Tuesday, November 28, 2017

She Was Our Secret

Back in February, when we were going through the homestudy process, we were approved to adopt two children.

But it was a precaution. It was a just in case Mary had a sister. It was only for emergency purposes. It wasn't on our radar to get two. We spent the first 6 months of our process with one child in mind. Mary.

But the day we received our travel dates we found out about another little girl at Mary's orphanage. Our facilitator begged for us to see her and help her find a family too.  "Please, please advocate for her. Find her a family. It's not a good place and she is such a sweet girl.  Please!"

We were sent pictures and later a video. Cadence. She took our breath away. We stared at her pictures and watched the video over and over and over again.

She stole our hearts. We began to talk and pray and pray some more. We shared with just a few friends about her. We considered and prayed and talked some more. We decided to request her file at our appointment. According to procedure, we could see her file along with Mary's but could not officially meet her even though they were in the same place. We would have to meet Mary and then go back to the city to get Cadence's file.

She was our secret. And we loved her. We wanted to adopt her.

The day we had our appointment was beyond stressful. Both files were opened to us. We ran into issues with Mary's file that we wrote about HERE. We had the choice of taking Cadence's referral first, but we knew that the Lord had called us over for Mary and she was absolutely our first priority. When all was clear with Mary, we went to region to meet her.

We were also going to get to see Cadence even though we couldn't get an official referral until we traveled back to the city.

It was a day of great grief and deep shock. In the first hour that we met Mary she had around 10 seizures. It shook us to the core. We knew she had epilepsy but nothing had prepared us to watch her dropping and smacking her head over and over again. In the middle of that shock they told us about Cadence. Their words stung and burned into our hearts. It was obvious that she was not regarded with favor. It was obvious that they had written her off as unteachable and with little value. It was beyond obvious.

She was beautiful. She was sitting at the table eating a snack when we walked in. The other children at the table chattering away while she quietly reached out her hand to me. I sat beside her and she just took me in. Rob came beside me, his eyes filled with tears of sorrow. We knew. We couldn't take her. As beautiful and sweet and gentle as she was, we couldn't take her. Her needs and Mary's needs were more than we could handle. It broke our hearts. Our little secret could not be shared. We had to kiss her head and walk away.

It was a night of shock and grief. We want back to our hotel wondering how we would care for the one and leaking tears over the other. We knew we couldn't handle two children who both needed arms to carry them. We knew we couldn't handle two children who needed help with all their daily living needs. We knew that both of them would improve and gain in strength and ability but we understood our limitations. We couldn't do it. We already had two physically challenged children at home. Four was more than we could handle.

Our grief was mixed with anger at the words spoken over Cadence. She was a child neglected. A child who had been set aside.

Oh she is worthy of a family. She is precious and little and gentle. She wears diapers and is weak in her legs, so they tend to carry her. She is quiet and does not talk. They were not kind in their words about her. They wrote her off but I know that she is more than those words. I know that a family who loved her would draw her out and breathe life into her. She would blossom and grow. She absolutely would thrive in a family!

We left her behind, but we have not forgotten her.

We also have not forgotten another little bit of a girl whom we met. Jenni

She was in Mary's group the first few days we were there. We were given the option of adopting her after Cadence but we were only approved for two and she had an older brother.

She came charging into the room several times - full of life. At one point she came barreling up to me and threw herself into my arms and cried out "Mama" with utter sorrow knowing that she was not the one chosen. She too is not one they regard with favor. She has cleft palate so her speech is not clear but trust me - she can talk.

We heard her little voice, and we know she can verbalize. She was much more verbal than Mary. She is little and adorable. Her pictures do not do her justice, and she too would absolutely thrive in a family. Her profile indicates that she has an older brother, but he's 17 and will soon be out of the system.

We left them both behind. We had little chance to spend time with either girl but they both left their marks on our hearts.

There was another one left behind. A sweet little boy name Ronald. He was our Angel Tree babe from last year and is our boy again this year.

He was left behind by a family in process right before us. They wanted him with all their hearts. Like Cadence, he was their secret. They were in pursuit of a pair of sisters, and  he was in the same institute. It would have been so easy for them to snatch him up too. They were raising the money and had a room prepared and were totally in love with him. We knew about their secret, and were rejoicing that he finally had a family who wanted him. But because of complications with the sisters they were unable to request his referral. They spent time with him, played with him, held him but in the end had to leave him behind.

