Today was a very special day. I don't want to get to flowery or emotional because I don't want to embarrass him, but my son Chipper got his instructional driving permit...finally!
Legally, he could have been driving by now. It is partly the busy-ness of our lives that has prevented us from making the trip into the city to the DMV. The other part was my perception of his readiness...which is based largely on fear.
I don't make decisions based on fear. So I tell myself. Reality is more complex than a slogan like that. As a young child, Chipper struggled for years with a seizure disorder. Though he has been medication free and seizure free for many years, I still have painful memories of those difficult days.
Today the high school let out early due to the heavy snow. Athletic meetings and practices were cancelled. Perfect time to visit the DMV, right? No lines!! And the roads were mostly melted by the time we set out.
Chipper passed his written exam on the first try and we were out the door in half an hour. I swallowed the rest of my fear and made him drive me, Ralph and Ruby, home.
As difficult as it is to let this boy grow up, having another driver in the family will come in handy!
Wednesday, February 20, 2013
Today was a very special day. I don't want to get to flowery or emotional because I don't want to embarrass him, but my son Chipper got his instructional driving permit...finally!
Monday, February 18, 2013
The geneticist just phoned. The results are in. Maxim has Down Syndrome. Are you as shocked as I am?
She had originally asked for micro-array studies. We discussed this a bit an decided against further genetic testing. We can pretty accurately determine that his previous living conditions combined with Down Syndrome is responsible for his condition. No real need to look further.
My prescription for Max includes lots of silliness, of the Ralph and Ruby kind!
Saturday, February 16, 2013
We are home.
Max had an imaging test on the morning of Valentines Day...after that we were free to go home. Results? Negative for Hirshsprungs disease, negative for celiac, negative for pretty much everything.
Everything except for protein energy malnutrition and giardia. My anger and disappointment regarding the care he has received over the past four years is rising, particularly since the orphanage director wanted me to donate money for reupholstering some sofas. No joke.
Well, now Max is home and we are dealing. Having him hospitalized was the very best way to have him seen by many different specialists right away, but now he has a half dozen follow-up appointments over the next few months.
For now, we are just feeding him and loving him. He has chosen a seat at the table. He goes to sit at the table when he wants to eat...which is often! He doesn't want to sit anywhere else. My goal is to get 1000 calories into him each day. I'll have his weight checked next week to see if we are making any progress. He is so painfully thin...it hurts me to look at his poor little legs...it hurts my heart to change his diaper.
The good news is that everyone loves Max! So far, he is easy to care for and fun to be around. Not really what I would have guessed an eight year old child would be like, but I'll take it!
Wednesday, February 13, 2013
Maxim has been the focus of my attention for months, but he's not the only thing happenin'.
Chipper is planning to take a mission trip to Mexico in March. Oh dear, the plane tickets! You can fly to Ukraine for what it takes to fly to San Diego!!
Chip needs a passport but we've been so busy that there has been no time to drive over to the main post office for this. I did get his passport photo done the other night, though. It was funny. The lady at the photo place said his shirt wasn't good enough for the photo...something about the collar.
We were in huge time crunch, but he didn't have anything on underneath his half-zip shirt. The clerk tossed him a t-shirt from a display of shirts...he took his half-zip shirt off in the middle of the busy store...put on the new shirt...got the photo...changed shirts again and we split! No, I didn't buy the shirt he tried on!
Zhen has been mean and angry at school for a few days. His teacher has called me a few times to say that she thinks he may be constipated...he was straining on the toilet, but not producing any results. When she called again today (my poor mom took the call as I'm 3 hours away with Max) I asked dad to get him to the doctor quickly.
Zhen has a history of eating non-food items. What if he ate the wrong thing and had an obstruction? Goodness! Poor dad is so tired of me being gone and hauling kids to the doctor and trying to hold down a job to support our tribe. Well, he did one more doctor visit...and then took Zhen for x-rays. Not fun, I guess. Zhen is a real fighter, so I imagine it was not a picnic.
Shortly after they got home, Zhen exploded on his little potty...remnants of balloons, one of his favorite snacks. Two potties full. I just want to thank dad for messaging the photo-proof of this. Sheesh! Hope Zhen feels better...and nicer now.
Ralph wanted to know where Maxim was when he woke this morning. He's already completely accepted his new brother.
