Posted in Evan

Evan K

You may wonder why Evan, my third son, should get a category of his own. Well, he is a category of his own.

Evan, now 22, was born with a craniofacial deformity, plus.

To look at him there is not/was not anything greatly apparent,

but looks   can be deceiving. Pierre Robin, is the first label he received, after he was born with a cleft of the soft palate, shortened chin, and tongue crammed down his throat. Since then many more labels have been attached. Sticklers, Aphasia, Dysarthria,Duanes Syndrome,Apraxia, to name a few.  Pierre Robin is a congenital deformity, the mandible (chin) does not grow with the rest of the facial bones as it should, this causes the tongue to be pushed back and up, because it is constrained by the chin- this causes the mouth to form around the tongue, which results sometimes with a cleft of the palate. The airway, throat is also compromised because the tongue is pushed back inside the throat. — Then other things can happen. 

Just after birth, Evan turned blue when he cried, because his tongue would draw back and cover his airway. Almost immediately Evan learned to not cry.  The nurses though wanted him to cry, so he would clear his lungs? pink up more? , what ever the reason is nurses want to make a new-born cry. This is when they found he had the cleft and tongue issue, as I said, it was not apparent at first glance.

When the nurses/doctors did find the malady, they whisked Evan away, to figure out what to do.  Needless to say, in Midland Texas, Pierre Robin was not an everyday occurrence. I think the encyclopedia (I saw them reading from the book) they read the information of Pierre Robin and treatment of  was not the revised edition. The treatment(s) they used was criticized highly by the surgeon we ended up seeing a few weeks later, in Dallas.  

The doctors, trying to help the airway stay clear, tied Evans tongue down. They ran a string (by needle) underneath and through his lower jaw through his tongue and back out the bottom. The first surgery they had a plastic bolster against his jaw/skin, to keep the string from ripping through. Two days later ,when they redid the tie, because a nurse had sucked the sutures out, they used an actual button.  When first presented with the surgery, they would be doing within 2 hours of his birth, we questioned the mechanic logic of it.  We thought they would need to cut the underpinnings of the tongue in order to pull it out and lay it flat.  They said that just tying down the end of it would be enough.  Later, when the surgeon in Dallas was examining Evan, he called the doctors in Midland Neanderthals and explained for that surgery to work they would have had to cut the tongue free and  pull it flat, and that no one did that surgery anymore.

We do not fault the doctors in Midland, they did their best. Evan would have been better off without the surgery, he now has tongue nerve damage and it is suspected by other MD’s one of the 2 surgeries left him with stroke damage from some oxygen deprivation from the compromised airway.  That actually would be the anesthesiologist responsibility. Also it would take the ultimate control of all things away from God, if we said ” If they had done this or that he would be ok.” As it is, for some reason, God only knows, Evan has some learning difficulties, language difficulties, nerve damage and a very special soul.

Today, Evan is still labeled as having learning disabilities, language being his primary difficulty.  Right now,  Evan is HORRIBLE with managing and understanding money, more so than the average 22 year old male.  Right now, he is not able to get a job that pays more than minimum wage. He has not found a way to present himself to others that proves his potential, yet.

Right now, Evan wants to spend as little time as possible with us, especially me, I did say he is 22.  We are building an apartment for him on our shop. Not because he can not live on his own, but it would be difficult financially for him to do so , with the limited income he is getting right now. Someday he probably will move further away.  We see him still everyday,usually, if he has work, because he comes over to our house to shower. (We have not put all the plumbing in,yet. Evan was not willing to wait so he moved in about 2 month’s ago) If I run to town, and with Keith leaving for work at 7 AM, Evan can work it so he does not see us at all.

Evan does drive, has been since 16, like most guys. Evan knows cars. We used Matchbox cars for incentive, math grouping games. Many of the lessons (homeschooled) were planned with cars as the subject.  When we started drivers training the driving books became his literature.  Evan is a good driver, a nerd driver. Drives the speed limit, always, blinkers, always, reminds me when I do it wrong, always

People who know Evan really like him. He has something about him that is quite charming.  Evan has a few friends he does hang with regularly, they too, have some disabilities. They do not live average lives, either, never will. Evan is the only driver in the group, and sometimes will take them to the movies, but most of the time they are at someones house playing video games. These guys are video pros!!  It is what they CAN DO.

