Blog

  • Clean Sheets

    While snuggling down into bed, I began to think of how wonderful clean sheets feel.  From there, I began to count my blessings.  These are the thoughts I had.

    1.  I am thankful for clean sheets.

    2.  I am thankful for a machine to make my sheets clean.

    3.  I am thankful for power and water to make my machine work to make my sheets clean.

    4.  I am thankful for good health to be able to remove the sheets and put them in the machine to make my sheets clean.

    5.  I am thankful I have food to keep me healthy to be able to put the sheets in the machine to make them clean.

    6.  I am thankful I have dishes to put my food on to make me healthy enough to make my sheets clean.

    7.  I am thankful I have a table to put those dishes on so I can eat and stay healthy so I can make my sheets clean.

    8.  I am thankful to have a roof over my head to cover the table, the dishes, and the machine to keep my sheets clean.

    9.  I am thankful to have a bed to sleep in so I can stay healthy and keep  my sheets clean.

    10.  I am thankful to have a family to snuggle down with in the bed so we can all enjoy the clean sheets!

    11.  I am thankful my family loves each other and has good health so the laughter comes easier while we snuggle in the clean sheets.

    12.  More than all, I am thankful to have a Savior who is sufficient enough that even though I may not have any of those things, He will supply my every need.

  • Bigger’s not always Better….

    Steve and I joined a church this morning.  This church has no great programs for anyone between the ages of 0-100.  It has no programs for singles, divorced, married, or widowed people.  It has no elaborate sound systems, no big loud bands, no people dressed in $300 jeans with spiked hair and shiney black squared off toe shoes, no video screens, no praise music, and to boot, the pastor is present to shake your hand after church.  This church, by today’s standards, is everything “not cool” about church.  The one thing it has that shines brighter than all the technology, programs, multitudes, and slick words is Jesus.  The service is enriched in the true worship of God.  It isn’t saturated with the basic “ME ME ME is why You are YOU, and why you do what you do” nonsense.

    I have to say, Steve and I were sold on the church the very first time we sat through a service.  Several times, we were brought to tears with the humbling nature of the worship.  I cannot remember a time I have personally been touched so deeply by this little, tiny church in an itty bitty town in Alabama.  The first service, we were warmly welcomed with smiles, hand-shakes, and  joy in the faces of those who were truly happy we were there.  That particular Sunday, there were a total of about 15 people there, and, besides me, Steve, Asher, and the pastor, no one was under the age of 60.  Most were quite older.

    We left the church certain this was where God wanted us to be.  However, we had a deep concern over the fact there was no one there with kids Asher’s age.  Steve emailed the pastor and told him our concern, and his response was incredible.  Basically, he said that everyone in the church deserved the very best everyone had to offer:  this included Asher. The answer he gave was awesome, but we decided to “try out” other churches.  We made it to 2 other churches before we said, “Forget this!  We are going back to OUR church!”.

    So, why did we decide to go to a small church?  Well, first of all, we knew this where God wanted us to go.  Secondly, we knew that there we could gather with others to truly worship God.  Thirdly, this church family would know we existed and desire the best for our spiritual life.

    As far as Asher is concerned, what good are all those fancy programs if Daddy and Mommy are getting fed junk food on Sunday morning?  If the parents are eating good, healthy food, the kids cannot help but see that and do the same.  Asher’s spiritual life is being built in watching his parents and his church family come before the LIVING GOD in true worship and in true humility.

    Oh, there is one more reason why we joined the church.  The pastor was quick to point this out.  Velma’s sausage balls are kickin’ it good…

     

  • We are People Too, ya know…

    Today was our first appointment with the geneticist.  We were to find out the results from the test for a metabolic disorder.  From there, we really had no idea what they would do.

    The appointment was set for 1:30, so we left a bit early to go and get the delicious Gus’ Hot Dogs to take to the park for a picnic.  We had a great time at the park eating, laughing, and watching the trees blow in the wind.  After teaching Asher about cleaning up after yourself at the park so the next family could enjoy their picnic, we headed off to the doctor in plenty of time.

