The Gospel According to Alex

Playing with Matthew, taking a break from preaching the Word. :)

Alex wanted to "read" the gospel of the day in bed, before sleeping. I give him a book and say go ahead and g'nite. 

A few minutes later I'm in the next room and I hear: "and Jesus said, no more monkeys jumping on the bed. The gospel of the Lord."

Gait analysis clinic

"This is not as fun as it looks."

Earlier this week Alex went to Mayo for a gait analysis clinic. It was a LONG day. "LOTS of appointments," he kept saying.

The big one was the actual gait lab, which involved four adults (not including me) working to make Alex the bionic boy for a few minutes. After taking lots of measurements where he tried to stretch, extend, and bend as far as he could, they began attaching microphones to his legs and little silver balls all over his body, but especially his legs. Cords were attached to the microphones, and when he moved a leg, the computer registered the strength of the movement in a variety of muscles. By the time has was all "hooked up," they picked him up and asked him to walk (with support on each side). He would walk two second, then one of the silver balls would pop off (because he is scissoring so badly all this electronic gear is getting bumped). They would redo, set him up to walk, and we'd get two-four seconds, and boom--stop, lost a ball, or lost the signal on this microphone, etc.. I honestly thought it was a bit touch and go, because Alex was getting tired, and they were having a hard time getting the readings they needed. In the end, they said they didn't get everything they wanted, but they got what they needed. Then they took bionic gear off Alex, and asked him to walk (with one person support) for videotape. He did better on that. So, two hours after we started there, we were off....

Reattaching electrogear in the walking....

After lunch, we went to "Mayo 16 East" for appointments with the social worker, his PM&R doctor, and an assessing PT. Oh, and a pelvic xray. The xray was short, but the appointments were all an hour long. Alex tends to be very good at these appts, but he was really flaming out by the end of this day.

Anyway, our PM&R doctor spoke to us more about the selective dorsal rhizotomy, and if I get anything wrong here, blame me, not her. The way it is done at Mayo is that these surgeries occur on Fridays, and total going into surgery and back in recovery time is about 4-5 hours. The surgery involves going into the spine and isolating nerves that send messages to legs. They want to cut the nervelets that send the spastic messages. They also cur sensory nerves, not motor (?) nerves. They test each nervelet as they do this. They do not cut more than 70% of the nervelets--and in general, as few as they can. But even if an area has 100% spasticity, they only cut 70%. After that point, it is very hard for a person to recover strength. You can read about selective dorsal rhizotomy in great detail at the St. Louis Children's Hospital -- pictures and everything.

She said he would initially seem much worse--kids who have this done are very "floppy." The initial recovery is to mend the spine, but she said they do light physical therapy the day after surgery (very light). And epidural is helping a lot Saturday and Sunday. Monday, barring complications, we go into a 3 HOURS OF REHAB routine 5 days a week for two weeks. Weekends are off. Then we get busted loose and we continue 5 days a week PT at home through Winona rehab services...although 45 minute sessions then. She said the daily PT (except weekends) is to be expected for the first three months, and the full effect of the rhizotomy would not be seen for a year.

In terms of surgery recovery, this is shorter than the rhizotomy that is done at Gillette (6 week in hospital recovery). She explained why and the pros and cons of each procedure, and I could see a great debate among medical professionals about which to do (she explained them very objectively, I must say). We asked if she was confident with the results she sees at Mayo, and she said absolutely.

They have not decided to do this yet. March 20, the doctors there meet to discuss whether he is a candidate for the procedure. (Basically, if he is too dystonic--that is, he has too much mixed tone--this will not help and will make things worse.) The assessing PT was friendly but concerned that he has very low tone in his trunk. She volunteered that she was seeing him at the end of a long day, never a good time to make assessments, and said she would check the video that the gait lab produced. We also talked about how this has been an issue since we adopted him, but despite appearances, he has made real improvements. So on March 20, the PM&R doctor said she would call us and let us know what the medical staff decided. And then would ask us whether we wanted to proceed. If we say yes, we get to visit Mayo A LOT in the next few weeks for pre-op procedures and another MRI. Surgery would be on a Friday in May; we would hope for May 2, but we are not guaranteed that date, as these things are difficult to schedule. After the surgery, one of us will stay with Alex in Rochester for 2.5 weeks.

They are all talking like it will be worth it in the long run. The advantages of this surgery for Alex is that it will help prevent (more) muscle contractures, decrease spasticity pain, and give him a better shot at walking well in a walker (when Jerry raised walking with crutches/canes, she said she didn't really see that in his future, which doesn't surprise me). And so, we wait. We're depending on the doctors here to make a good decision about whether this works for Alex or not. If he is not a candidate, we're back to Botox injections and maybe a baclofen pump (a move they and we are not thrilled about perusing).

If you want to see more of the gait lab, see the video below.
--Susan

Alex gets a new Tripp Trapp high chair

About a month ago, Alex got a new Stokke Tripp Trapp chair to better position him at the table. The design is ingeniously simple, as you can see from this video (which comes with an extra helping of Alex/teddy bear cuteness on the side):

Previously, Alex was sitting in a Wenzelite Seat2Go strapped into a regular kitchen chair. It was bulky to move, and because there was no foot rest, every time his spasticity made him straighten out his body (which happens every time he gets excited), his butt would scooch forward a little, which would leave him in a slouched position. It also forced him into a reclining position, and was difficult to clean because it was made of fabric. The Tripp Trapp chair is light, gets him right up to the table in a good position, and is easy to clean.

Contents of the box

It’s relatively easy to assemble; I figured it out in about 45 minutes. You can price them at Amazon, although you might find them cheaper elsewhere. Thanks to Alex's godparents for once again stepping in to help out!

I love you...SO much!

Susan posted this to Facebook, so you might have already seen it there, but it seemed worth cross-posting here as well:

A recent Alex moment: Alex got a big bang on his head (accident) while we were visiting relatives, and began to cry (very unusual for him, he does not cry--so he was hurt!). My other kids ran to get me, and I came out and took care of him (ended up holding him for an hour, although he was calm after a few minutes). He's been processing this for days now, although the bump doesn't seem to hurt him.

Alex: Mom, why you go outside for me?
Me: Why do you think, Alex?
Alex (whispers): Because I was crying.
Me: Yes, you were crying because you were hurt, right?
Alex: Yes. But why you come?
Me: Because you are my little boy and I want to take care of you. Because I love you.
Alex (smiling big): SO much.

I think he is processing this because he likes hearing me say that: I want to take care of you. I love you. (and he always adds "SO much.")

Alex trains for the U.S. Winter Olympics luge team

 

Big announcement! Drumroll, please! After witnessing Alex’s stunning performance on the sledding hill on Sunday in -20 degree Fahrenheit (windchill factor) weather, we have decided to allow Alex to fulfill his aspiration to join the U.S. Winter Olympics luge team! As you can see from the attached video, he’s a natural. Not even a major wipeout could keep him down! No, he was ready to “do it again” right away!

Seriously, Alex did enjoy sledding a lot more this year than last year. For the most part he went down with one of his siblings or alone, backwards (facing uphill). As long as he was sent down straight, he did fine. (At one point you will see me advising him to go down straight to avoid flipping; of course, in retrospect, that was a dumb thing to say!)

Coming up soon, we’ll be posting Alex’s newest adaptive seating solution—a Tripp Trapp chair.

Now for the highlights reel:

And finally, the hot chocolate:

A Sweet Moment

I put Alex to bed tonight and he said (as he always does) "You going to work now?" (He means work on the computer in my room.)  I said "A little, but I want to go to bed soon because I don't feel good.  I am sick."  Deep concern.  "Oh no, Mom.  Where do you hurt?"  "My head hurts and my tummy hurts.  I'll be OK, I just feel sick."  He reached out his hand to touch my forehead (like the sign of the cross--we do thatwith our kids before they go to sleep).  I asked, "do you want to pray for me tonight?" He said "Yes..."  Then he folded his hands and said:

"God, please help. Mom sick, help her get better.  Better in head and in tummy.  Amen."

I gave him a big hug.  Not only was it a heartfelt prayer, it was a pretty extended train of thoughts expressed at once for him.

This was Alex 16 months ago

You know, after more than a year of having "Sasha" home, it's sometimes hard to remember how much progress Alex has made . . . until you go back and look at those orphanage videos. So, just take a few minutes to compare these to the videos in the last post (from his birthday):







It's simply amazing what sixteen months have done to transform this boy. Notice how very childlike he seems -- especially notice the fascination with dropping the wand in the first video, a sort of infantile developmental task. Notice his environment -- very nonverbal. He's spoken to, but rarely speaks; when he did, his Russian was almost always deemed unintelligible by Russian speakers both in country and back here. It's amazing to compare this practically nonverbal child of sixteen months ago to the kid who chats up a storm with anyone who will listen today.

