How Are We Doing Without Luke?

It's been more than a month since Luke left.  I know people are wondering how we're doing, and the short answer is, for the most part, we're good.  But I think I'm ready to share more than that now.

My biggest concern was for the little girls.  I worried that Hannah and Katie would be thrown off kilter by him leaving.  That they might doubt their permanence here.  Not wanting Katie to be alone in the room that she'd been sharing with Luke, we moved Hannah in with her right away.  This delighted both the little girls (and Brianna, too, who got her own room out of the deal!) so much that they barely noticed Luke's absence.  There has been no clinginess, no regression, no sudden "issues" popping up.

We've gone out to dinner as a family again for the first time in well over a year.  We've gotten out to the park and the library more.  As you've probably noticed, we've started taking field trips again.

The house is quieter, although some of us have heard "phantom cries," sort of like sudden amputees experience with an itch that's not really there any more.

After the first couple weeks, where we'd run across his things in the wash, or come across something of his unexpectedly, I started to decompress enough to realize just how "off" I'd gotten, mentally.  A milestone happened for me:  I wore shorts again.

Now, I know this sounds ridiculous.  You have to understand that last summer, I was in such a bad place emotionally that I could barely manage to shave both legs in the same day sometimes.  I was depressed and overwhelmed, and I was literally hanging on to the hope of Luke starting school in the fall so we'd have some respite from the frequent screaming fits Luke was having before we got his seizures under control.

I'd gained some weight since the previous summer, and even once I bought a pair of shorts that fit me, it was just too much of an effort for me to shave above the knees.  I'm embarrassed to admit this, but I found myself thinking, "I guess I've gotten to the point where I'm too old for shorts."

That's how messed up my head was.

I thought my life was ending, bit by bit.

The sad thing is, things didn't get better when Luke started school.  Oh, it was nice not to have therapists coming to the house 3x/week, but having to be home at 11:07 and 1:48 every day for the bus played a huge part in turning me into a hermit.  Luke moving from the stroller to the heavy, awkward wheelchair was another factor.  I could barely get the chair in and out of the back of my van, and often ended up with tire tracks on myself.  It was too much of a bother to go anywhere with Luke, and there wasn't enough time to go anywhere without him.

With the perspective of hind sight, I think that I lost the ability to just do the next thing.  I was so freaked out by the long term big picture that I couldn't just focus on the day or moment at hand.  I couldn't get past the idea that I was going to be changing his diapers until I died.  Maybe it sounds petty and trivial to you, but I couldn't climb out of the despair I'd slid into.

My initial relief at placing Luke with a family who accepts him the way he is and is comfortable with the level of care he requires got me through the early transition period.  We got rid of the crib, high chair, and changing table right away.

As we adjusted to our new normal, 2 feelings stood out from the whirlwind of emotions.  The first was guilt, of course.  I'm so sorry I couldn't be the mom Luke needed!  Guilt over not being the supermom people used to say that I was.  Guilt that the rest of my kids all suffered while I was drowning in inadequacy.  The second feeling was relief.  Which made me feel even more guilty.

Gradually, more feelings surfaced.  I feel sad.  I feel loss.  Selling the double stroller at a garage sale was like saying goodbye to the last reminder of how I thought things would be.  See, the stroller was a huge purchase for us.  I looked at several different ones when we decided to bring home 2 children.  I kept coming back to the big, beautiful red one with the seats that could face in either direction.  I thought how it would be good for attachment to have the little ones facing me while we walked.  That stroller saw more trips to doctors' offices than any other sort of outing.

I really thought that Luke would thrive within our family, and that with love and nutrition and encouragement, we'd all be amazed at how fast he started walking and learned English.  I thought that after some Early Intervention and one outpatient surgery, we'd have a normal, healthy little boy.  And I'm sad that we didn't get that.  I see other families bringing home kids in the 2-3 year old range, especially kids with limb differences like our girls, and I think, "We could have parented that child," and my heart aches a bit.  