Three children.

The ones we left.

All three are on the MACC Tree this year.

We officially are Warriors for Ronald and Jenni but we are also committed to advocating for Cadence too.

I've been a lousy Warrior.

All three of them are at the bottom of the tree.

I have no idea how I'm going to raise money for them this year. Ronald has $4.50 and Jenni and Cadence both have less than a hundred. Oh My!! I'm LOUSY this year!

But most important - I have to get them SEEN!!

They are no longer secret children!

They have been seen in real life by our family and another. They are all children who would thrive in families!  They are precious and worthy no matter what their caretakers say about them.

Please go click on their profiles. CADENCE. JENNI. RONALD. SEE them. Pray. Consider. Ask God. Please. I need two or three families who can find room at their table.  I need two or three families willing to do some serious trench work. Families willing to battle for these kids.

These three littles ones are the ones we left behind.

We grieve over them. With all our hearts we pray they find families!

If you absolutely cannot take them home then please help me raise funds in their grant accounts. There are families who CAN adopt these three and every single donation will bless them so much.  So please help me get their accounts moving! 

Please share about them. Tell your friends, neighbors, people in your church. Help me get them seen!


Make them your secret this Christmas!!

Friday, November 24, 2017

Turkey Day Fun!


From the Normal Nalles

Little girl is wondering what kind of family she has fallen into...


Crazy people are making me wear this lousy helmet.

Just cause it is pink doesn't mean I like it!!

But that Thanksgiving thing...

Definitely could do that every day!!

At first it was a bit overwhelming with new people barging into my house and calling me Mary when everyone KNOWS that my real name is Sasha!!

But things began to look up during outside swing and trampoline time.

Back inside to discover a whole table of snack foods at just the right height and a whole bowl of DIP to send me directly to Dip Heaven...

Then a feast at 2:00 and dessert at 4:00 and more snack foods at just the right height with more DIP... Then movie with brothers and a whole plate of MORE dip and snack foods!!

Not only that but being the absolute center of attention was a dream come true!!

Oh yes, little girl could definitely get into Thanksgiving every day!!

She was the star of the show.

Thursday, November 16, 2017

Our New Normal

We walked into our house late late Friday night and I remember smiling with delight at how clean and orderly it was.

Five days later I am staring at the chaos and wondering if I will ever find order again! It is amazing what one little girl can do!!

It's been a wild five days. The first few were spent with an upset, sick on her stomach, jet-lagged little girl who was in fight/flight mode. Pinching, kicking, dirty looks were the norm. The last three have found a much calmer, sweeter and extremely endearing little girl who is quick to laugh and who loves cuddles and kisses and loving hands.

Medically she has already been through a battery of tests including an EEG that normally takes 4+ hours to several days in order to accurately assess seizure activity. She had enough seizures in 25 minutes that they could have stopped at that point. They wanted a full hour so little girl had to lay for 35 more minutes.

We were stunned at how well she did at the hospital and at the doctor's office. We were expecting her to fight and cry but instead she just took everything in stride.

It will take time to sort out her epilepsy. More tests are scheduled so we don't expect quick answers. Her medication has been tweaked and we are waiting on a helmet with face mask that will allow her to have a bit more freedom without having someone hanging on to her non-stop.

No. I'm not excited about putting my adorable little one in an ugly helmet with a face mask.

It hurts my heart a bit.

But I also hate watching her smack her head over and over again.

We can't ever let her out of our sight. Not for a second. She requires eyes on her at all times and hands on her whenever she is up and walking. It's not normal but it is our reality.

I almost lost it yesterday in the bathroom at the doctor's office. They needed a urine sample so I  was trying to navigate the logistics of the process. I had one arm around her and was trying to get all the stuff ready with my other hand. I wasn't holding her good enough. She had a seizure and her head slammed right into the cabinet. I sat in the bathroom comforting my screaming little one and felt like screaming myself.

On a scale of low to severe epilepsy - she's been given the severe label.

We knew that in the very first hour of meeting her, but it's still hard to hear when it comes from the mouth of an expert.

