Posted in Evan

Happy Golden B Day Evan

Yesterday was my youngest sons 23rd birthday. 23 on the 23rd.  A friend, attending his party, informed me it was his ‘golden birthday.  I looked it up. It was.  I had no clue there was such, always thought it neat when it happened that way, (once in a life time) but never knew it meant anything.

Evan was actually due October 8, and with my previous pregnancies reaching exactly 40 weeks, (yes even the first who they say was ‘early) I did not expect Evan to come the week+ earlier.  My pastor/boss and youth pastor/other boss both had predicted the 23rd, separately. I laughed at the coincidence and explained to them, if I went to 39 weeks I would surly go the 40 weeks, with this one too.  The 9 AM of the 23, I was in the beginnings of labor, and Dave, pastor/boss called to see if I was on my way to the hospital, I was a bit peeved that he was right. Soon after he called, Keith made it home from his graveyard shift and we went into the hospital.

Hindsight of my pregnancy with Evan show sticky notes from God, everywhere.  Prior to even becoming pregnant.  Keith and I had discussed # 3 for about 3 years, just after #2 turned 2. We did not want the kids too far apart, age wise.We did not want to be in our 30’s having kids. I wanted 3 or more. Keith wanted 3 or less. Brian was now almost 5 and I felt it was getting to be a big space if we did not do something quick. I knew Keith was getting too comfortable with just 2. The graveyard shift at the PO and the PO was taking it’s toll on Keith.  It was affecting our marriage. We were broke all the time. Brian was in the beginnings of his medical mystery malady (celiac) we had lots of medical expenses and worries. The answer seemed to be another kid, 😉  to me.  God knew what we needed. Evan. 

So New Years Day 1989, after a night of celebration, the boys staying with grandparents, and then we too, because the trip home was too much at 3am. We celebrated and conceived, because the diaphragm was at home on the nightstand. Calculation calendars confirm, 1/1 conception to be due date 9/24-  The ‘deal’ made that early morning, between Keith and I: (by his prompting) If we did not conceive, I would drop this want for another baby. Thank you God!!!!

I wondered and prayed for about 2 weeks, I am a woman of my word, and I was afraid I had just removed my chances of having another baby (preferably a girl).One 6AM, still groggy I turned on the shower and I felt a voice say “ Life as you know it is over.” This is one of my two times in life I have definitely heard that Still Small Voice, God, speak to me, audibly. Laugh if you want, but I know.  The meaning, the knowledge that came from that statement covered much. I knew I was pregnant. I knew this baby would be more ‘impactful’ that the other two. It was a bit foreboding.  I remember telling a friend of my ‘voice’ that day, so I could have a witness, I think. The first question was if it was an ‘all good’ feeling, I told her yes and no. I felt it was exactly as stated, our life would change, our perspective of it. And it did. 

I did a home pregnancy and it was positive, made the OB appointment, for 6 weeks in. Started planning for that little girl. Because I KNEW that is what God meant, at first. What else would turn us upside down, but a girl, after having 2 boys? We had insurance with this baby (#2 had none) so we had a sonogram at 12 weeks. They said they might be able to tell sex. They did. Evan showed us his junk right away. I cried on the way home. I really wanted a girl. I knew this was my last chance.

I got over not having a girl pretty quickly. I LOVED my boys, it was sooooo fun having their rambunctious selves. Their cowboy boots, jeans, whooping and hollering. The way they had fun and only cried when hurt. They were tough and not whiney. They loved to cuddle and wrestle and I did not have to braid or curl their hair in the mornings. I remembered the relationship, or lack of, I had with my mom. Remembered the battles my girlfriends and I had with all of our moms, the hormones.  Boys were/are my blessing from God!!

 My pregnancy was fairly uneventful, as they all were. I do pregnant well. They did check me for extra fluid at one time, because I was measuring so large, did extra special sonograms. Turns out, the other two pregnancies had let me be a bit more elastic I guess, so I ballooned more. I think now, hindsight, this was the opportunity missed, for us to see Evan’s cleft/malformed mandible. This was far enough in the pregnancy they should have seen it. Alas, hindsight.

More of the issues Evan got to have are posted on Evan K. 

I have been blessed beyond understanding.  Evan has taught me what ‘normal’ is. Normal is conforming, normal is living for the expectations of everyone else. Normal is fitting into man’s mold. Exceptional is what God allows us to be. Evan is exceptional. Through Evan, God has shown me man is limited by man, not by God. God has shown me through Evan what it means to be strengthened by Him. That the weakest, by man’s standards, is made strongest by God. 

Evan hopes for more than he has, a CDL, a new car,a girlfriend, a wife, children, his hopes do not diminish, even when the reality of his hopes seem impossible. Evan does not get depressed. He does not complain. Evan has shown me what it is to be content.

I have learned unconditional love from Evan. Evan does not receive love from many, but he gives it to all. Evan also know’s what it is to love the creation he is in God, something I have struggled with most of my life.  

Evans Birthday is a celebration of his birth and my rebirth.

God put it perfectly, the day he told me of his creation in me, “Life as you know it is over.”

Thank You God, for every golden day with Evan. 

