I just got off the phone with Paul...He has been in Hawaii, on business, since Monday and won't be home till Thursday....10 days....a good trial run of our future. Before he left we talked, thinking since he was being sent to Hawaii for 10 days, that there should be no sense of urgency to have to be out in Vegas Feb. 1
He just told me he got a call yesterday, that they need/want him in the Corporate office (Vegas) asap...when is he going to get there? On top of that, he comes home Thursday (14th) and has been told to fly to Vegas Monday and will be gone that whole week thru Friday.
The following week, he will need to drive out there.
He just told me all of this.
I guess it is hitting me hard.....
because it is the weekend.....
our family time..... like most families, and it just feels a bit weird and a bit lonely here without him.
Knowing this is going to be our "normal" feels like a lump in my throat right now...
wasn't expecting to feel this way today...taken me by surprise...
hearing his voice, just made me really miss him.
I actually think this time.....the kids are doing way better than I am........altho they don't know what lies ahead......that this is the beginning of our "February".....it looks like the 2nd month of the year is going to make it's way much quicker than expected for our family.
Not sure why I am feeling so weak in all of this...right now.
Typically...I am a pretty strong girl....
not needy....
very independent.....
self sufficient....(except for using "man tools" or putting things together, or killing spiders or any creepy crawly's for that matter...and the outdoor-maintenance stuff...all my husbands job!!!)
Time to look into the big browns...and know I am doing the right thing....for the other guy in my life who makes me heart-broken on a daily basis, with his illness.
Think I will go dive into my kids right now...probably the best medicine for this broken heart!
Saturday, January 9, 2010
Thursday, January 7, 2010
They just don't get it....
It's the "look"....that's how I know they don't get it.
"They"....well, you know who you are...and honestly, many of them probably don't even read my blog....so many will continue, to not get it.
The circumstances in our lives has brought about some huge decisions that have had to be made...it has been far from easy....so much to consider.....and simply....scary....in every way. I blogged a bit about it a few months ago...it weighs heavy....as February slowly creeps up.....and that is the month my husband is suppose to be living in LasVegas.....to work....and live.....and it sucks....and it makes me uneasy, and thinking about it is simply overwhelming.
BUT.......the same is to be said if we were heading with him.
I really think many don't "get" why I can't move Hudson there.
You See.....
Mitochondrial Disease is not like cancer....where you can find an oncologist in any state, in every city, who knows about this disease and how to tackle it......it's not like heart disease, Diabetes and many other diseases....where there has been major funding in research, and treatmnets and medications to help treat the disease......it doesn't matter where you live, there are docotors who know and specialize in common, well-known illnesses such as these.
Mitochondrial Disease is considered a "rare" disease.
Many times in conversations, I am asked "what is mitochondrial disease?"
Society doesn't know about this one......and the few who do, either are in the medical field or know someone suffering from it...........
that is......unless you are directly affected by it.......or watch your child suffer daily at the hands of this disease.
The only thing I can say......to make people understand.......to wipe the bewilderment off their face when they hear we will try and keep 2 homes, that the kids and I will be here through the entire school year while Paul comes home every other weekend to be with his family.........why we will spend summer and school breaks at our "2nd home".................................
Because..........If we moved our lives full time to Vegas.........
and God forbid something happened to Hudson.........
and he was no longer here................
I could never forgive myself.
I couldn't live with that.
So.....if that's not quite sinking in, then maybe the following will.
Some info on Hudson's Neuro on one of the mito web sites.
Just a quick reminder......to date......Hudson's illness began with epileptic seizures at 4 months old....ALL of his tests have come back normal, including his 2nd MRI/MRS in late summer 2009. Other than his abnormal EEG showing epileptic spasms, we had no cause until we got his muscle biopsy (Nov. 2008) reporting electron transport chain deficiency.....this is really all we know as far as Hudson and this disease. That's it!
"They"....well, you know who you are...and honestly, many of them probably don't even read my blog....so many will continue, to not get it.
The circumstances in our lives has brought about some huge decisions that have had to be made...it has been far from easy....so much to consider.....and simply....scary....in every way. I blogged a bit about it a few months ago...it weighs heavy....as February slowly creeps up.....and that is the month my husband is suppose to be living in LasVegas.....to work....and live.....and it sucks....and it makes me uneasy, and thinking about it is simply overwhelming.
BUT.......the same is to be said if we were heading with him.
I really think many don't "get" why I can't move Hudson there.
You See.....
Mitochondrial Disease is not like cancer....where you can find an oncologist in any state, in every city, who knows about this disease and how to tackle it......it's not like heart disease, Diabetes and many other diseases....where there has been major funding in research, and treatmnets and medications to help treat the disease......it doesn't matter where you live, there are docotors who know and specialize in common, well-known illnesses such as these.
Mitochondrial Disease is considered a "rare" disease.