Most ‘average’ people enjoy Evan’s company, and will speak with him in church or various social events, but that is about it.  A few times he has gone to movies or out to eat with someone ‘average’  but not on a regular basis.  No one ever asks him to hang out or spend time with them. The charm only works for a short time, I suppose.

As Mom, I like him anyway, and his charm is completely wasted on me. I push him pretty hard to not ‘give into’ his disability, to rise above it. Sometimes I am right and sometimes I am just scared.  I see him as someone settled with who he is, because ‘What’s the Choice?’.  I see him sometimes wishing he could be just a bit more average, when he buys his ‘Muscle Milk’ and dyes his hair black.  But mostly, I see a person who is stronger, more confident, and content with who he is, than I am with myself.  He does not concern over his dress, his hair cut, his weight. He does not worry about what he will say or if he can pronounce it correctly. Evan does not have to have the newest iPhone, most friends on Facebook. He has no girlfriend. No one calls him to go anywhere. He may never get the opportunity to reach his full potential and be more than a sacker. Evan has so much less to be content with than I, yet he is.

That surgeon who ranted about the inadequacies of the doctors who worked on Evan in Midland, told us what to do with him after we removed the ‘button’.  He said, “Lay him on his stomach and hope he keeps breathing.”   We did lay him on his stomach, but we did more than hope. We prayed. We trusted. We knew God brought an amazing man in this world. Several things have come against him and God has brought him through it all.  He is made to do great things.

Posted in Evan, My House that God built

The smaller it is the longer it takes…

We decided a few months ago that we would add an apartment in the shop Keith was building. We decided this based on a couple of things:

1.Apartments, rentals of any kind, here are ridiculously expensive and right now, there are no apartments or homes to be rented.

 2.IF there were apartments, we don’t think Evan’s minimum wage income could afford him a place that would be worth the money.

      So we built the shop and designed the efficiency apartment and told Evan “Soon.”  We lied.   Not intentionally, we thought we would get the apartment finished in a matter of weeks. We built a house in a year, of course we could fill/in build an apartment   “Soon.” This apartment has taken almost a year and we still need to dig the septic, hook up the water,(plumb) build the shower, put in sink, toilet, put cabinets in the kitchen. We still have MAJOR work to do.

One weekend, about 6 ago, Keith and Evan moved some of Evan’s stuff into his apartment, prior to the electric being hooked up.  Keith wanted to get the stuff out of his shop so he could get some room to do some work on the apartment.  This was all Evan needed. Evan got him an extension cord, and ran it from our house to the apartment, hooked up the window unit, and his lamp, another extension cord and electric strip, his TV, the cable box we have been paying not to use for 5 months, his playstation, his television and phone charger. He put sheets on his bed, and was home.

Evan obviously wanted to get out of Dodge!

Since his move we have finally added the electric, put in the switches, plugs (except the oven)put up lights(except the bathroom).  I spent all day putting in the coolest Ikea shelving. ALL DAY.  The shelves separate his room from the living/kitchen, and hold his electronics, collectible cars, and array of Evan stuff.

Evan makes treks over to the house for showers and bathroom. He insists on eating in his home, uses his microwave and George Foreman grill and electric griddle to cook. Keith attempted to wire the plug outlet for the oven, only to find it was the wrong one, when he went to buy the electrical plug (which does not come with oven).

This weekend the pump was finally put on the well we drilled a year ago. We have outdoor faucets for the house, but nothing hooked up in his apartment, yet. I have cabinets I finished for his apartment, sitting in the floor of the shop waiting for the kitchen sink to be hooked up with in and out plumbing. We have whitetile and a shower base to build a shower with, waiting for green board and plumbing to be brought in. The bath sink needs to be purchased, the toilet needs to be purchased.

