Updated for those who know I love my brother with Down's Syndrome

Edited to add in an update at the bottom of the post

Lance, Mom and my Dad's sister

Twice I have written about my brother Lance on this blog.

http://echo-echosvoice.blogspot.com/2013/07/my-brother-is-so-up-about-his-downs.html

on this post which begins by telling about the other post

My Brother is so Up about his Down's Syndrome

Lance and Our Grandmother's Brother

Once I was 12 years old and my Mom had a baby and my world changed. Prior to his birth we had never even heard of the children, called "mongoloid" at that time in our lives, so we thought his "condition" was a "tragedy" which would make his life painfully difficult. We already loved him enough to not be thinking about how it would change us, and we'd never have imagined the joy it has brought.

I wrote about Lance earlier in a post here

http://echo-echosvoice.blogspot.com/2011/10/my-brother-has-downs-syndrome-and-i.html

My family visiting just after Greg and I were married in 1984

But now I have to write that things are not going smoothly for my hero,  A couple years ago Lance and my Mom had to leave their home in Wyoming to move to Virginia to live with our other brother, Brett.  Brett is between Lance and I in age and has been amazing at stepping up to make a home when my Mom began to suffer from memory problems and confusion that kept her from doing necessary things like taking her diabetic blood sugar pills, or paying the phone bill.  At first the depth of her problems were camouflaged by how competent Lance is.  He kept her attending their daily and weekly routines,

 "Time for work, Mom."  

"Dinnertime" 

"It is Wednesday, we have Bingo tonight."

but the things Lance didn't know about, he couldn't remember for her.

So Lance and Mom now live 3,000 miles from me, and I don't see them much.  The fact of expense and time and work and kids have all given me excuses to think a phone call and letter and occasional package were all I could do at the moment.  Then yesterday afternoon I  got a call from Brett, and he was in tears, saying, "I'm not calling with good news." so I assumed it was Mom, and was stunned when he said, "it's Lance." I guess several people in Brett's house have been sick with the flu, so they thought that was what was going on with Lance, but out of the blue, getting ready for a shower, he collapsed and needed an ambulance and is now in Valley Medical, on IV and antibiotics and getting MRI and CAT scans and they do not know what is wrong, but the Dr. shook his head at Brett and said, "This is life threatening."

Lance driving to feed the animals on our brother's home ranch

a couple hours later Brett texted me: "they found a football size fluid in his abdomen. They still do not know what is wrong but that is what we do know. He is so sick."

Then I thought we were losing him. Brett sounded totally distraught in his next call, he said in the last hour he's gone really far down hill and there is internal bleeding, and fluid filling his abdomen and they are putting him on life support with a ventilation tube. Brett has been told he can only stay in the room with him until 10 PM eastern time and then has to move out to waiting room.

But by 10 they knew Lance would not survive the night and rushed him in for exploratory surgery. He came out of surgery around midnight, and they had found his bladder blocked and holding 800 ccs of urine when a normal adult male would be uncomfortable with >300 ccs . They cleaned out the infection and feel positive that he has a chance to survive now but they still don't have all the issues figured out.

the last bit that I know came in this morning

Ok, 9 AM here Noon, where Brett and Lance are. Brett just left Lance's room to go get some food and called to tell me what he knows. Lance is awake and giving the thumbs up when asked how he feels, but can't talk as he still has a ventilator tube breathing for him. They know the infection started in the kidneys or urinary track somewhere, but are not sure exactly how or what it is. They are giving Lance a ton of broad spectrum antibiotics and keeping him hydrated and on pain medicine so he is drowsy and still going to be in ICU for quite a long time, maybe weeks. No flowers are allowed in ICU but cards can be sent. 

Lance Miller /PO box 865/ Middleburg, VA 20118

One thing I need to add here is that my earlier blogs mention the hideously cruel treatment Lance faced from medical "Professionals" in the first years of his life.  That has not been the case here.  Brett says the Dr.s and nurses have gone out of their way to explain that they have friends and family members with Down's Syndrome.  Higher than the average population even because many medical people wait until they are older to have children and that increases the risk.  Lance was born in 1975, and is turning 40 in October this year, God and the wisdom of these professionals willing. One thing I know with absolute certainty, is the attitude of the world toward these people and their extra chromosome has changed in those 40 years, and the love and compassion coming back to him now, is a reflection of who he always has been.

Prayers welcome of course.

Lance and I in Virginia, July 2013

Mom and Lance at the Smithsonian Museum of the American Indian

With cousins at Thermopiles, Wyoming

Riding Red Devil at Hell's a roaring outfitters

http://www.hellsaroarinoutfitters.com/about-us/

On a trip to build homes in Santiago Atitlan in Guatemala

Latest Lance Miller update from Brett on Sept. 2 at 6AM


"Lance has not been making the improvements necessary to consider him on the mend quite yet.  He will be going in today for a second surgery.  The good news here is this surgery is solution oriented.  They have found the source of urine leakage into his abdomen and will be placing a tube from kidney to bladder. Lance is still very, very sick.  His white blood cell count is 4 to 5 times that of an average person who is very sick.  I believe he will come through all of this and be back to terrorizing the local restaurants very soon."

