Saturday, November 28, 2015


Sorry I've been so quiet.  I've had some big things going on and I wasn't quite ready to share about it. 

Early last week I had a mammogram.  It was just a regular exam, I had no real concern about it.  I was more concerned about the colonoscopy that I was having on Friday.   Well right before I went in for the colonoscopy I picked up the results from the mammogram..... they found three masses.  So I was doing my best to hold it together for the other procedure.  I got through that, everything was fine....for the most part.  Still some things that are inconclusive but nothing major. 

After reading and rereading the results and looking it up on line, I was pretty confident that it was nothing major.....probably just dense tissue since I'm 50 now.  So I had an ultrasound done the day before Thanksgiving....  I knew when the tech asked me to step to another room to talk to the doctor, that there was a problem. 

I was put in a room with two other ladies who had already spoke with the doctor and were in shock.  We just all were looking at each other like we could not believe we were there the day before Thanksgiving......

When they called me in, I have to admit my legs were shaking a little bit when I stood up!  The doctor told me that I have an Intraductal Papilloma tumor.  It is usually benign & she is 95% sure that this one is.  However it's in the same family as colon polyps & can become malignant in time. 

Monday I have an appointment with my doctor and my plan is to have it removed ASAP!  I don't care if it is benign, I want it OUT!  This is not something I want to have remaining in my body.  So I'm hoping he will send me to a very aggressive surgeon and we will get this done.  If it is malignant, which I doubt it is, I'm planning on having the whole breast removed.  The small tumor is far from the chest wall, so that makes me feel better.

So it's been an unreal week- I feel a bit detached but I'm ok.  It feels like I'm gearing up to deal with this.

I just want to encourage you do NOT put off procedures!  I did not realize it but it had been almost 2 years since my last mammogram!  This tumor is so little, that even knowing right where it is, I can not find it. I would have had no reason to go in, if I hadn't realized I was behind on the schedule.   Don't take any chances with your health.   Actually after I got that news, I had another appointment to have a pelvic ultrasound done.  Everything is fine.  My doctors are just trying to rule out everything because of the pain I've been having.  But Wednesday was not a fun day for me. 

Honestly I feel like everything will be fine.  The doctor was reassuring and everything I read was reassuring too.  Still thoughts go through my mind like what if the doctor is wrong and it is something more serious?  So please keep me in your prayers!!!!

We are never early for church anymore since we live a distance away but we somehow made it last week so we had times for some pictures. 
Sarah and Sam last Sunday.  Sarah doesn't like to sit by Sam, he likes to pinch her

Daddy and Selah

 yes he loves me

Princess Sarah

Where's Sam???

 Shad and his 'kittens"
 Pictures from my walk near our house.

Our only Thanksgiving picture!
Jon gutting the turkey!  LOL- that is something I can not do!

 a few weeks ago we had "dinner on the grounds" and we dressed causal.  Sarah and I did our Ukraine shirts.
Sarah can sit and swing herself on a regular swing now. 

 Sam can too, he's just chilling with his big cup of water:)

Well hope all of you had a good Thanksgiving we did with our family here.  Steve has been home all week from college and I love that!   Two more weeks and he's home for Christmas break for a month!!!!!  It's great to have all my babies under our roof!!!!

Thursday, November 12, 2015

A Long Week

It's been a long week.  Thanks for your thoughts and prayers, cards, flowers and food.

We had Jon's dad's viewing Monday night.  So many people came by to support our family.  We saw some old friends we've not seen in years.  It was so good to see them again.  Of course it was good for our family to get together.  Times like that, draw people together. 

After the viewing, the family came over to our house for a supper that was provided by our church.  It was a good time to get together and enjoy each other's company.

Sam and Sarah handled the viewing without getting stressed.  I was really proud of them. 

Tuesday was the funeral.  Of course things had gone too smooth on Monday so Tuesday was more stressful.  I realized that Jon did not have a good white shirt since I'd gone through all his stuff when we moved.  Most of the ones  he has, are colored shirts.  Then Selah's black shoes didn't fit, so I had to run off to the store.  It was funny, because I just threw on a tshirt and shorts but my make up and hair was done, I'm sure I looked odd:)  Thanks to Beal's I found just what I needed AND for the FIRST time I got my Senior Citizen's discount! 