Ruby has totally accepted him, too. She does her best to say his name like I do, but she has been calling him "magazine!" Really good try!
Prince of Drama or Trauma Baby? I can't decide.
Maxim and I rolled into Kansas City about 7pm last night. His bed at the children's hospital was all ready to go. First order of business...the hospital armband. You would have thought we were trying to murder him!! The screaming! The tears!
Once the band was covered by his sleeve, Max was fine. Then the care assistant arrived to take his vitals. The blood pressure cuff on his little leg sent him over.the.edge. I warned her that she would not get a reading through his Ukrainian man tights, but she didn't listen. Sigh. She tried again on his arm. I could feel his little heart pounding as he strenuously protested. They got a reading that time...some number over 161...not exactly normal.
I rocked a thoroughly worn out Max on my lap and he fell right asleep, just in time to go downstairs for x-rays! He actually slept as I carried him down. He woke up when I sat him up for his first photo, but he didn't cry. Three views, easy and no drama at all!
Upon returning to his room I was able to talk to the doctors on his team. Here is where I have to work really hard to stay calm and extend grace as they interrogate me. I understand they are just doing their job, and not an easy job. When I was asked to explain my reasoning behind my decision on vaccinations for him, I just said, "sorry, I'm too tired to get into it. You'll just have to accept that we won't be doing any additional vaccinations for Max."
The team and I were not on the same page. They were concerned about refeeding syndrome and I was thinking "bowel obstruction, celiac disease, or Hirschsprungs." They wouldn't let Max have any food or drink until after getting blood chemistry information.
Our nurse was amazing and friendly. I LOVE nurses. She took Maxim to a procedure room to get blood samples. This was so he would not associate this room with painful procedures. Also, I did not go with him for this. I don't want him to associate ME with painful procedures!
The problem was that I could hear sweet Max the whole time. Through two heavy wooden doors and down a hallway I could hear him screaming with every breath. What the heck were they doing to him? The boy is LOUD!!
Awesome nurse brought him back to me and reported that the blood draw was easy. They put in a hep-locked IV, got blood samples and another blood pressure reading. Apparently it was the tourniquet that he hated the most!
We both got to sleep around midnight. I expected to see Max on IV fluids sometime during the night. He had nothing to eat or drink since 3pm the day before. When I woke at 6am, no IV? Awesome nurse was still here and came to get Max for his 6am blood draw. She explained that his orders were changed in the middle of the night. Apparently his blood chemistry is fine and he can have whatever to eat and drink now. Sheesh.
I just fed my little sweetheart some applesauce, apple juice and vanilla pudding. When room service begins at 7am I will order him some scrambled eggs and biscuit and gravy! Yeah baby!
Today Max has a heart echo and scrotal ultrasound on the plan. I told the doctor at the embassy medical appointment in Kyiv that lump on his hip was a testicle. She poo-pooed me. Looks like I was probably right. I wish we had more GI testing on the plan for today, but I'm not in charge here.
As difficult as this is, I am so grateful that Max is finally getting the care and attention that he has desperately needed for years. When I feel anger rising, I try to remember to direct it in the proper direction. This is not the hospital that traumatized him with rectal tube treatments and God knows what else. This is not the facility that neglected him for so long.
More about the orphanage soon. I learned some things the day I took custody of my son. Things that give me confidence in my decision to not donated Max's bank account funds.
Tuesday, February 12, 2013
Max's doctor has arranged for him to be admitted to the children's hospital...three hours from our home. While I know this is the best for him and he desperately needs medical attention, it means that once again my family at home is motherless.
I'm packing to be gone for a few days. I don't want to leave Max in the hospital alone the way I was forced to leave Theo two years ago, but I need to find some help at home to make it possible. I'm hoping that I'll be able to find someone to come over in the mornings at least. That's the most critical time of the day...to get the right child on the right bus!
Maxim is 25 pounds fully clothed. He is 36 inches tall. His abdomen is extremely distended. It's likely been that way for years, but it could turn into something very serious. It could silently turn into something serious and we might not know in time to help him. I can't really go there...
Sweet Max made a nice big poop in his diaper at the doc, so they just took the whole diaper from me and will be running parasite tests. No blood work was ordered today so as not to traumatize him...and the hospital would have repeated these tests anyway.
Off we go!!
Reality. It is the dimension of truth that we can touch and feel. It is the dimension of truth that pierces my heart.