For the most part, we're fine.  Things are moving on, and I'm happy with our new normal.  I am free to focus on the older kids more, and enjoy the limited amount of time I have left with the teens here at home.  But I wonder how long it will be before I can eat a piece of pizza without remembering all the times Luke ate my crust for me.

Birth mothers who decide they cannot parent a child are usually made out to be either saints or villains.  Adoptive mothers who decide they cannot parent a child generally just get vilified.  In both cases, it's far more complex than that.  It's a heartbreaking choice.  It's a loss.  And yes, it's a chance to salvage a less than ideal situation and try to move forward in life.


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2013 Year in Review

January brought our Log In Date, or LID for Katie and Luke's adoption.  Hannah was measured for her wheelchair in January as well.

February brought us 3 new children for 2 months!  We hosted them with Safe Families.  I have a photo collage hanging over my desk of our 7 Safe Families kids that passed through our home between Sept. 2012 and April 2013.

We celebrated Chinese New Year and 3 birthdays in February, as well.

March brought our Letters of Approval (LOA) for both Katie and Luke from China.  And at the very end of March, we had Easter.

Only, in all my underachieving glory, our egg hunt didn't happen until April.

April was our anniversary, senior prom for Annaliese as well as 2 more birthdays in our house.  And we got an update on Katie.

May brought graduation, Mother's Day, and the county fair.  Oh, and TA, or Travel Approval from China for Katie and Luke!

June was largely taken up with travel to China.  Meeting Luke and then Katie and seeing the sights was amazing and exhausting.  I came home sick, so the remainder of June was a little bit of a blur.

July was full of summer camp, VBS, a visit from Grammy, and 14 medical/dental appointments.  Annaliese moved to Santa Rosa in July, and we also had Luke's birthday.  Hannah started school in July.

August only had 10 medical/therapy appointments, and was when we started getting our feet underneath us.  Katie went through serial casting for her clubfoot, and the process of getting her prosthetic made for the other leg.  Luke had more evaluations and tests and began therapy.

We also went out of town a couple days for a funeral.  Sam started school in August and we began our homeschool year then.

September found us hitting our groove, homeschool wise.  We celebrated Moon Festival.  We had 14 therapy/medical appointments.  (The photo above was taken on the way out the door to Luke's MRI.)  It was also Zachary's and then Katie's birthday month.  She got her new leg and took her first steps.

October was the start of fall weather, trips to the pumpkin patch, art lessons, and 19 medical/dental/therapy appointments.  We also had a fun field trip to Chik Fil A.  October was also the month I put the finishing touches on the panda room, Katie and Luke's shared bedroom.  Zachary moved back to California in October, too.

November was family pictures, and Thanksgiving, of course.  With most of the therapists taking Thanksgiving week off, we had only 12 medical/dental/therapy appointments.  

December brought another 12 medical and therapy appointments.  I suddenly realized how many reviews I'd been doing.  December was also Christmas, which was actually quiet and peaceful.  Not words I'd expect to use to describe having all 10 kids home.  We celebrated with our traditions and made new memories.

So that was 2013.  And now we look forward.  Personally, I look forward to spring, when the flowers bloom, and Sam's allergy medicine makes him tired, and the weather warms up so we can go outside again.  I look forward to more sunshine, more daylight.  In 2014, I look forward to Brianna starting high school, and (fingers crossed) the littles starting preschool.  I look forward to a milestone wedding anniversary, summer vacation, and getting to a place of acceptance with Luke's issues.

2013 started with excitement and anticipation for me, and ended with disappointment and depression.  It can only go up from here.


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Got Diapers? How about Soap?

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I did a post comparing Honest Co diapers and Seventh Generation diapers here.  I originally expected it to be more expensive to have diapers delivered, but that turned out to not be the case for us.

