 2 extremes that have been going on between our local district and our ORCA "district". Today, we got another WOW from ORCA, that again proves that the 2 districts we are working with are NOT the same.
Our first experience with extremes was before school even started. We knew Colton had new and emerging medical, health and behavioral concerns. He had seen OHSU specialists several times during the Summer, which resulted in the decision to go ahead with surgeries that would impact his education, among other things.
I made phone calls and sent emails to CSD to let them know all of our new concerns, and to request a formal IEP Mtng to get all of his new stuff in place for this school year. None of my calls or messages were returned. I also made phone calls to our host ORCA school, and talked directly to the assistant principle - multiple times. I was able to coordinate and confirm that Colton would have the same teacher he did last year, that the curriculum would be modified to meet his needs, and we were offfered a special medical laptop just for Colton so we could do lessons during our hospital stays. In the midst of our medical challenges, I received phone calls and webmails from Colton's teacher, the assistant principle, and his ORCA special needs director all checking to see how we were doing and if there was anything more that we needed. We still heard nothing from CSD.
Another extreme happened after school started. We again repeated our request for a formal IEP mtng - which CSD agreed to do with us at the end of last year. My requests were not heeded in any way. I finally went directly to the CSD special needs director in our district to let her know what was going on and what we needed. Still nothing. Finally, after phone calls and webmails to our ORCA team, and communication from them, an IEP mtng was grudgingly scheduled. During that meeting, however, the special needs director did not attend, and the person in her place and those present pretty much dismissed the HUGE stack of medical and behavioral reports sitting in front of them. The PROOF that what we were requesting for Colton (that his IEP show in written form the medical needs for extra services) was valid. Their side has been that if they are not seeing him or providing services, then they arent going to comply, that they want their OWN reports.
During this waiting game, we spent our own time and money seeking several other specialists to gather more needed documentation to plead our case. The CSD speech and pysch team came to "observe" Colton for their own records. Even after many protests and attempts to request a real observation (1/2-whole day) they came and left in 90min. They observed part of our school routine, and none of the fall-out that occurred after they left because of the disruption to our morning. They weren't willing to give the time or efforts to see the things that we were trying to explain. They requested more paper reports from me and others Colton interracts with. The same set of papers we had filled out 2x already for outside specialists.
ORCA, during this same waiting period, continued with constant communication about where Colton was, what specialists we were seeing, and being completely involved as much as possible.
***Just as a side note, the squeaky wheel does get the grease - Our efforts and requests to CSD seem to be paying off now that we have a confirmed diagnosis from THREE sources to confirm Colton's ADHD, and a report from a new speech specialist concurring with OHSU team. We are hoping to take these reports and get a newly drafted IEP with all medical documentation by the end of this month.
So, back to our news of today. Here is yet another extreme. Many people know how involved we have been in the local school district. Preston has officially applied for the interim position on the board. After the 1st official vote by the board it came to a dead end and a tied vote. Between the 1st and 2nd vote, we were the subject of nasty rumors and very unkind words from board and community members. At the time of the 2nd vote, again the board hit a wall - resulting again in dead-lock and including Preston losing a vote that had been given the month before. At that time, the board chose to not make any decions and will leave the slot empty until official elections in May. Not only did they not resolve the immediate concern, they have left one area of our city not represented at all, and have put themselves in a position of constant deadlock and not being able to move forward with anything critical because there will never be a majority vote. It has also put extra pressure and stress on many of the current board members. A constant concern is that those with strongest voices will continue to pressure those with not strong voices, and a lot of ill will continue to come from the board as things are still not resolved or even brought to where they should be addressed.
So now flip over to ORCA. Preston forwarded a letter to me that he received from the ORCA parent association/school board. He has been very involved in the parent association and everything involved with ORCA since we enrolled the kids. Really it is no surprise that he received this letter. In it was a personal, official invitation to fill an open slot on the board. The letter outlined what expectations for the position would be including, "...staying informed and doing our best to particiapte and encourage others to become involved whether that be listening or giving testimony, notifiying legislators about current legislation, or visiting the Oregon Department of Education. We make goals of what we'd like to see accomplished within ORCAPA. We work with the public relations liasion for ORCA, as well as the PR from National Connections Academy. We help provide direction for the yahoo group as well."
Her final comments were these: "Please consider this position: you are such an asset. You have a beautiful calm nature about you and you have the gift to make the complex, simple."
Pretty impressive to me, considering that most of the people that Preston has had contact with so far in ORCA communications has been through email or phone calls only. He has worked hard, and others are seeing that. It is a really great opportunity for him to serve and not only advocate for our family, but for all the ORCA families in Oregon and contribute to things at the national level...It is also an extact opposite of what has happened within CSD.
We are waiting to see what other information can be gathered before he makes a final decision. It should make for some interesting posts in the future.
I am sure there are other things I could, and probably will write about. Just has been an interesting experience being in the middle of both schools and districts.
Our first experience with extremes was before school even started. We knew Colton had new and emerging medical, health and behavioral concerns. He had seen OHSU specialists several times during the Summer, which resulted in the decision to go ahead with surgeries that would impact his education, among other things.
I made phone calls and sent emails to CSD to let them know all of our new concerns, and to request a formal IEP Mtng to get all of his new stuff in place for this school year. None of my calls or messages were returned. I also made phone calls to our host ORCA school, and talked directly to the assistant principle - multiple times. I was able to coordinate and confirm that Colton would have the same teacher he did last year, that the curriculum would be modified to meet his needs, and we were offfered a special medical laptop just for Colton so we could do lessons during our hospital stays. In the midst of our medical challenges, I received phone calls and webmails from Colton's teacher, the assistant principle, and his ORCA special needs director all checking to see how we were doing and if there was anything more that we needed. We still heard nothing from CSD.
Another extreme happened after school started. We again repeated our request for a formal IEP mtng - which CSD agreed to do with us at the end of last year. My requests were not heeded in any way. I finally went directly to the CSD special needs director in our district to let her know what was going on and what we needed. Still nothing. Finally, after phone calls and webmails to our ORCA team, and communication from them, an IEP mtng was grudgingly scheduled. During that meeting, however, the special needs director did not attend, and the person in her place and those present pretty much dismissed the HUGE stack of medical and behavioral reports sitting in front of them. The PROOF that what we were requesting for Colton (that his IEP show in written form the medical needs for extra services) was valid. Their side has been that if they are not seeing him or providing services, then they arent going to comply, that they want their OWN reports.
