Siblings and XP
The last 6 months have entailed a lot of changes for all members of the family, including Pacific’s siblings. There’s something impressive, yet rather disconcerting, when your 8 year old can perfectly pronounce “xeroderma pigmentosum” and explain what it entails.
It’s been hard on them. One night after he was burned, I’d been up for 24 hours with a baby who cried every time I stopped actively bouncing him, and in desperation, woke my 13 year old daughter, offering her cash if she would hold him so I could get an hour or two of sleep. That was just the first time our family plans were disrupted, when a family vacation turned into Mom spending almost a week at the hospital with the baby while they were cared for by family friends. Our plans out East this summer were cancelled as well- replaced by a trip to a hospital in DC, with their grandmother along to take them on some of the sightseeing I had originally planned for June.
They worry a lot- about their brother for one. When he was in the hospital initially, they asked me if he was going to die. I told them no, but they could still see the worry on my face. They worry about their parents. Liberty and Arcadia are both empathetic and pick up quickly on when we are stressed. They worry about their family staying intact- they know the stress this year has put on their parents’ relationship.
They have been blessed by so many people who love them. They spent time in Indiana over the summer where they went camping with their grandparents. A family friend took Arcadia on a stargazing camping trip with their family before school started. So many times when friends are going somewhere, doing something interesting, be it the zoo, a book club, or a trip to the beach, they call me asking if Libby and Arcadia can come along. Friends from church pick them up for events when a long car trip would be miserable for Pax in covered car seat. A family from their school stepped in and not only arranged for transportation and supervision during classes, but worked with facilitators for extracurricular activities so that they could attend activities without straining our already tight finances.
They haven’t met many other kids who siblings with special needs, especially not with anything similar to Pacific’s. Seattle Children’s Hospital has a program that debuted here, but is now modeled after across the continent, that helps to meet this need. Their website describes:
“Seattle Children’s Sibshops are lively, pedal-to-the-metal, award-winning celebrations of the many contributions made by brothers and sisters of kids with special needs. Sibshops acknowledge that being the brother or sister of a person with special needs is for some a good thing, others a not-so-good thing, and for many, somewhere in between. They reflect a belief that brothers and sisters have much to offer one another – if they are given a chance.”
Many of our friends and family across the country have asked for ways that they can support our family as we deal with the challenges from Pacific’s disorder. Sibshops cost $100 per child for a year of workshops, one every other month through the school year. If you’d like to support our family in this way, I’ve added a “Donate” link via Paypal on the side of the blog. Your contribution would go directly to enrolling the girls in this resource. Any additional funds received would be put towards items on Pacific’s wishlist, such as a patio heater for outdoor playtime after dark in cool weather, or in trust for later needs.
Below is a post that Arcadia requested to write for the blog about her experiences dealing with Pacific’s condition, titled “Me and XP”.
When we were in Berkeley, at the family friends’ house, at night after his burn, Pax wouldn’t sleep very much. Mom was tired, and like the person I am, I felt the desire to stay up with Pax, at Mom’s request, rocking him so he would go to sleep. I felt like Mom had gone through enough and deserved sleep. I wasn’t going through NEARLY as much as she was.
It was just a tad unsettling at night, rocking Pax, wiping him with a damp cloth so the liquids trickling from his pores wouldn’t clog. I listened to his whines and looked at his face, so bloated, cracked and messy that his eyes were swollen shut, the pus crusting his eyes. Thank goodness for Netflix on the iPad or I would have gone crazy. As a human, i needed to have some background noise, some distraction so that I wouldn’t concentrate on someone that needed help that I couldn’t give.
I felt, and still feel almost guilty to reminisce on the past, when Pax was a newborn and we could have the windows open and take him out in the sunshine. There are several memories I think on fondly, the day we had the family pictures, Pax’s first Christmas, the first time Pax went to the beach, and the day Pax was born, most of all.
You know, now I wonder, if we hadn’t gone to Berkeley, would we have found out about Pax? What would life be like now if we were ignorant to Pax’s disorder? Are we actually fortunate to have found out so early?
Posted on September 26, 2013, in Uncategorized and tagged siblings, xeroderma pigmentosum, XP. Bookmark the permalink. Leave a comment.
Leave a comment