Sunday, October 18, 2015

We're Not the Type (A Long Overdue Post)

It’s amazing what time, or, to put it better, several long days and a few short months can do. This time, around the adoption experience has been so much harder, more demanding, broken us down, and granted bigger rewards than anything we ever anticipated. If you had told us before all of this how things were going to be, we probably would have looked at you with terror in our eyes and emphatically said,“Oh no...we’re not the type of people that can handle that."

To be honest, we actually did succumb to just that kind of thinking when we first received Kai.  We were handed this really huge 28-month-old boy that, though sweet, didn't even know how to chew food, along with a myriad of other things he couldn't do, but should have been able to at his age. We were shattered and shocked to see him with the developmental skills of a six month old (at best), along with some apparent cognitive issues. We knew something was very wrong, but had no idea what was going on with our new son.  Even our agency guide had tried to warn us that something was wrong before we went to the civil affairs office.  He was supposed to be our “easy” one! How could the paperwork have been so quiet on all of his needs and outright wrong about some issues? How were we going to manage his needs with all of the medical complexity that we already knew was coming with Skye? Besides that, when we had to fill out or list of medical conditions we were willing to accept, we never, ever checked anything to do with cognitive or developmental issues as we were not the people who could deal with that kind of thing.  We never felt we had the resources or patience to parent a child like that, and the thought of having to do it terrified us!

In those first dark hours, we sobbed, reached out to other adoptive parents back home that we knew would understand, and for a very, very fleeting moment actually wondered about disrupting.  The only way you could ever possibly understand is if you’ve been in that moment...alone, overwhelmed with fear, exhausted, and all of your expectations broken. Did God really call us to this? Doesn’t He know that we aren’t the type of parents that can handle this? However, we decided we needed to cover him in prayer and take joy in the small things we saw in Kai:  His sweet personality, the ability to entertain himself with very little (which unfortunately we figured came from being left to his own devices for way too long), and his charming smile.  He was our son and we had made a commitment to him, no matter what. 

Soon, we traveled to the next province to get Skye, which was quite the ordeal trying to juggle all of our bags and this 30-some-pound toddler who was floppy and couldn't hold himself up very well to carry easily. Kathie always says that circus music follows us everywhere, and certainly this was one of those times where you could hear it from miles away!  Once we arrived, we were so happy to be with other adopting families and excited to see the familiar faces of our guides from our last trip.  There is definitely strength in numbers, and it was great to have a group of families that would all encourage one another during these rough first few weeks with our new children.

The day we received Skye was a difficult one. She came last of all the children in our group.  Though she was fine while her nannies were there, as soon as they left she grieved very hard.  She screamed and hit David’s arms and cried out for her “big sisters” to come back. After she settled down and we got back on the bus to return to the hotel, she promptly vomited all over herself, David, and the bus floor.  It was to be the first of many changes of clothing, bedding, and, no joke, hundreds of diapers between the two of them. Skye also had a horrible UTI  and her bladder and bowel function were much worse that we had anticipated. She also had horrible screaming fits when she would not get her way with blood-curdling screams and body-wracking sobs.  Of course, she only did these in public, so it was very, very frustrating and embarrassing.  In hindsight, they were much like her “gotcha day” tears and were a continuation of her grief and adjustment.
The emotional and physical drain in China, along with the battle to bond and attach with our two new children, was pretty overwhelming. We clung to each other and to God, not knowing how we were going to be able to be parents to these kids.

Once home, that struggle continued. At one point, there were 15 out of 20 days filled with appointments as we sought to get the kids seen by specialists, therapy, etc. Skye struggled with repeat UTIs that were resistant to most oral antibiotics and had the chance of landing in the hospital for IV antibiotics.  We have been bombarded with specialist recommendations:  Neurologists, urologists, neurosurgeons, hand surgeons, orthopedics, ophthalmologists, audiologists, endocrinologists, and genetics so far. Skye needed new leg braces, a wheelchair, and a walker. Kai is waiting on special foot braces called SMOs and still needs to see a pediatric general surgeon to evaluate if he needs more bowel surgery.  We have 3 kids in therapy right now since Lily still has speech therapy, so every week is a full schedule of some type of doctor appointments, on top of 3 days with therapy appointments, on top of activities with all the other kids and work for both of us. “We’re not the type of people who can do all of this,”we insist.

Just in the last week or so, we learned some of the reason that Kai is the way he is.  His brain didn't form correctly; from some congenital anomaly or early trauma isn't clear.  Either way, the bridge between his left and right hemispheres called the corpus callosum is malformed and partially missing (dysgenesis).  He also has a structural brain condition called colpocephaly and some optic nerve atrophy which may cause visual deficits.  The dysgenesis of the corpus callosum and optic nerve atrophy together also strongly suggest he may have a condition called septo-optic dysplasia, or de Morsier syndrome, which may indicate pituitary dysfunction as well, so he is going to be going a comprehensive endocrine and genetic workup.  All of it points to a high seizure risk for him and an uncertain mental/developmental picture. It is pretty much a spectrum condition...some people end up with little to no deficits or complications, some have profound intellectual and functional disability, and some finding themselves somewhere in the middle.  The neurologist told us on Friday that we won't know how he is going to function long-term until he's about 6 years of age.  To us, that is a long time of not knowing what to expect for him. “We are SO not the type of parents who are good with this kind of thing,”we fear.

And yet, God has been and continues to be making us into the parents that are indeed the type.  We never dreamed we’d be glad to get a handicap placard for our vehicle, thankful to be applying for a program to help with coverage for chronic medical conditions, and over-the-moon excited when we meet criteria to qualify for some assistance programs that have helped with some very large costs.  To clarify, we are NOT poor...we’ve seen true poverty and we are NOT it.  We have just hit the point that with 8 kids now we are eligible for programs designed to give assistance to families like ours, and we are very, very thankful for those programs at this point.  (Just to let you know, Kathie is totally cringing at me adding this in here, but I feel it's an important piece of what God has brought us to, despite our pride!)

Who knew that we’d be relieved for a home cath and enema program for Skye, thereby bringing a stop to the UTIs, along with the flooding of diapers and clothes? Who knew that seeing Skye walk for the first time using a walker would be sublime; that Kai using some sign language to communicate would make us grin; that Kai moving from unable to chew food to using a utensil on occasion to feed himself, to see him stand himself up and walk across a room, to see him learn to drink from a straw would bring shouts of excitement and overwhelming joy?

Who knew? God did…and He knew in His wisdom that it wasn’t (and isn’t) going to be easy.  He has ripped us so far out of our comfort zone, and believe us when we say it was and is at times still painful. Yet, we can’t imagine our home without these two. And God keeps pouring His grace and mercy onto us, picking us up when we drop the ball and filling us back up when we're feeling pretty empty and tired.  We aren’t fully the type yet, but He’s slowly getting us there.

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