During this waiting game, we spent our own time and money seeking several other specialists to gather more needed documentation to plead our case. The CSD speech and pysch team came to "observe" Colton for their own records. Even after many protests and attempts to request a real observation (1/2-whole day) they came and left in 90min. They observed part of our school routine, and none of the fall-out that occurred after they left because of the disruption to our morning. They weren't willing to give the time or efforts to see the things that we were trying to explain. They requested more paper reports from me and others Colton interracts with. The same set of papers we had filled out 2x already for outside specialists.
ORCA, during this same waiting period, continued with constant communication about where Colton was, what specialists we were seeing, and being completely involved as much as possible.
***Just as a side note, the squeaky wheel does get the grease - Our efforts and requests to CSD seem to be paying off now that we have a confirmed diagnosis from THREE sources to confirm Colton's ADHD, and a report from a new speech specialist concurring with OHSU team. We are hoping to take these reports and get a newly drafted IEP with all medical documentation by the end of this month.
So, back to our news of today. Here is yet another extreme. Many people know how involved we have been in the local school district. Preston has officially applied for the interim position on the board. After the 1st official vote by the board it came to a dead end and a tied vote. Between the 1st and 2nd vote, we were the subject of nasty rumors and very unkind words from board and community members. At the time of the 2nd vote, again the board hit a wall - resulting again in dead-lock and including Preston losing a vote that had been given the month before. At that time, the board chose to not make any decions and will leave the slot empty until official elections in May. Not only did they not resolve the immediate concern, they have left one area of our city not represented at all, and have put themselves in a position of constant deadlock and not being able to move forward with anything critical because there will never be a majority vote. It has also put extra pressure and stress on many of the current board members. A constant concern is that those with strongest voices will continue to pressure those with not strong voices, and a lot of ill will continue to come from the board as things are still not resolved or even brought to where they should be addressed.
So now flip over to ORCA. Preston forwarded a letter to me that he received from the ORCA parent association/school board. He has been very involved in the parent association and everything involved with ORCA since we enrolled the kids. Really it is no surprise that he received this letter. In it was a personal, official invitation to fill an open slot on the board. The letter outlined what expectations for the position would be including, "...staying informed and doing our best to particiapte and encourage others to become involved whether that be listening or giving testimony, notifiying legislators about current legislation, or visiting the Oregon Department of Education. We make goals of what we'd like to see accomplished within ORCAPA. We work with the public relations liasion for ORCA, as well as the PR from National Connections Academy. We help provide direction for the yahoo group as well."
Her final comments were these: "Please consider this position: you are such an asset. You have a beautiful calm nature about you and you have the gift to make the complex, simple."
Pretty impressive to me, considering that most of the people that Preston has had contact with so far in ORCA communications has been through email or phone calls only. He has worked hard, and others are seeing that. It is a really great opportunity for him to serve and not only advocate for our family, but for all the ORCA families in Oregon and contribute to things at the national level...It is also an extact opposite of what has happened within CSD.
We are waiting to see what other information can be gathered before he makes a final decision. It should make for some interesting posts in the future.
I am sure there are other things I could, and probably will write about. Just has been an interesting experience being in the middle of both schools and districts.
Friday, January 14, 2011
Iron Infusion #2
So...today didnt go so well.
My first job of the day was to check my blood pressure. It was not good to see that it was even lower than when I left last week. My main care nurse was concerned, but said we would just keep an eye on things. The big job of the day was to get the IV in, that ended up being a lot harder than any of us would have guessed....
My nurse really struggled with finding a vein that even looked like it was going to cooperate. We pulled out all the tricks - heat pad, hot wet rags, squeezing a foam ball, slapping the surface skin, etc. We did it all, to no avail whatsoever...
The first attempt in my forearm was a total no-go. The 2nd attempt in my wrist got the needle and catheder in, but the vein was so small the nurse couldnt thread it in completely. The third attempt was in the other arm. By this time, I was in tears because the one in my wrist was pretty painful, and the nurse was done trying. The fourth attempt, done by the nurse I had last week, finally went in on my right forearm. Four attempts=1 1/2 hrs.
All this time, Preston sat quietly on the sidelines, not sure how he felt about everything. I had asked him to come sit with me and we could have our "date" (play a game and have a fun bfast together), thinking that by the time he came the IV would be in and we would be good to go. Things didnt quite go according to plan.
We started a game of Cribbage - which neither of us knew how to play before today (not sure we really do yet though) but my wrist was in alot of pain where attempt #2 was made. The nurse brought me some IB, and we tried a heating pad which wasnt working so well. I just kept it tucked under my chin and braced against my body to try to not move it or bump it at all. Shortly after they got the IV going it was stinging alot. I tried not to fuss, but the stinging got more intense and I noticed it was slowly creeping up my arm. I also realized that I had started with a headache like last week. By the time the pain was at my elbow, I was about in tears and asked the nurse to come over and see what else we could do. My main care nurse stopped all the IV's and got a saline syringe to see if she could flush it a bit. When she pushed the saline through I about jumped out of the recliner, and the tears came again, it was not good. She was concerned that the vein was too stressed and recommended that I just be done and come back another time to try again. I knew that just wasnt an option, so without spilling our whole schedule in her lap, we discussed all the options and decided that adding a 2nd saline IV and slowing the infusion down to go in over a 2hr (vs the normal 1 hr) window would be our last try at things.
When I was finally re-settled, I sent Preston out to call the kids and let them know I was going to be a lot later than planned. As I waited for him to return, I just kept looking at the clock - knowing I was going to still be another hour minimum. We decided to go ahead and let Preston go back to work so he didnt miss any more hours. I think we were both disappointed that things didnt go so good, I know I was and I had a hard time not crying after he left. Having him come for a bit was a good idea last night, just didnt go so good today. We will have to see if we decide to try to have him come next week...
After he left, I just sat and read for that last hour. The nurses came and checked on me alot, but I was doing much better, and though I could feel things in my arm, it was tolerable. We did check my blood pressure again before I left, and both of us were pleased to see that it had jumped back up to normal #'s.