All the plumbing can be hooked up, except the toilet. The grey water can drain out side, Lord knows theground would love the moisture. The toilet can not hook up yet  though, we have to rent some kind of equipment, AGAIN, to did a trench from the apartment to the septic tanks. The hard dry ground with caliche rock 1 foot below is impossible to penetrate by mere human hands.

In the mean time, Evan seems to be completely happy with his bachelor pad. The sink is full of dishes, which he brings over in his clothes basket to wash once a week t, after he comes over and washes hisclothes. He steps outsideto pee (he usually does ‘the other’ at work, he says)  and shows up here to shower. He never makes his bed. I think the only thing that will change when he gets plumbing, is he will shower at his place.  

Posted in Family

>Dad would have been 82

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 Yesterday was Dad’s birthday, if he was alive he would have been 82.

   Yesterday Leslie Neilson died.  Dad loved his later movies the Airplanes 2 1/2 guns etc.  Dad’s sense of humor ‘went that way’.  About a week before Dad died one of the Airplanes was playing, he and I sat and watched it, he in his wheelchair and I beside him. He smiled and enjoyed it all the way through.

Sometimes I wondered on what Dad was comprehending those last days, this time allowed me to see he was ‘getting’ it all!

When I heard Leslie Neilson died on Dad’s birthday I thought it a bit ironic.  I went to look up his info on the internet, thinking it would be REALLY ironic if his birthday was close to Dad’s death date.  Well it wasn’t BUT, it was exactly the day Mom died.  Feb 11.   What are the chances? (Some math geek needs to do the math) Of the 365 days of the year, this guy died on Dad’s birthdate and was born on Moms death date.   Mom and Dad both would watch those movies, rent them, eventually added them to their VCR library. They even laughed at them! I still grown and most of the silliness, they loved it!

There are so very many things that remind me of Dad, I love those memories.
 Leslie Neilson, and his movies.  Other movies similar in style, one being Blazing Saddles, if ever that was on cable, Dad would be watching it.
Blazing Saddles was also a favorite of Kirks, so that has a double star on memory for me.

Thanksgiving is a reminder of Dad, not just because this slim trim for life guy LOVED to eat a good meal, but it always landed near his birthday.

Zippo lighters, Dad smoked all my life that I lived at home.  I remember he always had a zippo, until disposable Bics entered the picture.  I have a couple of his old Zippos, they don’t work anymore, but they still have the smell of fluid and ‘strike’ when struck.  That smell gives me a warm fuzzy feeling all over.  Forever I smelled that  as Dad lit a cigarette.  If I smelled it, Dad was near me, or I him, probably sitting next to him, in the middle, as he drove.

Another memory smell, I get to smell every so often, a newly lit cigarette, mmmm Daddy.  Sorry all you anti smokers, to me, that is the sweetest smell.  I remember laying in the back of the station wagon as we made our late night drives either to or from Mamaw and Papaws house, covered up with a blanket or Dad’s coat. Dad would roll down the window just a bit, the sound of the wind, the feel of the cold air, just on the top of my head, the flick of the lighter, smell of flint strike, then the sweetness of that first light of the cigarette.  I felt so secure, so close, Dad and Mom in the front, the darkness of the car,except the glow from the dashboard, the stars moving past, the occasional red ash bouncing off the window above me, to lull me to sleep.

Football on TV. Stadium lights in the distance. Coach Sanders, was my Daddy.

Orange crush.  Dad and I would share these when I was a little girl.

Broken beer bottles. We did not share these.  I was about 4 and Dad and I were at the local drive in burger joint, waiting on an order.  I was crawling around on the outdoor table. Someone had broken a beer bottle and shoved it up through the wood slats, I crawled over it and sliced my knee open(I still have the big scar).  Dad grabbed me up and put his handkerchief on it to stop the bleeding, and he was mad mad mad.  I thought at first at me, for getting hurt, messing up his handkerchief, and I apologized.  Dad explained he was not mad at me, but at the so and so that stuck that bottle in the table.

