What is it like to be Krassi?

I think a lot about what is going on inside of Krassi as he goes about his daily life with us as his family. Eight weeks ago today I picked him up from the orphanage that was his world for the entirety of his life. Everything he knew about the world came from his experiences in that environment, and the degree of neglect that he experienced there has had, I'm sure, irreversible impacts on who he is and who he will be.

There are obviously physical implications. The lack of physical stimulation or therapy of any sort - even someone untrained to hold him upright and support his body as he learned to use his muscles with their less-than-ideal abilities - resulted in him doing this for himself by wrapping his legs and feet around each other to provide something to brace himself against as he took on life by himself. The lack of weight-bearing opportunities means that his hip sockets never formed properly, and the leg/foot wrap resulted in muscles so off-balance that his own inner thighs pulled his legs out of his improperly formed sockets. So many of the challenges that he faces with the use of his legs and mobility are more directly impacted by the severe neglect he was subjected to than by his diagnosis of cerebral palsy. Being removed from your crib only for your once-daily diaper change does not provide the necessary physical stimulation for proper development.

Krassi was severely malnourished. From what I have read, this was likely done intentionally for a variety of reasons. Less food per child means the food expenditures are lower. Children who still *look* at first glance as though they are within the birth-to-3 age range that his orphanage was intended for allow the head count of the orphanage to easily be quite high simply because the children never look old enough to "age out" so unless someone inspecting is really paying attention, it sure looks like you have a full load of babies, and your funding, based on a per child count, stays high. Children who are too weak to do much of anything are not much of a bother to care for. They stay put, they don't fight care - everything is easier this way, right? And so we end up with a little boy who at 8 years old weighs 22 pounds. And that puts Krassi as one of the larger, sturdier children. I have seen, coming out of his orphanage, a tiny 9 year old who weighed 11 pounds (and at 7 years old, weighed only 7 pounds. Even Owen, my smallest baby, weighed 7-10 at birth!!!), children in their teens who weighed less than 20 pounds, and even, a good solid year after better care with the new director, a six year old wearing size 6-9 month footies, and a 9 year old weighing 18 pounds (these two were the ones who had families visiting for the first time the same week we were there with Krassi back in March.)

We found out this spring that our Rinnah (now almost 2 1/2 years old) is completely, or nearly completely lactose intolerant. Suddenly many things about her made sense. She, like Leah, was 9 pounds at birth, but while most babies double their birth-weight by 3-4 months (Leah did earlier than that!), Rinnah didn't fully double her weight until she was nearly 10 months old. She was terribly constipated as a purely breast-fed baby, and it only improved slightly with the introduction of solid foods. She was not a very smiley baby, though very intense, and was showing signs of some mild developmental delays. She was receiving services through the birth-to-3 program in our area (partly because it was convenient, because at that time someone was coming almost weekly to work with Reuben anyway), and after we got Reuben's genetic diagnosis in early 2012, his neurologist thought it made sense to check Rinnah as well, even though Reu's syndrome is very rare, and of the 70 known cases, only two of those were connected genetically since it is a non-hereditary condition. But she came back with no significant abnormalities (one quirk that she shares with Matt on her 18th chromosome) so no answers. But with the suggestion this past spring from our doctor to eliminate lactose, Rinnah has just exploded - her gross motor skill increased dramatically, her speech expanded incredibly, her thighs got chunky ;), her hair started growing and getting thicker - we have seen the effects of malnutrition on all systems of a person's body, and though in Rinnah's case it was rather mild compared to Krassi, it still influenced all areas of her development. Our bodies are designed to be fed!

But what has really been on my mind is not these more obvious physical impacts, but the impact of that treatment on who Krassi is. On how he thinks, how he feels, how he understands what's happening around him, how he expresses himself to those around him, how he interacts with and learns from his world. One thing that was striking to us when we first met Krassi last March was how relatively well developed his social skills were, particularly in his ability to respond appropriately to people. He was nervous around us, as strangers who spoke strangely, and did strange (to him) things with him (like play!). He was giddy when his baba was even in the room. He was completely unresponsive to one of the staff who had been at the orphanage for many years (including under the old management) and who treated him like an object to be moved from place to place. The image of that woman wheeling this tiny boy into our visiting room in his stroller that first day, and turning and leaving as though she'd done nothing more than put a box on the table of an empty room was striking. Krassi was on his own to face the unknown, and he did not cry out for her as a familiar person because I'm certain he knew she was not someone to cry out to. He showed enjoyment of his time with his physical therapist who was a recent addition to the staff hired by the new director 6 months prior to our visit. And by the fourth day of our visits, he was noticeably more relaxed with us, and even willing to smile, but showed no signs of attachment or reaching out to us for affection. These are all very appropriate responses, and more than we had been allowing ourselves to expect.

We also know that Krassi can (and does) show distress by whimpering or crying. This in itself is incredible to me, as many institutionalized children have learned early on NOT to cry because at best it accomplishes nothing, and at worst may result in physical abuse from staff. I'm in touch with a number of families of his then-orphanage mates who do not cry, but rather laugh in response to pain or fear. We are lucky that Krassi will cry. But I also know that he will laugh at times that do not seem entirely appropriate. For example, when Reuben or Rinnah are near him and accidentally step on his fingers or bump into his leg, he laughs. Is this a "safe" response to pain that he has learned? Or is he really delighted by the real intense physical contact with real, live children - something that he never had? Or both? Or neither? When he appears to be showing pleasure during handling of his lower limbs during therapy or evaluations, or just me massaging and stretching at home, is he masking pain or fear? Or is he enjoying the work of learning those muscles, and remembering the kind and gentle treatment of the orphanage physical therapist who worked with him for 30 minutes five times a week?