There are silver linings in our new normal. The little boys have discovered that their little sister LOVES Legos. She will sit in their room with them and will build right beside them. They are so relieved that she isn't Miss Destructo but instead is content to make her own little creations. It is precious to stand outside the door and listen to all three of them chattering away. Two who are conversing with each over about what they are building and one who is chatting to herself or quietly singing a little song.

She is able to play quietly by herself but tires of always sitting. She is weary of the constant restraints her epilepsy puts on her. She's a little girl who wants to be able to walk across the room without everyone freaking out about it.

Until her seizures get under control we will continue to freak out. It is our new reality. It's not normal and we realize this.

Keeping eyes on a child 24/7 makes it difficult to get even the simplest tasks accomplished. It's probably the hardest part. Just about every task requires needing to go to another room to get something. That requires either picking her up to get whatever is needed, risking leaving her alone and running fast to get whatever is needed or just not doing whatever it was that needed to be done. Right now we tend to just not do whatever it is that we wanted to do! She has seizures every few minutes. We just can't leave her.

It's why chaos is our new normal. It's why my house looks like a bomb just went off. It's why it has taken me the entire day to write this blogpost. It's why all the protesting in the world from one little girl is not going to keep us from putting her down for a nap each day. She's safe in bed. Praise the Lord her nannies trained her well to never ever get out. Praise the Lord!!

We are plodding through. We love our little girl. She's stolen our hearts and has us firmly wrapped around her little bossy finger. We are working hard at keeping her occupied and entertained. We are praying that answers for her epilepsy will come soon. We are plodding through.

It is our normal for now.

Sunday, November 12, 2017

Welcome to America

Welcome to America - Mary (Sasha) Alexandra Nalle

We survived!

We are home.

It was a long long journey with little girl flying on two airplanes for a total of over 15 hours in the air. It was not until the 2nd flight, in the last 2 hours that she finally fell over in her seat in utter exhaustion.

She braved the airplanes like a pro but completely went unglued at the thought of using any of the public bathrooms.

Kicking, biting and screaming ensued every time we attempted to go in one.  Go figure!

It was a quiet homecoming. Elijah came home from college so that he could come with Ben to meet us at the airport. It was a sweet sweet moment for us to have all five of our children gathered together.

We walked in the house and were stunned at the piles of presents and boxes. Our dear Black Box Players showered us with gifts and other dear friends helped provide a whole host of needed supplies to help keep Mary safe. We were beyond overwhelmed at the outpouring of gifts!

We are working through the presents slowly so as not to overwhelm her.

It's kind of fun to open the bags little by little.

The first 24 hours home were rather hard for little girl. Her stomach was a mess and she was in fight/flight mode. We barely got more than a glimmer of a smile out of her and if we got too close she was swinging hard and fast.

The only ones she let into her space were her two big brothers. They have been so unbelievably good with her. Once they saw her first seizure they became her greatest protectors. Each of them hovering and caring for their little sister with such sweet tenderness.

This morning she woke up way before the sun came up. Little girl is going to have to change her wake schedule because this Mama needs those early morning hours to work. She ate her first real meal and no longer has a deep need to pinch Mama whenever she ventures near. Praise God for that!!

Mary Sasha - meet kitty.

I am sad that my little girl never got the blessing of knowing our Summer dog. I have thought often of her in the last two days. She would have been so gentle and kind to our little one.

It is good to be home.

Oh Yes! It is really good to be home!!

Thursday, November 9, 2017

Homeward Bound

Our facilitation team pulled out all the stops today!  They went to great lengths to get Mary's passport picked up from the city, registered in her region and then driven back to the city so we could have our embassy appointment THIS AFTERNOON because tomorrow is a holiday and the embassy is closed.

We are homeward bound.

Tomorrow night this little girl is going to step down onto U.S. soil, and I will take my first breath since starting this process back in January!!

I can't wait to breathe again.

We are going to go home for a few days, and then on Tuesday we will begin getting her the medical attention she desperately needs.

On our way back from the embassy today, we were telling our driver about some of the lousy times we've had in airports. One of the worst happened in Istanbul almost three weeks ago. We were standing in a bottleneck, trying to help Aaron and John through a long line, when an airport worker came up and grabbed our wheelchair. We liked him fine at first; for he helped us cut in line. But then he led us to a holding area, took John's boarding pass, and told us to wait. Then he disappeared, stretching a rope across the gate as he left.

