FEAR

FEAR.

an unpleasant emotion caused by the belief that someone or something is dangerous, likely to cause pain, or a threat.

Yes, I'm afraid.  There is something incredibly dangerous and threatening in our world, and we cannot escape it.  It's a part of us.  And the sad truth is--- if and when it leaves, it will be devastating; there will be no reason for living.  

I'm trying to adjust to living with fear and not letting it control me, but right now it's nearly impossible.  I feel this dangerous beast is attacking us at all angles, reminding us just how present and in control it is.  It has a strong hold of multiple body systems.  It holds J's words captive and steals his comfort and joy.  It is a liar, a cheat and a thief.  It's a destroyer.

I want to give you an idea of where my head is at, in this moment.  It's not pretty.  I'm not in a good place, and if you lived with this fear and this destroyer, you would not be either.  But the truth is, there are very few who understand this place where I'm at.  There's few who live it and even fewer who would admit it.  I'm alone, and that adds to the darkness.

If you've read our previous post Too Much you're aware that we have received some troubling, surprising and somewhat devastating news in the past couple of weeks.  It hasn't stopped there.  We've had another 2 ER visits, several doctors appointments and some new developments.  The fear just compounds and multiplies.

J has had two different interesting urinary concerns pop up, which have resulted in ER visits.  They are a little personal, so I'll just leave it at that.  But I'm growing more and more concerned about his urinary tract that we haven't yet explored.

More concerning has become the fact that for nearly NINE DAYS Jayson has struggled to walk without identifiable cause.  He falls several times an hour, opposed to his usual several times a week.  He takes 3-5 steps before sitting, falling or grabbing hold of something when he used to walk 3-5 minutes without support.  He cannot maintain a stand without losing balance.  He reaches for me continually, not wanting or incapable of walking on his own.  He used to love the challenge of stairs, and we would hold one of his hands or fingers and help him navigate them both up and down.  Now, he attempts the first step and collapses.  It's not an issue of motivation or desire; we've tried exploring that.  It's a matter of ability, a matter of regression, and that word cuts me to the core.  

Jayson has not been one to regress, except during illness, seizures, and surgery.  His only area of regression has been in communication and oral skills such as eating and speech, never gross or fine motor.  For the first time ever, Jayson is regressing.  It wasn't a bad day, not even a bad week.  It's been a bad 9 days, and I'm scared that he may not bounce back.  Why is this frightening?  Because my son is UNDIAGNOSED.  Until now, we have never even considered the possibility of him having a regressive genetic disorder.  He never fit the symptomology.  Now he does.  Overnight my fighter has all but lost the skill he worked 3 years to gain, and I have ZERO explanation why.  He is completely healthy; no illness.  His seizures are well controlled by the diet.  The MRI says his chiari is fine.  There is no intracranial pressure.  All there is, is Jayson's genes.  Jayson is also regressing in muscle tone.  He has become very floppy and hypotonic again, and is struggling to maintain a sit in his high chair and on the floor.  He is difficult to get into his car seat and wheelchair due to his low tone.  So he is regressing essentially in muscle tone, which is bad.  Regression is very bad.  And in case you were not aware of the unspoken word tied so tragically to the word regression--- death.  If a child has a regressive genetic disorder, it nearly always ends in death.  So maybe my fear is a little more justified.  Maybe, it's more easily understood.  Maybe you're feeling it now too.  Maybe, I'm no longer alone.

The past 2 days Jayson has been very sleepy.  He has taken 3 naps, and slept in for a long time in the morning.  He frequently signs for bed and lays down throughout the day.  His eyes are heavy and he is exhausted all day long, for two full days.

The past two nights Jayson has struggled to keep his oxygen up as well... on BIPAP... and on oxygen.  He has woken us up gasping for air as his alarm starts beeping and we find his O2 saturation levels in the 80's, and they aren't coming up.  We have awaken to the startling sounds of his pulse oximeter alarms notifying us he is desaturating in O2 only to find him apenic, holding his breath, not breathing until we stimulate him to remind him to breathe... on BIPAP... on oxygen.  I don't think I need to tell you that this isn't good.

It seems the list of issues is growing rapidly, and my ability to sleep comfortably is decreasing.  Only this time, I don't know what to research.  I don't know who to contact.  I don't know what to do about it, because I have no signs.  What do you fix when the thing that needs fixing is likely his genes???  I'm hoping I'm wrong.  I'm hoping my fear is being wasted on something trivial.  I'm hoping my child wakes up incredibly ill in the morning and I have an explanation for all of it.  I'm praying for that very thing, actually.  Sick and strange, I know.  But right now a terrible illness that effects his respiratory system and muscle strength sounds better than a death sentence, so yes, I'm hoping for an illness.

We've seen his pediatrician, who has no ideas or explanation.  He believes this is not concerning as long as Jayson isn't vomiting or lethargic.  Well, he's suddenly become lethargic so we will see if this will catch his attention now.  We were seen in the ER, but his other issue was more pressing so nothing was explored or discussed.  We plan to reach out to Dr. M, our Comprehensive Care doctor this week.  Our appointment with her isn't until November, but I'm hoping we can move it up or get on her cancellation list.  Other than that, the only other thing I can hope for is that we get our Whole Exome Sequencing results back soon.  They may not contain answers I want to hear, but I can't live like this.  I can't keep wondering every day if my baby is dying.  I need to know one way or the other.  I need to know if this will be just a minor setback or if this is the sign of harder times to come.  I can't keep living in fear.  I need answers.

I hope this explains a little more about how I'm feeling and how I'm coping.  I'm not.  I'm struggling big time.  And I have to put on a happy face, go to work, do my laundry, wash my dishes, send my child to school, and act like it's all okay.  The world keeps turning.  But right now my world feels like we have pushed the pause button in the middle of our story, and we are all waiting to see how this will play out.  I'm hoping, wishing and praying with all of my heart that this story has a happy ending.