Team Lance Miller update: 9/02/2015 12:15 from Brett 

Lance's surgery is postponed for at least today. They are giving him some more time to heal and get a bit healthier before performing surgery again. This surgery is necessary but not an emergency this time. Lance looks good and is getting back to his usual sassy self but gestures that he is happy to be in the hospital getting better. Leaving him rest now. He had 12 IV bags running earlier today.

9/4/15

My phone was down with the rest of a large part of the Northernmost of CA on the third so I didn't get the update until today when our brother got through to say he had no real news. Just rest and recovery in the ICU yesterday and that will probably continue today. Today's also our Dad's Birthday and I still have to remember that with a sad little smile because even though I've been missing him for 18 years, I'm really glad he was born. Happy Birthday, Paul Miller.

Last on 9/07/2015
Lance is off life support and down from 12 IV lines to one.  He has been taken out of the ICU and allowed to drink and may have his follow up surgery for repairing the leak between Kidney and Bladder on Tuesday

Autobiographical Challenge: Days 17 & 18

Teaching

I love teaching. But I don't have a lot of pictures that I feel Ok putting on-line. If the pictures are recent I don't want to use them, and as a special Education teacher, I don't want any that might label a particular child as being part of my Special Education Program. This is from a year that was difficult in many ways. I had two toddlers, and my Dad was diagnosed with esophageal cancer in April of 1996 and Died on Feb. 1, 1997. Also the schools were overcrowded and the principal had decided that making my classroom open up and also have Mrs. Horn's kindergarten in the room with us, was a great idea. It was loud and rowdy with always some student throwing objects or having explosive temper tantrums, and it was hard to communicate effectively while the room was filled with children needing attention. My principal was frustrated that I took a week off three times during that year to fly to Wyoming to my parents home, and when he decided to combine the rooms, he gave two other teachers substitutes to come into my classroom and sort my supplies to make room for the new room, without telling me until I had started class that day, when he brought them in and told them to do whatever they needed in the cupboards. He also made sure to transfer me to a middle school Severely Emotionally Disturbed Classroom when I came back the following year after 10 years in preschool. And he sent multiple copies of every memo about my desk being disorganized or my lesson plans incomplete or . . . on and on.

Needless to say, I couldn't stand that man, but fortunately I haven't seen him for years. As always, the good part of teaching was the time spent with kids, and in spite of the way we were thrown together, Mrs. Horn and I had many good months with this group of children and our assistants. We did a lot of art and field trips and having themselves immersed in a room of "Regular Children" stressed my kids but also stretched them.

I think I never quite recovered from this year. I took the next year off to stay home with my boys and then my husband took the year after that off. then I quit being a full time teacher and have substituted ever since, although subbing and writing has been wonderful and allowed me to spend a lot of time being Mom, as the boys were growing up, I know financially we would be in a much more secure place if I hadn't stopped teaching full time. I don't regret the choice I made, but I regret making it out of exhaustion and harassment instead of out of confidence and a plan.

April 1994

Because I had gone through menopause at 20, like my mother did when she had me at 24, I knew I couldn't get pregnant, but 10 years after we got Married, we managed to adopt a 14 hour old baby boy. When the adoption agency called to ask if we would be interested in a newborn, we said Yes, but when is the birth Mother due, and they said

Two Weeks Ago.

So then we had our son and it was instant love, and every moment revolved round how lucky and happy we were. And six months flew past, and we were to finalize the adoption in front of a judge but first we needed a physical for the baby to prove that he was thriving in our care. The Dr. asked how I was doing and I mentioned that I was afraid I might have breast cancer because they HURT!!!

"No," he reassured me, "breast cancer usually doesn't hurt. Go pee in a cup."

Then "Think Positive" and 18 days after my son's birthday, his baby brother was born. Look at this picture. I love it because it clearly shows, what we tend to miss. It shows how fast a baby changes between birth and 1 year old.

The day I went to the Dr. (17 days after my oldest turned 1) complaining of back pain, and figuring with 6 weeks to go I might be needing bed rest, the oldest son also had a fever and was demanding being held even more. instead of bed rest, I ended up in an ambulance to a hospital 127 miles away and my 1 year old was at the daycare Grandmas home. I was sick with HELLP syndrome but din't realize how deadly it could be, Even when I was waking up from the emergency C-section all I could think of was my feverish, 1 year old 127 miles away from me and his Daddy. I came out of the general anesthesia sobbing, "I want my Baby!"

Not surprising in a woman who has a newborn in the NICU but when the Dr. and nurses tried to reassure me, "Your baby is doing great. He's on oxygen and in an incubator and in the nursery."

I just screamed, with tears pouring down, "Not That Baby You Idiots! I want MY baby!"

the next day my husband drove the 250 miles round trip to bring back the toddler and I still hadn't been allowed to leave my recovery room to see my newborn. When the 1 year old and my husband came in, the boy took one look at his Mom, and had totally been missing me too. He sobbed "Mommy" and flew across the floor, climbed up the bed, threw his arms around my neck, kissed my cheek

and then, the only time in his life
delivered a punishment for having abandoned him.

He turned his head and bit my shoulder hard enough I still have the scar - then hugged me like he'd never let go

There was however never sibling rivalry, he was a proud, loving helpful big brother from the first moment they met.