    Once we got to the doctors office, we settled in for the wait.  Asher ran all over the waiting room giggling and doing his notorious “whale call”.  It was ok because there was only one person in the waiting room to bother, and she didn’t seem to mind.  15 minutes pass…20 minutes pass…30 minutes pass…  By this time, Steve was getting a bit irritated, “This is ridiculous!”  We were taking our parental turns playing with Asher in the waiting room when I realized we had been in there for over an hour!  Finally, after an hour and a half in the vacant waiting room, they called us back to a room.  Steve and I figured out a little game to play with Asher while we waited another 20 minutes for someone to come into the room.  The genetic counselor came in to get a history, and by this time, I was good and pissed off.  I tried so hard to think through the red fumes in my mind.

    Once she told us he did not have the genetic metabolic disorder (YIPPIE!), got our history, and left the room, we had to wait another 20 minutes on the doctor.  Now, it seems, Asher may have a chromosomal disorder.  We were going to have to go through another battery of blood test which would take a month to get back.  Thankfully, though Steve was raging mad, too, he could understand what she was saying.  I was so blooming ticked that I could hardly understand her thick accent.

    After 2 and a half hours in this office, we never once received an apology for her extreme tardiness.  Not only did we have this long wait with a tired child, but we still had to go to Children’s to get his blood drawn.  It was already 5:00!

    I have gotten to the point in this journey that I’m not terribly concerned about what is causing the issues with Asher.  I just want to help him through whatever he needs during the day.  I want to help him to learn how to communicate with us.  I want to help him to be a stronger kid.  I want him to find happiness in this sometimes frustrating world.  I trust the doctors to do what they know best, and I will most definitely be a very involved parent in the decision making process.  However, today, I realized that the “Why” is not as important as the “How”.  How can we help him?  If figuring out “why” will help him, so be it.  If not, lets just do what we have to do to help him.

    He is in speech, occupational, and physical therapy.  He has wonderful therapists through early intervention who are incredible with him.  He really does love them.  Mommy appreciates that they are loving and instructive, and furthermore, on time.

    The events of today would have tried even the sturdiest of wills.  Though we are not medical doctors, we are people, too.  We have professions, hobbies, friends, and families just like the doctors.  We are worthy of a bit of respect.  And, I can guarantee, Steve and I are much more concerned about the well being of our child than all of his doctors and therapists combined.

    Maybe I should have waited until tomorrow to blog about this day.  Maybe a good night’s rest would have tempered my rage over being disrespected.  However, if you are a normal “people” like me, you a probably shouting a big, “A-MEN” to this blog.  And, if you are a doctor, thank you for your years of learning to help us cure our meager bodies.  Please remember though:  we are people too, ya know?

     

     

  • Just Find it and Fix it

    Just Find it and Fix it

    After a long fun weekend, we packed up and headed to Birmingham for not so much fun.  Asher was scheduled to meet with the neurosurgeon at Children’s for the first time.  He was tired of being in the car, and I was nervous.  I had some idea of what we would hear, but I was surprised, too.

    Children’s is an awesome facility.  The lay out is set for kids to feel comfortable in their surroundings.  They even had clowns on hand for face painting.  While I filled out paperwork, Steve and Asher walked around to check it all out.  Ash even got balloons painted on his leg!  If it wasn’t for all the yucky doctors, it would be a fantastic place to visit.

    The neurosurgeon was a very nice man.  He took a look at the MRI, studied Asher’s head, and told us the news.  He saw nothing that concerned him with his MRI.  Yes, the cyst was a category 1 or 2 (which is small), and yes the water around the brain was there, but the amount was not enough for any concern.  Great news!  However, when I asked if these things would be causing him developmental issues, he said no.  It may be a genetic disorder.  “WHAT?”  Asher has a ridge on his forehead where his skull didn’t grow together correctly.  This plus the developmental issues point to genetic problems. He called a colleague to tell him what to order for the blood tests.  He also ordered an X-ray to study Asher’s skull to make sure there were no other problems.