I rushed back and had to iron clothes....I had to use the "magic hem" stuff on Sam's pants.  I love it, just turn the pants inside out, and instead of hemming the pants, just put the strips on the inside of the pants and iron it. 

Luckily we still made it to the funeral home  and early even thought we had to drop off Selah and her nurse at the church.   Based on time frames, the burial was done first, privately for the family only.  At first I thought that was really odd, and it was different but it was more intimate.  While we were still at the funeral home, I had a private moment with Papa and I told him "thank you" one more time- he raised a good man, that I'm lucky enough to be married to. 

Then we went to the church for the service, Selah and her nurse were able to wait in the family parlor until we returned from the cemetery.  Of course nothing goes smoothly and Selah had to be suctioned as the rest of the family was filing into the church by a side door.  So we got in a little later, when we got to the side door it was locked, I was a bit worried but my husband heard us and we were able to get in. 

My husband shared a short sermon, he called it "My father's hands".  It was really beautiful.  He talked about holding his dad's hand as he stepped into eternity.  Then he shared how his father had guided, helped and even disciplined him and his brothers with his hands.  Some parts of it, were quite funny. 

Sam and Sarah did really good in the service.  I was nervous.  They are used to church, but our church is not very formal.  I did have to restrain Sarah, she is used to twirling on the floor during music.  She was not happy with me because I made her sit in my lap instead of twirling on the floor. 

Other than Jon's part of the service, it was not very emotional.  However as we sang the last song and the last prayer was prayed, it hit me anew that Papa was gone...   So I pick that moment to fall apart....   The family was led out, but of course again things had to get a little crazy....  Sam had a hard time walking between the pew to the end, then when he got to the end of the pew, he was afraid to step out in the aisle, I think he was afraid it was a step down that he couldn't see.  So he was holding back, at the same time, Selah's head fell forward in her chair and was resisting us trying to move it.  So me, Sam, our nurse and Selah were at the front of the church, having issues, everyone was looking forward and I was trying to control my tears.... Oh my.... only us.....  I was so embarrassed but there was nothing I could do about it! ( I wasn't embarrassed of my kids, just of being in front of everyone and of myself falling apart.)  Anyhow we survived. 

This past week was more stressful and emotional than I thought it would be.  Papa had Alzheimer's so it had been a long goodbye.  We'd known for over a month that the end was very near, but honestly I don't think you are ever ready to let someone go.

Looking through old pictures and sharing memories make me sad for days and people who are gone.  We did a lot of that.  And even though it was Jon's family, so many of the family that I got to know when Jon and I first married, have passed away. Looking at their younger pictures just makes me sad.  Time passes so quickly.  Everyone was so young just a few years ago and now they are gone..... makes you value the time you have on this earth with your family. 


Jon and his brothers and daddy

Jon and his brothers

the boys and their Mom

Jon and his little brother Jim.  Jon is on the left, doesn't he look like Sam?
this was taken at the funeral home, I love how Sarah was loving on her daddy.

Just wanted to share how much Selah is enjoying her TV


Thursday, November 5, 2015

Marty Lyons Foundation

Yesterday the  Marty Lyons Foundation blessed Selah with an incredible gift.  They gave her a tv, that can be right over her bed via an arm.  The tv is an amazing one, it took about as long to set up as having the arm put on the wall.  It's hooked to the internet so she can get all kinds of kids channels

We could tell Selah liked it immediately.  She turned to it and watched it for a long time.  We could watch her eyes and tell that she was actively engaged in watching and following the screen. 

Marty Lyons' brother Richard came and installed the tv.  It was nice to meet him too
They also gave her a bath sling for her Hoyer lift, that's a huge help for the nurses when they give her showers because it is mesh and can get wet and will dry quickly. 
we were asked by Jon's office what kind of donation they could make to a good cause in honor of his daddy and we thought of the Marty Lyons Foundation for all they do for children who are struggling with health problems.  Papa cared for children and had much compassion so we've asked them to send any donations to the Marty Lyons Foundation. 
this is their home page and it tells some more about them.
(also they had help from Tampa Family Handyman -Bob Stache   Nice guy if you need a handyman in our area 813 527 3656)
Years ago they enabled Sam to be able to have Dolphin therapy.  That was an amazing experience and we actually learned some therapy techniques that we still use with him that week in therapy. 
they let the other boys swim with the dolphins also.
Sam had 3 hours of therapy each morning



we also went to Key West while we were down in the Keys

we love to snorkle

this is one of my all time fav family pictures
Thought you'd like these old pictures, all the way from 2007 :) 
The Marty Lyons Foundation has been a big blessing to our family.  We sincerely thank them for this gift to Selah!!!!!

