What a crazy time of year! Lots of fun, lots of traditions, but also lots of exhaustion!
We had a really great weekend as a family and also for some "me" time.
Friday night I was out until 12:30 a.m. at a neighbors for a holiday party and bunko....girls only! Lots of fun!
Saturday morning I met a good friend for coffee. It always amazes me how I can run off with a friend and how quickly the morning goes...we left at 9 a.m. and sat at Starbucks until 12! It felt like we had just sat down and started catching up on life and 3 hours flew past us in minutes...crazy how we girls can talk and talk!
I came home and took all three kids to our library for gingerbread house making...my kids ate their houses as they were walking out the door!
Saturday night we took the kids to a Live Nativity at one of our local churches...it is pretty spectacular. You drive thru or walk. It is only one weekend and at night. There are torches lighting up the pathway as you drive/walk through the town of David. They have live animals (donkeys and goats) and a whole cast of people dressed the part as you make your way thru Nazareth, where you see a big star up high and the stable in the distance...it is very cool. We let the kids out of their seats and made cookies/hot chocolate for the ride...they love it!
Sunday we did or traditional pics with Santa downtown at Nordstrom. For years we had always stood for hours outside, as you make your way to the cottage, and then Santa. Our first year with Hudson, as we stood in the cold, I thought about asking about special accommodations and I must say, Nordstroms is awesome. Since Hudson, we make reservations every year and they have a "special needs" Santa inside on the 5th floor. It is awesome...not to have him in the cold, among all the people...don't get me wrong...I 'd rather be among the norm, but the fact that this is our situation, and Nordstrom offers such a wonderful service to families like mine is a blessing. They are also great about letting you take your own pictures...they even took a family pic, and it actually turned out good, so I have turned into Christmas cards...I realized it has been since I was pregnant with Hudson, that we had a family pic, and never with Hudson, so it was a real blessing to get a unexpected, decent family picture! So pictures it was, then to Westlake Center for a carousel ride, which I took Hudson on too....he loved the lights! Then Bennihana for dinner which my kids LOVED! My kids have a very sophisticated palate....soup, shrimp, chicken, steak and fried rice...they cleaned their plated well!
The best part of the whole evening was being together as a family. It is always a crap-shoot....how Hudson will be...how his seizures will be....how the cold and the running around will affect him, but he was a trooper and he did wonderful. Toward the end, when it was desert time he started getting tired and I made the mistake of giving him ice cream and forgot how he hates things super cold...so he started crying....thank goodness it was the end of our evening. All in all ...a great weekend, and to be a complete family was the best!
Tonight....kids Christmas performances, class parties, last week of school. Saturday...our family with my mom and Fred to dinner and Christmas Cruise around Lake Washington, Sunday...my mom and I got to the Rockettes and dinner in Seattle....still have a ton to do in the next 10 days.....Christmas comes way too fast, don't ya think?!?
Just Curious.....If you have a ton of therapists for your kiddo, like I do, what do YOU get them Christmas????? Need ideas!
This blog is dedicated to my son, he is among the strongest, bravest souls I know, fighting the effects of Mitochondrial Disease. Through God's grace,I share our story,one that is lived day to day...some days I am given reasons to rejoice and other days are shattered by the effects of seizures and broken dreams. At the end of the day I give it all to God, and place my precious Hudson in His hands, He who created him.
Tuesday, December 15, 2009
Wednesday, December 9, 2009
Vegas
Prayers were answered....the kids had a fabulous time while I was gone, and from what my mom said, Hudson did great! (I thought she was just telling me that on the phone so I wouldn't worry, but she claims all was well!)
My mom had Hudson sleep with her on my bed, and she said he slept peacefully, accept the occasional cough. Seizures were at a minimum, and no major clusters...an answered prayer! He was my biggest worry.
Of course the kids had a blast, how could they not? Listen to what they were doing....
baths by candle light, ice cream sundaes with ALL the fixings, holiday arts and crafts festival, Santa in the harbor via the fire truck, dinner out, 3-D Christmas Carol movie...all of this in 2 days!!!! My mom spoiled them but good! I am sure they will always remember that weekend spent with their Nanna...that weekend will be tucked away as a special childhood memory, I am sure!