You may be saying, "Wait, I thought you used cloth diapers?"  We do, about half the time.  Since I have 2 in diapers, and another child who wears a pull up at night, the Honest Company bundle for one works great for us.  We get one pack of pull ups and 5 packs of diapers, plus the included wipes.

One of the features I love about our Honest Company diaper bundle is that if I'm using more cloth, and we're not ready for another bundle yet, I just push the delivery date back.  You get a reminder email before the bundles ship.  When this comes, I check my stock and decided if we're ready or not.  I can easily select a future date on the website.  I can also change my pattern selections.  They've got some cute new ones.

If you do both the diaper bundle and the essential bundle, you get free shipping.  Honestly, (no pun intended) this was the reason why I tried the essentials bundle.  Turns out, I've liked the products.  We've tried the laundry pods, the dishwasher pods, the dish soap, the shampoo & conditioner, the rinse agent, and more.  Actually, I was putting the healing balm on Annaliese's dry, cracked hands last night.  It's good stuff.

It's really nice to not ever have to make a mad dash to the store for diapers.  Especially this time of year, when stores are so crazy.  One less thing on the to do list is always good, right?

I'm an Honest Company affiliate, so if you click through one of the banners here and place an order I do receive a little commission from them.  But I use these products, and I like them, so I think you might like them, too.

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Thankful and K&L update

Last night, I got to connect with a group of adoptive mommies.  It was good.  There's been a "fellowship" shaped hole in my world for a while, and even though several of the ladies were strangers to me, we shared enough in common that I felt the hole start to fill.

Online interaction can be good, but it's no substitute for real people to laugh and cry with.  And though our journeys ran the gamut from "hoping to travel by Christmas" for their first child, to those who've been walking the adoption journey longer than I have, and spanned every sort of adoption there is, we were brought together by the need for someone to understand that sometimes it's different to parent a child who didn't come to you the same way your friends' and neighbors' children did.

While I'm here, I'll mention that we had our 6 month post placement visit for Katie and Luke on Friday.  It went so much better than our "2 weeks home" visit did, when I was sick and miserable, and Luke wasn't sleeping through the night.  I liked our new social worker, and she seemed to click with us better than the last one did.  (She might still think we're freaks, but she was much more professional about hiding it, if so.  Which I appreciate.)

People have asked me how things are going, particularly with Luke, so I guess it's time for an update.  It's going slow, but it's going.  We're working on more self feeding, and he's making good progress in that area.  We're also practicing "walking" him from place to place, taking advantage of his newborn stepping reflex to get him used to the idea that this is how people get around.

Luke with his physical therapist

As for how I'm doing with it, well, some days are better than others.  I haven't really taken the time to grieve the bright, cute, funny Asian boy I was hoping for, the child I'll never have.  It's sort of lurking beneath the surface as I see pictures of other little boys on blogs and think, "He can walk.  He can _________."

I think part of the problem is that in the China special needs adoption program, you get to pick your child.  And if I had known the extent of Luke's needs, I wouldn't have picked him.  So, yeah, there's a lot of emotion wrapped up in all that.  Let's just say, I'm not "there" yet.  At the place of acceptance, maybe.  The place where I say how wonderful things are.  The place where I say how much we've learned or grown from having Luke in our family.  We're still at the "this is hard/overwhelming/confusing/disappointing/frustrating" place.  And I hate that I'm that shallow.  That I can't just be the adoring mother he deserves.

I deeply appreciate all the people who have been praying for us, and hope that you will continue to do so.  It's keeping me going.


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Lukey's First Haircut and DME

Lukey's hair was getting out of control.  Sam even put barrettes in it.  

Sam and Luke are cute together.  

But they both needed haircuts.

I finally took some action.  

I know it's not his "first" haircut, but it's his first one with us.  

He did surprisingly well with the whole crazy idea!  

A couple days post-haircut, Luke got his first Durable Medical Equipment.  :sigh:  The milestones only a special needs mom could love?