If anyone ever doubts the importance of giving kids the right environment in early childhood, they should take a look at these videos and then compare them to the kid we have today -- the kid who has emerged thanks to the dedication of an amazing team of professionals in the ISD 861 school district, his amazing PCAs, and the loving influence of his siblings.

Medical updates

Hi everyone, Susan here.

We wanted to update people on a number of medical realities for Alex. We decided mid-summer to switch Alex's care from Gillette to the Mayo Clinic. Alex's PM&R doctor was leaving Gillette, we were burned a few too many times by their bureaucracy, and the length of the trip was wearing us out. We investigated Mayo with some caution, because even though Mayo has a deserved international reputation for excellence, that doesn't mean they are the best at everything (shh, don't tell them :-) ). We were bracing to stick it out with Gillette if it was better for Alex. But we needed to explore Mayo as a possibility.

Well, short version is we're really pleased. We were set up with a neurologist, Dr. Bodensteiner, and he has referred us to other physicians within Mayo. Appointments were set up very quickly, and they have a tentative plan for Alex going forward.

 1. First, Alex had an MRI...something that would have been in his future soon at Gillette as well. The idea was to look at the brain damage (CP assumes that) and try to measure his possibilities for improvement. He has significant brain damage in the area that controls mobility, and he said that's not surprising, because that part of the brain is developing at 30-34 weeks gestation and Alex has born at 31 weeks. It points to some kind of traumatic premature birth and a lack of oxygen and/or blood flow for a time. The mild surprise was that Alex has no cognitive brain damage, at least none visible through an MRI. As the doctor said, that is very encouraging for his future development. The other surprise was that Alex has some brain damage in an area called the pons...which controls movements of the mouth (speaking, chewing, swallowing, etc.). He said it was consistent with being severely dehydrated and then too quickly rehydrated after birth. It's an after birth sort of injury, not related to CP. It doesn't seem to effect him much if at all, which is good.

2. The Mayo PM&R team want to move Alex toward a possible rhizotomy, probably in June 2014. They are not sure he is a candidate for it, but they think it is the best possible way to address his spasticity issues, since the Phenol and botox are not having the effects any of the docs (at Mayo or Gillette) would like. He's also on Baclofen now, and its questionable how much of an impact it is making. Everyone there is resisting the idea of a Baclofen pump, which is fine by me. But he needs to go through a few assessments before the decision to do the rhizotomy is cast in stone. Basically, they want to see that he isn't too dystonic, because the surgery doesn't address that.

The way I understand it, the surgery isolates the nerves that deliver the faulty brain message to go spastic in certain places, and those nerves are cut. It's all day major surgery, and the rehab time at Mayo is three week in hospital/rehab center. You basically relearn everything from the waist down. You can see it isn't something done lightly. But beyond Alex not making progress walking, the spasticity is such that it could really harm his hips--he already has some dysplasia from the spasticity.

Also, I'm no expert, but I have heard there is a window for this surgery, and Alex is in it now. So while it would be great to delay this until he is considerably older, that won't work.

We're very happy with the way Mayo is listening to us but also taking initiative and offering a plan and how to get there. We always liked and appreciated the doctors at Gillette, but everything has been so much easier to get in place here at Mayo...and we've been very impressed with the doctors here too.

Did I mention our PM&R doctor adopted a child from Russia? :)

So: sometime in the next 4-6 weeks Alex will get Phenol and Botox again to do a gait analysis with his tone "quieted down," to see if he is a candidate for a rhizotomy. The decision will be made after a big pow wow of doctors across disciplines examine Alex (a spasticity clinic).

A lot of serious things going on, but all mixed with hope.

Alex hits a new milestone

Well, Alex has been with us a little more than a year now. We just returned from a two-week long trip to Alabama (by car, five kids, you can imagine), and he has definitely gone through another one of those "developmental leaps." We came back and all the people who usually see him were just remarking on how much he had changed. In particular, we're noticing that his vocabulary is much expanded, and he is much more conversational now than previously. Also, his fine motor skills have improved greatly. When he first came to us, he didn't know what to do with a LEGO block -- he'd throw it, but he couldn't make one stick. Now he loves playing LEGOs as much as possible. Take a peek:

Alex riding his new bike!

Alex received a new adaptive tricycle this week...an AmTryke Proseries 1512, to be exact. Two generous donors helped us with the expense. Alex has been very excited to ride it every day, no matter what the weather is (spring having decided to not show up this year, apparently). And as you can hear in the video, it is "excellent" physical therapy for him. (We were lucky to have his school physical therapist on hand for the inaugural ride, along with Julie, one of his personal care attendants.) Plus, with the help of his awesome personal care attendants, he has been taking it all over the neighborhood, which is tremendously empowering for him. Here's a video of the inaugural ride:

Alex is going to Madison....

You want to know what has been going on the in world of Alex the past three weeks?

• potty training, off and on (mostly off) 
• acquiring a wheelchair 
• acquiring a walker 
• trying out canes for standing/walking 
• getting appts for minor surgery June 7th
• casting for new braces since he grew out of the old ones 
• a new OT 
• hiring new PCAs to cover summer hours 
• figuring out if we can buy/fundraise an adaptive trike 
• buying earphones and an MP3 player that doesn't blast little ears out and  ...

...the one I'll mention briefly tonight, that Alex is going to Madison Elementary School. You local people know all our kids go to a charter school that does Montessori method, a great little PreK-8 school named Bluffview. We assumed all along Alex would go there. Our hope is that in time he will go there. We really went back and forth on this...Madison is the school in town set up for special education (which Alex is still going to need, at least for many more months, if not forever) and all the physical therapy/ occupational therapy/speech therapy that occurs in Winona area public schools is really rooted at that school. At Bluffview, the school would have to bring new PTs and OTs and STs in, and because they have a different arrangement (Winona district hires their own therapists and places them in the schools, while the charters in town have to hire therapists out of a program that works for the regional area), it wasn't clear how easily Alex's pretty darn significant needs would be met. What we were certain of was that Bluffview would try, and try hard. But they are dealing with realities they can't entirely control either. So Jerry visited Madison, a small older school about one mile or less from our house. It's where our kids would have gone if not Bluffview (or the Catholic schools). The special ed teachers are very nice and have been working at Madison a very long time. The therapists would be the same ones he sees now, and they're GREAT. The kindergarten teachers both seem very nice and welcomed Alex at last week's "round up" with "we've heard a lot about you, Alex!" Alex, I must say, was polite but nonplussed. He liked the gym.:)

I think and hope Alex will like it there.  Honestly, there are no real red flags, and it is clear they are the best set-up for Alex's needs (sort of one stop shopping for special needs kids in our town).  Everyone we have talked to there has been very supportive, and that goes a long way.  But it's also hard because 1) It feels a little weird to have four kids in one elementary school, and the fifth in another--like Alex is living in a parallel universe (again?)  2) We've never had a school other than Bluffview, which we know like the back of our hand now.  I looked at the Madison classrooms and couldn't help thinking "Really not Montessori."  But the things that Montessori does so well--sensory learning, self-initiative, etc.--are likely not to be Alex's strengths.  I mean, we're not sure he will be able to write well ever, but he seems to have enough control to type...or at least dictate through a voice recognition program.  He is likely to be more technology enabled than Montessori encourages.  Not that they wouldn't allow that--but if Montessori's strengths are not Alex's, at least in lower elementary, well, what's the point?

This is all to say that Madison has a reputation as a very good elementary school here, and we've met good people.  I think Alex will do OK, although I still have a hard time seeing him in kindergarten.  But I'm still a little sad about it.  In any case, if it doesn't work, we'll go to Bluffview and see what we can work out.

--Susan

"Sasha home! I home!"

Well, lots of news, little time to tell it.

We did get news that Alex has an official diagnosis of FAS (fetal alcohol syndrome).  Frankly this is not good news; it indicates more brain damage than just the CP.  But it also isn't unexpected and makes sense of a number of things.  More on that later....

But I wanted to mention some interesting things here.  Alex has been in a really, really good mood this week.  Cheerful, not many tantrums (last week was a bit of a bear that way).  And people are noticing: he's made some cognitive leaps.

The biggest was when I was putting him to bed four days ago.  We were looking at a picture book called "How do Dinosaurs Eat Their Food?," and when I flipped to a page when a dinosaur was flipping a plate of spaghetti (yes) I did my exaggerating reading that I do with the youngest kids "Oh NO!  Silly dinosaur!  No throwing, Dinosaur--right!"  Alex laughs and on a whim I gave him the Russian version "ne brosaitye, da?"  His giggling goes immediately to a all out laughing fit, and after a minute, he screams happily "Don't throw, Sasha!  Don't throw, Sasha!"--which stopped me in my tracks.  He hasn't called himself Sasha (his nickname, the only name he knew in Ukraine) in months.  We haven't called him Sasha.  And my "no throwing" talk was clearly to the dinosaur on the page.  It was obvious the Russian triggered a memory of being told "don't throw, Sasha!" in Ukraine (and I guess it wasn't bad, given how he was laughing).

