7 years

[Rapid_Roy]

7 years is a long time. A lot can happen in 7 years. You could be riding around the world for 7 years, and it would be a great adventure. You could write a novel, or learn a new trade, or possibly even understand how to work those stupid computers. :ha You could go from rags to riches, or the other way around.
In that time, there are infinite possibilities, some good, some bad.

7 years ago today, at 3 am, my wife was driving our almost 5 year old daughter to Children's Hospital. She was later diagnosed with a form of Encephalitis which turned out to be West Nile. It slowly took most of her faculties, while we helplessly watched.

It's kind of like how many remembered exactly what they were doing when John Kennedy, or even John Lennon were assassinated. I can remember many details from that day,for the same reasons. The echos are still there, from the many strong emotions of those 2 weeks. On this anniversary, we choose to celebrate that we have had 7 more years that we almost may not have had.:bow

It has turned from a glum acknowledgment to a milestone reached. It is also an indicator of hope of what 7 more years might bring. A bittersweet day indeed, but I chose to focus on where we are going, while still remembering how far we have come. You go where you look. :ha

:wave

[Voni]

positivity!

You have so impressed me with how you roll with the punches.

Thanks for bringing us along.

You're a great role model.

Voni
sMiling

[womanridge]

Throwing hugs your way, Roy.:hug:hug:hug:hug

[Holly]

Hang in their Roy. Remember Rachael's smiles when she sees you. :heart

Holly

[jobee58]

You made me think of Neil Peart's Ghost Rider. I think what you wrote actually resonates on a deeper level. I thank you.

[KGT1200]

yo Roy.

Seven years of love is a whole lotta love. Seven more brings who knows? The possibilities are unlimited, and Roy, the glass is, at minimum half full!

[Rapid_Roy]

yo Roy.

Seven years of love is a whole lotta love. Seven more brings who knows? The possibilities are unlimited, and Roy, the glass is, at minimum half full!

Thank you all. :wave
Dale, if I may George Carlin-ize that expression, I think the glass is purple. :ha

[Statdawg]

Mr and Mrs Roy

IMO you both are doing well and I can only relate to your plight as an observer. A close friend of mine has a daughter who had a cerebral infarct at birth and today she is a 32 year old with a 7 year old mentality. Her parents made sacrifices that are not normal to the majority of the population, they moved to an area that benefited the care of their daughter not their career, they both worked as they could trying to establish a legacy trust fund so she would be taken care of for the rest of her life, and after they are gone along with the 401K. So no vacation, additional homes, rallies, and motorcycles for them. Their careers were impacted because the father had opportunities to move to high compensated positions in the world working for IDS but he stayed local so his daughter would be provided for, to be near to her care and extended family. It must have been disheartening for him to train someone that would be his boss a few years later.

Both parents decided to keep her at home despite the call to put her away, they flexed their work schedules to deal with health care, dealt with special schools and now flex work to deal with getting her to a employment that she can do, sadly only mail stuffing in a controlled environment with short bus transportation to and from. Even the grandmother sacrificed her singlehood and cushy Florida retirement to assist her family and moved in. Today the grandmother is in her late 80's and in the mix of things. And lets not forget about their friends within the circle being the sounding board for the woe is me going through our wine cellar and cases of beer over the last 32 years, as the caretakers were helping the caretakers. But what are friends for ? To be here to read, listen and say the glass is half full.........hurry its getting room temperature.

7 years is a long time and your positive outlook is inspirational. I am just curious how prevalent is your daughters health crises in your area and is there a local support group that is available to you or could you start one to help others that are on day one ? Where did you go the 5 years before you MOA forum membership for support ? How supportive is your circle of friends and family outside of Beemerdumb ?

Support groups are very good and benefited my extended family over the years. My Uncle had a sudden onset of a blood dyscrasia at age 50 and was a health care crises till his death at 68. My father had a brain bleed on the way to his 33 years with the company retirement dinner in Boston 4 days before Christmas 1981. This incident made him disabled for 18 years the last 9 years being bed ridden at home so if you need to hear the glass is half full just PM me for consultation. We didn't have time to go to a support group because there was limited people to be with dad but my more mobile aunts case was different. To me 7 years is 7 years, and I am happy for you to have the drive and conviction to your daughters care in this day and age of dysfunctional families and work environments. And in your case all those suffering from the lack of fruits and vegetables in the upper Midwest diet that surround you.

