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.



Aspiring to be the Christian Gluten Free Queen of the World. I love writing/blogging, painting, decorating, grand mothering, cooking, helping others BE gluten free, old movies, family, God, animals, my kids, my grandkids, my husband, talking about adoption. I know about painting murals, cooking gluten free, being a mother in law, special needs, cleft palates, Pierre Robin, Celiac, marriage, faith, God, sons, dogs, cats, gardening, a little bit of horses, building a house and living life blessed.

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