The only place where we saw he would have the opportunity to throw anything was in the therapy room, where there was a ball pit.  He indeed would love to throw the balls out of the pit when we were there.  The next day, when he brought up the "don't throw, Sasha" language again, I suggested "Alex...do you miss Yana?"  (She was the woman who gave Alex some basic therapy on a regular basis in that room with the ball pit.)  He got serious fast and whispered "yes."  Keep in mind, if he had better langauge, there are a lot of things I'd say right now.  I'm not even sure he understands the word "miss".  But he recognized Yana.  So I thought about it and said, "Alex, I understand.  Is Yana nice?"  He again somberly said yes (and we thought so too, very overworked, but nice) ...but I'm not sure if the somberness is remembering Yana or worry about where this conversation is going.  Does he even understand that he is here forever, now?  Other times when he has heard people speaking Russian he has gotten very unnerved.  I touched his cheeks and said firmly and with enthusiasm, "Alex, this is your home.  THIS is your home.  Mama, Daddy, and Alex, all the time.  Yes?"  Huge smile again.  "Yes!  Sasha home!  I home?"  "Yes, you are home."

At family prayer, we ask the children who they want to pray for, and Alex has always said "the bus" (hey, he loves the school bus! this is an older picture, but deserves to be on this blog!).  But this one time, he said what sounded like Anya...I think he was saying Yana.  So we did.

In Alex fashion, he has been asking the home question the past few days.  A lot.  "I home?  I home?"  And grins ear to ear when we say yes.

Maybe this is why he is so happy this week. :)

An extended look at Alex's progress

Well, I have not been posting a lot lately because of everything we've been contending with around here...but in lieu of a long description of what Alex is up to, I thought I would post an extended video of his most recent physical therapy session. Things to look for, especially if you remember where he was at in June...note the advances in his social interaction and playfulness; language (longer and more sophisticated sentences); and physical abilities (see how well he stands up and sits up straight, with prompting). He looks more and more like a mischievous little boy, ready for the next fun thing to come along.

PT is fun

Just some pictures today....Alex does like his PT!

Drive, Alex, drive!

As Alex's Botox and phenol treatments have gradually helped his legs loosen up, we've seen a lot of improvement in his ability to move...he is frequently asking to "walk" (while holding on to our thumbs). He needs improved leg strength and his brain needs to learn how to balance his body standing up, but if he is able to pull those two pieces together, I think we're going to see him walking with canes within the year.

Here is another milestone. Alex's grandma had picked this little scooter up for him prior to his arriving home. Well, he wasn't able to balance on it, much less make it go, for the longest time. But just the other day, he figured out not only how to balance, but how to make it go. Here's what it looked like:

Run, Alex, run!

Alex received Botox and phenol injections on Tuesday. Today, just two days later, we're already seeing such a huge difference in his muscle tone and flexibility--and Alex has noticed, too. He could tell that something was different! And once he figured that out, he wanted to do a lot of walking and standing with assistance. To fully appreciate the following video, it helps to have seen him try to walk before. When he tries to walk without having his legs strapped into a walker, they "scissor"--each leg gets drawn in front of the other by the tightness of the abductor muscles in his leg. Having his legs constantly want to cross at the ankles makes it very difficult to walk--he needs to keep pulling one foot out from behind the other.

But today, he spent almost 45 minutes voluntarily walking around, with minimal support for balancing purposes. He was thrilled; in the video, you will hear him say, "Run! Run!" While he isn't exactly "running" yet, this is a HUGE breakthrough:




And the best news of all is that this is just the beginning. The effects of the Botox and phenol should continue to increase for the next month or so, opening up a window for more effective physical therapy.

On another note, we are still collecting money to send to Alex's old orphanage in time for the Ukrainian Christmas. If you are interested, please contact us by Jan. 1.

Alex at five and a half months

We know that when we start hearing a lot of “How’s Alex doing?” questions, it’s time for an Alex Update, so here you go!

Let’s start with his physical medicine and rehabilitation appointment at Gillette Children’s Specialty Healthcare on the Tuesday before Thanksgiving. We spent the hour we had with Dr. Najarian peppering him with all of our pent-up questions. Some key developments:

• Alex should be able to be toilet trained, in the sense that he is intelligent and shouldn’t have any cerebral palsy related problems with bladder/bowel control.
• Alex should be able to walk “independently” someday, with the aid of a light walker or possibly forearm canes.
• Alex is going to start getting Botox and Phenol treatments in his legs. These chemicals basically block neurotransmitters so that the message from his brain that constantly tightens his muscles is partially blocked, reducing the “tone,” or “tightness,” in his muscles. We’re waiting on paperwork to be finished to know exactly when he can start this local tone management, but we expect the first treatments to start within the next couple of months. The shots will need to be repeated every three months. Fortunately, they sedate the children so they don’t remember the experience and it isn’t as painful.
• The doctor also wrote a prescription for Alex to get a special seating device called Seat2Go. This device will provide the stability Alex needs to sit up straight and not worry about falling over, which in turn will allow him to focus on other tasks—like eating with two hands, other fine motor skills, etc.

Besides the good news out of the appointment, Alex has continued to make progress almost daily on all fronts:

Language

Alex’s English continues to improve steadily. He has completely stopped using Russian, and readily repeats any new word that seems significant to him. The more we see of his language development, the more we suspect that he never had enough language exposure growing up to really develop basic language skills even in Russian. In other words, our suspicion is that he is not only learning a new language, but in many areas, we think he may be learning language skills for the first time.

How well is Alex speaking? We think his vocabulary may be around 500 – 1000 words, although his sentence structure more resembles a three-year-old’s. Our toddler is more fluent than Alex, with a greater vocabulary and understandability, but Alex is catching up fast. His articulation is frequently poor. Those of us who work with him regularly can understand him well enough, His speech therapist believes his articulation will resolve (or at least improve) on its own, although he will probably need to work on it with someone down the road.

Alex clearly understands more than he says…a big clue being his improved ability to hold very simple back-and-forth conversations with grandparents on the phone.

Some favorite words and phrases that we hear from Alex: “Thank you!” “Almost all done?” “Have a nice day!” (to sibs leaving for school) “Okay!” (This last one you have to hear to appreciate, because he has this cute sing-songy way of saying it.) Many of his sentences begin with the words, “I want,” which is not surprising, given how important it is to be able to express needs/wants; I know I learned the Russian equivalent and used it frequently. He still relies heavily on single words to convey an entire thought or idea.

Social

Alex has just recently started interacting with his older siblings in a more intentional way. He can say all of their names (except Matthew’s) very clearly, and calls on them to play or to help him with his needs. He enjoys playing with his older sibs, and can actually wait to take turns and interact appropriately in most instances. One of his favorite things to do is to “ride” with Julia on a little scooter that his grandparents bought him; she uses her feet to propel it quickly around the house, which of course he loves; he grins and shouts, “Dad! Dad! Bye!”

His interaction with Matthew is much more limited, probably because their relationship is so ambivalent, and he knows Matthew’s ability to understand and help him is very limited. As far as I know, he does not interact with other kids at school on a regular, first-name basis.

Over Thanksgiving he got to meet his eighteen cousins on my side of the family…all at once, which was a little overwhelming…but the Gundrum boys took him under their wing and helped him to play some football, which he really enjoyed.

Overall, his social interaction is warm and friendly, and seems pretty typical for a kid his age, if you account for the impact of his orphanage experience. His psychologist and therapist are both extremely pleased with his level of attachment and social interaction. “Amazing” and “awesome” and “wonderful” are words they use a lot.

Physical/mobility

Thanks to the school district and friends with kids with disabilities, Alex has been accumulating a small fleet of mobility devices—a tricycle, a walker, two different wheelchairs, and a mobile stander. His current obsession is with the small wheelchair that he can use to get around the house. Because that wheelchair fits into our van easily, he also takes it out and about.

Getting PCA services at home as well as physical therapy every day at school has meant that Alex spends most days doing lots and lots of exercising and movement, and that’s showed in terms of his ability to sit up, stand up, and otherwise do what he wants physically.

And…I am going to have to say, “To Be Continued,” because it’s late and I need to get to bed!

A thank you note to the (more than) 296 people who helped bring Alex home

This past Thanksgiving weekend, we were particularly thankful for a new member of our family...a certain six-year-old Ukrainian boy with inquisitive, hopeful eyes and a bright smile and a ready laugh...a certain little boy who, yes, has turned our lives upside down...but what would life be without a little shaking up now and then?