All the best Roy and if you need a full glass, the whine cellar, the beer supply and tea bags are half full and the door is always fully open. Sorry to throw a few medical terms at you but you have been thrusted into a role not of your choosing and I figure you would know them after 7 years of forced education. But as one of my Utah arse Latter Day Saint friends would say oh its a blessing and a challenge. To me I never had an interest to look at things that way.............where is my purple glass ? Full for us ?

[rik]

Echoes

Milestones

Hope

You inspire.

God Bless You All

[GrafikFeat]

...A bittersweet day indeed, but I chose to focus on where we are going, while still remembering how far we have come. You go where you look.

"Children are the living messages we send to a time we will not see."

~ John W. Whitehead

[Rapid_Roy]

positivity!

You have so impressed me with how you roll with the punches.

Thanks for bringing us along.

You're a great role model.

Voni
sMiling:wave
:heart
You are welcome, and only maybe a role model in some ways. I have a penchant for German motorcycles and food, and I do curse once in a while too.
Oddly, it's mostly while wrenching on said motorcycles, and in German.:blush

Throwing hugs your way, Roy.:hug:hug:hug:hug
Thank you and same to you, Karen. :wave

Hang in their Roy. Remember Rachael's smiles when she sees you. :heart

Holly
Thank you Holly, I do need to think of that once in a while, when I lose perspective. :wave

You made me think of Neil Peart's Ghost Rider. I think what you wrote actually resonates on a deeper level. I thank you.
You are welcome. I may have to check out that book sometime.


yo Roy.

Seven years of love is a whole lotta love. Seven more brings who knows? The possibilities are unlimited, and Roy, the glass is, at minimum half full!
Perspective shapes/changes attitude. Sometimes I lose perspective.
The glass is always full when I am hanging with my buddy Dale. :wave

Echoes

Milestones

Hope

You inspire.

God Bless You All
Thank you. I don't feel I am any Team Hoyt material though.:ha
I hope God does Bless us.....again.
I always tell people I feel like I would have nothing to complain about if she were healthy again. :wave

"Children are the living messages we send to a time we will not see."

~ John W. WhiteheadThank you, I like that. I really do feel that this is the most important thing I have ever done, and I am not sure how I would even go about measuring success.

[Rapid_Roy]

Mr and Mrs Roy

IMO you both are doing well and I can only relate to your plight as an observer. A close friend of mine has a daughter who had a cerebral infarct at birth and today she is a 32 year old with a 7 year old mentality. Her parents made sacrifices that are not normal to the majority of the population, they moved to an area that benefited the care of their daughter not their career, they both worked as they could trying to establish a legacy trust fund so she would be taken care of for the rest of her life, and after they are gone along with the 401K. So no vacation, additional homes, rallies, and motorcycles for them. Their careers were impacted because the father had opportunities to move to high compensated positions in the world working for IDS but he stayed local so his daughter would be provided for, to be near to her care and extended family. It must have been disheartening for him to train someone that would be his boss a few years later.

Both parents decided to keep her at home despite the call to put her away, they flexed their work schedules to deal with health care, dealt with special schools and now flex work to deal with getting her to a employment that she can do, sadly only mail stuffing in a controlled environment with short bus transportation to and from. Even the grandmother sacrificed her singlehood and cushy Florida retirement to assist her family and moved in. Today the grandmother is in her late 80's and in the mix of things. And lets not forget about their friends within the circle being the sounding board for the woe is me going through our wine cellar and cases of beer over the last 32 years, as the caretakers were helping the caretakers. But what are friends for ? To be here to read, listen and say the glass is half full.........hurry its getting room temperature.

7 years is a long time and your positive outlook is inspirational. I am just curious how prevalent is your daughters health crises in your area and is there a local support group that is available to you or could you start one to help others that are on day one ? Where did you go the 5 years before you MOA forum membership for support ? How supportive is your circle of friends and family outside of Beemerdumb ?