Wednesday, November 4, 2015

A Life Well Lived

My father in law Joe Clanton passed away last night after a long health battle.  He was 87 years old.  We called him Papa.  Papa wasn't world known,  he didn't  cure cancer, or climb Mt Everest.  He didn't step foot on the moon nor was he a big business tycoon with a 100 ft yacht but his life left a huge footprint on this world. 

The first time I met him was on my 24th birthday.  Jon and I had only known each other a week but after some past experiences, I thought it was best to meet the parents as soon as possible.   I truly believe you better know what kind of gene pool a potential mate has and yes there is a story there for sure! Anyhow I met Jon's parents and immediately could tell they were "good people"  We had a nice conversation together and I could tell that they, especially my father in law, liked the fact that I'd put myself through college.  Both of them came from poor Southern families and they valued an education above all things. 

My FIL actually was raised in Dyce Arkansas, a town that was basically a social experiment  of Franklin Roosevelt.  Johnny Cash was raised there too and was a close friend of his younger brother.  My FIL picked cotton and worked hard.  He went to college where he met and married my mother in law Joanne.  They both were educators.  He became a principal of a small school in northern Arkansas early in his career but for some reason they moved to Lakeland Florida in the 1950's.  I'm so glad they did:)  He worked as a coach, a principal and then at the school board office as an administrator until he retired 42 years later.  My mother in law was a teacher until her retirement.  They were serious about education. 

He helped his siblings through college, and I think he had some help from older siblings too.  They all worked together to help each other.  There were eight siblings and now all are in heaven except for one of his sisters.  They all remained close through the years.  Luckily I got to meet most of them and loved the times we spent with them, especially our one trip to Arkansas when we took my grandmother with us.  They all fit in together and had such a good time.  As some of the siblings got older and spouses passed away, they moved in together.  We had the best time staying at the house with them, hard to believe all of those fun wonderful people are gone from our midst now.  I am pretty sure they all had quite a reunion last night.....

Anyhow I'm one of those rare people who doesn't complain about my in-laws.  As you know if you've been reading my blog for any time, Jon and I got married in ONE month's time.  Since I didn't have family, I didn't really realize how much that would  freak out his parents.  Believe me, my youngest brother in law, LOVES to tell me LOL.  He was privy to conversations we never heard..... But after Jon and I came back from our one night honeymoon, his parents acted like they could not be any happier that we were married.  They totally supported us emotionally as we looked for a place to live and start out as married folks. 

As a wedding gift, they bought us a small trailer in a retirement park.  In the summers there was only us and one other couple living there.  It was a very practical gift that saved us so much money while Jon finished school and we got started in the ministry. 

Only six months after we got married, my mother in law was killed in a car accident.  It was so sad.  That's been over 25 years ago and from that point on, my father in law began a slow decline.  It was such a shock to all of us and especially to him. 

Jon has always felt supported by his dad, even when he did things that seemed odd to his family.  When Jon became a Christian, he was beyond a "gung-ho" Christian.  And since Jon's parents were more quiet about their strong faith, it was a bit hard for them.  I think they were glad we got married because I was a bit more of a realist than he was.  BUT they still supported Jon, they'd go to Pentecostal services and even to the homeless shelter where Jon would preach.  Let's just say that was a new experience for them LOL  When Jon felt a calling to preach, his daddy said "I'll send you to the best seminary there is" and he meant it and did it. 

Jon and I were talking about how Papa was always there for us as a couple.  He came to visit us in NYC a month before Steve was due, and ended up being there for his rather early traumatic birth.  He was there when we took him home from the hospital.  In fact, we have a really funny story about that.  It was sleeting, and we were trying to get the car seat hooked up for the first time.  So Papa was in the back seat and that car seat got the best of him and he started cussing a little.....  I don't think I'd ever heard him cuss before at that point and I was shocked and worried about the baby hearing cuss words....NOW we laugh at that story.  We finally got it hooked in and we all drove through Manhattan to where we lived in Brooklyn with our new baby, Papa was in the back seat with Steve all the way.....His middle name is Joseph after his grandfather. 