This seems like a good time to remember in a more specific way the many people who have made it possible for us to bring Alex home. I started compiling this list back in the summer, and spent a good chunk of Thanksgiving weekend trying to finish it up.

Turns out, there are a lot of people who have helped us out with this adoption.

Two hundred and ninety-six, by my count.

That’s a conservative estimate, because that total doesn’t include every member of some of the groups of people who made the adoption possible, and it also doesn’t include all the people we have inevitably forgotten. (Our apologies in advance; we’re relying on our memory to compile this list from a very busy fourteen months.)

I doubt that anyone will actually read this entire post—it spans nineteen pages in Word—but the act of compiling it has been a blessing in itself. I think of this list as a sort of beautiful quilt, stitched together from many different pieces. The hundreds of people listed in the following nineteen pages are mostly strangers to one another, and yet they all came together for the sake of something very good:

Yeah, we wouldn’t be looking at that smile today if it weren’t for all of you. Thank you so very much!

People who took care of Alex and who laid the groundwork for his adoption

Let's begin at the beginning by saying thank you to Alex's parents, who gave him life. It was not the easiest choice, but they could have chosen otherwise, and they didn't. We pray for them and hope for a happy reunion with them in the eternal light of a loving and merciful God.

We offer heartfelt thanks to the many kind Ukrainians who cared for Alex in his first five and a half years. The unknown doctors, nurses, and caretakers at the hospital that became his first home deserve our gratitude for keeping Alex alive and minimizing the consequences of his premature delivery. It would have been easy to give up on a very low birthweight baby, but they didn't.

The unknown workers and caretakers at his second home, the Kirovograd baby house orphanage, deserve our gratitude for showing him love, and caring for him, as best they could, given their lack of resources.

The dozens of caretakers at the Znamyanka orphanage for children have a special place in our heart for the care they provided Alex during the nine months we spent plowing through blizzards of paperwork in order to adopt him. An institutional orphanage, no matter how good, is no place for a child. As much as the children may have been deprived, though, they were not deprived the genuine love of their caretakers. Alex's psychologist at the International Adoption Clinic as well as his therapist here at home have been very impressed by how well he has formed emotional attachments and appropriate social relationships since his arrival. This is not necessarily a "given" for internationally adopted children, too many of whom experience deliberate abuse or neglect. If Alex shows a (mostly) happy temperament and an ability to form normal human relationships, it is his Ukrainian caretakers who deserve the credit.

Andrea Roberts founded Reece's Rainbow orphanage ministry just a few months before Alex was born; her work and sacrifice, along with that of countless volunteers, has changed the lives of hundreds of special needs children who would have otherwise lived short, boring, painful lives, deprived of familial love. Alex is one of those “Rainbow kids”—a special fraternity that we hope grows and flourishes in coming years.

Among those volunteers were Amber C. and Joanna R., both of whom became active advocates for Alex. They spread the word about his availability for adoption, and started the Adoption and Awareness for Alex Facebook page. Before we ever committed to Alex, that page had more than 100 followers, and Alex’s Reece’s Rainbow fund had more than $7,000 in it. That “head start” on fundraising can be put down to their tenancious advocacy for Alex over the course of a year. (Amber and her family recently committed to adopting a child of their own; we wish them blessings and joy in their journey. Joanna is a remarkable young woman who has travelled the world serving and advocating for orphans. Whatever path she ultimately chooses in life in terms of a career, it’s clear she already is deeply committed to joyful sacrifice for the sake of the most vulnerable, and we wish her all the blessings of that vocation.)

We know from our contacts with other families adopting special needs children internationally that not everyone thinks this is a particularly good idea. We've heard stories of friendships lost, family members cutting off communication, and more than a few "discouraging words." We count ourselves lucky to be surrounded by friends and family members who may think we're crazy or impractical, but who support us anyway--or at least express their genuine concerns in constructive ways. Thanks to all of you who offered early words of encouragement. They matter more than you know, because an important element of discerning God's will involves listening to the wisdom of wise and caring people. On a purely practical level, we knew from the beginning that we could only do this with serious help. Without your support, we would have had serious reason to reconsider our decision.

Our bio kids (Ben, Maria, Julia, and Matthew) deserve special mention here. Without their support for this adoption, we would not have been comfortable moving forward. We talked about sacrifice from the very beginning, and they have made sacrifices in spades. (It’s character-building, kids! Someday you’ll thank us, really you will!) Their frequent prayers for Alex’s well-being prior to his arrival were the first glimmers of brotherly and sisterly love for him.

Mentors and spiritual companions

Sheila O., a long-time friend from my (Jerry’s) Catholic Worker days, played a special role in our discernment process. Sheila has cerebral palsy herself and has adopted three kids internationally. She offered sound wisdom and advice, as well as a sense of perspective, during  our discernment. Among other things, she pointed out that we would not hesitate to take on the challenge of caring for a child who was born to us with special needs, therefore, we would certainly be able to rise to the challenge of caring for an adopted child with special needs.

Jim and Barbara A. are dear, longtime friends from our local Catholic Worker community; even though they moved to Boston a few years ago, we have kept in touch. They were early supporters of Susan’s work with Reece’s Rainbow, even before we decided to adopt. When Susan was advocating for a boy with very involved cerebral palsy named “Anthony,” they worked with their son’s charitable foundation to top off his adoption fund, which made his adoption possible. We had many long conversations with them both before and after our decision to adopt Alex; their role as close spiritual mentors in this whole process led us to ask them to be Alex’s godparents. They were able to be present at his baptism, and helped out with the kids during their visit.

Perhaps more than any single group, the priests who have been close to our family were the most stalwart supporters of us making this seemingly crazy move. Fr. Andy Beerman listened to way too many “here’s the latest snafu” reports from Susan with patience and encouragement; his response was often to sit back and ask, “And where is God in this right now?” (Susan’s favorite line from him was: “God, being omnipotent, can work through anything—even foreign bureaucracies.”) Fr. Bill Becker, our pastor, reacted to the announcement with some surprise—and then immediately asked, “What can I do to help?” Fr. Becker was transferred in the midst of the adoption process, and our new pastor, Fr. Jim Berning, has also been a real support, assuring us he was praying for this adoption every day.  He baptized Alex this past July. We anticipated a very quiet baptism outside of Mass, nothing fancy; we didn’t want to stress Alex out, and also we knew Alex had likely already been baptized in Ukraine (even though we had no records). But thanks to Fr. Berning and pastoral associate Ann O., what we got was a full-blown liturgical celebration with all the bells and whistles. (N.B. to our evangelical friends: Not literal bells and whistles; we may be Catholic, but there are limits.)

Many of the people who attended the baptism were members of our parish’s Parenting with the Spirit group, which has been a steadfast source of support throughout this process.

The Reece’s Rainbow community of adopting families was an invaluable resource to us during our discernment. I seriously doubt whether we would have moved forward adopting a special needs child from Eastern Europe if it hadn’t been for this community. Besides offering practical advice and answers to our many questions, they shared their adoption stories in the forums and on their family blogs. Being able to read so many successful adoption stories reassured us that although this was a hard thing to do, it was definitely possible. Dozens of people provided advice and encouragement throughout this journey, but a few RR families in particular stand out.

Carla D. spent about 90 minutes with us on the phone sharing her story of adopting Henry and answering all our questions about the peculiarities of the Ukrainian adoption process (and what it’s like to live in Ukraine for several weeks). She was very encouraging, and has been a supportive friend throughout our entire journey.

Nancy and Andy shared their story of adopting Vanya on their family blog, which was of particular interest to us because they adopted from Kirovograd—the same city we thought we’d be adopting Alex from. (It turns out he was in another city about twenty miles away.) We talked with Nancy for about an hour over the phone to get a more specific idea of the Kirovograd situation, and conditions in the Kirovograd baby house that had been Alex’s home.

Chris and Leann P. adopted Anthony (the boy mentioned above). We’ve kept in touch with them because of Susan’s previous advocacy for Anthony (now “A.J.”). They also did a great job of documenting the ups and downs of their six weeks in country (in the middle of a brutal winter!), which helped prepare us for our own journey. A.J. lives with them in Iowa now—practically neighbors—and we hope to visit him within the next year or so.

Jennifer and Michael D. also shared their very unique adoption story online—yet another story that prepared us for our own journey. In addition, Jennifer sent us a wonderful care package for our journey—including a map of Kiev, several Russian-language courses, tights for Alex, a Ukrainian USB modem, and much more. (Jennifer and Susan finally met face-t0-face last weekend, meeting for a meal while Susan was traveling for work.)

Sandie F. travels to Eastern Europe every year to educate families and professionals about caring for Down’s Syndrome kids. She visits the Znamyanka orphanage on a regular basis, and is on good terms with the staff there. When we came across her blog, her descriptions (and pictures and videos) gave us our first real glimpse of the orphanage, so that it wasn’t completely unfamiliar when we actually stepped foot inside its doors. She answered questions and offered insights about Znamyanka on several occasions via e-mail and Facebook. She continues her work with the orphanage, for which we are grateful.