Reality is often hidden under layers. Layers of all sorts: paint, area rugs, layers of makeup, layers of body fat, layers of attitude, layers of...tights and fluffy pajamas.
Reality doesn't go away. It can change, but it is always present...whether we can perceive it or not.
Do you remember this photo of Theo? The reality of his physical condition was evident to us the day we met. The steamy Crimean summer of 2010 required very little in the way of clothing. Physically, we knew the reality that we were dealing with. (We are still peeling away the layers of his emotional reality...)
On "forever in my arms" day, I requested to personally dress my son in his brand new escape clothing. The emotions of the day were already running high. Max was well liked in this place. He was happy. He knew nothing else. I was taking him away forever.
I sat with Max on the sofa that I was never before permitted to sit upon. I removed the communal clothing from his frame. Oh dear. I didn't know. I quickly dressed him and shoved my emotions aside. The reality would be there when I had time to deal with it.
I mean, I suspected the truth of Maxim's physical condition...but I had not yet experienced the reality of it until the layers were stripped away. How he has maintained a cheerful and happy spirit is beyond my understanding.
Maxim and I are headed to the pediatrician in about 15 minutes. My original plan for him included a hospital stay to fully assess his condition. I hope to have a plan of action in place soon and will update soon. Thank you for all the prayers and the ways your have supported us thus far.
Monday, February 11, 2013
Imagine that you have nearly completed a 1000 piece puzzle. The pieces were so small, and the colors so difficult to match up. You even put the puzzle away for awhile because it gave you a headache. But the time came to tap the last piece into place. What a satisfying feeling!
In the same way, Maxim is locking into place in our family. It is satisfying to see the way he fits into the spot that was made for him here. I don't believe that he was born to be ours. I firmly believe that God's will was for him to have been loved and cherished by the mother that gave birth to him.
There is so much pain and heartbreak in this little world. I cannot believe that it is the will of God. The enemy is at work, but God has given us the power, through the Holy Spirit, to bring hope and healing.
Over the past weeks, I have been called a "hero mom," a good person, a saint. I've heard people say, "I could never do that," "you are so brave" and more.
In Acts 3, when Peter and John healed the lame man at the temple gate, the people were greatly amazed. "When Peter saw this, he addressed the people: "Men of Israel, why are you amazed at this? Or why do you stare at us, as though we had made him walk by our own power or godliness?" Acts 3:12
"By faith in His name, His name has made this man strong, whom you see and know. So the faith that comes through Him has given him this perfect health in front of all of you." Acts 3:16
I must confess that I was reluctant to bring an "older" child into our family. But God placed this boy on my heart years ago and the heaviness was going to suffocate me. The only thing we did that was in our own power was to say, "OK, God."
The only reason we were able to say "OK, God" was that we have previously witnessed His miraculous healing. Maxim has found a place where he "fits" perfectly. He has found a place at the table. All the glory goes to God.
Saturday, February 9, 2013
Battling jet lag and keyboard problems so this will be short. We are home!
Max is great! Everyone is in love with him and he had a big day checking out the house and the toys. He got a bath and loved it! He got his stinky teeth brushed and didn't like it one bit. Don't ya love that nasty face?
More...oh, so much more later.
Thursday, February 7, 2013
Paperwork is complete.
I have Maxim's passport and visa in my hot hands.
Airline tickets are purchased.
Bags will soon be completely repacked.
We are headed home in 14 hours.
Tuesday, February 5, 2013
I have Maxim!! He's an interesting kid.
We have already had food issues. In addition, he is really bloated today. No bueno.
I've made an executive decision to go gluten free for the time being.
We did some snuggling and worked through the food-induced meltdown. He is presently content, sitting on the couch, playing with his hands (vogue-ing!) and burping.
Pray for Malynky Max's sweet young heart. This transition is more difficult for him than it would be for a younger child.
It took the better part of two days to apply for Maxim's passport. The third day, Friday, we finally took him for his photograph!
Monday, February 4, 2013
On Thursday night I wrote this to a private group of adoption friends:
I have been conditioned to think that this was a gesture of goodwill to the children that are left behind. I had a difficult time deciding what to do with this $xxxx.
