He knows it’s scary to be us…

“He knows it’s scary to be us” (Beth Moore)

Yes, He sure does.

Our youngest son came when our oldest son was 16, and our daughter was 11.  He was a surprise, and a blessing.  He has brought us so much joy.  When he was 6 months old, he was diagnosed with Alpha-1 Antitrypsin Deficiency, which means that his liver makes enzymes (as any healthy liver does), but his liver also makes just as many mutant enzymes which attack the liver and the lungs.  This is a genetic disorder that runs in our family.  My dad had two brothers born with this disease (his oldest and his youngest).  Both died at age 17.  Jackson has a milder case than what they did though, and for that, I am so very thankful.  But, ever since we heard those words, we have had to be on high alert for anything that would cause him to get sick or to cause his immune system to become weaker.  And, because he has Alpha-1, he is very susceptible to autoimmune diseases.
God has really blessed us in that He has carried him through so many illnesses and times when it seemed that he would come out with some kind of damage, but didn’t.
He has always been sickly (as my grandma would say).  But healthy, nonetheless.
When he was becoming school age, we were told by his doctors that he may have to be homeschooled and not allowed to go to school, but he was doing so well that when it became time for kindergarten, his doctor said that he thought it might be a good thing.  When he started school, he loved it.  He loved his teacher and his new friends.  He enjoyed almost everything.  He was a little clingy to me, but nothing major.  But, he got sick more often.
It seemed as if we were going to the doctor every other week for throat infections or earaches or such.  He missed a lot of school.
We finished kindergarten well and had high hopes for first grade.
One day during the first part of his first grade year, he got sick at school.  He had a fever and when I was called to come and get him, his fever was 104 degrees.  He spent that week at home.  That is when he began to change.  It was subtle at first.  It began with him not wanting to wear certain clothes because they felt bad or scratchy.  I thought he was just being picky.  Then he developed severe separation anxiety (nothing at all like “clingy”).  Taking him to school each morning was torture.  He would start crying as soon as he woke up and cry all the way to school begging me not to take him.  He would throw up each and every morning.  It was torment for both of us.  I thought that maybe he was being bullied or something like that, but he wasn’t.
Then we received his second report card during Christmas break.  It wasn’t anything like it had been in kindergarten or the first one we received at the beginning of his first grade year.  He had dropped in almost everything.  When he was at school, he was shutting down.  That is when we decided (with the Lord’s help) that we had to do something, so we took him out of school to homeschool him.  It was just what he needed, but it didn’t stop the strange behaviors.  The ones he had were just replaced with new ones.
A few months later, he began to show signs of OCD behavior.  He began turning the light switch off and on a certain number of times until “his brain would let him walk away” (his words). He began to have terrible fears and phobias of death and dying.  He started making strange sounds, like throat clearing, and showing signs of tics.  He would get overly emotional which was unlike him.  He became afraid of everything.  His handwriting became almost illegible.
Looking back, it seems that he would get worse when he was sick, and when he wasn’t sick, he did better.  And each time he got sick, he developed a new OCD or new tic.  He calls it his “touching” because he has to touch everything a certain number of times before he can leave it alone.  Gradually, the times got longer and longer.  He would cry as he was doing it and say “help me to stop”, it was so sad to watch.  It was taking over his life and we were watching him slip slowly away and not being able to stop it.
So, I did what I do best…..google it.  I googled everything I could find on children having these same symptoms.  Finally, I took him to his doctors and presented my case (I was so afraid they were going to look at me like I had three heads) and, they diagnosed him with OCD, severe anxiety, and Tourette’s.  We had no idea what most of those were, so we had to school ourselves.  And, school ourselves we did.  During our visit, his doctors suggested some medicines he could take.  Because of his liver disease, we have to be very careful with giving him any kinds of medicine.  So, we opted to try to help him without any meds at that point.
This was in the spring of 2013, and we made it medicine free for a few years.  But, sadly, we had to start him on medicine after all.  It has been a positive and healthy thing for him though, and for that, I am thankful.

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