Locally, our friends Kate and Eric E. came over for brunch one Sunday to share their own international adoption story (they have two adopted children now), and to answer our questions. This was very early in our discernment process, so they were one of our early guides, and have offered practical support throughout the journey.

Laura and Ray F. shared the story of how they adopted their two daughters from Russia, and offered their support and prayers.

Jacquelyn K., who adopted a child from Ukraine back in the pre-Facebook days, offered her warmth and support and advice, and a listening ear, throughout the entire process. It is nice to run into someone randomly at the clinic who knows exactly what you’re going through!

We had more people praying for us throughout our adoption journey than we could possibly list here, even if we knew who they all were. However, a few specifically told us they were praying for us, and kept in regular contact, becoming “spiritual companions” to us during the adoption journey.

Rosie B. has been a faithful correspondent since the very beginning; she even gave up chocolate AND coffee as part of our prayer and fasting to move the adoption forward. She fasted until we got the date…which ended up being months, not weeks, of no chocolate or coffee. Wow. She also assembled a package of educational materials and resources that she uses in her work with special needs kids, and sent it to Alex; he has enjoyed exploring the many materials, which is great for his fine-motor development. Rosie and her husband are on their own adoption journey, and they are also opening their own hippotherapy riding stables. We have an open invitation to visit them in Memphis, which we hope to do next summer. (Isn’t it great how this adoption journey has forged new friendships???)

Rachelle L., a good friend of our friends Barbara and Jim A., has been another faithful e-mail correspondent and prayer partner, even composing a novena to St. Joseph for us. She is knitting hats for both Alex and Matthew! Her thoughtful insights have been food for the journey. We hope to meet her and thank her in person one day when we visit Boston.

The family of Laura and Barry P. have been a constant support; they and their five children prayed for Alex nightly in the process leading up to his adoption. A special shout out to uber-prayer warrior H—. Barry also dropped everything to come over to our house to pray with us in our darkest hour the week after we got back home. And he came armed with a Bible and some good Scripture!

Our families—including our many nieces and nephews—prayed for us throughout the adoption process. In addition, Susan’s Aunt Marge, who is a Daughter of Mercy sister, offered her prayers and the prayers of her community. Sister Julie G., who is sort of the Mother Theresa of Fairhope, Alabama (involved in lots of charity work), kept tabs on us through Susan’s mother (who volunteers for her every Friday), and offered constant prayers—as well as a stuffed orange crocodile that Alex calls “Croc” and takes to bed every night.

Todd G. and Laurie Z., whose family appears a few times in this account, have been friends and neighbors for many years. We asked them to be guardians (at least temporarily) of our children in the event of our deaths, in part because they live in the area and our children know them. Now, they have six children of their own already, but after consulting with their kids and praying about it, they agreed to the arrangement. (We joke that we will get extra fervent prayers for our continued health out of the deal.) This arrangement actually proved to be pivotal during our Ukrainian court hearing, during which we were asked what would happen to Alex in the event of our deaths (since we were “not young,” as the questioner put it). Being able to point to this family as our “back up” reassured the court, I’m sure.

Help with money

As soon as we formally committed to Alex, we set about raising the $17,000 necessary to adopt him. Fortunately, we had a $7,000 head start, thanks to the generosity of countless anonymous donors to Alex’s fund on the Reece’s Rainbow website.

Almost immediately, Jim and Barbara A. stepped forward to help us obtain the remaining funds we needed from their son’s charitable foundation. That extreme generosity allowed us to move forward with the adoption as quickly as possible without worrying about fundraising. (Most families adopting special needs children through the Reece’s Rainbow website spend an enormous amount of time fundraising; very few have the financial resources readily at hand.)

Although much of the adoption costs were covered by the funds donated through Reece’s Rainbow, we still had to pay about $4,000 for certain aspects of the adoption ourselves. This included fees for the preliminary paperwork, such as the home study; such fees aren’t generally covered by the Reece’s Rainbow grant. Fortunately, a number of “angels” stepped up to help us out by donating through the Adopting Alex website that we set up.

My sister Becky donated her hand-made rosaries for a give-away fundraiser. People rightly oohed and ahhed; they are just lovely.

Jim and Ann P., longtime high school friends of mine, were the very first folks to make a substantial donation; I still remember seeing the amount and being both humbled and encouraged. Humbled that others would step forward to help us, and encouraged that this seemingly impossible leap of faith might be possible.

Jerry’s brother Mark and his wife Meagan made a large contribution toward adoption expenses after winning big in their church’s raffle fundraiser. That contribution came just in time to cover a large unexpected expense (I don’t remember what, now)—another example of God smoothing the way for us. (Not that God influenced the raffle results, necessarily…although I guess you never know….)

One day we received a mysterious invitation for our family to attend a dinner at the minor seminary at Susan’s university (Immaculate Heart of Mary Seminary). We shrugged (although I wondered what was up!), attended Mass with them, and at the beginning of a really nice dinner we were handed a check for adoption expenses—from the seminarians, “topped off” by the seminary. When I expressed my thanks to Fr. Beerman, he smiled and said, “People want to be a part of something this good.”

Many other people followed suit. Many of these people know Susan through her Ironic Catholic blog and her work in the Catholic blogosphere. They include:

Sammuel B.

Margaret R.

Michael A.

Ray M.

Timothy C.

Alex E.

Scott D.

Mary T.

Bryan N.

John M.

Erin B.

Judith E.

J. S.

Mary Kay M.

Julie F.

Brian P.

Thomas L.

Stephanie Z.

Emily S.

Alice B.

Marie S.

Karen M.

Linda R.

Rebecca K.

Nicolle B.

Mary H.

Maureen M.

Amber C.

Mary M.

Nancy P.

Matthew L.

Catherine H.

Theodore P.

John B.

Chris J.

Kristina Anna M.

We also received financial support from our local network of friends and acquaintances. Some of those donated online:

Greg and Sue S.

Brian and Betty S.

Lorraine K.

Renee K.

Eileen H.

Ed K.

Mary F.

Nikki D.

Karen and Scott S.

Joe D.

Rob and Melissa G.

Donna K. and Eric C.

Others shoved money at us in person—at the store, at church, at our front door—for the many incidental expenses associated with the adoption. Every time someone handed us a check or cash and said, “I know it’s not much, but use it for…” was a reminder of God’s promise to accompany us on this hard journey.

I know we’re not remembering all of these (apologies in advance), but ones we remember include:

Mary Ann and John F.

The Rennie family

Laura and Ray F.

Katy S.

Suzanne B.

an unknown angel who sent us a gift card anonymously

Also, the children of Laurie Z. and Todd G. donated a big chunk of their own money toward the cost of Alex’s adoption at Christmas, and then sent us an assortment of gift cards to various restaurants and stores after Alex was home. Their family is a wonderful model of Christian stewardship.

Very early on, we put on a garage sale to help raise money for the adoption; we are grateful to everyone who donated items to the sale, particularly our friends and neighbors Ethan and Jill K., as well as everyone who bought something from the sale.

Angels amid the bureaucracies

The various U.S. and Ukrainian bureaucrats who regulate international adoptions to guard the children’s welfare are not, I confess, my favorite people. Nothing sets me (Jerry) off like bureaucracy and paperwork, which is why Susan handled the vast majority of our paperwork. (I just signed my name—very carefully—about a bazillion times.) However, we were fortunate to have a few patient and generous souls who guided us safely through the maze of rules, regulations, and requirements on the way to finalizing our paperwork. We even met a few bureaucrats and paper-pushers who went above and beyond the call of duty to help us out.

First among our guides has to be Nancy M.S., a Reece’s Rainbow volunteer who served as our U.S. liaison for the adoption. Reece’s Rainbow families who have worked with Nancy like to talk about her behind her back—along the lines of “How incredibly awesome is this woman?” In our case, our first encounter with Nancy was when she reviewed our first batch of paperwork from her HOSPITAL BED a day after hip surgery. Everyone hates the bureaucratic paperwork that goes along with international adoptions; it is our good luck that Nancy loves helping families to move through it, with the help of her spreadsheets and flow charts.

Kathy P. and the staff at the International Adoption Service, were wonderful about helping us to complete our home study and other required Minnesota paperwork. Again, we’ve heard horror stories, and feel lucky to have been guided by such competent professionals. Kathy was flexible in meeting with us, and was very careful to make sure we knew what we were getting into before we got too far into the process.

Although the U.S. Citizenship and Immigration Service is notorious for its poor service to immigrants, its service to adopting families is generally very good. Our international adoption caseworker was very responsive and expedited our paperwork, for which we are grateful.

