Worry With Me

It has been a long time since I have felt this feeling.  For over a year my heart has been free from paralyzing fear.  For over a year I have felt more hope than impending doom.  For over a year I have had faith that maybe the worst is behind us and the future is bright.  But today I am fearful.  Today I am afraid of hope.  Today I don't want to think of the future.  I just want to hold my baby tightly and pray that we can freeze time in this moment, and not have to know what tomorrow might bring.  It's been a long time since I have had that feeling, but I recognize it.  And I hate it.

For the past year, 99% of the news I have posted has been positive.  Jayson has been hitting milestone after milestone.  He is improving in absolutely every area.  His health has been stable, and there have been strides in some areas of his health as well.  I expected set backs.  I haven't let myself get pulled into a false sense of security.  I know how quickly things can change in the lives of special needs kiddos, so I just try to be hopeful and grateful for these blessings and gains.  Well, we've had some set backs, as I expected.  But they have been accumulating.  They have been collecting.  And I'm starting to put puzzle pieces together and fear is setting in.

• Horrible sleep patterns since December
• Substantial increase in seizures in past 4 weeks (sometimes over 20 a day)
• Substantial increase in strabismus and eye movements over the past 3-4 weeks
• Random vomiting asleep and awake over the past 3 weeks
• Increase in oxygen needs for the past week
• Increase in naps for the past 2 weeks
• Rubbing head and ears randomly for the past 2 weeks
• Aspirating while drinking thin liquids for the past week
• Rubbing his head and fussing, specifically in the back of his head where his scar is, all day for the past 4 days
• Difficulties in oral feeding for past 3 days after 1.5 months of record-setting feedings

These symptoms may not fit together like a puzzle for most, but many special needs parents are getting the picture... Intercranial pressure. Chiari.  Hydrocephalus.  Those are all words flying through my brain right now.  I called the on-call neurosurgeon the other day after Jayson had vomited and the realization set in that this was becoming a trend, just as it did before his chiari decompression surgery.  The neurosurgeon on-call agreed he needed to be seen, quickly, but it was not an urgent ER matter.  My heart sunk even more.  I wanted to hear him call me silly.  I wanted to have him tell me I was worrying too much and wasting his time.  This time, I didn't want my concerns to be validated.  And since they have been, I have made myself sick with my fear of what tomorrow might bring.  Not metaphorically speaking, literally.  We have an urgent neurosurgery appointment tomorrow.  I will likely have some answers tomorrow, and I fear they are not answers I want to hear. 

So as I sit here today with my stomach in knots, my head and heart pounding, and my eyes welled up with tears, I ask my friends and family a favor-- worry with me.  Pray with me.  Because I don't want to feel alone.