    We waited for the genetic doctor to fax over a list of possible disorders.  When the fax finally arrived, there was one disorder.  One disorder with a 5 page synopsis of the disorder.  It is called GA-1.  It is a metabolic genetic disorder which prohibits the body from turning Gluteric Acid into energy.  Most of the symptoms Asher has could be explained by this.  However, we will not know the outcome of the blood tests for another month.  If the test comes back positive for this disorder, we will have to implement a lifestyle change that will follow him throughout his life.  It could be very dangerous.

    Basically, we don’t know anything.  I just want them to find out what is going on with my  precious fella and FIX IT!!!!   I’ve spent a majority of my life putting doctors on a pedestal, but now I understand why they call medical doctors “Practitioners”.  They are just really smart people who are trying to figure it out.   I’m not blaming the doctors.  They are doing the best they know how.  I’m just impatient.  I want to know what I can do to help my boy.  Right now, Steve and I are fumbling through all of the medical mumbo-jumbo in hopes to help find the needle in the haystack.  It has been a horrible journey.  This road continues before us.

    Some would be so bold to say, “Just trust the Lord”.  To this I respond, “Well…of course I do!”.  However, I am human.  In this state of being, I am a sinner.  Therefore,  I generally fail more than fly.  Trust in the Lord only comes from the Lord.  In and of myself, I tend to be more like Job than Jesus.  Just being honest here…please don’t crucify me.

    I want to thank everyone for their prayers.  Many of you have asked what is going on, and I am certainly willing to discuss it.  To be honest, though, it is easier to write it down.  Every time I talk about it, my frustration goes out the roof.  I love you all.  I just want my boy to be well.  My heart is trying very hard to  not shatter on a daily basis.

  • Fresh Pain and Paint

    One day several years ago, my husband and I decided our home needed a little “pop”.  From that moment, we have been working on painting different areas of the house.  Each time we finish a room, we sit back and enjoy the rewards of all of our hard work.  As time passes, we walk into a room without a thought to the colors around us.

    Then, day before yesterday, I walked through our beautifully painted living room to our pantry.  I reached in to get something, bumped the brand new bottle of Ragu, and got nailed on the top of the foot.  I stood there a moment wondering whether or not I needed to call for help or just suffer for another couple of hours till my husband got home from work.  After a while, the pain stopped, I limped around for a while, and now, I’m back to normal.

    I know it seems like a stretch to compare these two concepts.  They are such a contrast to one another.  However weak the link, I have been pondering on this idea of how people just do not understand a feeling they have never had.  Before my husband and I painted our home, I had never painted, thus not understanding that particular feeling of accomplishment.  Before that Ragu bottle fell on my foot, I never understood how people feel like they want to throw up when they hurt themselves severely.  You just do not know till you feel it.

    Then the unexpected happens.  Like a sharpened pencil, you write those memories down in your mind, the feelings become dull just like that pencil.  They are still there, but they have lost the intensity because of time.

    I do have a point to all of this.  We go through this pain and triumph for a reason.  Maybe for many reasons.  I do believe, however, that part of the reason is to be able to not only help someone out, but to also really and truly comprehend the gravity of the situation.  And though it may not be fresh pain or paint, we can still relate.

     

  • The Mountain

    “Son, we have talked about this!  Do not play with the trash can lid!  Come on, lets play with your cars.”  As usual, Asher turns around and goes right back to the trash can, and the conversation begins again.

     

    Though my child is much like others in that he continually falls into temptation and fails to resist, he has always seemed a bit different.  When all the other kids his age were turning over and trying to crawl, he was perfectly satisfied to lie on the floor and stare at the lights.  When his peers began to crawl and pull up, he was content to push with his legs and scoot across the floor on the back of his head.  He would not even pull up to a sitting position on his own till he was 12 months.  At 14 months, he had gained the ability to scoot across the floor on his booty.  He had finally mastered pulling himself to a standing position in his crib.