Thanks, I think, to the guy at the St. Paul USCIS office who didn’t send us packing all the way back to Winona when we showed up for our $900 fingerprints early, without an appointment, even though he clearly wanted to do so.

Which reminds me of the very nice sheriff’s deputy who took our fingerprints in the Winona County jail for our criminal background check. She was one of many strangers who poured out their own stories when they heard ours, and wished us luck and Godspeed. She can count it among her life accomplishments that she was able to make getting fingerprinted in a jail a genuinely pleasant and uplifting experience.

Jacquelyn at Winona National Bank served as our long-suffering (yet always cheerful) notary public for all our adoption paperwork. We must have walked through those doors a dozen times and had her notarize a hundred different documents—sometimes, the same document more than once—always with the gentle reminder from us that the Ukrainian government, bless its bureaucratic soul, does not accept documents notarized in black ink, or with a crooked notary stamp, or a notary stamp whose date does not match the date on the signature lines, or a notary signature that does not match the stamp, and there’s more but you get the point. What a trooper. Through it all, she was not only patient, but also enthusiastic about the adoption; we were pleased to bring Alex in to meet her when he finally materialized. (Yes, Jacquelyn, he is real!)

Her colleagues at Winona National Bank were equally gracious. Linda and a host of tellers spent a week sorting through one hundred dollar bills for ten thousand dollars’ worth of unmarked, unwrinkled bills that would meet the picky standards of the Ukrainian government. Kim T., who handled our home mortgage refinancing, not only shared the story of how she adopted her own daughters from Eastern Europe, but also expedited that paperwork to get everything finalized in a week (instead of in the usual month) so that all the paperwork was taken care of before we left for Ukraine. A handful of other WNB employees spent several hours pulling together financial documentation and figuring out how to wire money to Ukraine. I mention this because I am not sure we’d have gotten this level of service at one of the big corporate banks.

Another group of people who endured the slow torture of Ukrainian government paperwork with us would be our doctors and their staff at Winona Health. Mary and Bob, our doctors, completed paperwork for us…multiple times over, unfortunately. Bob parted with a copy of his medical license despite concerns about how that private information might be (mis)used. Bob also provided valuable information about cerebral palsy that factored into our discernment.

Preparing for Alex’s arrival

A few people also offered practical help.

Lorraine K. hooked me up with Elena S., a friend of Lorraine’s who moved here from Russia with her two daughters five years ago. Elena patiently tutored me in Russian most Sunday afternoons for about nine months. I will never forget that first session: “Don’t make your vowels so big—use a small mouth!” Elena was a stickler for clear enunciation. It is a compliment to her that our facilitator rated my pronunciation as “pretty good” (except on a few words). Elena donated all of this time as a way of supporting the adoption, in which she expressed great interest. We were thrilled to have her and one of her daughters over to meet Alex when he finally arrived.

We have two bedrooms for all our children; squeezing Alex in was a bit of an engineering challenge.

Eileen H. lent us her carpenter’s brain and pointed out much simpler solutions to our problem than I had in mind (she basically saved us from installing extra cabinets and shelving).

Brian S-T. did some electrical work for us, as well as some light carpentry work preparing Alex’s bedroom. He and his wife, Betty, also donated a desk that made the playroom and Alex’s bedroom safer for our curious little explorer (getting electrical strips and cords and devices off the floor). And Brian made a special trip over to the house while we were gone to help Susan’s mom fix her Skype connection.

Dan II spent about six hours assembling the mate’s bed for Matthew, which was necessary in order to free up space for Alex.

We knew we needed space at the dining room table for a new member, and put out a call for people to keep an eye out for a used dining room set that would seat eight. Trish J. spotted a beautiful used dining room table, and Tina S. spotted the chairs a few months later. Now Alex has a place at the table.

Folks who kept the home fires burning

A number of people made it possible for us to be absent from home for the month it took to complete our Ukrainian paperwork in country.

Susan’s mother bravely stayed with our other children for more than a month. Honestly we can’t think of many people who would be willing to single parent four lovely but energetic kids for that long. How brave was that? She comforted them when they were sad, set up daily Skype sessions, thought up all sorts of fun things to do, got them through the chaos of the last days of school and the first days of summer, and offered them loving discipline and guidance. And then she left to go home to Alabama, which may have been the hardest sacrifice of all. Plus, she spent a considerable amount of her own money in the process, including a sizable chunk to fix the air conditioning in our van, for which we were profoundly grateful during the rest of a hot, hot summer. Wow.

Susan’s father sacrificed the company and support of his wife for that entire month; not only did he not complain when the process ended up taking longer than expected, but he offered assurances of his love and support.

Laurie W., another one of our Catholic Worker friends, offered to serve as a backup to care for our kids if Susan’s mother had to return home for some unexpected reason. She also stopped by to help out with the children every so often, to give Susan’s mom a break.

Jerry’s mother visited our children while we were gone, giving Susan’s mom a break and bolstering the kids’ spirits, and also offered to serve as a backup for Susan’s mom.

Many friends, and a few people we barely know, brought meals for Susan’s mother and the children while we were gone, and then brought even more home-cooked meals in the first month that we were home. We will never eat so well ever again! Thanks to Kate E. for suggesting that we organize a meal train and then setting it up over my protests. (“We’ll be fine!” Wrong!) Among them were:

Kate E.

Annemarie D.

Mary F.

Sara M.

Marcy V.

Mary G.

Brian and Betty S-T.

Moira C.

Laura F.

Maria M.

Myoung L.

Shana J.

Nikki D.

Meghan S.

Suzie P.

Jody C.

Meredith D.

Carol M.

Tina S.

Kate N.

Anne W.

Patrice W.

Jean S.

Shirley O.

Shari J.

Eric N. and Deb N.

Deb S.

Marge M.

Joanna K.

Jill K.

Renee K.

Laura B.

Marla and Peter M.

Lisa G. and Bob W.

Steven and Jodi M. deserve special mention for giving us, like, 100 pounds of freshly processed beef (including steaks!).

People from throughout our extended community welcomed Susan’s mom and helped her navigate the kids’ world; a short list would include people at Parenting with the Spirit, Early Childhood Family Education, Bluffview Montessori School, and Saint Mary’s Parish. It was nice to come home and hear so many people say, “Susan’s mom is awesome!”

Help in country

About five different people offered to drive us to the Twin Cities at a truly obnoxious hour (5 a.m. or so), but it was our neighbor Todd G. who made the five-hour round trip for us. (Laurie Z. sent along muffins, of course, besides lending Susan her nifty laptop case at the last minute.)

The first person we met in Ukraine, and the last person we saw as we left, was Niko. Niko helped us change money, drove us into Kiev, set us up in our first Kiev apartment, introduced us to the young women at the minimart below the apartment, made sure we had Internet access (that lifeline to home), and generally tried to make us feel at home. On our way home with Alex, he endured our child’s endless requests with avuncular patience, got us through our medical appointment, took us to the U.S. Embassy, and got us to the airport on time. (“Wakey, wakey!” was his cheerful wake-up call at 3 a.m.) Niko was a constant source of good advice (“For heaven’s sake, don’t eat at McDonald’s! Let me tell you about this little place with authentic Ukrainian cuisine….”) and good humor.

Ludmilla K. is the person on the Ukrainian Reece’s Rainbow team who serves as the liason for all the families in country; she calls everyone once a day to make sure they are doing all right. She served as our facilitator because this was the first adoption out of this particular orphanage, and she wanted to establish a good relationship between the orphanage staff and Reece’s Rainbow. What can we say about dear Luda? She has truly given her entire life to this work. She lives on trains and in rented cars and on couches. She is “on call” 24 hours a day, seven days a week, sick or well. If the adopting parents whine about the paperwork, it is nothing compared to what Luda has to do—reviewing all of the parent paperwork before it is submitted, sending it back for corrections, negotiating with Ukrainian bureaucrats, and keeping all of the paperwork and timetables for multiple families straight, despite her constant traveling. Twice, she copied out lengthy documents BY HAND in the offices that required the copies in order to keep the process moving along. More times than I can recount, she did the hard work of diplomatically negotiating with bureaucrats and paper-pushers—winning their trust and appreciation with her sympathy, but also constantly pushing them to keep things moving along. If it weren’t for her, we’d still be in Ukraine, I’m sure. (Please don’t get hit by a bus, Luda.)

Besides guiding us through the paperwork, Luda also managed our expectations about the process, ordered meals for us at Ukrainian restaurants, bought us fresh strawberries when we were feeling down, coached us on what to say in court, made sure our apartment in Znamyanka had every basic comfort we might want (like hot water), shared many stories about her upbringing in Soviet-era Ukraine, walked miles and miles with us (literally) in high heels, and laughed with us after we all managed to light the ancient gas stove in the apartment. A woman of many talents, truly.