A year later Papa came up as soon as he heard that the twins I was carrying had died.  He went with me and Jon to the doctor appointments and was there at the hospital when I had surgery and almost died.  After that he cared for Steve (who was one year old) for a few days until I got home from the hospital.  Steve was fine, his diaper was on backward but he was fine.  Papa confessed to me that he didn't remember changing a diaper before Steve LOL!!!!

Then a few months later, when I hit rock bottom with a deep depression, I called him and said I wanted to come home.  We didn't have the money to move nor did Jon have a job prospect.  I'm not even sure Jon wanted to move home. But Papa knew I couldn't take it anymore and just three days later was there to help us move home.  He drove the moving truck all the way home for us. 

Fast forward a few years, when I was on bed rest with Sam, Papa would bring me food and pick up Steve from school.  He was there for Sam's birth too.  Sam was in the hospital for some time, so eventually  Jon went back to work.  Papa would bring me food, or come and take me to the cafeteria for lunch.  One day he took me to give blood so they could use my blood as a transfusion for Sam.  He was really concerned about me giving blood so soon after giving birth.  Well we got back to the hospital and I turned to say something to him in the elevator and passed out.  Papa and a doctor  grabbed me and got me out of the elevator.  We laughed about it later, I did a spectacular faint, but it scared him at the time. 

After Sam was diagnosed with Peter's, Papa told us to find the best doctor in the US to treat Sam and he'd help us with it.  He was so concerned about the whole situation. 

He continued to be there, all the time Sam was in and out of hospitals.  He'd come and check on him and on us. 

Around that time, there were signs that dementia was starting but there was always a warmth and a caring from him.  He had a long time that was good, he enjoyed the outdoors and his family.  He loved his dogs.  He had other health problems and there were times we thought the end might be near but he was such a strong man.  He was a fighter.

This past month had been hard for him.  Several times we thought the end was near.  We had a really hard time deciding what to do about our trip to NY for Sam.  It was originally scheduled for September but the doctors had to reschedule it.  The week we were scheduled for  not a good time to be out of state and we really debated it but if we didn't go then, we couldn't go for a couple of months and that was not an option due to the concern about Sam's pressure.  I couldn't go because I was sick so Jon had to go, I was so very thankful that his dad didn't pass while he was gone. 

Jon and his brothers have had some really sweet times with their dad as he neared eternity.  Last night he stepped over as Jon and his brother held his hands.  I'm so glad for the time they had together.  I think having experienced things like this make me realize how important life is....  it makes me value life, even if that life is a little harder than we'd like. 

I've told Papa on several occasions that he was a better father to me than my own father (or mother) ever was and I told him again last week, the last time I went to visit him.  He was there for me as his daughter in law at some of the hardest points of my life.  I have no doubt if he had been able to be with us after the accident he would have been right there with us in NY.  He was that kind of man, family came first.  He wasn't a big huggie emotional type of person, but he was a rock solid faithful man.  He showed his love by his actions.  I appreciate all he ever did for me and for my family. 

Joe Clanton was not world known but he changed the world of three boys & of others too.  He was a faithful husband and father and taught them how to live a good life.  They went on to be good husbands and fathers to their wives and kids.  Each of them work jobs that are people oriented, where they are helping others.  They love their families and are good people.  I know he taught Jon how to be a good dad, I've heard Jon tell too many stories of times when his daddy was patient with him, even when he was a mess.  I see Jon responding to our kids in the same way and not just our kids but inmates and others who need care. 

When you leave a legacy such as Papa has left,  I'd call that a very successful life- one well lived.

After our vow renewal.

Papa with Steve leaving the hospital




Steve with his Papa and Uncle Jim and family.  Steve is the goofy looking one :)

Papa at Sam's One year old party

 Surprise!  A Clanton from China!!!
For some reason, Papa could always remember Shad's name. 

Not the best picture, he'd just had a bad fall, but this was the last one I could find with just Steve and Papa together. 

Papa only saw the girls once before the accident.  At that point he wasn't driving and we were trying to keep them home and bond with them.  I'm glad we did take them out to see him.  He hasn't been to our house since then, as he was home bound but we'd all ( except Selah) been together at his house or the nursing home. 