The thing that tipped the scales was my Ukrainian friend who has facilitated adoptions in the past. He BEGGED me not to hand over cash...that I would be perpetuating corruption. He said the money was intended for Maxim and it should be used for his benefit. He also said that if my heart tells me to donate to the facility to ask the director for a list of items that they need and purchase things from that list. Which I do plan to do.
I know that many of you are using the **other** facilitators and they DEMAND that you hand over this money in its entirety to the facility. You need to know that this is a corrupt practice (many of the directors and fac's split the funds 50/50) and even if you can't do anything about it, I think it is a practice that needs to be questioned.
In the process, many children had to be transferred to other facilities. The music room in the remaining building now holds much of the therapy equipment from the old building...along with stacks of extra furniture and crap. Also, I understand the physical therapist was let go...no money in the budget to pay her.
Before I hand over cash or even donated items, I need to think carefully about how this will benefit the children. As much as I may trust the people I'm dealing with here, it's so easy to see how the funds could simply be pocketed. This IS Ukraine, folks. It's a place where personal survival and "what's in it for me" is of primary concern. Even among professional and seemingly trustworthy people.
So, for the time being, Maxim's savings will be set aside for his medical needs, which could be extensive. I will get a wish list from the director and keep in touch with local missions to coordinate any donations. I'm very appreciative for the care that he has received in the past 4 years. I understand that he was in poor condition when he was transferred and that he spent at least a year in a "laying room." I will not forget the children left behind.
Two and a half years ago, when we adopted Theo and Zhen, I did hand over a FAT STACK of Ukrainian cash to the orphanage bookkeeper. I didn't know him, he could have been any guy off the street. I got a sick feeling when he folded that money up in his newspaper, stuck it under his arm and walked out of the bank. My feelings were confirmed when I visited the orphanage a year later and found the same poor kids sitting alone in broken cribs, no toys, drenched diapers, and smelling of vomit. There was no lasting benefit to them.
Sunday, February 3, 2013
We got back to Krivoy Rog on Wednesday afternoon. I got to see Maxim for about 15 minutes, signed a piece of paper at the orphanage and went home to my apartment. There was a bunch of paperwork to be done that my facilitator, Masha, could do without me being present.
I waited all afternoon for her to call...do you remember that feeling? Do you remember being 15 years old, waiting for that certain boy to call...and you sit on the phone, and it never rings? Yep, that is the feeling. I called her later in the afternoon and she didn't need me until the next day, so...
I arranged to visit some kids at a trade school dorm later that evening. This was one of the dorms I visited in December. Tough kids. TOUGH. They sit with their arms crossed, take cigarette breaks evey 15 minutes. In every group, so I've noticed, there is a loud obnoxious boy. To my surprise, Vova, the obnoxious boy in this particular group, remembered my name. He shouted "Stephanie!!" when I walked in. He told me he remembers "good people." Break my heart. I can only imagine the hurt and disappointment that all that toughness is hiding.
Funny, as tough as they are, they got excited like little children when I broke out the candy that I brought them! And I had friendship bracelets for them too...they went bananas (greedy!). My friend and interpreter, Valeriy, and I walked to the bus stop afterward smelling like smoke. Gag. I mentioned that I had a birthday the day before and he sang "happy birthday" to me along the way. Fun times.
As soon as I walked into the apaartment, my phone rang. It was my friend Max. He wanted to know if I was too tired to go with him to visit with a family. He said the dad was only a teenager and had some problems and could I please come. My standard answer here is "yes." I did not know what to expect, but I said "yes" without really thinking.
We arrived to the apartment and walked into a dark, first story entryway. That is when I saw it. A cake. With candles. Good grief! They got me good!
It was the girls from the True Hope office - Lera and Alona, Valeriy and Max! They threw me a surprise, day-late birthday party. We had two kinds of cake, carmel filled cream puffs, oranges and tea. Then we played dutch blitz. Too fun! I like the way they celebrate here. And I'm happy to call each of these people my friend.
Thursday was a big day. After I visited with Maxim in the morning, Masha picked me up to do some running around. Today we would close Maxim's bank account and she would finish the passport application. I was hopeful that we would take the little dude to have his passport photo taken but we were not invited to come yet. Sigh.
At the bank, the lady behind window #5 (you cannot get helped at just ANY window) said she needed a notarized copy of my passport. Masha only had one of these left (I think I sent her like 6 or 7 copies of this). She needed that last one for something else.