Many times in conversations, I am asked "what is mitochondrial disease?"
Society doesn't know about this one......and the few who do, either are in the medical field or know someone suffering from it...........
that is......unless you are directly affected by it.......or watch your child suffer daily at the hands of this disease.
The only thing I can say......to make people understand.......to wipe the bewilderment off their face when they hear we will try and keep 2 homes, that the kids and I will be here through the entire school year while Paul comes home every other weekend to be with his family.........why we will spend summer and school breaks at our "2nd home".................................
Because..........If we moved our lives full time to Vegas.........
and God forbid something happened to Hudson.........
and he was no longer here................
I could never forgive myself.
I couldn't live with that.
So.....if that's not quite sinking in, then maybe the following will.
Some info on Hudson's Neuro on one of the mito web sites.
Just a quick reminder......to date......Hudson's illness began with epileptic seizures at 4 months old....ALL of his tests have come back normal, including his 2nd MRI/MRS in late summer 2009. Other than his abnormal EEG showing epileptic spasms, we had no cause until we got his muscle biopsy (Nov. 2008) reporting electron transport chain deficiency.....this is really all we know as far as Hudson and this disease. That's it!
Background on Dr. Russell Saneto, D.O., Ph.D., Assistant Professor
Families that are dealing with mitochondrial disease are very fortunate to have one of the leading mitochondrial specialists in the country right here in Seattle . Dr. Russell Saneto is part of the University of Washington 's School of Medicine ; Pediatrics Department and is part of the Division of Neurology that is based at Seattle Children's and Regional Medical Center . Dr. Saneto's clinical interests are in the areas of epilepsy, EEG-video telemetry and mitochondrial disorders. His area of focus for research is the detection and treatment of pediatric epilepsies caused by mitochondrial disease. Dr. Saneto is boarded in Pediatrics by the American Board of Pediatrics and in Neurology, with special emphasis in Child Neurology by the American Board of Psychiatry and Neurology.
Prior to coming to Seattle , Dr. Saneto did his pediatric residency, pediatric neurology fellowship and pediatric epilepsy fellowship at the Cleveland Clinic after completing medical school in three years and graduating from Des Moines University, School of Osteopathic Medicine and Health Sciences in 1994.
Prior to going to medical school Dr. Saneto received his PhD in human biochemical genetics at the University of Texas and did a postdoctoral fellowship in developmental neurobiology at UCLA. He also spent time as an assistant professor in Cell Biology and Anatomy at Oregon Health Sciences University.
Dr. Saneto joined Seattle Children's and the University Of Washington School Of Medicine in the fall of 2001 and he is one of less than 50 doctors around the country that is focusing on mitochondrial disease and is the only doctor focusing on pediatric epilepsy associated with mitochondrial disease . Dr. Saneto became interested in mitochondrial disease while a pediatric neurology fellow at the Cleveland Clinic as his mentor (Dr. Bruce Cohen) was interested in this disorder.
Dr. Saneto has a long-term vision "of Seattle and Seattle Children's becoming a Center of Excellence for the Northwest in regards to mitochondrial patient care and research." Please help make that vision a reality!
For additional information on The University of Washington School of Medicine Neurology program please go to www.peds.washington.edu/divisions/neuro/neuro.asp.
For additional information on Seattle Children's neurology program please go to Neurology | Seattle Children's.
To contact Dr. Saneto directly please email him at russ.saneto@seattlechildrens.org
Please tell me YOU GET IT!?!?!?!?
Monday, January 4, 2010
The blue bin
I despise moments like this one....that happened to me today, as I was cleaning.
I am in a cleaning mood, I guess the new year makes me want to purge and tidy up.
Anyways, we have a ton of storage bins we keep, we use them for all kinds of things...holiday decor, kids clothes, memories, etc. I was cleaning a section in the garage and noticed some bins of clothes, that were once Hunter's and one day would be Hudson's.....they had some room inside...so I decided to condense boxes. As I was doing this I opened the bottom bin of the stack. It was solid blue, so I couldn't see what was in the bin. As I lifted the cover, I felt my heart race, tears well, and this reflex of just wanting to throw the cover and shove the bin away, far away.
I remember putting this bin together, with Hunter and Hailey's help. I was very pregnant at the time, and we were going through the kids toys, determining what would be the perfect toys to keep for Hudson. In it was the "popcorn pusher" and the musical pusher too...you know the one the kids toddle around the house with...it has the the long handle, and the round dome with all the balls that pop. The other is oval and rolls and plays music as they push. There was some "Thomas the Train" stuff, the "Little People" Noah's Ark, and some other stuff the kids really enjoyed at Hudson's age. I remember the excitement the kids and I felt as we packaged this up for him, dreaming about who he would be and the kids talking about how they would teach him about all of these toys, and how they played with them.