Thankfully we have an eternal home where one day we will all be together again.  I can just imagine the welcome he got last night from his wife, siblings and many friends.  Maybe even Johnny Cash sang him a tune or two......   We will miss you Papa, thank you for your life spent loving your family!

Thursday, October 29, 2015

Follow Up On Case

When I wrote yesterday's blog, I did not find out as much info beforehand as I should have.  The little girl has Charcot Marie Tooth Disease according to other news sources.  As I read more about this situation, I became even more disturbed.  While every single case of any disease is different, for example Sam and Sarah both have Peter's Anomaly,  Sam seems to be more affected by the small statue &heart mummer, while Sarah has more structural abnormality's in her eyes.  Both have the mental delays and some muscular  issues.  Anyhow in everything I read about CMT, there was little talk about life expectancy being abnormal- in other words this is NOT a fatal disease.  There were a few references to the fact sometimes there is decreased lung capacity. 

Having been in the "special needs world for almost 12 years, I can read between the lines.  My take on this is the family has decided not to have a trach done on the child.  A trach would alleviate the pain of the suctioning down her nose.   After a trach is done, there is no pain associated with it.  It's very easy to suction, even deep suction the lungs. 

I tell you what happens ......  when a child needs a trach, the parents are told that they can have it done, but they are told they do NOT have to have this done.  We were told that with Selah and I've had several other parents tell me the same thing happened to them.  The doctors will say without one, evidently your child will have an issue that can not be resolved and will pass away.  Honestly to me, I felt like the doctors were giving us "a way out" and it made me MAD!   Once a trach is in place, there is a medicine called  tobramycin that can be inhaled through the trach that will fight lung infections.  Selah has been on it for years.  It's a miracle drug. 

I don't mean to come across as unfeeling or unkind but I believe in LIFE-   I refuse to embrace the culture of death that is in our world today.  I refuse to embrace not fighting for a child's life, I refuse to embrace euthanasia, I refuse to embrace doctor supported suicide, I refuse to embrace abortion or the killing of newborns who are not "perfect"  I believe in supporting the elderly and not hastening their deaths......

There is a time to let go, when doctors say there is absolutely no hope, but even in that, one must be very careful not to hasten death.  I'm not against a DNR (do not resuscitate) but I am against letting a person get to that point unless there is no hope.  I just do not believe this is the case. 

So you might say I don't  know this child's whole medical history and I do not.  But knowing what I know, I'd guess there are things that could be done for her that could lengthen her life and even make it less painful. 

This whole situation bothers me very much.

I've had four times where I've had to make end of life decisions and it has never been easy.

 The first time I was only about 25 and my great aunt was put on a respirator and had several medical things happen at once.  I was greatly troubled that as next of kin, I was asked to make the decision to turn off the machine.  Jon and I called some ministers we knew and discussed it with them but I was just sick.  We were at the hospital with her, waiting for the doctor to come.  I was still undecided and walked out of the room ( a friend had stopped by) within 5 minutes, the nurse was running for me, her heart stopped just that quick.  I was grateful not to have to make the decision to take her off life support. 

The Sam, several times we had to make decisions about him and we always were conservative and fought to save him.

In 2012, right after adopting the girls, my birth brother fell into a coma and I was called in.  I had not seen him but once as an adult & maybe three times as a child.  He had recently moved to our area and we had planned to get together, he had cancer.  Then he had a massive heart attack.  When I was called in along with my birth mother, it was extremely uncomfortable.  She had not seen him in over 20 years.  He had a long time girl friend but the doctor was not including her in the discussion.  I felt it should be her call as they had been together for decades and refused to sign anything without her involved.  Eventually the decision was made to remove him from life support.  He lived a few days before passing away. 

Then of course, only a month later, we would be making the same type of decisions for Selah.  We always wanted to fight for her, to give her the best chance ever.  Believe me we were offered " a way out" several times.  At one point a doctor counseled me about how horrible our life and our other four children's lives were going to be if let her live, and if we took her home to care for her.  As you can imagine, I sent that doctor PACKING and refused to allow her back on Selah's case.  That was the last thing I needed to hear.  Of course I was scared out of my mind but I knew what the right thing to do was.....  SO I KNOW what doctors say and I know the kind of things that are done, so it makes me a bit suspicious.  We've had some of the same things said to us about Sam but not to the level it was with Selah. 