There are still things to do today, but I think with the way I feel, I will forgo getting into battle mode with the kids over school stuff or worrying about house etc, and just try to lay low. I will be home with little people all day tomorrow, we can work on more school stuff then. Hopefully, the rest of the day will be uneventful...
My first job of the day was to check my blood pressure. It was not good to see that it was even lower than when I left last week. My main care nurse was concerned, but said we would just keep an eye on things. The big job of the day was to get the IV in, that ended up being a lot harder than any of us would have guessed....
My nurse really struggled with finding a vein that even looked like it was going to cooperate. We pulled out all the tricks - heat pad, hot wet rags, squeezing a foam ball, slapping the surface skin, etc. We did it all, to no avail whatsoever...
The first attempt in my forearm was a total no-go. The 2nd attempt in my wrist got the needle and catheder in, but the vein was so small the nurse couldnt thread it in completely. The third attempt was in the other arm. By this time, I was in tears because the one in my wrist was pretty painful, and the nurse was done trying. The fourth attempt, done by the nurse I had last week, finally went in on my right forearm. Four attempts=1 1/2 hrs.
All this time, Preston sat quietly on the sidelines, not sure how he felt about everything. I had asked him to come sit with me and we could have our "date" (play a game and have a fun bfast together), thinking that by the time he came the IV would be in and we would be good to go. Things didnt quite go according to plan.
We started a game of Cribbage - which neither of us knew how to play before today (not sure we really do yet though) but my wrist was in alot of pain where attempt #2 was made. The nurse brought me some IB, and we tried a heating pad which wasnt working so well. I just kept it tucked under my chin and braced against my body to try to not move it or bump it at all. Shortly after they got the IV going it was stinging alot. I tried not to fuss, but the stinging got more intense and I noticed it was slowly creeping up my arm. I also realized that I had started with a headache like last week. By the time the pain was at my elbow, I was about in tears and asked the nurse to come over and see what else we could do. My main care nurse stopped all the IV's and got a saline syringe to see if she could flush it a bit. When she pushed the saline through I about jumped out of the recliner, and the tears came again, it was not good. She was concerned that the vein was too stressed and recommended that I just be done and come back another time to try again. I knew that just wasnt an option, so without spilling our whole schedule in her lap, we discussed all the options and decided that adding a 2nd saline IV and slowing the infusion down to go in over a 2hr (vs the normal 1 hr) window would be our last try at things.
When I was finally re-settled, I sent Preston out to call the kids and let them know I was going to be a lot later than planned. As I waited for him to return, I just kept looking at the clock - knowing I was going to still be another hour minimum. We decided to go ahead and let Preston go back to work so he didnt miss any more hours. I think we were both disappointed that things didnt go so good, I know I was and I had a hard time not crying after he left. Having him come for a bit was a good idea last night, just didnt go so good today. We will have to see if we decide to try to have him come next week...
After he left, I just sat and read for that last hour. The nurses came and checked on me alot, but I was doing much better, and though I could feel things in my arm, it was tolerable. We did check my blood pressure again before I left, and both of us were pleased to see that it had jumped back up to normal #'s.
There are still things to do today, but I think with the way I feel, I will forgo getting into battle mode with the kids over school stuff or worrying about house etc, and just try to lay low. I will be home with little people all day tomorrow, we can work on more school stuff then. Hopefully, the rest of the day will be uneventful...
Thursday, January 13, 2011
Good Things
Today we have had some good things happen, so I needed to be sure to write them down -
1) I got the ultimate work compliment from a 3yr old. One of my clients has this adorable little girl, who I had the opportunity to photograph 2x last month. Both shoots were family events. Apparently she got to fly with her parents all the way to Montana to visit my friend's side of the family during the holidays. My friend A told me her little cutie was very concerned when she asked "How is Rory going to get to grandma's house to take pictures?" She knew that family picts meant lots of fun time spent with me. It doesnt get any better than that! I also received other nice compliments from A about the extended family shoot I did, which also made me happy and relieved since I have been feeling unsettled about that one. Good to know that the client is happy. Always helps a ton to know that I really am doing ok.
2) The squeaky wheel really DOES get the grease. We took some extra initiative in the last few weeks to have Colton tested by a couple more crucial specialists, hoping to gather enough fire power to take to his next IEP meeting. The crucial pieces that we have been missing are: 1)the school staff being willing to take all of the specialists info and reports and physically write the need for services all tied to the VCFS, and 2) scheduling IEP meetings when we request them and holding them in a timely manner. Thus far, they have been unwilling to do so, and have not scheduled timely meetings and have dismissed all of the outside reports because he was not receiving services from the district specifically. We have been requesting both since before the beginning of the year.
Today I got a phone call from the school speech specialist who informed me that not only are they going to hold a whole staff (speech, psych, class teachers, district director, ORCA director, me, local director) IEP meeting within the time we have requested, but at that meeting the goal will be to RE-WRITE his entire IEP to include all of his current needs for speech, OT, and psych, and tie it all back to the VCFS - the medical piece that is at the root of everything and the ONE thing that has been keeping insurance from covering his other services. I still have a niggling amount of doubt, but if we can take all the new reports and prove, finally, what we have been asking for all along, then we are going to move forward at a rapid pace and be able to receive the help Colton is needing. It will be a HUGE relief, more than I could ever write in words
3) After talking with the pediatric psych specialist on the phone yesterday, I was told that Colton now has a conclusive diagnosis for ADHD from 3 different medical specialists. You may be wondering why I have added this to the list. Even though this is going to bring on its own set of challenges and is scary to think about, the good thing is that we have something conclusive, something tangible to work with. We have something that we can go forward with, whatever that may include. It is a good thing.
4) My children are crack ups - and we are needing that right now. Today specifically these have been things out of my children's mouths -
Kaeli - came in fussing about the hot and humid temperature in the house - all the while spouting it out in a heavy British cockney and Irish brogue. It is hard not to laugh hysterically when she does it. She could totally get away in real life with those accents.
Colton - I put on Sleeping Beauty for the 2 little peeps. Colton informed me "I don't like that movie, it has KISSING in it, that is gross!" as he scrunched up his whole face and closed his eyes.
