Life in our household has been both exciting and stressful recently, a seemingly endless emotional parabola.  Luca The Bazooka turned two a couple of weeks ago and is loving life.  In good ways and bad, the little man lives out loud, whether its getting uber-hyped at his favorite show, making a mad naked dash around the house, or breaking our dining room chair.  I am incredibly touched for the love and concern that he shows for his brother, always wanting to hold Jackson’s hand or share his food with him.

Jackson’s path has been considerably different, fighting off malady after malady.  Throughout his life, we have always battled his seizures and, for the most part, been able to control them.  Just recently, the seizures have changed in their presentation and have become more frequent. He used to have seizures only occasionally after he woke up.  Now, they seem to be much more random and during the episode, Jackson straightens his arms and stops breathing for 5-20 seconds, which we refer to as “getting stuck.” He takes a deep breath when he comes out of it and he’s usually in a daze for a few minutes afterward. He “got stuck” during Luca’s birthday party in front of the whole family, which unfortunately puts everything on edge.  At least we had libations handy.

In addition to the unwanted development on the epileptic front, Jackson has been battling a respiratory infection for several weeks now, and it recently developed into pneumonia.  This infection has landed us in the doctor’s office three times (I really want to write thrice, but it seems way to snooty), and the ER twice.  Thankfully, we haven’t had to be admitted yet and are actively treating Jackson at home.  Yes, our house does smell like a eucalyptus tree covered in Vick’s.  Consider this — from 7 to 9 pm, Jackson has to take Sabril, Keppra, OnFi for seizures, a Vitamin D supplement, Zyrtec for allergies, Miralax for digestion, Albuetrol for breathing, Flonase for breathing, antibiotics, erythromycin for an eye sty, a humidifier for sleeping, and, if needed Advil.  And that is just to get ready for bed.  What a trooper!

Jackson will always have health battles, but these periods of heightened issues, of heightened stress are no fun for anyone, most especially the J.  We will conquer this episode and recuperate, trying to prevent the next one that we know is likely to come.  It reminds me of what I believe is an old Haitian saying, that “beyond the mountains, there are more mountains.”  They said it in reference to their lifelong struggles with poverty.  I look at it through the prism of my son’s health.  But, what I also know about human resiliency and the human experience, is that all mountains can be summited.




5 responses to “Mountains

  1. What a wonderful post. Jackson is such a trooper! We are so proud of you and your family. Love, Mom and Dad

  2. How we love your posts. We pray for you daily and your posts help us to know what your days are like. You are all troopers. Our days are so simple. Love you. Aunt Jane and George

  3. Happy belated birthday! Bazooka
    Jackson you look marvelous!
    I bathed my kids together so happy that you all get R done with yours as well. I saved even more time by brushing teeth in the tub too, so much fun spitting in the tub lol.
    Hugs from the Van Rafelghems!

  4. You are all amazing, we love you and think of you. So enjoy your posts, we are always thinking we are busy, but not that busy. Hope the summer brings great family time. Love Aunt Pam

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