So we visited the notary. The notary refused to make a copy of her document, because it was a copy of a copy...that is what is stamped on the document. She refused to make a copy of a copy of a copy. So, we had to find a certified translator service to make a copy of my passport, translate all the information in it. This was not cheap and further slowed us down. The translator's office was kinda cool. It was obvious that they have language classes there. He invited me to come that evening for an English club. They are very proud to have a native English speaker, an American lady to married a Ukrainian boy and now lives in Krivoy Rog.
After we had the translated copy we went, where else? The notary! Then back to the bank. We were ushered into a private room where Maxim's funds were counted out for me. Now, Masha told me, I needed to decide what to do with this money.
Ahh...what to do...
Saturday, February 2, 2013
It has been hard to find the energy to write. I have tried my best not to save myself, or pace myself here. Some days I walk five miles and other days I sit in the backseat of a car all day long. Some days I meet and love on some amazing people and other days I spend mostly alone.
Today I hope to meet the kids at the rehab orphanage again. I just LOVE this group of kids. They are considered "troubled" for various reasons, but I have found them to be delightful! I was hoping to have seen them a few weeks ago, but was prevented at every turn. God willing, today is the day.
Now, let me play a little catch up...
On January 29th, my birthday by the way, early in the morning, I left my friends in Simferopol in search of Maxim's birth certificate. I walked down a steep hill, suitcase in hand, to meet my facilitator at the grocery store. Remember, I had taken the train to Simferopol by myself on Friday night. Getting out of the city was a little tricky, but we eventually found the correct road and I enjoyed the scenery on the way to Sevastopol...the other times I made this drive in the dark.
Even though we got a slow start, we arrived before the vital statistics office opened. There was a small crowd of people standing on the street waiting for the doors to open. Thankfully, only one of them was waiting for the same office as us. The woman in charge was an unblinking, power-tripping bully. She demanded another document, one stating *when* the corrected parental rights court decree (the one we spent 3 days trying to fix in December) had become effective. This information WAS in the adoption court decree, but no matter, she needed this information spelled out in a separate document. My facilitator said it was better not to argue with her and just try to get the document. The rest of the morning was spent on the phone, requesting faxes, documents, blech. At one point we were heading back to the courthouse in Balaclava (thinking they might throw us out!).
We did some more errands in the city while waiting for the new birth certificate. I do wish that I had time to see the Black Sea again, but I only caught glimpses of the harbor near the train station. Sevastopol is a beautiful city, by Ukrainian standards. I'd love to visit for fun someday.
Once the birth certificate was in our hands, the next step was to get a new tax ID number. This is similar to our social security number, but I'm not sure why a new one must be issued, and issued in the city of birth...I just go along to get along at this point. The lady in this city office was friendly (shock!) and fast (shock!). We had the new document in 15 minutes.
We immediately left Sevastopol and headed for Krivoy Rog. My facilitator and her brother had driven all night the night before we met, and they were so tired of being in the car. We stopped for a nice dinner at the Arizona Cafe, again. They bought me a glass of wine to celebrate my birthday. Actually, I had two wonderful glasses of Crimean red wine and it made me a little silly!
We continued to drive, and drive. The roads were snowpacked from a heavy snowstorm the days before so we took a longer route to avoid some dangerous roads. It was midnight when we rolled (bumped?) into Mikolaiv. We needed to stop for the night.
The hotel was umm...an experience! I can't really explain the way the place felt tired and creepy to my American senses, but I'll never complain about La Quinta again! Riding the telephone booth sized elevator to the ninth floor made me extremely uncomfortable. The room set-up was just strange and the bathroom was just old. I was too tired to worry, and in no position to complain...this is just the way things are here. Plus, it was only $17.50 and included breakfast.
Breakfast was a cute little plate of whipped, sweetened cottage cheese with sour cream and a plate of buckwheat (i think?) with a meat patty and tomato. I was told this is a Soviet style breakfast. Now I can say I've eaten Soviet style!
Good thing we stayed the night, because the road to Krivoy Rog was terrible! Portions of the road look like they were bombed. It's crazy to see 18 wheelers weaving around all over the road trying to avoid the holes. By the time we got back to the city half the day was wasted. We needed to start the passport application and close Maxim's bank account. The passport is the thing that takes the longest, and is the most unpredictable, so I have been anxious about it for a whole week.
And in this region, passport applications require more paperwork than an adoption dossier!