Jaron Meets Daron

When we were given Jaron's dignosis, the doctor had never heard of Miller-Dieker Syndrome.  He printed out all the paperwork from his medical books and handed us a copy.  That packet plagued me for days.  I wanted the information but I didn't want to accept what it was telling me.  There were 2 pictures of children with MDS and it actually scared me to look at them.  It was where I was at emotionally in the process of learning horrible news about my baby.  I dreamed of being a nurse.  I love all the technical medical terminology about various medical conditions.  But when I'm reading a medical report about a syndrome my own baby has, its a totally different feeling.  It was sickening to read.  Slowly, I was able to read, reread, and then process the information.  Brian and I felt all alone because not even specialists had heard of or seen a child with Miller-Dieker.

In February, another little boy was born in Portland with Miller-Dieker Syndrome.  It's crazy how news like that can make us so excited and yet give us a devastated, heart-broken feeling in the same moment.  This meant we were not alone.  But it also meant another family was going to be traveling the dark, scary, overwhelming path we had just begun.

Through a series of crazy miscommunications (HIPPA regulations and computer issues), we were finally in contact with the family.  The kids and I went to visit at their house on April 13th.  I think Katya and I were the most anxious to connect.  Both of us loving moms, committed to the well-being of our children, painfully enduring the unknown path of parenting a very fragile child.  They have 5 children.  Her 4 older children and my 3 were fast friends, and even the baby boys seemed drawn to each other quickly.  Lukas was off playing light sabers with David (age 11), Daniel (9), and Deric (3).  And Haylee and Hannah loved playing dolls with Dasha (5). Separating the new best friends was very difficult at the end of our visit!  We plan to reconnect soon at a park or our house, this time with the dads!

 

They had struggled to find another "D" name that fit their new son and before they knew about Jaron, they decided on the name, Daron!  And if all these similarities weren't enough, they homeschool as well!  It was such a special gift to meet this sweet family and share stories and experiences that no one else quite understands.  We are both so thankful to have the Lord to depend on through these difficult times.  It was healing for me to be able to share what experiences we had been through so far, to help them better understand what to expect.

Each child is so different in the ways the condition affects them, but there are several commonalities.  No parent is ever ready to watch their child suffer, so Daron's family is especially concerned about the onset of seizures.  This is one of the most prevalent conditions with Miller-Dieker, and also the part filled with the most questions, decisions, and doubt.  I HATE seizures.  Please pray for this sweet family as they too experience the struggles and the joys of life with a special child.  We both agreed that our special little boys are a precious gift and we want to enjoy every moment we have with them!