When we get the Christmas decorations down I will remember him. That was HIS job. He would get the boxes down from the attic, get frustrated with mom because she would always be telling him he had ‘missed one’.

 Dad was everything to me, my parent, friend, protector, he loved me so unconditionally. I never questioned his love or approval of me, even at my worst, he never disapproved of me, just my actions.  I really can not think of anytime Dad did for himself first, he was always wanting for others.

So many memories.  Thank you God! 82 years ago a great man was born, just to be my Dad.

  

Posted in Evan

Chef Evan

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We just came back from attending Evan’s graduation from Culinary School. It turned out to be a much ‘bigger’ deal than we had thought it was.  A great program!
Within the school Evan already attends is the opportunity to take this class. It is offered and taught by the San Antonio Food bank.  As it turns out San Antonio Food Bank partners with many in the community and trains many in the culinary arts.  Also graduating the same day were some men from prison.  They trained at a different time than the Independence School.  The goal of the culinary is to equip these adults with the skills that could really help them get careers.  Evan received a certificate of completion in culinary skills. He also received his own chef coat with his name on it and everything!
The meal was great, pork loin, ettouffe-ish dish, bell peppers stuffed with seasoned hash browns. The salad was spinach and strawberries and pecans, with flakes of red pepper. The dessert was a carrot cake(Keith’s is better)with a marmalade tart.
Evan is doing wonderfully at the school. He has his bus pass, but not complete freedom to go on his own yet.  We are thinking that those at the school are a bit protective of him and do not see his full potential yet.  He does have a way of hiding it well.
We were talking with him about his driving in San Antonio, which has been the plan since his moving there. The school said it would be ok and they would work it in the plan once he got his job. After driving San Antonio recently we were wondering if it would be a good idea. Evan very maturely thought that it would probably be better to ride the bus, he said “People drive crazy in San Antonio”.
He is also already planning his apartment when  he moves back home.  He will live with us a “little bit”, till he gets a job and then get an apartment. Then he will need a bed and some dishes and pots and pans. He wanted the Texas dishes Lee had had in his house in Lubbock, but I sold them in a garage sale. So “we will have to find something else”.
The big graduation should be about Christmas. Before that happens he will need to get a job in San Antonio then move to the apartments on campus and ‘live on his own’ for a few months.
The school is whining right now about the ‘economy’ and hoping it does not affect the students job opportunities.  Too much faith in the world and not enough in our God. God is going to surprise them all!!
Posted in Family

Another has gone home.

Keith’s dad Gerald has died. Gerald has been passively ill for a few years.  Just a few months ago the decision was made that he move to a nursing home, it was a difficult decision. Gerald physically was declining, and mentally declined.  The hopes and desires of course were different, the truth, it was not healthy nor safe for Mary Lou or Gerald, for him to stay home with her.

A week ago Hospice who helps with the care of Gerald, notified Mary Lou that Gerald was actively dying.  This was the beginning, and could take some time.  With my own father it was about a week. The next day, the offer and acceptance of him moving to Hospice house- This was a great relief and blessing.  The house, as Keith described it, was beautiful, it was a ,’home’, it reminded him of Geralds childhood home, Keith had known from visiting his grandparents.  It is an older home, two story, and filled with antiques, the only part not ‘homey’ the hospital beds, but the atmosphere made up for this.
The day after moving to this home, Keith’s brother made it in to town, and saw his father, as it was, just a few hours before Gerald went to his eternal home with our Father.  Gerald left this world, peacefully and quietly, an answer to prayers ,in the quiet of the morning, just he with the Lord.
The out pouring of love that followed was amazing.  The perfect timing ,for so very many to be at the service amazing. The many people that came to honor Gerald, amazing.
This service for Gerald, actually, revived him, in all of our hearts and memories.  Gerald had slipped away from us all, the man we had seen for the past few years, was not the man Gerald had been.  The man Gerald had become died, but the Gerald we knew and loved was honored at the services was brought back to life in our memories. Our Gerald, ‘Big G’, Gia, Brother Petty is alive and well forever more.
Posted in Family

>The PROUDest Grandma!