Sometimes when I change his diaper, he laughs and makes his happy sounds. Sometimes laying down on the changing pad will trigger tears and agitated cries. Is he telling me with the former that he is learning to trust that I will be gentle and kind as I change and dress him? And is the latter an indication that I moved him or touched him in a painful way? Or does it trigger painful memories? Or are they both ways of him dealing with the deep trauma of what diaper changes were to him for eight years? Once a day yanked out of his crib, down on the table, one set off, another on, back down in the crib until tomorrow. Was it more frightening to be handled by someone who did not care than it was to be left "safely" alone?

We in many ways consider him to be very much like a 6-9 month old infant. But it isn't as simple as treating him like a 6-9 month old infant, because he is a 6-9 month old infant with more than 9 years of memories, and of learning how to stay alive, how to keep yourself alive while still being completely dependent on others. Nine years of having no one to care about him, no one to say, "Don't treat my boy that way!"

As I sit here waiting for him to get through his MRI scans, I know, though he doesn't, that the people caring for him are going to do their job well because I am here, and if they don't treat my boy well, his daddy and I will do something about it. His caregivers here know that we have certain expectations of how he will be treated because he is our son, and we will speak for him when he is unable to do so for himself. Additionally, they see him as we do - as a valuable human being who has feelings and who deserves to be treated with respect.

He did really well this morning. Again, is it because he is actually doing well? Or because he is relying on his well-developed skills of surviving? I'm writing from this point on after the kids' bedtime after a day of reflecting on the morning's adventure. He really did amazingly during the prep, dealing with staff in medical attire (like staff in the orphanage always wear), and with me laying him on the bed to change him into his hospital gown. I even got a smile when I worked him for it a bit. ;)

Love how his face is filling out, even though we can't keep any weight on him!

Krassi has a mommy. ;)

He drifted off with the gas/mask without any issues at all. I realize that the last three years of dealing with a child with medical issues has made things like this much less of a big deal than they were when Reuben was hospitalized over Thanksgiving three years ago. For that MRI, I had Matt with me, and even then I cried as Reu drifted off. Today it was so much simpler. Krassi was peaceful, I knew that nothing painful or frightening was going to happen to him while I was gone, and I had made it very clear to all of the staff involved that it was very important to me to be with him from the moment he was aware of anything so he knew without a doubt that he was not abandoned. By the time I made it back to him after the (much shorter than anticipated) scans were complete, he was just barely moving, and had not yet opened his eyes, so I was able to talk to him and be the first person he saw. I knew he was really waking up when he worked his hand up to push off the blankets that were covering his little naked body. ;) Because he does not do well with liquids, the nurse said it was okay for me to try applesauce. He ate it slowly, and happily, and seemed to be doing just fine. After a little longer I dressed him and bundled him up (with his Mittens On!) He continued to appear to be dealing with everything fantastically until the moment I put him into his car seat. Then he started crying - not as loud and intensely as he can, but probably 80% of the way there.

Questions - does he not like his Mittens On? Or is he feeling the security of a familiar place (our van) as a signal that it's okay to let his feelings fears/distress/uncertainty about the morning out finally? Or something completely different that my mind cannot even think of?

It was not a happy ride home. All the way, until we pulled into our driveway, Krassi was some version of this:

But being home was better, and taking the Mittens off helped, too. Amazingly, he did not once pick or poke at the bandaid on his left arm where the IV had been.

I fed him a little bit more at an early lunch time, and he had a very nice wet and dirty diaper (we were to watch for him to urinate before the afternoon was over), and he played happily in all his favorite places.

Yum. A box. (Although we have rules about licking the floor and biting people, those rules do not apply to other things as long as they are things that will not be damaged by moisture. I figure like a 6-9 month old, he needs the opportunity to explore his world with his mouth!)

"Hi, mom. What are you looking at?" (Notice that he is not quite looking at me. This is pretty typical, still.)

Back to work on that box.

Then, midway through the afternoon,while I was snuggling with my sleepy Reu (doozie of a seizure this morning at 4:30am contributed to a more wiped out guy for the rest of the day), I heard the unmistakeable sound of vomiting. Sure enough, the combination of general anesthesia and more food than his tummy was ready for (and no way of telling me, or knowing to take it easy) resulted in some less than pleasant results for Krassi.

Reu sound asleep. This photo is here mostly so you can see the effects of his Friday tumble still manifesting themselves. He's still swollen, and today is mostly green and yellow, with a line of purple under his eye.

These are the kinds of times when I am so grateful that Matt works at home. Owen helped to move Krassi to a clean spot on the floor while Leah ran down to the basement to get Dad who came up to the rescue so I didn't have to move Reuben and risk waking him at the wrong point in his sleep cycle and triggering another seizure.

As much as it was tough to hear him vomiting (and again, no signs of distress whatsoever - how to know how he's really feeling??) it was SO neat to be able to respond - to know that he had someone near him speaking comfortingly to him. To know that it was mere minutes, if that, that he had to be near the smell of the vomit before someone was cleaning it up off the floor and off of him. To know that his clothes were changed right away, and when the chills hit him, he had his Daddy to wrap him up and hold him close until he warmed up.

Another smaller episode about an hour later resulted in the decision that it was bath time. Krassi loves his baths. As many times as it's hard to decode what his emotional responses to different things are, there are some things that I can not interpret any other way than sheer delight. ;) And bath time is one of those!

We took it r-e-a-l-l-y slow on food at supper time, and so far have had good results. Looking forward to giving him a real meal tomorrow. All in all, not a bad day, and it gives us one more day of showing Krassi what it means to be part of a family. We go places, mommy is with you, we come home, family is with you. You throw up, daddy is with you, you are cared for, you are safe. We love you, tiny boy! And you are definitely worth the time it is going to take to get into your head and your heart and walk this road along side of you.