Kelsianne - She was overheard by Preston this afternoon singing "blah, blah, blah" to the tune of Jingle Bells. She is also struggling with saying the word balloon, and Ceana & I were laughing hard trying to help her break the syllables into pieces she could say. Her other big endeavor is drawing pictures of "points" and "wuwoons" - now while I know what "wuwoons" is (after ceana told me that she was really trying to say balloons), I have NO idea what "points" are or is...probably something to do with the little boys play something...
Caiden - He cranked out some serious homework today and it was fun to see him so proud of himself, but also how tired he was. His own take was that "doing lots of homework is EXHAUSTING!" as he flung his arm over his face and wiped his brow with his forearm. I thought we only had 2 drama queens in the house, he has good teachers I suppose.
5) It felt like early Spring outside today. I know it is totally tricking me, but after all the freezing temps, and then suddenly having it turn 55 and rain; that Spring smell was in the air, and the sound of frogs echoed across the empty pastures, and I could actually see the moon through wispy clouds. It was nice to think about all that is coming with the warmer weather - even though I know it is only January...
6) I have a wonderful husband who makes me laugh, who holds me when I cry and worry, who does dishes and laundry, who drives Ceana to seminary every morning just so I dont have to, who comes home from work in the middle of the afternoon just to help kiddos with math, who stays up until all hours of the night getting my new computer system up and running and does all the tweaking when I still can't get things figured out, who is patient with our ever changing schedule, who meets us for on-going medical appts, who is very patient with hysterical girl genes running rampant in the house right now, who helps Colton read from his scriptures for mini FHE at night, who runs around the dining room table chasing and "running" from little people just to make them squeal, who works so hard to provide for our family, who is gentle and loving, and my best friend. I am truly blessed to get the privilege to love him and spend my life with him.
7) Sugar is a really lovely thing. It is a chocolate sprinkly motivator, and reward, for boys struggling with school work. It is energy for extra long days after very short nights with no sleep. It is sharing cinnamon & sugar sweetness with a 2 1/2 yr old. It is melted chocolate on your fingers and crunchy goodness in your mouth. It is going to the "wrong" store just so you can bring home treats from the bakery. It is rediscovering treats that were childhood favorites and finding out they are still as good as they were then - esp if you toss them in the freezer (frozen Twinkies are the ONLY way to go :) It is seeing the beaming smile on the face an almost 8yr old as he eats his favorite frozen treat, that he bought with the pennies he had saved himself.
8) Holding a baby in your arms is one of THE best things in the whole entire world. I got spoiled by getting to hold 2 today. We get to enjoy a friend's baby on Thursday mornings when she swaps me a baby for Ky and drives preschool carpool. She is a little cutie with huge eyes who likes to watch everything and be right in the middle of all that is going on around her. This morning I did the one-handed mom thing while holding her and helping Colton with homework. I also enjoyed watching and listening to Kels enjoy her too. Tonight I got to hold another little sweetie of a friend in our ward at a RS activity. My friend and her husband are both of Polynesian descent, and their little girl is everything beautiful that the Polynesian people are. She has dark, gorgeous eyes with eyebrows that are constantly crinkled as if she is trying to figure everything out already. She has a darling smile and a tiny, pouty lip and chubby baby cheeks. Holding and rocking her in my arms was wonderful. She fell asleep while I was holding her, and it was so nice to just look down at that sweet little face and know that I was holding an angel.
I miss having a baby in our home. I was so sick again after Kels came to us, that I missed a ton of her early baby stages. She was so big when she was born, and has just not stopped since. She is now quite the big girl and doing everything her brothers do. I am sad sometimes knowing that she will never be a big sister, that all those little baby days are done for us. I guess I am just extra lucky to know so many people with babies, and that I can enjoy other little ones often.
I know there are probably other things from today, but this one post has taken me most of the day to get written, and if I dont close now, I may fall asleep here in front of the computer. I have my next iron infusion appt tomorrow, hopefully when I am back home I can add a few more things to this list, including that the appt went well. Until then, count your many blessings, name them one by one and it will surprise you what the Lord hath done!"
1) I got the ultimate work compliment from a 3yr old. One of my clients has this adorable little girl, who I had the opportunity to photograph 2x last month. Both shoots were family events. Apparently she got to fly with her parents all the way to Montana to visit my friend's side of the family during the holidays. My friend A told me her little cutie was very concerned when she asked "How is Rory going to get to grandma's house to take pictures?" She knew that family picts meant lots of fun time spent with me. It doesnt get any better than that! I also received other nice compliments from A about the extended family shoot I did, which also made me happy and relieved since I have been feeling unsettled about that one. Good to know that the client is happy. Always helps a ton to know that I really am doing ok.
2) The squeaky wheel really DOES get the grease. We took some extra initiative in the last few weeks to have Colton tested by a couple more crucial specialists, hoping to gather enough fire power to take to his next IEP meeting. The crucial pieces that we have been missing are: 1)the school staff being willing to take all of the specialists info and reports and physically write the need for services all tied to the VCFS, and 2) scheduling IEP meetings when we request them and holding them in a timely manner. Thus far, they have been unwilling to do so, and have not scheduled timely meetings and have dismissed all of the outside reports because he was not receiving services from the district specifically. We have been requesting both since before the beginning of the year.
Today I got a phone call from the school speech specialist who informed me that not only are they going to hold a whole staff (speech, psych, class teachers, district director, ORCA director, me, local director) IEP meeting within the time we have requested, but at that meeting the goal will be to RE-WRITE his entire IEP to include all of his current needs for speech, OT, and psych, and tie it all back to the VCFS - the medical piece that is at the root of everything and the ONE thing that has been keeping insurance from covering his other services. I still have a niggling amount of doubt, but if we can take all the new reports and prove, finally, what we have been asking for all along, then we are going to move forward at a rapid pace and be able to receive the help Colton is needing. It will be a HUGE relief, more than I could ever write in words
3) After talking with the pediatric psych specialist on the phone yesterday, I was told that Colton now has a conclusive diagnosis for ADHD from 3 different medical specialists. You may be wondering why I have added this to the list. Even though this is going to bring on its own set of challenges and is scary to think about, the good thing is that we have something conclusive, something tangible to work with. We have something that we can go forward with, whatever that may include. It is a good thing.
