And then...

So the crying has continued.  On again, off again for the last few weeks.  Much better than before, until yesterday.  It has begun escalating again.  He cried for his aid today for 30 minutes straight while attending a bouncy house, and then it subsided.  Now tonight, his cries have risen to the inconsolable screams, we are 30 minutes in, and 10 minutes after an ibuprofen dose.  My hands are sweating and I feel nauseous.  He pushed me away when I asked if he wanted me near him, so I have left the room and said a prayer that the ibuprofen give him some relief.  It's a Saturday night, there is no doctor to call.  An emergency room visit makes me shudder - their ability to handle a non-verbal autistic child flailing will likely lead to restraint - I have been supporting enough other families in the area to know the deal. 

Sophie has closed her door in her bedroom and fallen asleep - a defense mechanism we all have adopted from time to time to get us through these times.  Listening to him cry is exhausting, even if it is shorts bursts let alone an hour or 2.  Sophie's exceptionally keen hearing (a trait she inherited from her own father) makes the crying unusually difficult for her. 

And then it happens.  The crying has stopped.  He has eaten some dinner and is back to his jovial self.  The ibuprofen has done its job, again.  Thank God.

Steve and I did decide to take our weekend away in nearby Skaneatateles a few weeks ago.  An amazing couple have a charitable organization called David's Refuge that they created after the loss of their son to a rare genetic disorder.  David's Refuge, is  a respite ministry for parents of children with special needs.  It provides caretakers with a weekend getaway in order to recharge from the day to day care-giving duties involved in raising a special needs child. 

Warren and Brenda Pfohl decided to create the ministry after the loss of their son at the age of 22 after extensive care-giving for their him for 13 years when diagnosed with Batten's Disease at age 9.  This genetic disorder causes progressively debilitating symptoms such as loss of sight, seizures, lack of motor control, and mental impairment. Batten's Disease is always fatal.

Watching your child lose their faculties I understand to some degree, as Zach had lost his speech and social skills.  However knowing that they will eventually perish is the worse this world can offer after all your diligent care.  The only consolation is to know that they are no longer suffering from their physical ailments and the associated psychological and emotional strain associated with that.  To take that pain and turn it into something so needed and genuine is a blessing beyond belief for those who have a hard time sometimes leaving for an hour.

 From what I have read of  David, he was quite the spiritual young man.  He and his family made sure there were opportunities to reflect and laugh amongst the despair.  To have had the opportunity to meet them as they extended themselves to us was very moving and indeed supportive.  While the weekend was not as relaxing as it could have been, the thoughts of Zach crying for our caregiver and stressors from our work-lives looming over our heads, it still has played a pivotal role in our current role as caregivers.  As we returned from our weekend, and I went on to read Warren's blog of their journey, I realized that they were able to provide us with something I had no idea we needed, namely, to know that we are not alone and that what we do matters.  So often I feel invisible and that Zach too is invisible.

The other caregivers at the refuge that weekend were all variations of a theme.  We were all tired.  Two of the women their told of their medical issues themselves on top of caring for children with special needs.  What amazed me was the smiles that we could offer one another - not patronizing or pitiful, but the jokes and opportunity to laugh amongst the knowledge that sometimes this stuff really stinks. 

Several hours have passed since I started this post.  He is once again a ball of tears.  We must get him through the night and then calls to the doctor will need to be placed in the morning.  Steve, Sophie and I are sitting in the basement, Zach has been administered another dose of pain reliever and is settling down a bit.  I look around at Steve and Sophie and can only imagine what I look like, their long faces are drawn and look weary.  Well, Sophie is brightening as she plays Growtopia on the iPad.  I thank God for devices that help take our brains away for these increments of time when not much else would.

The other solace I have taken up is extreme eating.  My weight, after losing 15 pounds, has begun to creep up again, just after I was so proud to get it down healthy without crazy diets or extreme fads.  I recognize that I have taken on too much - especially now that Sophia has begun to struggle a bit with her own issues on top of our hectic family life.  I am heart broken that I cannot pursue things that I would like to, and know that I have disappointed others who had been accustomed to me rising to the occasion. 

On top of my weight gain, I have been struggling with fatigue, memory loss, and confusion.  We live at the doctors offices around here, always hopeful, yet there never seems to be a solution. And yet amongst these things, we still manage to laugh from time to time, to take time for one another and to be grateful for what we have. 

In those few hours this evening when Zach's twinkle was back, Steve made homemade pizza and chicken wings, and a beautiful salad.  We sat around the kitchen table, and Steve teased Sophia while Zach jumped up and down and ate french fries.  We have learned to take advantage of moments around here.  I highly suggest everyone else do the same.  It makes a world of difference.