Great Expectations, Part I--Family

Last Thanksgiving, a strange thing happened.  Someone showed me an online listing of waiting children from China.  

You know what happened next.  The wish that is never too far beneath the surface, the desire for a little girl, stirred, and of course I saw a picture and blurted, "She has arthrogryposis!"  I couldn't believe how mild her condition was.  In the arthrogryposis spectrum, FuXia is sitting pretty; most of his challenges stem from lack of treatment in early childhood.  This little girl's arms and hands aren't even visibly affected.

I began to imagine what it would be like to begin again.  I told Shane that if it needed to happen, God knew what we needed--medical bills, tax rebate, miracle wad of $30K for another adoption, a different house.  The list was impossible, but so was the idea that we'd receive an anonymous gift of $25K for FuXia's adoption in 2010--and that SO happened!  

With December, we received several gifts and cleared all but one medical account.  As we checked into RMH two weeks after Thanksgiving, the IRS called--at 10:30 pm--to approve our rebate.  I began to wonder.

The next morning, I learned FuXia needed more fixator hardware--this month's surgery.  Bone will be cut, and following that phase, another surgery will remove the fixator.  FuXia will likely need a pelvic osteotomy this summer with a different kind of fixator to correct hip dysplasia--surgery to install, surgery to remove.  And yes, that does come to five surgeries in a year.

Days later, I learned YoYo also needs a pelvic osteotomy--a more intense one.  He'll have tissue expanders to create skin for scar cleanup, and he'll have what's called a "midline reconstruction."  He has to gain 5 pounds--our greatest annual gain so far is 2.5 pounds--and we have to learn more about his heart murmur.  He takes a new antibiotic 3 times daily to combat the bacterial overgrowth that's a result of his short gut, and he has to avoid simple sugars (table sugar, fruit, sweets, juice).  We're waiting for samples of his fancy smoothie drink.  I can't imagine what it will be like to try to keep him immobile for six weeks while his devices do their work.  

I'm eager to get started on these things, to move through them and marvel at the what life holds for my boys.  That means the idea of another adoption is a dream deferred for now.  Not only am I at my limit for traveling to the specialists the boys need, but I'm also stretched to be aware of the boys as people, in a parenting sort of way.  When Shane's working late-night rehearsals for a show, the routine is homework, cook, feed, bathe (both need help with this), toilet (both need help), dress (help), antibiotics for all, tuck in, add pull straps to FuXia's AFO, prayers & kisses.  Getting ready for bed sometimes takes over 2 hours; bathing alone involves putting chair and stool in the tub for FuXia, carrying him to the toilet, helping him undress, carrying him to the tub, setting up his shower supplies, cleaning his pin sites afterwards and drying him, helping him get his pjs on, carrying him back out of the bathroom and into his chair, emptying the shower of chair and stool and rinsing it down, putting YoYo's floormat in, getting YoYo in and set up, and prepping YoYo's ostomy supplies while he showers.  It is so easy for the teacher within to check things off a list and not be aware of where my little people are living and feeling and hurting or cheering.  The parenting part of parenting, as opposed to the caregiving part, becomes deliberate--it takes work--and I really have to be aware of that, because meeting physical needs without interacting relationally is no better than institutionalized care, and we're trying to grow people.

I'm realizing, in this, that this is our best for now.  I can still say, without hesitation, that I love this life we have as a family together.  I love my boys, I love my husband--I am blessed with so much joy, though the work is h.a.r.d.  It's good--and we are the four of us right now.