As for me, well, I didn't ask for prayer, remeber? I only asked for prayers to be said for my kids, especially Hudson! Maybe I should have included me !?!
I got to the gate and the flight was oversold and although I was a paying customer, I thought I was not getting on...I was the last passenger to board and I thought the passengers were going to start throwing things at me as I walk down the aisle...they didn't know I had been standing outside the gate, waiting to see if a seat would become available! Thankfully, they got me on and off I went! I have never been to Vegas in the winter....it was COLD! 30's at night and 50's during the day...needless to say....no pool or lounging about. Paul picked me up from the airport but had to go back to work so I hung out at the hotel, walked around, got a coffee, and eventually just laid down in my room...the day before was catching up with me.
In our hotel (off the strip, in a city called Summerlin) their was a movie theater and bowling alley. We met 2 other couples for dinner and did bowling afterwards. It was fun, although I had been hoping to just have some alone time with my husband and it never really happened. Sat Paul and I drove around Vegas looking at neighborhoods, housing, and another couple asked if they could hang out with us, and so they did. We went to PF Changs for lunch and then that night was the company party. The dinner was nice, but it was just that, dinner...you couldn't walk around and mingle because the private rom was too small and you basically waked in and sat at a table. Afterwards, we went back to our hotel and Paul went to bed. I sorta was hoping we would go do something....I was dressed in my new clothes, and wasn't tired and well how many nights do we have no kids, hotel and VEGAS? Paul wasn't up for it....Sunday he finally told me that he had been sick all week...stomach bug...throwing up and "D"...he didn't want to tell me thinking I may cancel coming up to Vegas. So, the whole time I was thinking it was "me" and he didn't want to hang with me, and I was sorta feeling down during my stay but trying not to let it get to me or ruin my time.
The highlight of my trip was when Paul drove some friends to the airport and I went shopping instead! I enjoy being able to browse...by myself....shopping is too stressful with little kids...I can't look at anything because my eyes are glued on three little people, making sure they stick with me, don't touch or break anything, etc. So that hour of walking through stores was a treat! I also finished my book! I NEVER get to read at home, so to read an entire book was awesome....90 Minutes in Heaven...a really good book about a pastor who was pronounced dead at the scene of a horrific car accident, and was literally dead, without a heart beat for 90 minutes, experinces heaven, and is brought back to earth. I have the 2nd book he wrote after this one, and can't wait to start it....it is just WHEN? I need to go away to read a book! :)
You may wonder why I mentioned looking at neighborhoods in Vegas....well, right before Halloween, Paul got an offer of promotion into a corporate position, which means part of accepting the offer would bring him to Vegas where their new corporate office is. It has been bitter sweet...he works very, very hard and is so dedicated to job and the company and his effort were recognized...a wonderful career opportunity...lots has been discussed, many scaenarios have been looked at, our plans have changed several times. So much to consider when you have a sick child, and like I always have said, God put Hudson in the hands of an pediatric epitologist and lead mito researcher, before we even knew the cause for his seizures...this is where he needs to be. After Paul accepted the position is when Hudson got the swine flu. I believe God sent me a message through these series of events....I believe Hudson's survival of the flu, which I was told could take his life, was by Gods grace and answered prayers, and the fact that Hudson is under Children's hospital and Dr.S....no doubt in my mind, any other facitlity would not know how to treat Hudson so effectively, as Children's.
With that incident we talked about the possiblity of keeping 2 homes. Many families have a parent in the military, or an industry where much traveling is required, and we figure we would see if somehow I could get a job, to pay for the mortgage out in Vegas, then we could justify not having to rent out our home here in WA. (homes are super inexpensive there and we are taking small)
The prospects of me getting a job seemed slim, or difficult because I need flexiblity. You see, our plan after the swine flu incident, was to buy a small home in Vegas, so with any school breaks or in the summer, the kids and I would be in Vegas with Paul. Through the school year Paul will come home every other weekend. I know this might sound crazy, but our situation is not typical either....so..... I decided to solely rely on prayer. I sent an email to friends and family, asking if they knew of anyone who has a business and is looking for part time help, or anyone who knows anybody who needs reliable, honest, loving childcare, and to pass my name along. I never stated in that email why I was looking for a part time job. I am sure most thought I was crazy!