For the next half-hour or so, we got a small taste of what being in a Turkish prison must be like! There was no explanation of why we were there, or when we might be released. Our fellow prisoners, also wheelchair-bound, were complaining that they had been through this before-- and that the workers' "help" had made them miss their flights! It was only with help from an interpreter that we finally won our freedom.

Remembering all that, Istanbul was the last airport we wanted to use tomorrow. So guess where we're headed? Where else but Istanbul?

It's going to be a long day with many adventures. We are praying for a good sense of humor, a lot of patience, strong arms, calm children and no holding pens. 

We close this report with another plea to the plumbers of this country. Let's talk about hot water heaters. Now, I would never say that the hot water heaters here are the size of thimbles. A coffee cup is more fair. Fortunately, plumbers have found a way to compensate for this small size: by jacking up the temperature. A little bit of hot water goes a long way when it's hot enough to melt glass! But this is precisely why we need to know whether hot is on the left or right. It can mean the difference between a cold shower and third-degree burns. So please, plumbers, can you choose one and stick with it?

Wednesday, November 8, 2017

Out and About

Who cares if it is a wee bit cold and we are freezing our toes off!!

We go out every day and explore what is within walking distance! Of course in this non-handicapped world - poor Rob has to carry the wheelchair with Mary in it up and down all the stairways that are EVERYWHERE. Poor John can't get up and down if there are no rails so I have to be his rail. Aaron wears out when we walk long distances but he is the best walker so rarely ever gets a break.

It is difficult for us to navigate this city but we are tough and mighty and we will not be defeated!!

Yesterday we walked all the way to the rainbow arch and looked out over the city! We accidently took the wrong way and ended up at the top of an outside amphitheater.  Lots of stairs. No way down except to climb.

We did it!!  We are tough!!

Okay. I about had a heart attack when little girl tried to throw her legs over the wall. If you saw the drop below you would understand why.

Papa held little girl's hand and she got to run around - shouting and yelling with glee! It was pure joy for her.

It was a LONG hike - we are grateful that two can fit in one wheelchair!

We are still waiting for the passport but we did get some good news today. She has now been issued a passport number which means her passport is close to being printed. Once it is printed then it is sent to her region where it is registered. Then it is sent back here and we can then finish this process.  We are praying hard that we will have passport in hand soon so we can fly out this weekend.  We realize a lot of stuff needs to fall into place for this to happen but that is how we are praying.

Thank you to everyone who has been praying for us. Thank you also for all your sweet words of encouragement and thoughts on how to help Mary. We read every comment and have been diligently researching and learning. We do not regard your ideas and thoughts as a nuisance or a burden. We have researched CBD oil and the different diets that are out there. We have been looking at the possibility of allergies and the different medicines that are used for epilepsy. We can't try anything until after we get her home and under the care of a doctor. But we are open to do whatever it takes to help our little girl. She is precious to us beyond words.

Tuesday, November 7, 2017

Even in the Hard

What do you do when you're stuck in a cold foreign capital, waiting for a passport that refuses to come? One thing we tried was keeping a seizure journal for Mary. We started strong on Sunday morning, intending to record every one of Mary's seizures and its time so that her doctor would have more to go on.

Seeing it on paper made us realize just how out of hand her condition is. She had six seizures in the bathtub, one while drying off, several while getting dressed, and four more at breakfast. By the time she finished breakfast, we decided her journal was full enough for awhile. We don't have time to record seizures when we are trying to keep little girl safe!  We're in survival mode here, pure and simple. We have a decent video of a typical seizure, and that will just have to do. 

We are trying not to feel desperate about the passport. We know our facilitators are doing all they can. They have made many phone calls on our behalf, and even went to the office in her region to make a personal plea. All for naught, so far. All we can do is wait and pray.

Another thing we've tried is taking long walks. We thought we scored big yesterday, when we happened upon a nice little playground. Little girl loved it when we put her restraint on the swingset so she could enjoy the swing.  The joy on her face was priceless.

Then she decided she wanted to climb on the jungle gym. Of course it wasn't for children with special needs; and of course it was the dangerous kind with bare metal jutting out everywhere. Just looking at it almost sent this Mama into a full-blown panic attack.

