Messages By: jnokleby

This should not just be for summer, but for life.  Most of us upset with this Kelly guy have lived what his wife struggled with.  Life is what we want, a good life.  This Kelly is worse than a selfish, self centered moron, he is just evil.  He didn't just happen into her life within the last week.  He lived in the same household as she struggled to get where she is.  "But she promised" doesn't cut it.  I hope it all comes back to haunt him for not supporting her. PERIOD.  Maybe the weight she lost will be found by him, let the tables be turned.

I was  not the skinny-mini through my life, I was the sick kid--did not know why till adulthood.  But food was never the center point, either.  I have a younger brother with Prader Willi (eating disease), so weight issues have been part of a lifetime as well as education (I am 51, he is 48.)

At 20 I was still 115, then with new meds due to ?? DX, I began the first 15-20 gain.  Constant pain is part of my life.  But I accepted the 140#.  Now I have crept up to 175 and feel as if I am bursting at the seams.  None the less my clothes feel tight, my skin is tight.  Genetics gave me a small frame and I am 5'5".

I am a good cook/baker, but have always been food conscious and ate responsible--conviencing myself that the "weight gaining foods, etc were BAD foods I learned to dislike".  So I AM a fussy eater.  Which then makes my weight gain hard to understand.  Food is not an important issue in my life.  I have had to learn to keep some schedule to eating--newbie diabetic--learned to carb count.  When all else fails and I get hungry, I take the lettuce out.  Keeping a food diary doesn't give much for clues.  Knowing which foods are higher carbs, fats, etc. I can avoid them.  So, toothpicks, water and lettuce are high on my grocery list. 

Hubby can't understand why I don't want to go out to eat--if we do, why don't I order this or that--used to be favorite.  I have almost paranoid of how the food was fixed--I have concerns for my food origins, eat the healthiest, use olive oil, lofat, lo cholesterol, etc.  Deserts are a word in the dictionary for the most part.  I eat small meals, am a slow eater.  I can take those favorite foods of the past and fix them at home, not deep-fried, etc.  You feel like things have to be explained when you ask for your food to be steamed, grilled, when it is NOT the menu item.  Some places won't fix it your way, unless you are at the fast food joint.  Just this past Saturday, I stopped at Arby's for the needed roast sandwich, sans all fixings.  Gal behind the counter asked if I wanted ------ and I said this was all I was allowed to eat, carb counting, so she said--You'll need a cup for your water!  I didn't have to ask.  She said her young daughter is a diabetic and knew by how I ordered I maybe was as well.

So I feel my age, my hormones, migraines, my hypothyroidism, my fibromyalgia, raynauds, diabetes, cholesterol issues are part of my problem.  Estrogen or lack of deposited the fat on the belly in such a short few months. 
So I ask, if my plate is this full, why add something else.  My skin feels like it is going to burst. 
I am a distance swimmer.  Since Sep 05 I have done 60 miles.  Total since Sept 04, 160 miles.  I don't always have access to a pool daily, but I try for 3 x week.  A mile usually takes me 1 hr. I have done water exercise since 1989, medical reasons.  So it was my biggest life change.  I don't let many things stop me from getting there (unless I have a flare.)  Exercise makes may issues less painful and allows me to move more. Getting out of bed and walking sometimes is hard to accomplish. 
I don't feel as if my doctors really understand how hard it is to deal with everything, come see me in 2 months---do your best. 
As a plus--I will get in a swim suit, don't want an audience in trying them on.  Find a brand and style, color, stick with it.  I have used the Carol Wior since 1989.  Expensive but I love them.  Makes me feel good, makes me look good.  I use public swimming pools.  My fellow pool users during water exercise time are in similar shape, so I don't think "what do I look like".  Even whales love the water! 
I have a new baby granddaughter 2 weeks old, and along with her 3 yr old sister (which I daycare) give me reasons to write this, as well as to keep looking for answers.
GOD GIVE US ALL STRENGTH TO CONTINUE!
Peace,  Joyce in Minnesota

 I have used this brand since 1989 and I DO feel good in it.  JC Penny's has them as well as online to Carol Wior.  The double suiting is their special draw.  I have tested alot of other brands.