This is his physical therapist and his infant development teacher taking him for a cruise around the kitchen with his new stander/walker.  He's just too big for the Elmo walker we borrowed from a friend.  His PT really wants to see him up and engaged, rather than on his back all day long.  

And this little missy?  She gets really insecure when we have "strangers" in the house.  It's not uncommon, and it's not surprising, but it can be frustrating.  I don't know if she's reacting to the weird people, the change in the routine, or the fact that during therapy, it's all about Lukey, but it makes balancing everyone's needs just that much more challenging.  

But she's still pretty stinkin' cute.  

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Post Neurology Visit Update On Luke

Here's Luke, waiting to see the neurologist yesterday.  

I wish I had answers, some sort of something new to report, a diagnosis, something.  I left the office singing, "But I still haven't found what I'm lookin' for..."  

I have a new sheaf of papers to add to Luke's medical/therapy binder.  Test results from the EEG, the MRI, the urinalysis, and the bloodwork.  Orders for more testing.  And a very smart pediatric neurologist who looked at Luke and shook his head in bafflement.  

In summary:  his MRI showed a decrease in white matter, his EEG showed seizure activity, his bloodwork showed a highly elevated liver enzyme.  And nothing to connect the dots.  It's not Mosaic Down Syndrome.  It's not Fragile X.  It's not Autism.  

Remember this?

 We get to do it again.  I wish there was a way for you to hear the enthusiasm in my voice when I say, "Oh, goodie."  

We also get more blood tests to check his arsenic and mercury levels, and to look into the possibility of mitochondrial issues (that elevated liver thing) which seemed to have the neurologist a bit concerned.  

On other fronts, feeding therapy is going well.  It's hard for me to get excited about the therapist teaching him to get messy, but I understand that it's part of the process.  

This is Luke's new thing.  He will grab our hand, or sometimes the spoon we're holding, and guide it to his mouth.  

He gets frustrated SO easily.  But one meal at a time, we're working toward some sort of self feeding.  His therapist recommended these Lil' Dipper spoons (he's using one of hers in the pic above).  I have to say a huge thanks to those who shop using our Amazon link, as the Amazon credit we earn from there goes to things like these.  

His physical therapist (behind Luke) and his Infant Development teacher (in front of Luke) come out to the house for therapy, too.  

Which Luke enjoys immensely.  

As you can tell.  

Actually, some parts of it, he does enjoy.  Some of the toys they bring interest him.  But they push him outside his comfort zone.  Which is GOOD.  But he resists it.  His PT is trying to get him to reach to the side more and to twist his body a little, and to balance.  

He's regressed in the last week or so.  He suddenly refuses to sit up by himself any more.  If I sit him on the floor, he throws himself backwards.  He doesn't mind slamming his head into the floor over and over (or he doesn't grasp the cause and effect) because no matter how many times I sit him up, he flings himself back again.  He actually bit his lip and made it bleed a few nights ago.  We have no idea what's causing it.  He doesn't have a diaper rash, or any physical reason.

So that's what's up with Luke, in a nutshell.

I'm still struggling with all this.  I was really hoping to have a label after yesterday's visit.  An explanation.  Some indicator of prognosis.

Taking care of Luke feels very thankless.  With a typical child, there is a give and take in the relationship.  For instance, when I open the bedroom door in the morning, Katie stands up in her crib and says, "Hi mama!"  Luke has no response.  I pick Katie up and start getting her dressed, and Luke starts fussing, which quickly progresses to screaming.  After dressing Katie, I set her down and she toddles off to her chair for breakfast.  By now, Luke is worked up and cries through getting dressed.  Then I take him downstairs and make breakfast for them.  Luke fusses even more urgently once he's in the high chair.  I give Katie her food and sit down to feed Luke.  He is screaming and can barely take a bite.  Once he gets the first gulp down, I have to shovel quickly, or he starts yelling again.  Toward the end of the meal, I can try to get him to pull the spoon to his mouth, but if things slow down too much, he starts slamming his head with his fist or pulling his hair.  Paul took the back off the high chair because he used to slam into it so hard the front legs came up off the floor.  I was afraid he'd tip it over, and his feeding therapist said a high chair with a low back might work better for him.