Serge Z. is the Wizard of Oz of the Reece’s Rainbow Ukrainian adoption world…he knows all the levers to pull and all the right people to talk to; plus, he very actively lobbies the Ukrainian government for changes in the adoption laws to make special needs kids more easily available for international adoption. Serge visited Alex in the Znamyanka orphanage shortly after Alex got transferred, taking a few pictures to reassure us that Alex was all right and letting the orphanage staff know that we hoped to adopt him. Serge also got us to Znamyanka very, very fast, introduced us to the orphanage staff during our first meeting with Alex, and treated us to a couple of authentic Ukrainian meals along the way. He continues to work with the Znamyanka orphanage, recently bringing the children new shoes and participating in the visit of an important government official. The work Serge does opens doors for more special needs children to be adopted, while also (indirectly) helping improve conditions at the orphanages.

Sherrie and Jim D. were friendly American faces in Kiev; they were also adopting, and we spent a lovely evening touring downtown Kiev with them; they offered lots of practical advice on the best places to eat and shop.

We met many kind and helpful Ukrainians during our visit…the nice young women at the minimart were patient with our gesturing and broken Russian, showing us where various items were and even showing us how to recharge our Internet account at the little MTC kiosk. We met three or four young people who knew English and did some translation for us when our broken Russian wasn’t doing the trick. There was a lady who sold fresh fruits and vegetables in the market who we visited every day, striking up a kind of acquaintance; she was kind and patient, even helping me change coins. In Kiev, we met an artist who spoke fluent English and who spent perhaps half an hour chatting with us about his story, and Ukraine, and asking us questions about our story; he sent us on our way with a small gift, and a sense of how our common humanity transcends nationalism.

Volodni drove us to and from the orphanage almost every day in his beat-up Soviet-era taxi, blasting some Ukrainian rock station and weaving all over the road in order to avoid potholes and oncoming traffic, waving and honking his horn at all the people he knew along the way (which was a lot of people). His cheerful greeting every morning was just what we needed to hear, transcending the language barrier between us. He also helped us change money at the local bank by using his own documents when they wouldn’t accept ours. (Perfectly legal, done right in front of them—they just had never changed money for foreigners before.)

Andre was our ubiquitous Ukrainian guardian angel in Znamyanka. We could never quite figure out his official title, but he was some kind of leader in the housing projects where we stayed for three weeks—like an unofficial mayor or something. In any case, he was a friend of Serge’s, and arranged our apartment for us—one of the best in town for the price, we were told. He had workers come and install satellite television (over our objections)—two guys came out and spent an hour hanging out our apartment window, six stories up, working on the satellite dish in order to get us 900 stations in foreign languages plus the BBC station (in English). He sent people to buy us new sheets, put up a shower curtain, and fix the hot water heater. He was at court before our hearing and then at the orphanage, meeting with the director, after the hearing. He hailed me on the street as I was wandering around trying to find fexofenadine, and then took me to the pharmacy (where everyone knew him) and made sure I got what I needed.

The staff at the Znamyanka orphanage were kind, welcoming, and understanding. We met many people there, but learned only a few names.

Yanna worked in Alex’s groupa most weekdays, and was an invaluable source of information about Alex’s routine and therapy. On our first day there, she introduced us to the owner of the nearby restaurant/bar, where we had lunch quite a few times over the next few weeks. She was assigned to be our minder during our first week of visits—boring, yawn-inducing duty indeed—and picked cherries for us from the orphanage on the grounds. Yanna even bought a Russian-English dictionary, bless her heart, in order to communicate with us better.

Lena, the assistant director, was always smiling, always stopping to talk to one child or another in a kind and gentle way. She had the manner of a saint, and was very gracious to us during our daily visits. She lost her only son to a car accident during our stay, which somehow seems the height of unfairness—to put it mildly. We were deeply saddened by her loss.

Tatiana, the director, showed us great hospitality and gamely worked with Luda to negotiate the complicated adoption paperwork—a doubly difficult task, given that this was the first adoption from that orphanage. She told us, “The children are loved here,” and we believe it—we saw that love in action. She has an icon of St. Nicholas, patron saint of children, above her desk. She grabbed my arm as we were preparing to leave and looked me in the eye and made me promise that we would send them updates about Alex, and we have. We count her among our Ukrainian friends.

We also received practical help from some of the older children and young adults at the orphanage, and enjoyed getting to know them.

Once again, we have to thank our Ukrainian adoption Facebook group for the tremendous support we received while in country. Our daily video calls to our families were an essential lifeline, but this group of strong and compassionate women were another kind of lifeline—people who had been there, done that. They offered tremendous emotional support throughout our stay, along with much practical advice about everything from what to do with Alex for three solid days in Kiev to negotiating the long flight home. (The best advice there being to buy Melatonin and crush it into something Alex could eat.) The few days after we picked Alex up from the orphanage were particularly harrowing. The night before we left, both Susan and I were on Facebook simultaneously getting advice from this group—me in the darkened bedroom with Alex, who was throwing a fit, and Susan in the other room packing, both of us seeking advice on how to get him to sleep. Unfortunately, we can’t find the record of those exchanges anymore, so it is impossible to list all of the twenty or so people who pitched in, but a few we think participated in those discussions are Renee A., Vera C., Lora L., Jennifer D., Carla D., Sara W., Julie N., Hope D., Breanne S., Carrie E., Nancy T., and Stephanie C.

On the way home

Our dreaded 24-hour trip home wasn’t as bad as it might have been, thanks primarily to the service provided by Lufthansa. They got us into a bulkhead seat, which made it possible for me to stretch my legs and for Alex to play on the floor. All of the Lufthansa flight attendants were attentive, but several took a special interest in Alex. One, a Russian-speaker, wanted to meet Alex and talk with him in Russian. Another brought Alex an extra ice cream sundae from the first class cabin. Two others let me hang out in the galley for an hour and a half while Alex was asleep in a baby sling.

We had prayed for God to accompany us on this journey, and what do you know? He sent a nun, in full habit, to sit on one side of us, and an entire group of Catholic pilgrims to sit behind us. The leader of the pilgrimage had overheard about Alex being adopted and asked us about his story; as in so many of these cases, sharing our own story led to us hearing someone else’s adoption story.

My brother and his family picked us up from the airport in Minneapolis, and graciously allowed us to spend our first night back in the United States at their house. Their children were very friendly toward Alex, bringing him gifts and offering kind words of welcome! After getting just four hours of sleep in the previous 48 hours, we were dead on our feet and promptly went to bed. Mark also took half a day off work to drive us two hours downriver to our home…the last leg of our journey.

Re-entry

As many of you know, our initial re-entry was rather rough—from the pent-up stress of the past month, from serious jetlag, from exhaustion, from the realization that the real work was just beginning—and that we had just imported all the negative consequences of Alex’s institutionalization into our home!

When I began to crash a few days after our arrival, I sought professional medical help. I have to thank a nice certified nurse practitioner (whose name I forget) for getting me some low-impact anti-anxiety meds right away, along with a follow-up appointment with a family practice doctor the next day. Ethan K. drove me and Matthew to that appointment (Susan was taking Alex to another medical appointment out of town), then took us to the pharmacy to pick up the prescription, and carted us over to McDonald’s while we waited for the prescription to be filled. Dr. T. was sympathetic and did not hesitate to prescribe more robust anti-anxiety drugs, along with some sleep medication that got me through the roughest patch.

We had hooked up with a family therapist, Ann L., prior to the adoption on the grounds that Alex would definitely need adjustment therapy. Well, as it turned out, we needed her help for the first few months more than he did! Over the past four months, she has been a compassionate listener with good insights and practical advice for how to “triage” our situation. She says we look better than when we first walked into her office in late June; we definitely have her to thank for helping us to improve.

Besides medical professionals, I also turned to our online adoption community for help. One of those people (I forget who) offered valuable advice: Now is not the time to cocoon (the standard advice for families that have recently adopted), but to reach out to your support community. Well, duh! I read that and reached for the phone and called Barry P. (mentioned above) and Laurie W., both of whom promptly came over for prayer and a good, long conversation.

Laurie W. followed up by pledging fifteen hours of help per week beginning in August (when Susan went back to work). She helped me with Alex and the other kids for three hours a day for about two months straight, gratis. She is a generous, wise, sensitive person who takes her spiritual life seriously…but as someone who used to be a social worker and who currently is a live-in volunteer at our local Catholic Worker community, she is also very down-to-earth and practical. Which is to say that she can change a poopy diaper or clean up spilled milk or form a plan for handling a complicated problem as readily as she can offer wise spiritual advice. Our whole family is incredibly lucky to count her as a friend.