I am a swimmer and can get a couple years out of this product rather than 2-3 months  out of a $40-60 suit.  AND I have found them on EBAY, new for $20 or so.  I like styles that are for swimming rather than sitting on a beach--find the tank scoop neck keeps me "in" when back stroking/breast stroking.
Peace--Joyce, MN

I got mine all on Ebay for a couple of bucks apiece.  There are those who read them, and move them on.  Thank you to those who do!  Otherwise the public libaries usually have copies or can get them as well.
peace~~Joyce

I have used the Carol Wior since 1989, JC Penny's carried them and still have a small selection. Herbergers also carries it (upper Midwest stores).  I have also gone online to her suits as well as EBAY  has them, and at affordable prices (my last $130 suit cost me $20 total.)  I know which styles I like so it is easier for me to buy this way.  My SS last me a couple years of swimming in clorine pools.  I have bought cheaper suits that last a couple months.  So the trade off is there.  I feel GOOD with the CW suit. 
Peace~~Joyce

This is sad.  The pain deepens when we CHOOSE a child through adoption that "has flaws" that we did not see.  When we give birth to this situation, our body's hormones help us to switch gears.  And automatically there is the help out there.  When an adopted child is dxed with issues, they don't have the parents with undying committment.  It can be learned, so don't think all is a lost cause.  We as  adult humans have learned to adapt very well to our changing world.  We have resources to reach out to, to gain knowledge, simply this website and Dr Phil's show is one committment to that.  The children that are brought from other points of the world came into it without ever expecting anything but nothing.  That is why adoptions happen.  I would not want to the the parent of a child I could not care for, nor one who had to give up my child to someone else to care for UNLESS I knew my child was going to be in a better place and still be loved.  My heart aches for the mother who let her child become adopted by someone else.  This is a maternal heart speaking. 

That aside, don't sit and cry in your cheerios.  Time for you to learn to put yourself last, your child and special needs first.  Whether or not your child was born to you or adopted.  Get the pity party done and get busy.  This is a life long committment.  And we are here to help.

My story is a personal one, making a long story short, my special needs brother was 3 years younger than me.  My mom was told in the hospital by a nurse who came in crying.  There is something wrong with your baby.  And they did not know what.  At 9 days old he was sent by car to Rochester Mayo Clinic to find out answers.  A friend who was an RN went with.  The doctors thought it was a lost cause. This was the beginning of the fight of Alan's life.  As back on those days institutionalized babies, children was the normal. NOT in our family.  Alan came back with no dx.  Flacidity, feeding on a brek bottle due to no sucking ability.  Failure to thrive could have been used.  At age 3 months a TV program talked about cerebral palsy.  AHA!  Symptoms that described my brother!  The Sister Kenny Institute in Minneapolis had a pilot clinic in Aberdeen SD.  They got Alan to that.  Remember, this was back when no benefits, no holiday pay, thin paychecks were the norm.  Families got you through.  For the first 13 years of Alan's life, he had the dx of CP.  WOW!  All of us kids did his PT, OT, feeding, changing, all to help our parents.  Grandparents staying for days on end to help (2 bedroom house, 7 family members), all sorts of people coming, calling, helping.  His public school education stopped at 1st grade, he was able to go 12 miles from home to a special needs school.  Eventually the school district developed the best special ed dept in SD.  No more daily driving anywhere!  Alan could read, write, etc anything the rest of us could.  We did not allow him to be as special as he started life out.  He was one of us. 

Age 16. it was time to find a sheltered workshop and school with training.  It broke our hearts to have him hundreds of miles away BUT he loved it.  He lived in foster homes, had foster famlies. Had responsibilites and knew he was loved.  By age 13, Alan was redxed as Prader Willi Syndrome--the eating disease with mild retardation.  The PW and CP are identical in early years.  PW has the increase of weight, eating, etc. A whole new story in itself.  As time went on he lived in many different states and schools.  Finally we got him moved to Willmar MN (10 years ago) with a program that got him is own house, his own job, his own bills, his own housemates, his own friends, church.  Arriving on the "practically normal" front also came other issues, such as puberty in his 30s-40s.  So that got changed too. 

Finally, my brother was as independent as he was going to be. He loved it.  WE loved it.  Networking gets you to these places.  Yes, there were days you wondered where you were going,  NEVER I wish he were not born.  NEVER, NEVER NEVER. 

Having his diet controlled by carb counting in a diabetic diet made so much sense.  It was the first diet that worked.  Last June Alan was feeling cold, crabby, and so we felt maybe he needed more carbs.  His house mom took him to the doctor, did some labs, which led to an CT, which led to a family meeting.  This child, our brother, had cancer!  Not 1 place, but 4 different kinds/places.  He was cared for, saw doctors, had a plan, etc.  This was something we did not see coming, EVER!  How do you take care of this now?  How do you make it worK?  How can you make it go away? 

Alan's words in the doctor's office made the choice difficult, yet we understood.  His voice, the Lord's words,  I do not want anything done, I do not want to be sick, I do not want medicines.  Leave me alone, please.  The doctor felt he understood (here is a person who had guardianship from the day he was born, we did the best 100% of the time) and we needed to follow Alan's request.  Do nothing.  Knowing what we know in our society of fix everything, it was very difficult to accept doing nothing.  But the Lord got us through.