After that email, I gave it to God. I asked him to show me where I need to be, where He wants me to be, what is best for my family. The Lord used one of my good friends (if your reading...thanks marylynn for your help and friendship), to give me that answer. She had talked to some administrators at her church and said there may be some help needed in their "mom's morning out" program and possible other various childcare needs. She got me an application and right before Thanksgiving I faxed it. Last week I spoke to a very nice gal at the church and we met yesterday, and after talking/interviweing for the job...I got it! She knows the entire situation, and is willing to give the flexibilty I need to make it work. I can also bring Hudson if need be, so I don't have to have seperate care for him, AND it is while my other 2 are in school, so they won't even know I am working! I couldn't have dreamed up a more perfect situation, and I feel super blessed that I get to work in a church, blessing small children! Praise God.....not for answering MY prayer, but for showing me so clearly His will for my family, I have no question where I need to be now. My husband is proud of me, for getting this job, and he now sees how God orchestrated the whole thing...it never ceases to amaze me, when you truly let go, (and He know when you have completely let go), and hand something in His care, how God can make things turn out way better than you could ever have imagined....I am still in awe!
Paul is suppose to be living in Vegas in Febraury. I know it will be hard on the kids, but since accepting the offer he been required to be in Vegas each month for a week. So they are getting a taste of Daddy having to travel and we have tried our best to explain how and why all of this will work.
Oh, how I wish life were easier. In my last post, Jeff (fellow blogger) commented how as Christians, our lives here on earth were not meant or promised to be easy...I am always reminding myself of that....because I honestly think, our time here on earth, seperated from Jesus and the kingdom is our hell, and for those who are not believers, this is the best it will ever get for them...this time, here on earth is their heaven.
I know that is a bold statement....but for me it is truth....I pray for the non-believers and for their salvation, I have family member among them, I want everyone to know the amazing redemption of a loving God. In the midst of darkness, He is always there, showing us the way....it is our choice, free-will, to choose our way or His.
I am sorry if this offends...I am not a "bible thumper" or some crazy christian who preaches....I just have learned a lot..... through a boy....... named Hudson......and I am sharing my heart in this journey.
Enough said.......................
See.......... I wasn't kidding when I said I have had a lot on my plate, huh?
My mom had Hudson sleep with her on my bed, and she said he slept peacefully, accept the occasional cough. Seizures were at a minimum, and no major clusters...an answered prayer! He was my biggest worry.
Of course the kids had a blast, how could they not? Listen to what they were doing....
baths by candle light, ice cream sundaes with ALL the fixings, holiday arts and crafts festival, Santa in the harbor via the fire truck, dinner out, 3-D Christmas Carol movie...all of this in 2 days!!!! My mom spoiled them but good! I am sure they will always remember that weekend spent with their Nanna...that weekend will be tucked away as a special childhood memory, I am sure!
As for me, well, I didn't ask for prayer, remeber? I only asked for prayers to be said for my kids, especially Hudson! Maybe I should have included me !?!
I got to the gate and the flight was oversold and although I was a paying customer, I thought I was not getting on...I was the last passenger to board and I thought the passengers were going to start throwing things at me as I walk down the aisle...they didn't know I had been standing outside the gate, waiting to see if a seat would become available! Thankfully, they got me on and off I went! I have never been to Vegas in the winter....it was COLD! 30's at night and 50's during the day...needless to say....no pool or lounging about. Paul picked me up from the airport but had to go back to work so I hung out at the hotel, walked around, got a coffee, and eventually just laid down in my room...the day before was catching up with me.