We did everything we could to keep her safe. I handed her up to Rob, and he followed her around with a firm grip on her the entire time. When she came down the slide I was at the bottom to catch her. It was a good system. Scary, nerve-wracking, but good.

That is, until little girl reached the bottom of the slide and got tangled up with Mama. Not because of a seizure, just because. We both went down. All I could think about when we landed was that she was going to be hurt, and it would be all my fault.

Fortunately, Mary was fine. Me, not so much. I'm now sporting an ace bandage on my wrist and trying not to think about how much it hurts. Thankfully, nothing was broken but my heart. We tried extending our walk after we left the playground; but it was too cold, and our hearts just weren't in it. So we limped our way back to the apartment, feeling defeated.

We covet your prayers right now. Not only for her passport to come, but also for answers to her seizures. We know that the medication we are giving her right now is not at all effective. We are desperately praying for answers. We are spending hours researching and learning all we can. We cannot wait to have her evaluated by those who are wiser and more knowledgeable than we!

Aaron and John are hanging in. Aaron is longing for home, but emotionally doing as well as can be expected. John is John. We find ourselves in the same trenches here as at home. Mary is drawn to him because he is closer to her size and emotional maturity, and knows more of her language. We are praying that in the long run, he will strive to be a good role model for her.

Hoping today will bring a passport and an exit plan.

Grateful that even in the hard, even as we are limping and struggling, that the Lord Himself is with us. In that lies our peace.

We close this report with a plea to the plumbers of this country. If it's not too much trouble, then could you please get together and decide whether the hot water goes on the left or right? We don't care which, as long as you choose one. If not, then could you at least make all the faucets the same in the same apartment?

Saturday, November 4, 2017

Oh Where Oh Where is Her Passport?

I watched them take her passport picture. She was ours on paper but not physically. Her caretaker was in control and had her stand in front of the camera to take the picture. She did not want to be there and was upset and scared.

She looked lost and lonely.

An Oliver Twist orphan.

Waiting for the happily ever after story to happen.

Well, little girl is an orphan no longer but the happily ever after isn't quite as grand as she expected.

In her economy - having a Mama and a Papa meant unlimited amounts of candy and food, no naps, free range to do anything and never being told no. I think she was also banking on an unending line of new toys and rooms and rooms that all belong to her.


Things aren't quite as happily ever after as she may have imagined.

Darn parents make her take naps every single day. 45 minutes of weeping and wailing doesn't sway their resolve that little girls need naps!

Those same darn parents are making her eat fruit instead of candy (although an occasional piece of candy is doled out) and they are not letting her consume everything off her plate and everyone else's plate. Seriously?? Portions?? Is that fair??

And the rules... really?? Little girls should be allowed to push every single button on every single device. And where are the new toys??  The ones here are just plain boring after a week of playing with them over and over again.

And this housing arrangement??  WHERE'S THAT COOL BED IN THE PICTURES?? They keep telling her about this cool house but we just stay day after day in this apartment and it is getting smaller by the minute!

Little girl is feeling a bit miffed these days that things aren't going quite as she thinks they should.

We are all feeling a bit caged and so so ready to go home.  Aaron is beyond homesick and even John is starting to think about home.

Oh where, oh where is her passport?

We are stuck until it comes.

We have no idea when it will come.

So we are waiting out our days trying to keep three children from climbing the walls in this apartment. We have gone to a few fun places and we take lots of walks but still....

The days are long right now and seem a bit endless.  Home is calling. We are worried about our little girl as her seizures have not improved.  It is the absolute hardest part of all of this waiting.

Please pray with us that her passport comes soon!!

Thank you!!

Thursday, November 2, 2017

Keeping Her Safe

We went to the circus on Sunday.  It was most definitely not handicapped accessible. For that matter, this entire country is not handicapped accessible. To get into the circus you walk up two sets of long stone stairs that wrap around the massive building. Easy for Rob and me. Very hard for our three littles. Aaron needs someone to walk behind him to make sure he doesn't lose his balance and come crashing down. John can't climb steps without a rail so he needed someone to carry him up those two sets of long steps and Mary also needs someone to hold her tight or carry her in case she has a seizure.

Mary was in a funk, making it hard for me to hold her hand. So poor Rob was left being the child-carrying-camel while I assisted Aaron.