We entered him into hospice immediately to help his house staff with what needs we could.  He also requested NO HOSPITAL, I want to live in my house.  We lived every day with him to the fullest. With many friends, family, pastors, there was always someone filling his day.  His normal schedule continued, if he felt tired, he would adjust it.

His main concern was his birthday in February 2008 he would be 50.  He wanted to be 50 like his 3 sisters.  That meant he got old.  So in August 2007, (49 1/2 yrs old) we had a 50th birthday party for him, he loved it, people came from all over to celebrate it. It was his birthday, our last time before his funeral to celebrate his life.   2 weeks later we had his funeral.  And we celebrated it the way Alan would have wanted his party to have been, balloons, tears, stories, love shared.  7 weeks was such a long time for him, a split second for us.

So please, there is help for those in need.  Don't give up.  Just cause today may be a 'bad' one, the future may be full of rainbows and balloons. 

(In Feb 2008, on his birthday, I made his favorite cinnamon rolls, poured up 2 gobletsof sparkling cider, toasted him with love, and blew out his candles, said I loved him forever and said it was time to go to bed.)

From Alan's loving sister, Joyce

Blessings to you and a gentle hug.

I posted earlier today, it is not on site yet. (Concerning our special person.)

I don't think going to a spa retreat will "help" mom, as her brain will be on overdrive thinking of all the stuff being undone, not getting done, etc at home while she is there.  You know, we can't shut them off for an instant (one of God's little jokes?).  I, too,was raised on reading Erma Bombeck, I used that (besides my Bible) as a basis for raising MY 3 sons.  And now 2 granddaughters often.  Thing is, with family members having special needs, you need more than a day out to take the pressure off. You need permanent resources.  I too, dream of days my home would look like HGTV, but am so glad I have had experienced what I have, it has made me the person I am.  There are 'end of the rope days' that I know will be better after the sun sets and rises again.  I have a permanent health condition as well that does not sit on the back burner. Yet, I try not to make the day about me.  

Apparently mom in question does not have the support from her family, friends.  She then needs to step outside of that comfort zone to apply for what her special needs family member needs. They cannot.  We are put on this earth to take care of each other.  When that stops, so does the world we want to live in.

Words of advice.  Tell your daughter not to allow any phone calls to her minor children.  She must protect them at all cost.

If the father only calls when high, this is not a person anyone should be talking to. Document the date, time, demenor and then keep for the attorney dealing with the divorce.  The judge will take care of this.  Also, if he becomes jailed, you will see some child support from his jail/prison earnings.  Once the system gets a hold of him, he will stay in the system and on the child support roster until they are 18 yrs old. 

The damage of the children hearing these promises from an absent parent is worse than NOT hearing from them at all.  Discuss with the children that they will not be allowed to talk with him when he is high or drunk.  That what ever he tells them will not be carried through as a promise when he is in this condition. Unless their father gets the help he needs, they need to understand that they will need to be adults to contact him on their own.  Choose your words carefully, talk with your pastor, an attorney, public health provider, etc.  PROTECT THE CHILDREN.

 

I need to respond the dad issue.  I posted earlier, before seeing the show. My point still stands, I need to address the father.  Coming home from AWAY to work, spending minimal time with the child makes his authority of "not a hard child to take care of" bogus.  GIve the father the same 24/7/365 time frame and the mom the reversal time away from home and the dad would be writing.  The cares for the child PLUS the home life--the normal things you and I do and take for granted.  I am an older sibling of a special needs child--born in the 50s.  You had family to pitch in and share your needs NOW. But with the isolation the mom feels is not a good mental health living for anyone.

THe father is selfish is he thinks the mom's health will outlast her son's.  Or stupid.  It was sad when my parents (really my mom) said this was it, time to find another place for little brother. My story previous showed it was the best move ever. My young brother was dxed with multiple kinds of cancer last July, died in August. My father had to come to realize his guilt of not being there as much as he could had to be let go of.  And to have to say goodbye as my little brother took his last breath.  We loved our brother.  Letting him go to live in a group home was the best gift we could have given him. He had a normal as possible life with a happy family who came to his home to visit. He had a social life that was so full, sometimes he told us not to come. 

There are horror stories of hellholes, but the ratio of fantastic places is much higher. "Dumping" your child is different than letting them have a life. Our society has more concerns about animal care than our special needs children. (I am with HS).  Letting a special needs live where they will have the care and fullest life is the most important.  There are programs available nation wide--I kid you not--so don't waste any time.

And you all out there without  children of special needs--volunteer at functions,special olympics, etc.  The hug and smile is so much worth it.  Heck-help a mom with a special needs child.  I have done respite care for a DS little girl who broadened my horizon completely. 

Bless you all. A mom with normal children and grandchildren--grateful for my special needs brother for 50 years.  Joyce