All I can say is that little girl and her family need prayer. 

But YOU need to think deeply before you make decisions of life and death for someone else and for yourself.  It's a very serious thing.  Make your decisions for LIFE before you are confronted with a situation.  In this world of medical marvels, chances are you will be confronted at some point with medical decisions that are very serious.  The only time I wasn't sure of the right thing to do was with my aunt.  But now I could make the decision to take her off the life support as there was so many things going on with her and her age (over 80)   With my children, I knew to fight for them.  With my brother, he did have terminal cancer and there was little to no brain activity.  However that decision was made by his long time girl friend and agreed on by everyone else.  BTW, she is such a wonderful person, I wish I'd gotten to know her sooner.  She has become a friend. 

Taking someone off life support, is one thing.  Not acting before that person gets to that point is quite another thing!

These decisions are hard, no doubt but LIFE needs to be protected!


Well changing the subject, we are enjoying Fall in Florida.  I took the kids outside for about 2 hours today and they are some tired kiddos tonight.  Sarah has had some issues staying asleep lately but hopefully she won't tonight.  Since she lost all her sight last spring, she's had some issues. That's not unusual many completely blind people have an issue with sleep.   She tends to get out of bed and lay on her rug.  Between Jon and me, one of us will wake up and go check on her and put her back in bed.  Last night I laid out a bean bag chair a blanket and a huge pillow on the floor.  Of course she didn't get out of bed all night LOL! 

Sam is finally using the little slide and both of them can sit in a regular swing seat.  Sarah swings herself pretty good, Sam is lazier.  But they love being outside.  It makes for much happier kids.

In the summertime in Florida it's hard for my little ones to be outside, it's too hot, too many bugs (they don't know how to knock them off), lots of rain we enjoy our Fall/Winter/Spring outside.  Otherwise we are on the screened front porch with ceiling fans on!  They love that but don't get much direct sun or exercise.   Selah has been going outside too again.  She really hadn't been out much since we moved.  Her nurse noticed a plane and she remarked to Selah "look at the plane" and she looked up!  It seemed to amaze her nurse today:)  

My sweet father in law is still hanging in there.  My husband and his brothers have had to make some medical decisions in his care and I'm so proud that they have all made the decisions that have enabled him to live in comfort. They respect his LIFE.  My oldest brother in law has spent the last 20 years really being there for my father in law, he moved PaPa in with his family after my mother in law passed.  My brother in law and his wife have been an example of a son who did everything for his dad.  Of course Jon and his younger brother were involved too but not on that day to day basis like they have been.  We as a family respect life, even when life may not be easy or comfortable.  God gives the grace.  My younger brother in law and his wife have done a lot of care for her parents.  I'm glad all our kids have seen the various examples set by each family member.  That gives them a legacy that is not too common this day and age. 

Hope you all have a great weekend!  I always feel like Thursday night is our Friday.  Jon usually works late but he's off on Friday and Saturday.  Steve is coming home this weekend:)  It will be short but it's always good to see him.

Wednesday, October 28, 2015

It's a Slippery Slope

Until recently I have always been an avid news watcher but I swear now I just get sicken by many of the things I see.  This article was sent to me about a little girl with Spinal Muscular Atrophy.

So this little FIVE year old girl has been given the choice of whether or not she wants to go back to the hospital if she gets sick again or "go to heaven"  This story will lead you to believe that SMA is a disease that is painful, but it's not necessarily painful. It's awful.  It's similar to ALS.  Evidently the child gets to the point she may need a trach/vent to get oxygen and a g-tube to eat but even then, life is worth living.  Why do I know this?  I have a good friend who has a daughter with SMA.  Her daughter is a TEENAGER and she is living a full life.  She has a trach/vent and a g-tube now but she is still living life.  She tends to get pneumonia and lung infections, but that only slows her down till she goes in the hospital, gets some meds and gets better.  BTW in the video the little girl is in a vest that shakes her and loosens the mucus in her lungs, many kids use that kind of vest. 

I don't know the Snow family but I wonder what kind of doctors they have that would allow them not to get treatment for their daughter?  It makes me worried!