Yes, we get a lot of stares.

Two children in headbands and one with canes.

We learned long ago to just tune out the stares. 

Most people recoil from Aaron. The way his little arms hang in front of him and his funny little gait cause people to either quietly imitate him in jest (break my heart) or move away from him. Most people are drawn to John. He's the one they want to pet and coo over. He's had more money and little gifts pressed into his hands than I can count.

Now we have Mary. Most people here are confused as to why we have a headband on our sweet girl. Girls here are supposed to have big bows in their hair and their hair all done up in pretty braids. So we are definitely getting some questioning stares.  Until they see her have a seizure and then they understand.

Yes, we are a bit overwhelmed right now. I won't lie. Home will be so much easier. Everywhere we go here is difficult with our three. The weather is cold so going out and walking the streets isn't a fun option. Mary wants to grab everything in her reach when we enter a store which makes shopping for anything an exhausting wrestling match.  John gets exhausted walking long distances but taking the wheelchair out has its own difficulties. With the amount of stairs in this city - it just adds one more thing to carry up and down the steps.

We are muddling through. We are stuck in the capital until Mary's passport comes. This could happen this week or next. The worst case would be the week after. After the passport comes we have to take it to the embassy and get her visa. If the visa is able to be printed that day then we can go home the next day. But if they can't print the visa.... then we wait... again...

While we are waiting we are doing a lot of talking and observing and trying to figure out ways to make things safe for Mary at home.

As soon as we met her we ordered her a headband like Aaron wears to protect her head when she falls. Aaron has been wearing a protective headband for about a year now. He can't catch himself when he falls and the scars on his head bear witness to the danger of his falls. We found the headband in our research and tried it out. It's actually made for soccer players to protect them against concussions.  It has been a HUGE help for him and he doesn't mind wearing it at all. It is lightweight and doesn't cause him to sweat.  We are so grateful that Mary doesn't mind wearing hers either. She willingly puts it on and doesn't mind us adjusting it after a seizure. It is not perfect and I am not in any way endorsing it but it does cushion their heads when they fall.

We bought no-leak sippy cups so that her drink doesn't go flying and spill when she loses it. We ordered suction cup plates and bowls and cannot wait to use those instead of the glass ones here. We have already had one shattered bowl and are doing our best to prevent more from happening!

We realized rather quickly that sitting in a chair without something to hold her in the chair was a recipe for disaster. So we researched disability seats and got immediate sticker shock. Thankfully, we have a friend who can SEW who worked with us on designing a simple restraint made from a backpack I found for a few dollars at a thrift shop. It works amazing well. It doesn't stop her from dropping her face into her plate (or sending her food and cups and plates crashing to the floor) but it keeps her from falling out of the chair and it gives us tremendous peace of mind!!

It's also easily portable so we can take it with us to restaurants!! She can get in and out of it herself although right now we are not encouraging this. We have some things we want to do to the restraint to change it up a little but we are so grateful for a simple solution to keep her safe that didn't cost the farm. 

We have already installed gates at the top of each set of long stairs in our house in order to provide a barrier for her in case she has a seizure at the top of the stairs.

A few months ago Rob built a swing set. We had to get Aaron a special rather expensive swing so he could swing safely. We realized that Mary will need the same swing.

We will need to put foam floor tiles on her bedroom floor so that she can play safely.

We will need to get a child's sized potty so she can be independent. Right now we have to hold her to protect her.

We need bibs for when she has seizures while eating.  We have discovered the hard way how messy seizures can be!

We will eventually need to find her a safe bike she can ride. 

The list will probably grow as we encounter different hurdles.

We are thinking and considering and trying to figure it all out.

It's what you do when you have children with special challenges. 

You figure out how to keep them safe.

Nothing we do is fool proof. Aaron still falls. Mary still has seizures. She still bangs her head and her body is covered with bruises from all the falls.  It breaks our hearts. But at least we know we are doing the best we can under the circumstances.

When we get home arrangements have been made by a good friend of ours to get us streamlined into the University of Virginia's Pediatric Epilepsy center. We plan on getting her admitted as soon as we can after we get home.

We are hoping and praying that we can find medicine that will make all of our considering and planning a thing of the past. That is our greatest desire for our ice cream loving little girl.