In our hotel (off the strip, in a city called Summerlin) their was a movie theater and bowling alley. We met 2 other couples for dinner and did bowling afterwards. It was fun, although I had been hoping to just have some alone time with my husband and it never really happened. Sat Paul and I drove around Vegas looking at neighborhoods, housing, and another couple asked if they could hang out with us, and so they did. We went to PF Changs for lunch and then that night was the company party. The dinner was nice, but it was just that, dinner...you couldn't walk around and mingle because the private rom was too small and you basically waked in and sat at a table. Afterwards, we went back to our hotel and Paul went to bed. I sorta was hoping we would go do something....I was dressed in my new clothes, and wasn't tired and well how many nights do we have no kids, hotel and VEGAS? Paul wasn't up for it....Sunday he finally told me that he had been sick all week...stomach bug...throwing up and "D"...he didn't want to tell me thinking I may cancel coming up to Vegas. So, the whole time I was thinking it was "me" and he didn't want to hang with me, and I was sorta feeling down during my stay but trying not to let it get to me or ruin my time.
The highlight of my trip was when Paul drove some friends to the airport and I went shopping instead! I enjoy being able to browse...by myself....shopping is too stressful with little kids...I can't look at anything because my eyes are glued on three little people, making sure they stick with me, don't touch or break anything, etc. So that hour of walking through stores was a treat! I also finished my book! I NEVER get to read at home, so to read an entire book was awesome....90 Minutes in Heaven...a really good book about a pastor who was pronounced dead at the scene of a horrific car accident, and was literally dead, without a heart beat for 90 minutes, experinces heaven, and is brought back to earth. I have the 2nd book he wrote after this one, and can't wait to start it....it is just WHEN? I need to go away to read a book! :)
You may wonder why I mentioned looking at neighborhoods in Vegas....well, right before Halloween, Paul got an offer of promotion into a corporate position, which means part of accepting the offer would bring him to Vegas where their new corporate office is. It has been bitter sweet...he works very, very hard and is so dedicated to job and the company and his effort were recognized...a wonderful career opportunity...lots has been discussed, many scaenarios have been looked at, our plans have changed several times. So much to consider when you have a sick child, and like I always have said, God put Hudson in the hands of an pediatric epitologist and lead mito researcher, before we even knew the cause for his seizures...this is where he needs to be. After Paul accepted the position is when Hudson got the swine flu. I believe God sent me a message through these series of events....I believe Hudson's survival of the flu, which I was told could take his life, was by Gods grace and answered prayers, and the fact that Hudson is under Children's hospital and Dr.S....no doubt in my mind, any other facitlity would not know how to treat Hudson so effectively, as Children's.
With that incident we talked about the possiblity of keeping 2 homes. Many families have a parent in the military, or an industry where much traveling is required, and we figure we would see if somehow I could get a job, to pay for the mortgage out in Vegas, then we could justify not having to rent out our home here in WA. (homes are super inexpensive there and we are taking small)
The prospects of me getting a job seemed slim, or difficult because I need flexiblity. You see, our plan after the swine flu incident, was to buy a small home in Vegas, so with any school breaks or in the summer, the kids and I would be in Vegas with Paul. Through the school year Paul will come home every other weekend. I know this might sound crazy, but our situation is not typical either....so..... I decided to solely rely on prayer. I sent an email to friends and family, asking if they knew of anyone who has a business and is looking for part time help, or anyone who knows anybody who needs reliable, honest, loving childcare, and to pass my name along. I never stated in that email why I was looking for a part time job. I am sure most thought I was crazy!
After that email, I gave it to God. I asked him to show me where I need to be, where He wants me to be, what is best for my family. The Lord used one of my good friends (if your reading...thanks marylynn for your help and friendship), to give me that answer. She had talked to some administrators at her church and said there may be some help needed in their "mom's morning out" program and possible other various childcare needs. She got me an application and right before Thanksgiving I faxed it. Last week I spoke to a very nice gal at the church and we met yesterday, and after talking/interviweing for the job...I got it! She knows the entire situation, and is willing to give the flexibilty I need to make it work. I can also bring Hudson if need be, so I don't have to have seperate care for him, AND it is while my other 2 are in school, so they won't even know I am working! I couldn't have dreamed up a more perfect situation, and I feel super blessed that I get to work in a church, blessing small children! Praise God.....not for answering MY prayer, but for showing me so clearly His will for my family, I have no question where I need to be now. My husband is proud of me, for getting this job, and he now sees how God orchestrated the whole thing...it never ceases to amaze me, when you truly let go, (and He know when you have completely let go), and hand something in His care, how God can make things turn out way better than you could ever have imagined....I am still in awe!