My friend's daughter Paige is a hot mess, she loves school, her friends and her family.  She has strong opinions and gets in trouble for talking too much:)   She dresses up for Halloween, goes to school, goes to school functions, she goes on vacation with her family and right now they are building a new home.  She is involved in LIFE! 

Ready to go out
At the new house work site

When she was little, the doctors said she wouldn't live past three years old.  Then they changed the I think they just stay quiet.   No she is not cured, yes the SMA has progressed.  Yes it totally sucks that she has to deal with it.  Now she has a trach, she's on a g-tube and she hated that but she is here....and she is enjoying LIFE!  I'm sure she wished her life was different, I wish it were too, but she's embraced the life she has.  Her parents have embraced her life.  They've been very proactive with her treatments and are on top of things. 

Every case is different, as each DNA is different. One writer on the comment section of the video seems to have more info than what the video shared but regardless I feel this is being shared to garner attention for the "right to die" movement. 

What worries me is not only did the family make the decision to allow the little five year old girl to say whether she wanted treatment anymore but that this is celebrated as something "good". 

We live in a "culture of death"  It's will affect all of us.  LIFE is not celebrated anymore. 

When I look at Selah, or my other two children who are disabled, I see them enjoying their life.  Yes there are hardships at times.  My father in law has been bed ridden for some time and some may see a person like him as not worth living, I don't I see his life as just as important as anyone else's.  

When I see articles like this, I am sad for the family.  I'm very sad for this child who has had to deal with more than most adults have ever had to deal with and who has a short life expectancy.   Life is not always fair or even. 

Unfortunately, this family felt they were safe to speak out on this and share with the world their decision.  They felt is was ok because of the world we live in now is more open to euthanasia than ever before.  This is celebrated as a "wonderful thing" that this child has the "right"  to decide not to get treatment anymore.....  it's a slippery slope.....

 Read about it here 

Tuesday, October 27, 2015

Happy 20th Birthday Steve!

Happy 20th Birthday to Steve!  It does NOT seem possible that two decades have past since the day of his birth. 

On the 25th of October, I went in for a regular stress test.  Since I was high risk I'd been having four a week for the last couple of weeks.  I was so unconcerned that I told Jon to go out with his dad, who was visiting us BEFORE  the baby came-Steve wasn't due for another month.  So Jon and Papa were out in NYC and I was on the subway headed to my appointment at St Luke Roosevelt's.  The subway ride was memorable as a man actually stood up and gave me his seat LOL.  Once I got to the hospital and got hooked up....all hell broke loose.   Evidently the baby's heartbeat was so irregular and at times non existent that they had me up on Labor & Delivery floor before anyone could think straight.  

Of course this was back before cell phones....Jon didn't even have a pager so I had NO way of getting in touch with him, talk about feeling alone in NYC!   When they got me in the room, and handed me the traditional gown, I went to walk into the bathroom to change since there was about 20 people in my room.  One of the nurses yelled at me to "Change NOW" that made me realize how scary things were and I stripped right there in front of God and everyone with the door opened!   They had me sign all the paperwork for an emergency C-section and actually shaved me!  Then I got the nice surprise of an enema! son better love me!

In an emergency situation, I get quiet and withdrawn.  I don't think I cried even once.  By the time, everything got done, Steve's heart rate was more stable.  So they held off on the C-section. 

Hours later, I got in touch with Jon and he got up to the hospital!  The doctors thought they'd work on inducing my labor slowly while watching Steve.  If things went downhill, we were headed right to the OR.  So Thursday morning they started me on some drugs, nothing really made much of a difference.  I really didn't feel like I was in labor.  That night they turned up the Pitocin (the drug from SATAN himself) and gave me an epidural.  (something I'd been asking for since I got to Labor & Delivery LOL)  I really wasn't in pain but the epidural didn't numb me at all.  I was such an idiot, I mentioned it but since I wasn't in pain no one really paid me no mind.......

THEN came 6 am Friday morning....October 27th.  I woke up in complete agony.   I kept telling them to FIX IT!!!!!   But I was at like less than 1 CM.  By 8 am I was at 8 CM and was pretty sure I was going to die and really did not care as long as the pain stopped!