Deb S. is a fellow stay-at-home parent who I know through Early Childhood Family Education, and the other person I thought to call right away. She has a wry wit, a devil-may-care practicality, and a deep warmth and compassion. An example of her style: she brought over a cooler full of filled water balloons for the kids to play with while we were in Ukraine. (It was still there when we got back; Alex had a great time using them in his first-ever water fight.) So I had no reservation about calling her up out of the blue and sharing our difficulties and then asking whether she and another ECFE friend would be willing to do some clothes shopping for us, since we were dealing with so much already and didn’t have time to track down 2T and 3T onesies and bib overalls. We asked for shopping help with the promise of paying her back, but of course she dropped off sacks and sacks of new clothes that fit perfectly and then refused payment. We got a used jogging stroller from her, too (I actually took Alex out in it today), as well as two lime-flavored alcoholic beverages. Yep, those were good. I think (but am not sure) that Meagan S. also helped with the shopping.

Others also brought us clothes and bibs: Laura F., Heather B., Barbara A.; there are more that I’m not remembering. Jody C. also brought over paper plates and other disposable dinnerware, which turned out to be really useful. She remembered appreciating that after her brother died several years ago. Kate E. brought over an infant backpack.

Marcy V. came over several times to help me with Alex and Matthew; she brought along fun crafts, like homemade sidewalk paint. Her mere presence was more help than she probably imagined. She also brought over lots of clothes and equipment for Alex—including a jumper, an infant stander, and a high chair that he still uses every day.

Katy S., my longtime parent education teacher (and Minnesota Teacher of the Year!) made a house call and lent a sympathetic ear while helping to prepare lunch for the kids. Ten years of classes with her have given us a big head start on this new parenting challenge.

Nikki D. and several other unknown benefactors bought us gift cards for a cleaning service (Maus in the House, run by the inimitable Carol M.)…we’ve still got a few hours to use up, which should be no problem, given the constantly messy state of our house!

I have already mentioned the many people who brought us meals in the month after we came home; to that list I should add Vera C., one of our very good online adoption friends, who sent us a very large Pizza Hut gift card that proved to be a lifesaver on more than one hairy day.

Donna K. and her husband, Eric C., made several visits in the first few weeks to help us care for Alex. Eric is a physical therapist, so he was able to show us how to “play” with Alex in a way that would double as physical therapy long before our first formal PT appointment. Donna is a CNP and offered her own medical advice, along with her usual sense of calm and composure.

One of the more practical challenges we have faced is making our home more accessible to Alex, and a big concern has been access from the garage during the winter, when the walkway between the garage and the house often becomes a wading pool or skating rink. Brian S-T. helped us brainstorm a practical solution to that problem; Eileen H. offered her carpentry expertise, and Nohj C. (the foreman for our local Habitat for Humanity) reviewed our plans to make sure we weren’t crazy. We essentially dismantled part of our massive deck and turned it into a raised walkway between the house and the deck. Brian S-T., Eric N., Bob T., Randy S., and Mike H. all donated their backs and tools to the deck destruction phase of the project, along with more courage and common sense than I had. Fifteen people showed up to move the deck: Dan W., Laurie W., Carol M., Eric and Kate E. (and their kids), Matthew B., Molly G., James, Rachel, Ethan K., Brian S-T., Todd G., Steven M., Randy S., Bob T., and Eileen H. (Our older kids helped out, too.) What a motley crew! We will think of each of you as we carry Alex to the house NOT falling on our butts due to a poor walkway.

The Winona area motor and mobility support group has also been an incredible resource in terms of helping us figure out which way is up in this new world we’ve entered. Pam F. and Amy S. spent two hours with me one night at the Ground Round, offering practical advice as well as names and resources. They followed up by loaning us all sorts of equipment, including a scooter, a very expensive Rabbit stander, a swing (which Alex drove into the ground), a wheelchair, a bath chair, and more. Annie C. and Meredith D., friends from church whose children have different impairments, have also offered practical advice and encouragement. These parents are amazing, yet hidden, heroes. They are experts in the arcane science of helping children with disabilities to participate in the life of their community—and they do it all with positive, can-do attitudes.

Anya (daughter of Elena S.) and Uyen V. came and assisted me with child care during the months of July and August, when Susan was at work and all of the kids were home. They were

great with the kids, and real life-savers in terms of my sanity.

Natasha (another daughter of Elena’s) provided translation services for us, gratis, at many of Alex’s initial medical appointments. We’re sure her gentle manner and her explanations of what was going on relieved some of Alex’s stress around those new experiences.

Others offered gifts of welcome to Alex: Elena S. and her family offered stuffed animals and a board game for the other kids; my Aunt Susan knit a blanket for him (which he sleeps under every night); Barbara and Jim A. gave him a beautiful wall hanging (“God danced the day you were born”); our neighbor, Kathy S., gave him a stuffed dog (and all the Godfather’s pizza he could eat!); and the Donahue family sent Alex a Rody horse that he still uses for play therapy.

Alex’s army

Alex is lucky to have had a small army of very talented professionals helping him on various fronts since he arrived four months ago.

The team at Community Kids preschool has been amazing. Director Sherri M., who had read our entire adoption blog, personally contacted us to invite Alex to apply to the preschool, where they mix special needs children with typically developing children. This was surely another one of those “graced” moments. The strong advice we’d received from the International Adoption Clinic had been to not enroll Alex in school. However, Community Kids has been a very good experience for Alex, providing him with new horizons, daily therapy, and lots of loaner equipment. He wouldn’t be nearly as mobile without all of the equipment and guidance provided by the school.

Sherrie navigated the bureaucracies that would enable Alex to attend even though he turned six in September (he has never been to school before). Monica M., Alex’s teacher, also reached out to us well in advance of his enrollment, spending several lunch hours on the playground with him over the course of several weeks before we were enrolled—just to get to know him. Alex’s “team” also includes language pathologist Ellen S., occupational therapist Cathy M., school psychologist Denise V., and physical disabilities coordinator Mindy R. Tanya G., his physical therapist at school, has been amazing at getting Alex up and running—literally—by providing tons of loaner equipment, as well as the professional help needed to get him fitted to it properly. All those pictures of him happily walking or rolling have a lot to do with her work. Amy and Nikki, Alex’s personal care attendants at school, have been at Alex’s side every single day, and have done a great job helping him make yet another transition.

Alex has had more medical help than he has ever had in his life. It’s a long list, but we’re particularly grateful to Beth A. and Dr. Maria K. at the University of Minnesota International Adoption Clinic for doing lengthy phone consultations immediately after our arrival when we were struggling with behavior issues with Alex. Dr. Judith E., a pediatrician at the clinic, provided our first comprehensive overview of Alex’s medical condition.

Additional medical help has been provided by Dr. Sarah L., Alex’s pediatrician at Winona Clinic; Dr. John G., the emergency room doctor who gave us life-saving advice during Alex’s first medical crisis (Dr. John also turns out to be our new across-the-alley neighbor). At Gillette Children’s Specialty Healthcare, Candace Vegter and Sue Murr spent a couple hours consulting with us by phone before we brought Alex to his first spasticity clinic; Drs. Tom N., Mary D., Mark G., and Christopher N., along with a very competent physical therapist whose name we no longer have, evaluated Alex’s cerebral palsy and formulated a treatment plan; Dr. Christopher N., who is himself physically impaired, followed up with Alex on the physical medicine front and laid treatment plans that will put him on the road to greater independent mobility. Sharon B. at Gundersen-Lutheran orthopedics fitted Alex with his first hinged ankle braces. Diane M. has served as Alex’s physical therapist at Winona Health since July; she knows how to make PT fun for him, and has marveled with us at his amazing progress.

People really seem to hate the government these days, and I get that, but we’ve seen first-hand how it can also be an instrument of the people to accomplish good things together that they couldn’t accomplish individually. We know from our contacts with people all over the country that the assistance provided to special needs kids in Minnesota is second to none, often by a long shot. Along those lines, we have to thank Annette V., our Winona County social worker, and Kathy Piscetello, our Winona County public health nurse, for everything they have done to coordinate services for Alex. They’re an example of efficient, hard-working, compassionate government employees.

Amanda at the Winona County social security office, along with another worker there whose name I can’t recall, also deserve a shout out for going above and beyond the call of duty to humanize a government bureaucracy.

Thanks to assistance from the state of Minnesota, we now have four wonderful personal care attendants who are Alex’s hands and feet (and friends) for almost forty hours a week. Without their help, Alex would get much less exercise and normal six-year-old activity every day. They take him for walks in his walker, help him learn how to use his wheelchair and stander, carry him to the top of slides, and otherwise supplement his mobility. They help him read and socialize, too. They don’t replace the love and care of his family, but with four other kids (including an active toddler) in the house, having a pair of hands devoted to Alex has been really good for his development. We are lucky that these PCAs were friends of the family first. They are Laurie W., Julie M., Diane L-M., and Dan W.

~

In case you’ve been keeping count at home, that’s 296 people and groups.

Deo gratias.