Paul is suppose to be living in Vegas in Febraury. I know it will be hard on the kids, but since accepting the offer he been required to be in Vegas each month for a week. So they are getting a taste of Daddy having to travel and we have tried our best to explain how and why all of this will work.
Oh, how I wish life were easier. In my last post, Jeff (fellow blogger) commented how as Christians, our lives here on earth were not meant or promised to be easy...I am always reminding myself of that....because I honestly think, our time here on earth, seperated from Jesus and the kingdom is our hell, and for those who are not believers, this is the best it will ever get for them...this time, here on earth is their heaven.
I know that is a bold statement....but for me it is truth....I pray for the non-believers and for their salvation, I have family member among them, I want everyone to know the amazing redemption of a loving God. In the midst of darkness, He is always there, showing us the way....it is our choice, free-will, to choose our way or His.
I am sorry if this offends...I am not a "bible thumper" or some crazy christian who preaches....I just have learned a lot..... through a boy....... named Hudson......and I am sharing my heart in this journey.
Enough said.......................
See.......... I wasn't kidding when I said I have had a lot on my plate, huh?
Friday, December 4, 2009
M.W.S.
It is 11:30 p.m. and I am exhausted.
I am rating this post MWS...major-whine-session...so, if you don't want to hear a tired, frustrated, discouraged mom whine and moan, I suggest you move on....this is my blog, and I need to throw-up my feelings, in hopes I will feel better...so here goes....
I am going to LasVegas tomorrow.....for really one full day (sat.)-get in Fri. at 2:15p.m. and leave Sun. at 8:45 p.m. Sometimes I feel like anything that is suppose to be "good" in my life seems to get sabotaged.....
Starting with Hudson....Tuesday, he didn't look good to me...flushed cheeks (no fever) then that gave way to pasty complexion, glassy eyes, crying episodes...not to mention the cough he has had for the past 3 months, which has not gotten any better! I was also startled to find the back of his head and sheet wet, with vomit, or maybe mucous? I don't know, it wasn't anywhere except his backside and it wasn't sweat! His throwing up days has been months...I thought maybe acid? Well, knowing I was leaving this week, I thought about taking him to his PCP, just to give me peace of mind, but never made the call. Wednesday morning Hudson woke at about 5a.m., which is unusual, and it sounded like a seizure, the "tonic-screaming-scarey" type.I ran to his crib. He started coughing and choking in between seizures, so as I sat him up leaning his head forward I could see the thickest mucous in his mouth...I would be choking too! The scarey part was afterwards, his breathing was labored, and like i have never heard...so I brought him in to bed with me and held him until he fell back asleep...but his breathing was still not sounding right. I took him in to his PCP. The nurse checked his O2 levels, I envisioned us heading to the hospital, because the numbers were low...thankfully not low enough to admit us. He was given a steroid for Croup, and antibiotics for bronchitis/sinus infection....because there is definitely a viral infection after the doc saw Hudson cough his lovely yellowy-green mucous. The croup apprently is going around and he gave me an example of what the breathing would sound like and I believe that is what I was heaaring that morning. So yesterday was shot...I planned on cleaning house, preparing for my trip, while the kids were in school, and it wasn't happening between the PCP and getting meds filled, shot!!!
Another worry...Hudson's seizures...they are getting worse and I don't know why....maybe because of all this compounding illness? It's a guessing game.....BUT....it has to get even worse this week, when I am suppose to go out of town...this morning I was feeding him in his crib, he was asleep, and he went from sleep to eyes shooting open and going into a tonic...I teared up...he can' t even sleep peacefully now? What is going on? I have never seen that happen!