4) My children are crack ups - and we are needing that right now. Today specifically these have been things out of my children's mouths -
Kaeli - came in fussing about the hot and humid temperature in the house - all the while spouting it out in a heavy British cockney and Irish brogue. It is hard not to laugh hysterically when she does it. She could totally get away in real life with those accents.
Colton - I put on Sleeping Beauty for the 2 little peeps. Colton informed me "I don't like that movie, it has KISSING in it, that is gross!" as he scrunched up his whole face and closed his eyes.
Kelsianne - She was overheard by Preston this afternoon singing "blah, blah, blah" to the tune of Jingle Bells. She is also struggling with saying the word balloon, and Ceana & I were laughing hard trying to help her break the syllables into pieces she could say. Her other big endeavor is drawing pictures of "points" and "wuwoons" - now while I know what "wuwoons" is (after ceana told me that she was really trying to say balloons), I have NO idea what "points" are or is...probably something to do with the little boys play something...
Caiden - He cranked out some serious homework today and it was fun to see him so proud of himself, but also how tired he was. His own take was that "doing lots of homework is EXHAUSTING!" as he flung his arm over his face and wiped his brow with his forearm. I thought we only had 2 drama queens in the house, he has good teachers I suppose.
5) It felt like early Spring outside today. I know it is totally tricking me, but after all the freezing temps, and then suddenly having it turn 55 and rain; that Spring smell was in the air, and the sound of frogs echoed across the empty pastures, and I could actually see the moon through wispy clouds. It was nice to think about all that is coming with the warmer weather - even though I know it is only January...
6) I have a wonderful husband who makes me laugh, who holds me when I cry and worry, who does dishes and laundry, who drives Ceana to seminary every morning just so I dont have to, who comes home from work in the middle of the afternoon just to help kiddos with math, who stays up until all hours of the night getting my new computer system up and running and does all the tweaking when I still can't get things figured out, who is patient with our ever changing schedule, who meets us for on-going medical appts, who is very patient with hysterical girl genes running rampant in the house right now, who helps Colton read from his scriptures for mini FHE at night, who runs around the dining room table chasing and "running" from little people just to make them squeal, who works so hard to provide for our family, who is gentle and loving, and my best friend. I am truly blessed to get the privilege to love him and spend my life with him.
7) Sugar is a really lovely thing. It is a chocolate sprinkly motivator, and reward, for boys struggling with school work. It is energy for extra long days after very short nights with no sleep. It is sharing cinnamon & sugar sweetness with a 2 1/2 yr old. It is melted chocolate on your fingers and crunchy goodness in your mouth. It is going to the "wrong" store just so you can bring home treats from the bakery. It is rediscovering treats that were childhood favorites and finding out they are still as good as they were then - esp if you toss them in the freezer (frozen Twinkies are the ONLY way to go :) It is seeing the beaming smile on the face an almost 8yr old as he eats his favorite frozen treat, that he bought with the pennies he had saved himself.
8) Holding a baby in your arms is one of THE best things in the whole entire world. I got spoiled by getting to hold 2 today. We get to enjoy a friend's baby on Thursday mornings when she swaps me a baby for Ky and drives preschool carpool. She is a little cutie with huge eyes who likes to watch everything and be right in the middle of all that is going on around her. This morning I did the one-handed mom thing while holding her and helping Colton with homework. I also enjoyed watching and listening to Kels enjoy her too. Tonight I got to hold another little sweetie of a friend in our ward at a RS activity. My friend and her husband are both of Polynesian descent, and their little girl is everything beautiful that the Polynesian people are. She has dark, gorgeous eyes with eyebrows that are constantly crinkled as if she is trying to figure everything out already. She has a darling smile and a tiny, pouty lip and chubby baby cheeks. Holding and rocking her in my arms was wonderful. She fell asleep while I was holding her, and it was so nice to just look down at that sweet little face and know that I was holding an angel.
I miss having a baby in our home. I was so sick again after Kels came to us, that I missed a ton of her early baby stages. She was so big when she was born, and has just not stopped since. She is now quite the big girl and doing everything her brothers do. I am sad sometimes knowing that she will never be a big sister, that all those little baby days are done for us. I guess I am just extra lucky to know so many people with babies, and that I can enjoy other little ones often.
I know there are probably other things from today, but this one post has taken me most of the day to get written, and if I dont close now, I may fall asleep here in front of the computer. I have my next iron infusion appt tomorrow, hopefully when I am back home I can add a few more things to this list, including that the appt went well. Until then, count your many blessings, name them one by one and it will surprise you what the Lord hath done!"
Wednesday, January 12, 2011
January Snow Day I
Midway through the afternoon yesterday it started "snowing" - you know that light powdered sugar sprinkly stuff. Not a whole lot to get all worked up about, except that you forget we live in Oregon where 1/8" drops on the ground and everything comes to a screeching halt, and the kids come out of the woodwork from all directions screaming that they just HAVE to go outside....
It took awhile, but the snow did change to the big, fat, wet flakes that are something to get worked up about, for all of about 10 minutes, before it turned back into ice and then back into rain...
Even a small sprinkling makes for pretty pictures...
The boys were the first to be out the door, and you notice that Colton finally remembered that snow is COLD, and shortly after that made a beeline for the door and inside to get his jacket. They stayed outside for longer than I thought they would, and enjoyed their winter adventure.
It took awhile, but the snow did change to the big, fat, wet flakes that are something to get worked up about, for all of about 10 minutes, before it turned back into ice and then back into rain...
Even a small sprinkling makes for pretty pictures...
The boys were the first to be out the door, and you notice that Colton finally remembered that snow is COLD, and shortly after that made a beeline for the door and inside to get his jacket. They stayed outside for longer than I thought they would, and enjoyed their winter adventure.
January Snow Day II
The kids were chomping at the bit to be outside, no matter what. Kels was esp anxious to be out there and gave no thought to a coat, long pants, shoes, etc. until she had been out there a few minutes and realized that snow is cold... then she and Colton decided it might be a good idea to add some layers if they were going to stay outside.
Caiden was the first to start gathering the bit of snow wherever he could. He came to me with this "Slushman".