On the days when I start dressing Luke first, I set him on the floor while I get Katie dressed and he cries.  If I put him on his tummy, he cries and flips onto his back and kicks around the room screaming.  If I put him in a sitting position, he throws himself backward and then kicks around the room screaming.  Notice a theme here?

Imagine dealing with this, day after day, knowing that picking him up isn't going to make it better, because he doesn't care if you hold him or not.  Imagine not being able to comfort your child just by being their mother.

When I do his physical therapy practice with him, he cries, face plants into the floor, and ends up busting his lip open.  Again.  He'd much rather lay on his back and tap the back of his fingers against a wall, chair leg, or bookcase.  By himself, thankyouverymuch.  And honestly?  In the midst of homeschooling, it's easier to just let him lay there and do his thing while I'm busy with the other kids.  But I feel guilty about it.  Katie will periodically check in with me while she plays.  Luke doesn't care if there's anyone else in the room or not.  He doesn't light up when he sees me.  He doesn't reach for me to pick him up unless I force the issue, and even then it's only one hand.  Katie gives kisses and says, "I lu do!"  Luke drools and pinches.  Hard.

It's not even that I'm comparing the two of them to each other, although I know it sounds like I am.  I'm comparing Luke to a typical child, to my expectations of what I thought Luke would be like.

It's been 3 months.  In those 3 months, Luke has learned to sit for longer periods of time, although he now refuses to do so.  He's learned to hold his bottle.  He's learned to reach for his bottle, and sometimes other things.  He's learned to scoot on his back.  He's beginning to learn to chew and drink from cups.

It's hard not to contrast that with Katie, who, in those same 3 months, has learned to walk, is learning to speak English, has developed relationships within the family, and is thriving in general.  This is the hard part of adopting two children at once.  The having a barometer of development to compare and the inevitably finding one child fall short.  I think, however disappointing Luke's delays would have been, they might have been easier on me if he were the only one.  If all my focus could have been on him.

I don't know where I'm going with this.  Maybe I should just stop typing.  Please pray for me.  Being Luke's Mom is a lot harder than I expected it to be.


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Home 2 Months

This milestone actually happened a few days ago, but I was without my computer at the time, so pretend with me.

Two months. Wow.

25 appointments, just for my China kids.  That doesn't include the older kids things like youth group, or football.  That doesn't even include lab work, now that I think about it.

Hundreds of pictures.

 

And lots of milestones.

What has changed in the last 2 months?

Our first day together in China

Well, for this little girl, she's speaking more and more English all the time. She asks me to identify Ev-ery-thing she sees.  Hair, panda, and banana are popular words with her. She's finally saying "Night night, Mama!" when I say "Night night, Katie!" instead of repeating, "Night night, Katie."

at the park in August

We are almost finished with the babies' bedroom, and in fact, it's done enough that they're now sleeping in there. I can't wait to show pictures when it's all finished.

at the breakfast buffet in China

This little guy has changed, too.  He's eating a wider variety of foods, and starting to move his mouth more while eating.  He doesn't throw fits nearly as often as he did when we were in China.  And he's finally starting to use his mouth to receive input.  He doesn't yet put toys in his mouth, but I have finally seen him touch them to his mouth.  It's a start.

at the park (same day as Katie's photo)

Lukey, unfortunately, often has a boo boo on his face, because he has no self preservation instinct yet. When he falls, he doesn't try to catch himself. In fact, when he's tired of sitting, he usually goes straight over backwards, which freaks me out a little. The current owie on his lip isn't healing because he keeps rubbing the scab off and bleeding up his nostril. Gross, right?

So we're settling in.  It's easier now than it was when we first got home, and I know it will be easier still in another few months.


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