Support groups are very good and benefited my extended family over the years. My Uncle had a sudden onset of a blood dyscrasia at age 50 and was a health care crises till his death at 68. My father had a brain bleed on the way to his 33 years with the company retirement dinner in Boston 4 days before Christmas 1981. This incident made him disabled for 18 years the last 9 years being bed ridden at home so if you need to hear the glass is half full just PM me for consultation. We didn't have time to go to a support group because there was limited people to be with dad but my more mobile aunts case was different. To me 7 years is 7 years, and I am happy for you to have the drive and conviction to your daughters care in this day and age of dysfunctional families and work environments. And in your case all those suffering from the lack of fruits and vegetables in the upper Midwest diet that surround you.

All the best Roy and if you need a full glass, the whine cellar, the beer supply and tea bags are half full and the door is always fully open. Sorry to throw a few medical terms at you but you have been thrusted into a role not of your choosing and I figure you would know them after 7 years of forced education. But as one of my Utah arse Latter Day Saint friends would say oh its a blessing and a challenge. To me I never had an interest to look at things that way.............where is my purple glass ? Full for us ?
This was long and deep enough that I felt it warranted a separate reply.

As far as inspiring, you do know what I would have said if given the choice of going through this all or not? :ha

Support has been sporadic from friends, and very strong from family. It was strong from our closest circle of friends at first, but our impression is that on some level it makes them confront a feeling that most parents do no ever even want to consider. That their child could get sick or even die.
I had got done carrying Rachael up some narrow, low headroom stairs from a basement at a friends house, and was asked why I was out of breath. I still care for these people, and I mean this in the nicest way, but they really have no idea sometimes. As her illness progressed, however, support came from everywhere, and surprised us many times.
People started throwing fund raisers, and the Wisconsin BMW Club proved many times over that it has some of the biggest hearts in Wisconsin.
We have made some new friends among some special needs parents, as we all understand what it takes, both to do it and out of you.
My wife had joined some Yahoo groups on line for brain damage and Encephalitis, I suppose my motorcycle forums are one of my own outlets for expressing myself.
As far as starting any group, I suppose we could claim a bit of selfishness. That would take time that we already feel is a luxury, although I would not be adverse to starting one if I felt we needed it.
Brain damage is way too general, and West Nile is way too specific. I suppose there is some caregiver type groups, but we have really become our own support. It has drawn our whole family very close, and has also drawn us closer to some people who really have a capacity for caring. At times, it really makes us feel connected to other people. also, we have taken advantage of the programs that are left after Gov't budget cuts. :ha We just got respite care for 30 hours every 3 months (it's not a huge amount, but we will take what we can get). They will pay for a sitter so we can do something as husband and wife (no, not that, shame on you!) What many people with normal lives take for granted, like the simple acts of shopping together, or working together in the yard, or even just going out for a romantic dinner.
It is fun when you are doing it with someone you love. Alone, not so much.

I am sorry that your family was troubled with such things, and glad support helped out. I guess it's wherever and however you find it in most cases. Sometimes the sources are even surprising. Thank you for the well wishes, and some of the healing laughter I have gotten, just from your posts. Take care.
:wave

[Statdawg]

Personally I always thought local support groups were a waste of time than support. I feel there is hypocrisy, the creation of groups is so the health care organization can say one exists for the look at what we are doing crowd. I just see a grad student typing out a Masters thesis in a dimly lit room claiming research and can't wait to graduate in May. Their logic is lets quickly form a group, write a paper for publication and turn the group over to the members. Or keep it as a risk management project to protect the hospital systems failure of do testing and early intervention. Its patient teaching in an aftermath setting in my mindseye.

Also Infectious disease are marketed as a negative with catch phrases as the ..............Survivors will meet this Tuesday. Is there a status and reward for being a survivor ? Is the label acceptable to family members of those survivors ?

I think you made to right moves Roy and stayed with your close friends and family. Your extended family here have been good to you, the yahoo groups are time effective and informative. I really am glad that you didn't form a support group its bad enough dealing with your own situation and have a normal life with time at a premium. Organizers and observers don't realize the time consumption of taking care of someone at home, the costs involved financially and emotionally trying to have a normal life if there is such a thing. I am glad you can get help to get away every now a then that is important.

All the best Roy, keep the faith and hope. As far as health care no one knows what is going to happen, I see the negative on TV then attend a tech conference and say wow you can do that. There is an optimistic world out there but the individual has to create it which is easier said than done. :thumb

[Rapid_Roy]

Thank you. They always say adventures suck when you are going through them.:ha
We have as good a shot as anybody at happiness, IMO.
:wave