Posted in Evan

Challenge post 16 – A picture of someone who inspires you

I have changed this Day Challenge to Challenge post– I blog when I steal time. Don’t ask me what I am doing that keeps me from blogging every single day- I don’t know!!

Any way, challenge post 16- Someone who inspires me.

Looks can be deceiving.  I don’t suppose to many this guy looks exceptional. He actually looks a bit goofy, most of the time. How could he be ‘inspiring’?

This is Evan, my 22 year old son. Not the best looking of the three, not the smartest of the three. And by worldly standards not the most successful. Compared to the rest of the family, it does not seem like he has much to inspire anyone with.

Evan though is an inspiration to me, and could be to just about anyone who bothers to look. This young man has dealt with more exclusion and prejudice and judgement because of his outward appearance than I will ever have to, than most of us will ever be dealt. You may think it ‘okay’ because he really does not understand. Not an excuse but many times we do allow such behaviour because the recipient is not aware of the treatment. This is not the case of Evan. Evan has the mental capability to understand. Evan is not mentally disabled, he does have some learning disabilities from brain injury from a stroke, but this has not affected his ability to understand. Evan has to work a bit harder to comprehend some things, like money and numbers. Evan has to work harder to make the words get from his brain to his mouth. Evan has to think about swallowing all the time, or he drools. Evan has to turn his head to see to the left, glancing does not work. Evan has to decipher conversation that comes at him, words like the, that, more, less, when, where, how, etc just don’t compute for him. He took the drivers test several times because words like curve and turn mean the same to him, but they do not on the test. Evan has to smile a crooked smile, due to nerve damage, when his ‘friends’ at church discuss the gathering they will have soon, and who they have invited or need to invite, and never include him. Evan lives a life in the middle. He is not normal enough to be included and he is not disabled enough to be included. But he includes himself anyway. Evan has to repeat himself many times, sometimes never being understood completely, just to pay a compliment. Having a conversation about his wants, his interests, just to talk, is not something he ever gets to do, people just don’t have the time to listen.

Me? I exclude myself from so many things because I just don’t fit in. Or I don’t converse because someone in the group has been rude or talked badly about or to me. I am self conscious of my fat belly. I try to camouflage my wrinkles. I concern over others thoughts of my blog, my writing, my art, what if they don’t like it? I don’t attempt because I fear failure. I am not friendly for fear of rejection. I excuse myself from speaking to others whether it be gluten free talking or sharing the Gospel, because they may not understand.

Evan has so much less to inspire with, yet he does a much better job than I ever have.

Posted in Evan, Exhort Pray Praise...

Made me cry: The Story of Ian & Marissa

Watch this first. Then read on. The Story of Ian & Marissa « Chief of the least.

Fellow blogger posted the above link. Man, did I cry!!!! It is a beautiful example of unconditional love. Faith in God. Hope. Trust. For me though it goes beyond that, it is very personal.

I pray almost constantly for a ‘Marissa’ for my Evan. I started a book with characters based on Evan and the woman of my dreams, my hopes. I falter. I doubt. I concede to thoughts that there are many men, even ‘normal’ men who never find their loves, who remain single, that it may not be in the ‘cards’ for Evan to marry.

Evan wants a wife, he wants a companion, he wants for someone, other than his mommy and daddy, to love him, want for him. Evan wants a family, of his own.

Evan attended ‘school’ at Southwest Center of Higher Independence http://www.mmhome.org/schi, an almost 2 year education of life skills, job skills, and independence training. At graduation each student spoke on their experience and their goals for the future. Many of the students have language disablity or inability in some form. Evan spoke, in his halting fashion, missing words and incomplete sentences. But it was clear and complete when he said ” I would like to have a wife and kids, like my Dad and my brothers , Lee and Brian.” Oh how I want that for him!

Evan has issues. He does not speak clearly. The language deficit also messes with his comprehension of things, sometimes. He does not comprehend ’cause and effect’ of money, life. Supply and demand of money. He has some nerve damage in his face so sometimes he drools a liitle, when he forgets to swallow. He has trouble prioritizing. Heck, I know a lot of ‘normal’ people that have these issues, and more!!!

Evan has a lot ‘right’ about him too. He is a fairly attractive guy; thin, blue eyes, dark hair, and alot of it. He is very kind, he cares for people. He is a good listener, because he does not talk well he tends to listen more. He is out going, and extravert, go figure. Evan is an electronic whiz, games, computers. He is an excellent driver! He has a job. Evan does not let his disability define him, he does not have a ‘bad’ attitude about being different. He is not a whiner, or give excuses for failure. He is much more than a lot of men that are deemed as ‘normal.

I am reading of Abraham sending the servant to find Isaac’s Rebekah. How often the family did arrange for and find a wife for the son. I thought maybe we should, we need to help Evan ‘find’ a companion. But how? How does Evan find his Marissa? His ‘her’ will have to find him attractive now, with all the flaws. His ‘her’ will have to allow him to approach, in spite of his oddities, to see that he has an amazing heart and soul.

Marissa and Ian have given me a new hope. God has shown me through this that He is in control. I have hope that somewhere someone is out there with a heart being formed and fashioned for Evan. God has a plan.

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 Evan

Chef Evan

>

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!!