Kaeli gathered the more fluffy snow from the hood of the beast and put this little cute guy together.
Ky & Kels thought Kaeli's little snoman was cute and not sure what happened exactly, but it set Kaeli off into laughter - so nice to have the camera in the right place at the right time...
Caiden was the first to start gathering the bit of snow wherever he could. He came to me with this "Slushman".
Kaeli gathered the more fluffy snow from the hood of the beast and put this little cute guy together.
Ky & Kels thought Kaeli's little snoman was cute and not sure what happened exactly, but it set Kaeli off into laughter - so nice to have the camera in the right place at the right time...
January Snow Day III
I love this pict of the girls. It just shows how much Kels adores "her Kaeli" and how much Kaeli enjoys playing and spending time with her.
This is Ky doing his best impression of a penguin...
Do you notice how 2 girls are NOT dressed for 30 degree weather, but just had to be out there anyway?
Caiden had gathered up a big chunk of snow and probably would have tossed it at Ceana if given the chance...
This is Ky doing his best impression of a penguin...
Do you notice how 2 girls are NOT dressed for 30 degree weather, but just had to be out there anyway?
Caiden had gathered up a big chunk of snow and probably would have tossed it at Ceana if given the chance...
Trying To Keep Up The Good Fight....
This last week has left me struggling for a hand-hold in life. Reading several friends' blogs tells me we are sharing parallel lives, though I feel I am not handling things nearly as well as they are. Their blogs are filled with humor and thought-provoking statements about their circumstances, and things they post result in reactions from others that flood their inboxes with comments.
I open my heart (and my big mouth) to post here for our family journal, and I am 99.9% sure that the only person who reads (or cares about) my posts is my sweet, patient husband.
Does it matter at all that I post here, will my children care about having this journal of our family journey together? Will it help them understand when they are older, that I did the best that I could with what I had available in the moment? I don't know...all I can do is write now and hope that someday it might matter. So here I post my most current heartaches and worries, and in the process keep trying NOT to compare myself to others out there who I am in awe of, and will never be, because I am just me...
We have come to a point of "battle" mode again, in every area of life.
Medically, Colton & I have more on our plate than it seems we can get through. We are traveling to Corvallis multiple times a week, and sometimes even farther for both of us to receive needed care. We have had to condense our many appts, for both of us, to specific providers to try to alleviate some of the constant travel. We have both added several new specialists in the last couple of months trying to find answers to new and emerging concerns. For me, it has been trying to find answers to old concerns, and receiving results that have been mind-blowing and leaving us wondering what to do next. We are still finding more questions than answers. We try one step at a time to figure out a new remedy, and spend lots of time waiting to see if things work or not. I am in that process now, trying to resolve several things at once, and also doing a lot of waiting....In this process we are waiting for official reports for Colton so we can move forward with securing services, specialists and possibly new medications. Through all of this, we have truly been blessed with the very best care available, and that is something that I am thankful for daily.
Educationally, the kids have all floundered through the curriculum this term, and are still way behind even as the end of the term is now only 2 weeks away. Most of this has been a result of before-mentioned medical stuff. We are also still in battle mode with the school district to get them to accept the medical stuff to apply to Colton's IEP. You would think continuing circumstances would be case-in-point, and a no-brainer for having everything in place. Because they are not providing services, they have thus far dismissed the specialists' reports, wanting their own results. This has left us with 1/2 the school year gone, and Colton still not receiving services and documentation that should have been in place in September...It has also left me having to force their hand and request specific meetings to make sure these things are finally put on his IEP. Most likely, though, the benefits will not be of help until next school year, leaving us to struggle to complete 1st grade curriculum. It also leaves us having to work with ORCA teachers and administrators to ask for exemption and some extreme modifications for Colton to successfully complete the curriculum before the end of the year. It is exhausting being the middle man...
Socially, mostly because of medical and school, things have hit a breaking point, resulting in gallons of tears because others do not even try to understand where we are in life. It doesnt help to have the girls come to me to say that someone commented directly to them what a horrible choice we have made by having them in ORCA, and how they are never going to function in the real world without "proper" educational and social interactions. I wish, just for a moment, that others would consider where they are, and in comparison, where we have been for the last 10 yrs. That they would give a little patience and understanding, instead of intolerance and criticsm. I would be interested to know how they would have done in similar circumstances...I try hard not to be upset, but when things are thrown right at the kids, it is hard not to be. Preston also carries bishopbric, military command staff, and project manager responsibilities that take him away from home often. These are things that are also very different from most others that we know. We often have to divide and conquer our family schedule, which includes enlisting the girls extra help and care for little people when Preston & I need to be gone at the same time. It doesnt leave a lot of room for getting out and about with friends, the girls' or ours. None of these things is going to change, so how do we find more time or more room, and ask more understanding when it just doesnt happen like we would hope? I often worry that we are far outside of the social loop because others are just plain tired of hearing that we are scheduled 6 months or more out, that what social stuff we do have is centered around church activities, that all of our craziness and our season in life just doesnt mesh with any social circles anymore...
Family interactions recently have resulted in friction and fireworks, almost on a non-stop basis, including having my son scream at me that he hates me and other not-so-lovely things. Have we gotten to a point where mom 24-7 is more than any of them can handle? We have gotten to a point where we will be looking into some extra help for the boys' extreme behaviors where they can channel that energy in a positive direction. Hopefully things will be in place soon. The girls are teenagers (and the youngest one has enough attitude to be one too) and our days flux between tears, stormy silence, focused work and hysterical laughter. I never quite know what each day will bring with the kids. Some days we all are off kilter from the get-go, others we are mostly productive. The house is often left untidy, trying to focus on what is most needed in the moment. In the long run, will it matter the house is often in disaster mode? Maybe not, but for now, it seems to matter alot. Having to choose between doing dishes or laundry, or helping someone with an assignment, or being too tired to think about doing either because I have spent hours in the car and at appts, adds to the uncertainty and tension.
The challenge really still is not having the consistency or routine in things because medical appts. and constant, long chunks of travel are part of almost every day. How can the kids not feel it, and then find the best way they know how to express themselves about how things are. Recently, those expressions have not been positive, and I am at a loss as to what to do or change to help any of us.