Then another thing...just to make me feel horrible, worried, and to feel sabatoged....to even try to have a good time this weekend....A little before I got on here, after getting all 3 kids to bed between 9-10, I hear Hudson do his cry-out...BUT...it keeps going, and going, and going...in spurts....so I run upstairs and he was having a CLUSTER OF SEIZURES!!!!!!!!!!!!!!!!!!!! I couldn't believe my eyes....WHAT IS GOING ON? WHY RIGHT BEFORE I AM SUPPOSE TO GO AWAY!?! This cluster was all in his face and mouth, but it was like the bad old days, where I would sit and take count of how many spasms in a cluster....why? WHY? I am sickened...I don't want to see those, it looked like I.S. not what I want to see resurface!
Sometimes I feel, because I place my faith in God, and let it be known, that the enemy just chips away at me, "lets see how much more I can throw at her....will she cave, give up, stop praying, stop running to God and start running away...from church, from friends, from hope, from God? Can I just wear her thin enough to grab hold?" Some may think this is crazy talk...but really....I feel the enemy and his sabatoge....I feel discouraged, and crazed (at times :) ) because I have waaaay to much on my plate, more than anyone knows...this here, what you read...bits and pieces....and it would be so much easier to give up, not be faithful, self-medicate, run away, hide....but I can't... hide from God ...he holds me and knows my pain, and sorrow and discouragement, and knows more than these bits and pieces...he knows it all....and I don't want to live my life any other way, even though the temptation to throw my hands up and question everything would be such an easier path, at least my flesh thinks so. I press on.
O.k. so here is what it takes for me to leave tomorrow....
*care for my kids.....my mom will take care of my kids and a wonderful family friend will care for Katelyn...my mom's 18 year old daughter....yep, my mom has a high-school-er...and she has Aspergers....so not only do special arrangements need to be made for my kids, but for her daughter as well, and my mom certainly can't take care of all 4! I do it occasionally and it is very wearing.
* vials of all meds pre-drawn...it took me well over an hour, and about 60 vials, labeled with what time, what meal, baggied in groups (fridge-non-fridge), labeled by day.
* writing out the feeding schedule
*packing
* buying gifts for a co. exchange and wrapping them (kids with me)
* shopping for something to wear, because my husband says sweats or my baggy jeans aren't going to cut it...whoops...spent waaaay too much, but the sales girl was so convincing!
* getting all homework done
*intentions to make a meal, to make it easier on mom, for while I was gone (never happened)
*intentions to make and deliver a meal to a friend who had day surgery yesterday (never happened)
* cleaning my 3 bathrooms at 9 p.m. because the thought of my mom staying here, (who vacuums and cleans her house every day and it is only the 2 of them!)....well, lets just say I used to be like her...until Hudson came along!
* SCRUBBED my shower...hate doing shower cleaning...but it looks the best it has in a long time!
*Changed the linens on my bed
* and now am throwing all of this up for....the past hour....yikes, it is 12:30 a.m.....I got to go to bed and put this week behind me!
Oh, I forgot to mention...the above...all today...and I volunteered in the kids classrooms from 8:15-11 :15 this morning!
PLEASE pray for my kids....mostly for Hudson, and his health and seizures. That they will have a smooth weekend, and my mom is happy when I come home...not happy that I am home...because it was horrible.
Oh, i think I need a good night sleep and prayer for peace of mind. If you stuck with me through this MWS, thanks, and if not....I totally understand!
I am rating this post MWS...major-whine-session...so, if you don't want to hear a tired, frustrated, discouraged mom whine and moan, I suggest you move on....this is my blog, and I need to throw-up my feelings, in hopes I will feel better...so here goes....
I am going to LasVegas tomorrow.....for really one full day (sat.)-get in Fri. at 2:15p.m. and leave Sun. at 8:45 p.m. Sometimes I feel like anything that is suppose to be "good" in my life seems to get sabotaged.....