I hated coming across that box today. Another slap in the face by reality.
Another thing I had a hard time with as I was condensing....this may sound weird to those who don't understand, but....Hunter's "training underwear"....... they were in the next box that I will go into...... after the next growth spurt Hudson has. A part of me wanted to throw them away, the other part of me couldn't....because...what if that was a sign of me loosing all hope that someday Hudson couldn't be potty trained. I know chances are slim, at least the way things are going with him now...but couldn't that change....if seizures were controlled, if something is out there....waiting for us.....to help him?
I don't know.
I have left the box out. I have decided to see if Hudson's O.T., who is funded by the Elks, can use any of the toys for her case load of kids...or future kids. I will let her go through it on Wednesday.
I just hate returning to the memories....memories of a healthy baby.......only imagined... ....
only in my head through pregnancy, not fathoming he could be anything else but healthy.....I thought.....on May 14, 2007....I was holding a perfectly healthy baby boy....all 10 fingers...all 10 toes....passed all his tests....his ears worked.......everything seemed just fine.
For 3 months...in my mind...here on earth.......healthy.......Hudson would someday play with those toys we stored for him, and would be toddling around in Thomas the Train underpants as we we would potty train....it was short-lived....that idea of a healthy baby boy....I never imagined the next time I would open that blue bin..................
I would only see shattered dreams lying in that box.
I am in a cleaning mood, I guess the new year makes me want to purge and tidy up.
Anyways, we have a ton of storage bins we keep, we use them for all kinds of things...holiday decor, kids clothes, memories, etc. I was cleaning a section in the garage and noticed some bins of clothes, that were once Hunter's and one day would be Hudson's.....they had some room inside...so I decided to condense boxes. As I was doing this I opened the bottom bin of the stack. It was solid blue, so I couldn't see what was in the bin. As I lifted the cover, I felt my heart race, tears well, and this reflex of just wanting to throw the cover and shove the bin away, far away.
I remember putting this bin together, with Hunter and Hailey's help. I was very pregnant at the time, and we were going through the kids toys, determining what would be the perfect toys to keep for Hudson. In it was the "popcorn pusher" and the musical pusher too...you know the one the kids toddle around the house with...it has the the long handle, and the round dome with all the balls that pop. The other is oval and rolls and plays music as they push. There was some "Thomas the Train" stuff, the "Little People" Noah's Ark, and some other stuff the kids really enjoyed at Hudson's age. I remember the excitement the kids and I felt as we packaged this up for him, dreaming about who he would be and the kids talking about how they would teach him about all of these toys, and how they played with them.
I hated coming across that box today. Another slap in the face by reality.
Another thing I had a hard time with as I was condensing....this may sound weird to those who don't understand, but....Hunter's "training underwear"....... they were in the next box that I will go into...... after the next growth spurt Hudson has. A part of me wanted to throw them away, the other part of me couldn't....because...what if that was a sign of me loosing all hope that someday Hudson couldn't be potty trained. I know chances are slim, at least the way things are going with him now...but couldn't that change....if seizures were controlled, if something is out there....waiting for us.....to help him?
I don't know.
I have left the box out. I have decided to see if Hudson's O.T., who is funded by the Elks, can use any of the toys for her case load of kids...or future kids. I will let her go through it on Wednesday.
I just hate returning to the memories....memories of a healthy baby.......only imagined... ....
only in my head through pregnancy, not fathoming he could be anything else but healthy.....I thought.....on May 14, 2007....I was holding a perfectly healthy baby boy....all 10 fingers...all 10 toes....passed all his tests....his ears worked.......everything seemed just fine.
For 3 months...in my mind...here on earth.......healthy.......Hudson would someday play with those toys we stored for him, and would be toddling around in Thomas the Train underpants as we we would potty train....it was short-lived....that idea of a healthy baby boy....I never imagined the next time I would open that blue bin..................
I would only see shattered dreams lying in that box.
Friday, January 1, 2010
Why must a new year start this way?
With everyone still sleeping but Huds and I,I was looking forward to some quiet,snuggle time,just the 2 of us. After getting him fed and diaper changed, we sneak downstairs to the couch,with a big blanket over us, house still peaceful, and settle in for something I cherish...a still,quiet moment...just me and my guy.
Hudson was contently holding my hand when suddenly the grip become very tight,as his body was thrown into a tonic seizure...haven't seen one since the hospital...after the grip of his tonic looses its strength,Hudson passes out in my arms...HAPPY NEW YEAR TO US.
Hudson was contently holding my hand when suddenly the grip become very tight,as his body was thrown into a tonic seizure...haven't seen one since the hospital...after the grip of his tonic looses its strength,Hudson passes out in my arms...HAPPY NEW YEAR TO US.
Subscribe to:
Posts (Atom)
Hudson Tyler
Our sweet angel!