Spiritually, I feel like we are often on the edge. We try each day to make sure scriptures are being read and studied to prepare for seminary, meetings and temple sessions that are being attended, and Sunday classes taught. We are striving to make sure mini-FHE is being done each night. We are striving to do the things we have been asked to do. Striving has often resulted in tweaking - praying over multiple meals eaten in shifts, offering up what I feel are irreverent prayers because being in the bathroom, shower, or car are often the only times/places I am on my own for even a few minutes. It is taking advantage of a tiny teaching moment while driving a car full of 4 & 5 year olds to preschool because one of them asked about rainbows. It is asking in silent, heartfelt prayer for calm and patience while being screamed at by my almost 8-yr old or discipling my 10 yr old who seems to still have no concept of consequences. It is striving not to beat myself to a pulp for not being able to teach the kids important gospel principles that I dont have a grasp on myself. It is being thankful every moment that Heavenly Father has sent the right primary teachers and YW leaders into my children's lives. It is just trying to get through each day, hoping that we are doing things a little bit better than the day before. Sometimes it is doing all we can, and keeping hope that the little bit we have to offer will be enough.
So, I guess that is us right now, has been us for a long time, will probably still be us for quite awhile.... Not sure it helps to share more with others, in the hope it might bring some understanding. Maybe it just helps with sharing TMI and pushing others further away. Maybe it will give a small glimmer to the kids as they are older and remember these times that we struggled so. Maybe it just helps for me to get it all written down somewhere besides my heart and mind and out where I can think things through a bit more. Whatever it is, for good or bad, this is us. For now, it has to be enough. If it isnt, we will just keep trying to get out of bed every day and wear real clothes, it will be to keep trying to put one foot in front of the other, to keep trying to get through each day with kids fed (whatever that might involve), clothed, safe, and alive, it will be to keep trying to find and show patience, and gratitude for all things big or little (potty prayers are better than no prayers right?), it will be to just keep trying to do the best we can...and hope that someday it will be enough.
I open my heart (and my big mouth) to post here for our family journal, and I am 99.9% sure that the only person who reads (or cares about) my posts is my sweet, patient husband.
Does it matter at all that I post here, will my children care about having this journal of our family journey together? Will it help them understand when they are older, that I did the best that I could with what I had available in the moment? I don't know...all I can do is write now and hope that someday it might matter. So here I post my most current heartaches and worries, and in the process keep trying NOT to compare myself to others out there who I am in awe of, and will never be, because I am just me...
We have come to a point of "battle" mode again, in every area of life.
Medically, Colton & I have more on our plate than it seems we can get through. We are traveling to Corvallis multiple times a week, and sometimes even farther for both of us to receive needed care. We have had to condense our many appts, for both of us, to specific providers to try to alleviate some of the constant travel. We have both added several new specialists in the last couple of months trying to find answers to new and emerging concerns. For me, it has been trying to find answers to old concerns, and receiving results that have been mind-blowing and leaving us wondering what to do next. We are still finding more questions than answers. We try one step at a time to figure out a new remedy, and spend lots of time waiting to see if things work or not. I am in that process now, trying to resolve several things at once, and also doing a lot of waiting....In this process we are waiting for official reports for Colton so we can move forward with securing services, specialists and possibly new medications. Through all of this, we have truly been blessed with the very best care available, and that is something that I am thankful for daily.
Educationally, the kids have all floundered through the curriculum this term, and are still way behind even as the end of the term is now only 2 weeks away. Most of this has been a result of before-mentioned medical stuff. We are also still in battle mode with the school district to get them to accept the medical stuff to apply to Colton's IEP. You would think continuing circumstances would be case-in-point, and a no-brainer for having everything in place. Because they are not providing services, they have thus far dismissed the specialists' reports, wanting their own results. This has left us with 1/2 the school year gone, and Colton still not receiving services and documentation that should have been in place in September...It has also left me having to force their hand and request specific meetings to make sure these things are finally put on his IEP. Most likely, though, the benefits will not be of help until next school year, leaving us to struggle to complete 1st grade curriculum. It also leaves us having to work with ORCA teachers and administrators to ask for exemption and some extreme modifications for Colton to successfully complete the curriculum before the end of the year. It is exhausting being the middle man...
Socially, mostly because of medical and school, things have hit a breaking point, resulting in gallons of tears because others do not even try to understand where we are in life. It doesnt help to have the girls come to me to say that someone commented directly to them what a horrible choice we have made by having them in ORCA, and how they are never going to function in the real world without "proper" educational and social interactions. I wish, just for a moment, that others would consider where they are, and in comparison, where we have been for the last 10 yrs. That they would give a little patience and understanding, instead of intolerance and criticsm. I would be interested to know how they would have done in similar circumstances...I try hard not to be upset, but when things are thrown right at the kids, it is hard not to be. Preston also carries bishopbric, military command staff, and project manager responsibilities that take him away from home often. These are things that are also very different from most others that we know. We often have to divide and conquer our family schedule, which includes enlisting the girls extra help and care for little people when Preston & I need to be gone at the same time. It doesnt leave a lot of room for getting out and about with friends, the girls' or ours. None of these things is going to change, so how do we find more time or more room, and ask more understanding when it just doesnt happen like we would hope? I often worry that we are far outside of the social loop because others are just plain tired of hearing that we are scheduled 6 months or more out, that what social stuff we do have is centered around church activities, that all of our craziness and our season in life just doesnt mesh with any social circles anymore...
Family interactions recently have resulted in friction and fireworks, almost on a non-stop basis, including having my son scream at me that he hates me and other not-so-lovely things. Have we gotten to a point where mom 24-7 is more than any of them can handle? We have gotten to a point where we will be looking into some extra help for the boys' extreme behaviors where they can channel that energy in a positive direction. Hopefully things will be in place soon. The girls are teenagers (and the youngest one has enough attitude to be one too) and our days flux between tears, stormy silence, focused work and hysterical laughter. I never quite know what each day will bring with the kids. Some days we all are off kilter from the get-go, others we are mostly productive. The house is often left untidy, trying to focus on what is most needed in the moment. In the long run, will it matter the house is often in disaster mode? Maybe not, but for now, it seems to matter alot. Having to choose between doing dishes or laundry, or helping someone with an assignment, or being too tired to think about doing either because I have spent hours in the car and at appts, adds to the uncertainty and tension.