Starting with Hudson....Tuesday, he didn't look good to me...flushed cheeks (no fever) then that gave way to pasty complexion, glassy eyes, crying episodes...not to mention the cough he has had for the past 3 months, which has not gotten any better! I was also startled to find the back of his head and sheet wet, with vomit, or maybe mucous? I don't know, it wasn't anywhere except his backside and it wasn't sweat! His throwing up days has been months...I thought maybe acid? Well, knowing I was leaving this week, I thought about taking him to his PCP, just to give me peace of mind, but never made the call. Wednesday morning Hudson woke at about 5a.m., which is unusual, and it sounded like a seizure, the "tonic-screaming-scarey" type.I ran to his crib. He started coughing and choking in between seizures, so as I sat him up leaning his head forward I could see the thickest mucous in his mouth...I would be choking too! The scarey part was afterwards, his breathing was labored, and like i have never heard...so I brought him in to bed with me and held him until he fell back asleep...but his breathing was still not sounding right. I took him in to his PCP. The nurse checked his O2 levels, I envisioned us heading to the hospital, because the numbers were low...thankfully not low enough to admit us. He was given a steroid for Croup, and antibiotics for bronchitis/sinus infection....because there is definitely a viral infection after the doc saw Hudson cough his lovely yellowy-green mucous. The croup apprently is going around and he gave me an example of what the breathing would sound like and I believe that is what I was heaaring that morning. So yesterday was shot...I planned on cleaning house, preparing for my trip, while the kids were in school, and it wasn't happening between the PCP and getting meds filled, shot!!!
Another worry...Hudson's seizures...they are getting worse and I don't know why....maybe because of all this compounding illness? It's a guessing game.....BUT....it has to get even worse this week, when I am suppose to go out of town...this morning I was feeding him in his crib, he was asleep, and he went from sleep to eyes shooting open and going into a tonic...I teared up...he can' t even sleep peacefully now? What is going on? I have never seen that happen!
Then another thing...just to make me feel horrible, worried, and to feel sabatoged....to even try to have a good time this weekend....A little before I got on here, after getting all 3 kids to bed between 9-10, I hear Hudson do his cry-out...BUT...it keeps going, and going, and going...in spurts....so I run upstairs and he was having a CLUSTER OF SEIZURES!!!!!!!!!!!!!!!!!!!! I couldn't believe my eyes....WHAT IS GOING ON? WHY RIGHT BEFORE I AM SUPPOSE TO GO AWAY!?! This cluster was all in his face and mouth, but it was like the bad old days, where I would sit and take count of how many spasms in a cluster....why? WHY? I am sickened...I don't want to see those, it looked like I.S. not what I want to see resurface!
Sometimes I feel, because I place my faith in God, and let it be known, that the enemy just chips away at me, "lets see how much more I can throw at her....will she cave, give up, stop praying, stop running to God and start running away...from church, from friends, from hope, from God? Can I just wear her thin enough to grab hold?" Some may think this is crazy talk...but really....I feel the enemy and his sabatoge....I feel discouraged, and crazed (at times :) ) because I have waaaay to much on my plate, more than anyone knows...this here, what you read...bits and pieces....and it would be so much easier to give up, not be faithful, self-medicate, run away, hide....but I can't... hide from God ...he holds me and knows my pain, and sorrow and discouragement, and knows more than these bits and pieces...he knows it all....and I don't want to live my life any other way, even though the temptation to throw my hands up and question everything would be such an easier path, at least my flesh thinks so. I press on.
O.k. so here is what it takes for me to leave tomorrow....
*care for my kids.....my mom will take care of my kids and a wonderful family friend will care for Katelyn...my mom's 18 year old daughter....yep, my mom has a high-school-er...and she has Aspergers....so not only do special arrangements need to be made for my kids, but for her daughter as well, and my mom certainly can't take care of all 4! I do it occasionally and it is very wearing.
* vials of all meds pre-drawn...it took me well over an hour, and about 60 vials, labeled with what time, what meal, baggied in groups (fridge-non-fridge), labeled by day.
* writing out the feeding schedule
*packing
* buying gifts for a co. exchange and wrapping them (kids with me)
* shopping for something to wear, because my husband says sweats or my baggy jeans aren't going to cut it...whoops...spent waaaay too much, but the sales girl was so convincing!
