Monday, April 29, 2013

More Delays

I’ve been composing this blog post in my head for several days now. I want to be honest in this blog about our adoption journey—and tell you the straight truth about how life really is—but sometimes I need some days to frame things in my own head before writing them down. This has been one of those weeks.

Last week on Tuesday, I took Matthew to Seattle Children’s Hospital to see the Craniofacial Speech Therapist. One of the things you can’t tell from the pictures of Matthew is that his language is still very delayed. In some ways he must look like a very average two-year old. But if you were to visit us and spend any time with him, it would be obvious that he’s significantly behind in his language development.

We had gone to Children’s because I’ve obviously been aware of his delays, and I was wondering just how much his language delay is being affected by his cleft lip and palate, and all the many issues surrounding those challenges. It was a hard visit and a good one too, because the speech therapist we saw, who specializes in cleft lip and palate kiddos, was quite certain that Matthew’s language challenges have nothing to do with his palate. His palate, according to her, is functioning perfectly well.

However, she was quite overwhelmed by his many social and language delays. When she tried to interact with him in the ways she must interact with other, more developmentally on-target kids, he didn’t react in any normal ways, and she became very concerned.

I watched this all go down, and I knew what was happening, but at the end of our visit, she told me she’d like to refer us to the Neurodevelopmental Center at Children’s so Matthew can be evaluated by a Neurodevelopmental Pediatrician. She said she was surprised we hadn’t already gotten this referral from Craniofacial, and she was pretty sure we needed to be seen over there as soon as possible. She cited several “red flags,” as she called them, in Matthew’s behavior that led her to believe he may have some kind of neurodevelopmental disorder or delay.

Wow. What hard words to hear.

I’ll admit that I’ve wondered the very same thing time and time again as Matthew’s mama. I’ve even voiced some of those worries here on this blog. But to hear someone at Children’s put words to my own thoughts was really hard. Hard enough that I felt on the verge of tears for several days last week. And of course with those words came all my fears and worries—all my anxieties brought to the surface for me to face head on.

And here are some of them: What if my son never learns to talk? What if he has significant cognitive or neurological delays that affect this learning and development for the rest of his life? What if he can never be independent? What if he never catches up?

These are questions that I’m sure many adoptive parents (and probably parents in general) ask when their children show signs of developmental delay. It’s scary, but I suppose in some ways it’s also empowering to have a referral that might lead to some deeper understanding of a child’s behavior and delays.

It’s funny because part of me thinks perhaps he has some disorder or delay that will be nameable, and part of me feels deep down inside that the depravity of Matthew’s early life in the orphanage is still playing itself out in his life.

Tonight we had some friends over whose son is almost 10 months old. He was born about a week after we got home from China with Matthew. So in terms of life in our family and life here in the United States, Matthew is about he same age as this little boy. It was funny to watch him, because in terms of language development, these little boys both seem to be in about the same place. They are both making babbling sounds but not saying words. They are both avid explorers of the world around them. Matthew is actually quite ahead of this little baby in his gross and fine motor skills, but in terms of language and speech, they are right on par.

And sometimes I thin about the fact that it was likely Matthew didn’t hear anything until his palate was repaired and tubes were put in his ears. If this is the case, then he didn’t start hearing the English language until about five months ago. Five months. When I think about a five-month old baby, I am astonished at all the language and communication that Matthew is able to do.

It’s taken me six days to write this blog post because I’ve needed that entire time to frame my own thoughts and let all this new information settle into my mama heart. Yes, I will honestly admit to you that the thought of starting in another department at Children’s makes my heart sink. I was pretty sure we were done with treatment and major interventions for a few years, and now here we are beginning a new process in a new section of the hospital.

But I also feel defensive of my son—of wanting to protect this fragile time in his development and be the mama lion who roars in defense of the time he so desperately needs to catch up. Will my son talk? Yes, I believe he will one day. Will it be tomorrow? Probably not.

Kids who started their lives in orphanages can’t be tracked the same way that kids can who started with parents in a nurturing home. It’s just not the same environment in ANY way. Adopted or not, kids who start their lives in the arms of parents who dote on them, care for them, and love them develop and grow differently than those who lie in a crib from morning until night with very little adult interaction.

And when I think about this start to life for my son, it makes me want to weep. The scars of being an orphan stay with children long after they have families of their own—this we know to be true.

And we also knew of the risks of adopting a child internationally from an orphanage setting. Delays are inevitable—you just don’t know what type they will be.

I was playing the “life could be worse” game a few nights ago, thinking about how much harder it would be if Matthew had an attachment disorder rather than a speech and language delay. One of the things I can count on from my boy is his enthusiasm for his mama—his hugs, the way he grabs my hand and leads me around the house, the smooth feel of his cheek when he lays his head on my shoulder as I’m singing him to bed at night.  This boy might not be talking, but he shows his love and affection for his family in so many ways, and we feel the same kind of fierce love and attachment to him.