If you've never had labor induced, you have no idea of what labor is.  The labor pains do NOT stop....not for one second.  Oh they'd peak, but the lowest they'd go was enough to make a person go crazy.  At one point, I pulled Jon up to me and said "I. WILL.NEVER. EVER. DO THIS AGAIN"...    He was agreeing to anything at that point. 

At 10 am I was at 10 cm and they told me to push- I had already started pushing.  Then they told me NOT to push.  I totally ignored them, there was no way to stop my body from pushing.  Steve continued to be a willful child and was is the position of "sunny side up" with his face facing up rather than down so he wasn't going any further. 

NICU was called in since he was a month early and had been having so many problems.  Luckily they were not needed at all. 

Finally after almost two hours of pushing, the doctor delivered him by forceps.  That was beyond awful.....  but it was over!  My words were "Thank God"  Smart aleck doctor said "What about thanking Me?"  He got a glare! 

They had asked if I wanted to see the baby delivered via a mirror- I had declined.  In fact in one of my few moments of clarity I had asked them to clean him up before they gave him to me.  I didn't want him just plopped up all me all dirty.  ( Yes you can tell I was a little bit unsure about all of this!)

Well my second statement was "what is it?"  since just two weeks before we'd been shocked that the little girl we thought we were having was in fact a little boy (that was at the 9th ultrasound)   So in my heart I was hoping the 9th ultrasound tech was wrong.   Everyone was like 'it's a boy" I was so disappointed but then they plopped that little very dirty boy up on me and the star dust fell on me and I was so instantly in love with him. 

I'd never felt a love like I felt at that moment.....of course I've been blessed to experience it four more times now, in an OR, and two different orphanages.....but that moment was amazing, totally beyond words. 

Some people say they forget the pain, I may not be able to explain the pain but I dang sure I've never forgotten the pain.  In fact when the doctor told me that Sam was breech and had to be delivered by C-section I said "Thank God!"  He just started laughing and told me that was the first time he'd had a mom say that!  And by the way, the C-section was the easiest thing in the world!!!  Not only was the delivery a walk in the park (although there were so many worries about Sam), the recovery was amazingly easy for me.  Let's just delicately say Steve's birth was something I have never fully recovered from.  Sam's birth was so unbelievably  easy- I'm still grateful to him !!!!

But despite 8 months of throwing up every day.....I had morning sickness until I was home from the hospital with Steve....and the world's worst delivery..... Steve was the most wonderful baby/toddler/pre-schooler/adolescent and teenager EVER!!!!  We've enjoyed each and every part of the journey with him.  He's the one who started us on this parenthood path.  It's still unbelievable that he is now out of his teen years.  This part of his life as a young adult is thrilling to be a part of, but hard since he is away from us at college.  It does make us treasure every time we are all together.  We can't wait to see what is ahead for him.

Today we dropped by the college and brought him some cupcakes.  Luckily he had left something he needed for a class at home LOL  and no I didn't hide it so I'd have an excuse to go by!   I have worked on any little bit of helicoptering I might feel to do.  I was determined to not call or even text him daily and certainly not drop by too much.  We don't even get his grades or anything from the school, we feel that he can share things with us, but we don't want to be too involved.  We've always had a great relationship with him, it just is his time to make his own decisions and path.  Well it must be like that old saying "if you love something let it go, if it comes back to you it's yours, if it doesn't it never was "  LOL  I actually had that on a t-shirt!!!!!!   Anyhow he calls and texts us and comes home most weekends.  I love it.  He actually thanked me recently for not being like some of the parents who have treated college like it's an extended high school situation.   FOR THE RECORD- I'd prefer to live in an underground bunker with my kids for the rest of my life!  I don't like this growing up stuff LOL!  But I also realize there are meds for that.......

Look at Sarah looking at the camera!  A once in a lifetime moment!!!!!


The funny thing to me, since he is at our Alma Mater, I can remember hanging out in that lobby with friends 30 years ago.....that's just freaky to me (but in a good way) 
Being a parent has been the biggest adventure of my life.  We've had so many scary medical moments with our pregnancies and experienced losses.  We've had such highs and so many lows.....  I can relate to a lot of ladies out there who have had a hard time having a child.   If you are in that position, I encourage you to continue trying, but maybe adoption is a viable option for you too.  It certainly makes you a parent just like birth does (and it's a whole lot less painful LOL) 
Well Happy Birthday to Steve-O you started us down a path we never imagined....but have loved!