* getting all homework done
*intentions to make a meal, to make it easier on mom, for while I was gone (never happened)
*intentions to make and deliver a meal to a friend who had day surgery yesterday (never happened)
* cleaning my 3 bathrooms at 9 p.m. because the thought of my mom staying here, (who vacuums and cleans her house every day and it is only the 2 of them!)....well, lets just say I used to be like her...until Hudson came along!
* SCRUBBED my shower...hate doing shower cleaning...but it looks the best it has in a long time!
*Changed the linens on my bed
* and now am throwing all of this up for....the past hour....yikes, it is 12:30 a.m.....I got to go to bed and put this week behind me!
Oh, I forgot to mention...the above...all today...and I volunteered in the kids classrooms from 8:15-11 :15 this morning!
PLEASE pray for my kids....mostly for Hudson, and his health and seizures. That they will have a smooth weekend, and my mom is happy when I come home...not happy that I am home...because it was horrible.
Oh, i think I need a good night sleep and prayer for peace of mind. If you stuck with me through this MWS, thanks, and if not....I totally understand!
Tuesday, December 1, 2009
A week in review...
I know...I am a horrible blogger..I can't stay on top of it, and then I get so far behind there is simply too much and I know I'd bore you to death!
I won't bore you with the details of the past week, instead I will just recap with some pictures...
Hailey happy making the worlds worst fudge! (Remember my pumpkin fudge disaster?)
My mom at school for Grandparents Day...she had double duty....
For Thanksgiving Hudson got a new-do...hair-do(cut) that is!
Doesn't he look like a "little man?" The whole outfit was Hunter's...of course as I put on those stinky cute brown shoes, I couldn't help but think about Hunter walking/toddling about when he wore those....a sad pit sank in my heart.as I placed them on Hudson's feet.
Thanksgiving dinner at my mom's house......

At the table...
Hudson hanging out with his Uncle Marc (my brother)
And now on to the next holiday...everything is done except for the outside of our house....



I won't bore you with the details of the past week, instead I will just recap with some pictures...
Hailey happy making the worlds worst fudge! (Remember my pumpkin fudge disaster?)
My mom at school for Grandparents Day...she had double duty....
Thanksgiving morning...hot chocolate and cinnamon rolls...happy kiddos!
For Thanksgiving Hudson got a new-do...hair-do(cut) that is!
Doesn't he look like a "little man?" The whole outfit was Hunter's...of course as I put on those stinky cute brown shoes, I couldn't help but think about Hunter walking/toddling about when he wore those....a sad pit sank in my heart.as I placed them on Hudson's feet.
Thanksgiving dinner at my mom's house......
Girls will be girls...posing all cute......
....and boys will be boys, playing with their toys!
At the table...
This was the first year both kids actually decorated the tree...start to finish!
Of course we had the christmas carols playing, while decorating the tree, and the kids were so excited to go through all of the ornaments we have collected over the years, and to find "their" ornament representing each of their precious years, I look over and the sad pit takes residencey once again...Hudson isn't grabbing at the ornaments, or throwing them, or pulling them off the tree....like my other kids did at age 2.....nope, he sits...in his seizurey-blankish-stare....and I can't help but be overcome with sadness...this is his thrid Christmas....you would think it wouldn't hit me, over, and over, and over again......but the reality of this disease slaps me in the face, and I am saddened beyond belief, once again...that he seems to not have a clue what is going on around him.....as crazy as it sounds, I am grateful he doesn't know any different....he doesn't know life any other way, so he doesn't know what he is missing out on.....but I know, and it breaks my heart.
The tree is done...
The kids are happy...well sort of...until the 3rd pic...Hudson's had enough of his sis strangling him!
Another busy week....I am leaving on Friday....believe it or not.....by MYSELF...ALL ALONE...ON AN AIRPLANE...ALONE...and going to sin city aka viva LAS VEGAS....ALONE....where I will meet my husband (he left today) and we will be in a hotel...ALONE...to join the corporate office for a Christmas party on Saturday night (adults-dinner-no mouth's to feed-what's that?)....we fly home Sunday....I hope we all survive...a bit nervous....will post when I return!
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Hudson Tyler
Our sweet angel!