The challenge really still is not having the consistency or routine in things because medical appts. and constant, long chunks of travel are part of almost every day. How can the kids not feel it, and then find the best way they know how to express themselves about how things are. Recently, those expressions have not been positive, and I am at a loss as to what to do or change to help any of us.
Spiritually, I feel like we are often on the edge. We try each day to make sure scriptures are being read and studied to prepare for seminary, meetings and temple sessions that are being attended, and Sunday classes taught. We are striving to make sure mini-FHE is being done each night. We are striving to do the things we have been asked to do. Striving has often resulted in tweaking - praying over multiple meals eaten in shifts, offering up what I feel are irreverent prayers because being in the bathroom, shower, or car are often the only times/places I am on my own for even a few minutes. It is taking advantage of a tiny teaching moment while driving a car full of 4 & 5 year olds to preschool because one of them asked about rainbows. It is asking in silent, heartfelt prayer for calm and patience while being screamed at by my almost 8-yr old or discipling my 10 yr old who seems to still have no concept of consequences. It is striving not to beat myself to a pulp for not being able to teach the kids important gospel principles that I dont have a grasp on myself. It is being thankful every moment that Heavenly Father has sent the right primary teachers and YW leaders into my children's lives. It is just trying to get through each day, hoping that we are doing things a little bit better than the day before. Sometimes it is doing all we can, and keeping hope that the little bit we have to offer will be enough.
So, I guess that is us right now, has been us for a long time, will probably still be us for quite awhile.... Not sure it helps to share more with others, in the hope it might bring some understanding. Maybe it just helps with sharing TMI and pushing others further away. Maybe it will give a small glimmer to the kids as they are older and remember these times that we struggled so. Maybe it just helps for me to get it all written down somewhere besides my heart and mind and out where I can think things through a bit more. Whatever it is, for good or bad, this is us. For now, it has to be enough. If it isnt, we will just keep trying to get out of bed every day and wear real clothes, it will be to keep trying to put one foot in front of the other, to keep trying to get through each day with kids fed (whatever that might involve), clothed, safe, and alive, it will be to keep trying to find and show patience, and gratitude for all things big or little (potty prayers are better than no prayers right?), it will be to just keep trying to do the best we can...and hope that someday it will be enough.
Saturday, January 8, 2011
Emotional Day
Seems my emotions are on a roller coaster today. This morning was pure joy and also tears of sadness and discouragement.
I just have not been able to shake the fact that, even knowing our cirumstances are so different from everyone around us (friends and family), we are missing building those important ties and I am failing as a mother.
The kids have really struggled recently with life in general. Part of that has been our 2 week battle with illness. Some of the kids got really sick, others a little bit, but it has been enough to knock them out of the norm. The other part has a great deal to do with how much I have been, and will be away from home because of all the medical stuff for me and Colton.
When I am away, the kids battle tooth and nail, and homework gets further behind. I keep thinking at times that if they were in school, getting help and homework completed, that we would still be seeking help for little ones. That help hasnt been, and isnt available, so I am not sure that having the kids in "regular" school would really change anything.
I know that I feel and see the girls breaking under the stress of school work and having to be responsible for little people. I feel guilty putting so much pressure and responsibility on them. I am way beyond being able to meet all the needs that are required of me, for the kids, or house, or school, or anything. I feel the huge pressure and stress that no one around us understands where we are, esp the kids' and our friends. I almost feel like we just dont belong anymore, anywhere. That our season of life that continues to be filled with extra responsibilities and struggles has isolated us so far away from social circles that it wont ever be re-gained.
I know I am not supposed to compare us to anyone else. It is hard at times, esp when the girls and I get so lonesome and it seems the only inviting that is done is on our side, and often those invitations are not accepted or reciprocated. I often feel that so much struggle and difficulties have happened in the past, that others can't see past them to who I am, to who we are now...
Preston & I tried to do some chatting this morning, but it didnt seem to stop the tears from flowing then, and still now, even though most of the day is over. I feel the wave of all the stuff that hasnt been accomplished, and the day is 3/4 gone. Life continues to come and go, and yet I feel like very little, if anything is done in our forward progression - mostly because I am not healthy enough, not able to fulfill all of the "shoulds", not living up to or fulfilling all of the expectations of those around us.
Just feeling unsure about alot of things.
I just have not been able to shake the fact that, even knowing our cirumstances are so different from everyone around us (friends and family), we are missing building those important ties and I am failing as a mother.
The kids have really struggled recently with life in general. Part of that has been our 2 week battle with illness. Some of the kids got really sick, others a little bit, but it has been enough to knock them out of the norm. The other part has a great deal to do with how much I have been, and will be away from home because of all the medical stuff for me and Colton.
When I am away, the kids battle tooth and nail, and homework gets further behind. I keep thinking at times that if they were in school, getting help and homework completed, that we would still be seeking help for little ones. That help hasnt been, and isnt available, so I am not sure that having the kids in "regular" school would really change anything.
I know that I feel and see the girls breaking under the stress of school work and having to be responsible for little people. I feel guilty putting so much pressure and responsibility on them. I am way beyond being able to meet all the needs that are required of me, for the kids, or house, or school, or anything. I feel the huge pressure and stress that no one around us understands where we are, esp the kids' and our friends. I almost feel like we just dont belong anymore, anywhere. That our season of life that continues to be filled with extra responsibilities and struggles has isolated us so far away from social circles that it wont ever be re-gained.
I know I am not supposed to compare us to anyone else. It is hard at times, esp when the girls and I get so lonesome and it seems the only inviting that is done is on our side, and often those invitations are not accepted or reciprocated. I often feel that so much struggle and difficulties have happened in the past, that others can't see past them to who I am, to who we are now...
Preston & I tried to do some chatting this morning, but it didnt seem to stop the tears from flowing then, and still now, even though most of the day is over. I feel the wave of all the stuff that hasnt been accomplished, and the day is 3/4 gone. Life continues to come and go, and yet I feel like very little, if anything is done in our forward progression - mostly because I am not healthy enough, not able to fulfill all of the "shoulds", not living up to or fulfilling all of the expectations of those around us.
Just feeling unsure about alot of things.
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