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She is here!  Our precious little doll, Erin Faith– She was born October 1.
Now one, thus far, to be a ‘shoe in’ to pass some of Nana’s opals to! (Moms Bday is 10/11)
                     Mom would be so proud! She was so very proud of Tanah and Cheyanne.
 Mom loved to show the girls off when they visited her.  I found at least 4 notations of a visit from Cheyanne to Manor Park.— It was just about a year ago, for the October birthday celebrations at Manor Park.  All the honorees were to be presented with cake and their families came to enjoy the celebration with musical entertainment.  Ashton and Cheyanne and Keith and Evan and I were there to help celebrate the evening. At the last minute, the entertainment canceled, so the entertainment was presented by the resident pianist(one of the residents who had taught piano at the college prior to moving to Manor Park who plays very well.)
Cheyanne was about 17 months and toddling well, and of course absolutely gorgeous with the big baby blues and blond curls.  When the piano began to play Cheyanne wanted out of the stroller, so we obliged.  Chey then proceeded to ‘work’ the room.  Went to all the tables and smiled and cooed, then went to the piano player and smiled and cooed, then eyed  the stage and smiled and ran and climbed upon it. Then she smiled and wooed!
All of Mom’s notations were of how everyone told her ‘her great granddaughter was gorgeous, so precious, and much better than any entertainment that could have come in.’  In each note she agreed and said “how very proud she was of her greats, grands, and loved all of her family dearly.” I know Mom just as thrilled with Ty and Erin.  My phone would be ringing constantly until they came to visit and then more to find out when they would come back.
I too am proud,  more than I think anyone can imagine. Even more than Mom could know.   Proud that I am blessed with these grandchildren, with my children, now adults and their wives, my ‘daughters’.  Proud that God gifted me with these wonderful gifts.  They are affirmation of me, of my being.  To see that these families, these children are direct descen-dants, products of my existence, gives me amazing purpose.  God meant me to be, I am no ‘mistake’.  All I have to do is look into the eyes of, Lee, Brian, Evan, Tanah, Cheyanne, Ty and Erin and see a little of me, and KNOW they are His, He has a plan and we are all part of it,and He makes no mistakes..
Posted in Family

Big Sister Princess Party

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Tanah and Cheyanne both are princess fanatics. I am amazed with how very young kids are when they start obsessing with ?? now. My princess stage was around 1st grade– Not 2. But then even we (45 or so years old) just did not have the TV/movie influence — All the movies I saw when I was 1st grade plus, in the theater (late showing, because Mom and Dad never could get to the movies till the last showing about 20 minutes late) are now on DVD, being released from ‘the vault’ periodically. I am so excited to see the first 20 minutes of all of the oldies!!

For months Tanah’s phone conversation with us always consists of her having a princess birthday party soon. The problem is Tanah had a birthday this past July, so the party is quite awhile away. So in conversation, just before their trip to bring Evan home for his birthday, Tanah thought it was a good time to suggest a princess party for Evan… Well that would not work. But Papaw thought surely we could have a princess party AND celebrate Evans party some other way.. So Nonnie told the girls we would have a princess party, a big sister princess party, since Tanah just became one and Cheyanne would be soon. — It was a blast.

Ash let us use her house (mine is still on wheels and I can reach all sides when I stretch my arms out) I found a trunk of princess dresses at Sams, and Keith insisted on the box of 8 high heel shoes too.. We had pink princess cupcakes I found a tea set for our clear rasberry KoolAid, and of course Princess fruit snacks…

The girls oohed and ahhed at the dresses, dressed up without much issue, neither wanted the others ‘goods’ and then came to the table. The , 2 and 3 year olds, who squeel, run, fall and whine and ‘I want’ and pout pretty much 60% of their day,turned into the quietest most delicate, prim princesses — without a prompting one from Moms or Nonnies, they sat so daintily, poured their , tea and held out their pinkies– it was eerie!! But adorable.

God has blessed me so very much– What a joy to play with these little girls! And their moms… They are my best friends.