Which is why I know we will get through this crazy time—no matter what the pediatrician at the Neurodevelopmental Center tells us. We signed up for this journey—we felt called to this adoption—and we will dig deep and find the strength within us to take our boy to yet another doctor’s appointment, with a new plan or diagnosis about his health.

It’s not the easiest thing in the world—and sometimes we feel tired—but we love this boy and would do anything for him, so this too we will do.

One last thought: I’ve been poking around on as many China cleft lip/palate blogs as I can, trying to find someone out there whose story sounds similar to ours. I’d love to find another family who adopted a kid with a speech and language delay. Do you know someone? Are you that someone? If so, I kindly beg of you to comment or email me or reach out.  I could use a fellow mama lion in this process—someone who understands how this feels. It can be kind of lonely sometimes, trying to navigate these unfamiliar waters with a child who doesn’t match up to the charts like he should. Kind, understanding words buoy me like nothing else in the world.

Your kind thoughts and prayers are also appreciated, as always. We never feel alone, even when our questions and worries threaten to swallow us whole. For this I am ever grateful.

And now here are some new photos our boy--with his kind eyes and his piercing gaze. Man, do I love this kid.

After bath--man, do I love this kiddo!

Ready to go for a walk in the Kelty backpack

A pensive moment

Riding his Wheely Bug around the kitchen!

Tuesday, April 9, 2013

A Northwest Kid

Some days I'm struck by a deep sense of place and just how that sense of place will eventually impact Matthew.

When we were in China, there were families there from all over the country adopting children. Many of them were from Texas or the South--a few from the Midwest, and a few from the East coast. There were Californians as well as one family from Oregon, and a couple Washington folks like us. At one point during our trip, it dawned on me that each of the children being adopted would be going to a different part of the country and would grow up being shaped by that place.

This struck me even more strongly about a month after we got home when I took all three of my kids to the Darrington Bluegrass Festival. There we were out in the boondocks of Western Washington, sitting next to a bunch of hippie outdoorsy folk listening to one bluegrass band after another. It was such a wonderful afternoon, and already Matthew was exploring his world, looking all around, and taking everything in.

Our kid is definitely a Pacific Northwest boy. What gives it away? Perhaps his bright green North Face fleece and his Crocs. Or the way he LOVES being outdoors, putting his hands in the dirt, licking the raindrops, and exploring trails and beaches.

When I look back at all the photos we've taken of Matthew since he arrived home in Washington, I'm struck by how many of them were taken outside--on a hiking trail, at a beach, at a park, in the rain, in the backyard. Our boy can't get enough of the great Pacific Northwest outdoors, and I couldn't be more thrilled.

Here are a few of Matthew's recent adventures exploring the world.

Checking out the seesaw at Kayak Point.

Going down the slide with help from Aunt Chris--straight into Grandpa's arms

Finally tackling the seesaw by himself!

Family adventures at the park
A walk in our neighborhood

Leading the pack: walking with Aunt Chris and Grandma & Grandpa Russell

Tuesday, April 2, 2013

Just a few fun photos

Sorry this blog has gotten kind of heavy the past few entries. If you know our journey or can imagine it, I'm sure you understand that it is filled with ups and downs. I've always struggled with how "real" to be on this blog. I don't want to scare anyone away from international adoption, especially of children with cleft lip and palate. But I also don't want to be guilty of portraying our life through rose-colored glasses. It's not easy, but having Matthew in our lives is a blessing and a gift that I celebrate each day.

And especially these days, as we are nearing the one-year anniversary of our trip to China. It's still a month and a half away, but I vividly remember all the waiting last year, the anxiety, the wondering, and the longing for Matthew. Every time I remember those emotions, I feel a rush of gratitude that he is here with us, and that no matter what we face, it's good just to be with him in person. The waiting, knowing he was in an orphanage halfway around the world, was dreadful. It's good to have him home.

Here are a few fun photos of our boy. I am so happy with how his lip is healing. I've read a couple places that it takes over a year for the scars to stop being so bright red, and even now, depending on the day, they are pretty mellow and not overwhelmingly noticeable on his face. Honestly I don't even think about it much anymore, but I am reminded about his lip repair by others in public sometimes. It's not usually anything unkind--just curious people wondering about it. I'm learning to answer kindly and graciously, seeing myself as an educator and a representative of cleft.

Thanks, readers near and far, for following our journey. I'm still amazed by how many people read our blog on a daily or weekly basis . . . it's a reminder of the way our stories can reach out of our own lives and weave themselves into the lives of others, even those we haven't met. Please feel welcome to leave a comment anytime--we love knowing who is reading our posts!

Here is Matthew on the ferry to San Juan Island. That's my mom (Marmie) with him. He loved the window.

Pressing his cheek against the cool glass.

The kids in the car, waiting to come home to Anacortes.

That boy loves the velcro on his shoes.

Getting some Daddy tickles