Posted in Exhort Pray Praise...

The God of Peace Be With You

 Phillipians4:4Rejoice in the Lord always; again I will say, rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. 7 And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

Have you witnessed the peace that passes understanding? Those who have had husbands, wives, children die and they quote scripture and speak of the joy the loved one is experiencing, and the day of being reunited. The one with a terminal disease who is more hopeful and joyful than you, (whose only complaint today is too long a wait at the grocery store). Have you wondered on, or even criticized another for their lack of distress at the loss?  The world tells us we should wail, and beat our chests. We should stop eating, singing laughing, living, when we have trials. The world says we should be overcome by this world that comes against us. Yet God tells us to rejoice in the Lord.Always.

26 years ago between  September and December of 1989 my reasonableness was questioned.

September 23, our third son was born with Pierre Robin Sequence. In Midland they were clueless as to what to do with him choking on his tongue when he cried, so they decided to tie his tongue down. Turns out the surgeries they did in the first 2 days of his life actually did him more harm than the tongue in the way did.E with button

Our second son, who was 5 ,at this time was having what we called attacks, he had been having these since he was 2. He would go pale, his heart would race and pound so hard you could see it in his little chest. He would not be able to move for a few hours, for the pain. (5 years later found it was esophagus spasm aggravation from Celiac disease) Every 2 weeks we would race to the ER to meet the pediatrician who would scratch his head and send us home till the next time.   Scan 127

The Midland doctors insisted we gavage feed Evan, running a tube through his nose and pump in the milk.  Not being able to breast feed, I pumped, for about 5 weeks, until I realized the big boys needed mom time more than Evan needed breast milk.

Evans specialist/surgeon was in Dallas, a 5 hour drive from home. He was an excellent doctor, and probably reason Evan still here today, but ….. The instruction he gave us on the care of Evan,when he untied the unnecessary tongue adhesion.  Until his chin grew and he became strong enough for cleft surgery “ Lay him on his stomach, so he does not choke on that(tongue) and hope he keeps breathing.”

Keith worked graveyard shift at the Post office. Leaving me each night to put everyone to bed, and wake too often alone to see if the baby was still breathing.

Just after delivering the baby, while still in the hospital I had my tubes tied. The last trimester of the pregnancy I had a HORRIBLE chest cold and cough. The air they pumped in during surgery put too much pressure on my ribs that had been weakened from the coughing. I sneezed and cracked a rib, the week after I delivered.

Then, six weeks after Evan was born, on November 1, my brother, Kirk, fell in his driveway and hit his head. He died 2 days later. We dropped our older boys off at a friends house, and drove to Austin, sat in the waiting room of ICU for 2 days, with family and friends, and Evan laying on his stomach in a stroller.  We said goodbye, until we meet again,  to Kirk on November 3, drove home to get boys and drive to funeral ‘at home’ in Lubbock. Scan 13

We moved to a new home by Christmas and hosted that for all the family. Mom and Dad and brother Mike and Kirk’s fiance. Evan was not thriving well, he could not eat and breath at the same time, and burned everything he took in trying to breath. I stupidly agreed to his first immunizations, and he had a horrible reaction the the DPT and MMR-

Scan 128

A couple of days after Christmas, the boys were playing with a new friend across the street, Lee came running in the house screaming Brian was hurt, bad. A little Tikes car had fallen on him.He had a compound fracture of his arm- both bones. (he had weak bones from that damned undiagnosed celiac)

Sometime during this time of tribulation, I was in conversation with my still mourning mom, she voiced a concern my cousin had for me. My cousin herself had been through some stress, a divorce, a move, a job change, and per some counseling advice and a Readers Digest article, I was due a nervous breakdown  According to the experts having more than 3 major life changes, good or bad, you were in danger. I had at least 10, mostly bad, which got you more points.

I look back at this time, and about a year beyond of a bit more and remember the sadness, but not despair. I remember the loss of dreams, and even some hope, but not faith. I know I prayed for healing of my brother, and cried the healing was not for us to experience. I remember my concern for my children’s health even the fear of losing them, yet never afraid. I cried, I sobbed, I questioned why. I prayed.  Yet I never panicked. Never did I lose my mind, my heart, my strength. I was actually stronger then,than I think I ever was. I had THAT peace.

Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things. What you have learned and received and heard and seen in me—practice these things, and the God of peace will be with you.

Evan has something about him that blesses those who know him. IMG_4723Celiac is EASY to fix, just don’t eat wheat and we are healthy. All of grandchildren who have Celiac have not had to endure the illness and damages from undiagnosed Celiac, as Brian did.  DSCF3431

Brian is a healthy strong brilliant godly husband and father. DSCF3418 Bones heal.DSCF3144Heck, all my boys are Godly Men!

Kirk’s daughter is a gorgeous successful mother of 2 daughtersimage_6.

Evan choked on food when he was  10 months,  and because I had gavage fed him I was able to assist the paramedics in finding his airway, when they could not. Scan 67

Evan was almost 9lbs when he was born, this weight sustained him during the time he could not eat well.

I am an expert on gluten free living, and have somewhat of an income from that.  i do

In all things, even the most heartbreaking, I can rejoiceDSCF3138. Tribulation is for a moment, and that peace that passes human understanding is eternal in Him.   DSCF3058

John 16:33 I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”If you don’t have that peace, it is not hard to get– It is a gift.

Ephesians 2:8 For by grace you have been saved through faith. And this is not your own doing; it is the gift of God,DSCF3014

 

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

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.