     

    By his second Christmas, he began to toddle about most uncertainly.  At 17 months, he was finally walking.  We would silently giggle at his gait, frequently stating he looked like Fred Sanford.  It was cute.

     

    Then, the falls started.  One big bad one a week causing a monster sized goose egg on his forehead.  Same spot every time.  His new doctor had consistently commented on his head size.  After all of the falling down, strange gait, and overall wobbly walking motion, she scheduled an MRI.

     

    This week, we went in for the test.  Of corse, a 19 month old and a MRI machine are not a match made in heaven.  For the test, they had to sedate him.  I kept telling him it would be ok, and that the drugs they would give him would just make him very sleepy.  One mommy, one daddy, and 3 nurses held him down for the IV.  He may be a bit behind in some things, but that boy has one serious fighting spirit.

     

    After the test, Asher woke up loopy.  It was kind of funny the way he was playing with the nurse’s name badge though she insisted he stop.  I held him in my arms and waited until they said it was time to go home.

     

    A couple of days later, I called the doctor to see if they had the results.  I was not expecting the news:  he has a cyst on his right temporal lobe and a small amount of water on his brain.  WHAT????????  This test was supposed to come back NORMAL!!  I asked a few questions to the doctor, told her thank you, hung up, and called my husband.

     

    If you have ever been sucker punched in the stomach, you will understand the feeling I had when they told me the results.  I wanted to throw up, scream, cry, and pitch a justified fit.  However, the only thing I could do was dial my husband’s phone number.  I held it together for maybe 3 minutes before the tears came.  I called my sister and she kept saying, “Autumn!  Calm down!  I can’t understand you!”  It is all consuming fear.  It is just all consuming.

     

    Once I pulled myself together, my husband had gotten home from work.  “I’m going to the store to get diapers.”  I drove along in a numb state.  At the grocery store, I pushed my cart to the familiar aisle, stared at the diapers, and pushed back the tears.  “Autumn, do not loose it in the grocery store!!  You have to see these people all of the time!!  HOLD IT TOGETHER!!”

     

    I left  the grocery store, made it home, walked inside, and crumbled to pieces in my husband’s arms.  How could my precious little boy have something growing in his brain that should not be there?  I wanted to fix it.  I wished I had the power to reach into his head and remove that damned cyst and water so he would be ok.  But, I couldn’t.  All I could do was stand there.  “Function, Autumn…YOU HAVE TO FUNCTION!”  And, so I did with the added weight of a rock in my gut and a knot in my throat.

     

    At this point, we were uncertain of whether the cyst was benign or malignant.  We did not know what it meant as far as his development was concerned.  All we knew was the basics, and the basics were just not good enough.

     

    The next morning, my very distressed husband called a friend who is a neurologist.  He was so kind.  This wonderful doctor actually pulled the MRI results, read them, and called my husband to tell him the cyst was not malignant.  Praise God!!!  He also stated the water around his brain could be causing the developmental delays, but there wasn’t enough to warrant a stint.  However, Asher’s neurologist would have to read the MRI himself to decide.  We still have to wait till the end of June to find out.

     

    In the meantime, Asher had a follow-up visit with this primary doctor to check his ears.  We talked for a while and made tons of appointments to help out my little man.  First one was the ENT.  After our visit there, the ENT decides Ash needs tubes.  This news seemed like rose petals and bon-fire songs compared to earlier in the week.

     

    So, now, we just push forward with doctors appointments for vision, hearing, early intervention, neurologists, and out patient surgery.

     

    My beautiful, wonderful, sometimes sneaky little boy is the highlight to my life.  He is the underscore to my lovely poems.  He is the smile on my face, and sometimes, the roll of my eyes.  My husband and I will push down the mountains if it means he can live a happy and healthy life.  Though we will have to call in the reserves to help us push and call on God to give us the strength and faith to keep going, those damn mountains are coming down!  Of this, I am quite certain.