Where we are

August is always a tough month for us and I really needed to take a break. I have disappointed myself in a lot of ways lately, but I have taken time to reflect on those things, set them down, and use them as a stepping stool moving forward. A mom of children with special needs really can't win. There is always more that you could have done, a therapy that you didn't try, a parents meeting that you couldn't squeeze in, special ed law books that you didn't yet finish, and on and on.

I'm learning how to deal with where we are.

Here is where we are:

Zhen is a mess. He NEEDS to be making noise constantly at school. He doesn't want to do his work. He does every little thing he knows to annoy anyone in his path. He is also being treated for a certain difficult type of infection. I'm wondering how much the medication is affecting him. I would LOVE to blame the medication, don't you know.

He has learned to say one word really well. "Bye."

Theo is a mess. His medication has helped him tremendously with impulse control, but he still can't resist water...no matter what is floating in it, if you KWIM. He finally started school last week and LOVES it! Theo and Max attend school in a completely different district, not by my choice. The two districts calendars do not line up well. They started two full weeks after my other kids.

He still has no words.

Ralph is making great progress. He started kindergarten a few weeks ago and after a few bumpy days, he seems to be settling in. After stuffing his hearing aids down the storm drain on the playground, I was a bit worried. Most of his school day is spent in an inclusive setting. He is pulled out for math instruction and writing. Can you believe that he can't hold a pencil? I was so busy teaching him letters and sounds that I forgot to teach him how to write? Now here we are. He reads sight words with me every night. That is my consolation.

Speech is so difficult for Ralph, but that doesn't keep him from trying. He is getting better every single day. We just have to remember to insist that he says things the correct way, even when we understand what he is trying to say.

Finally, Max. Max is a total sweetheart. He is sharp. He learns so fast and is SO easy to care for. He is wise in ways that you would not expect for such a tiny guy. He IS almost nine years old, after all. He is loving school, especially riding on the big bus. I hear that people are getting him mixed up with Theo. I don't think they look anything alike, so I don't get it.

Max on the left and Theo on the right. First day of school.

Recently I found that he is basically blind in his right eye. His eyes have been crossed too long, likely a problem that just got worse from staring at crib bars for years. The brain can't handle two different images at once, so it just ignores one eye...eventually shutting that one eye down altogether. Receiving this information was crushing to me. It's one of the reasons I have not been able to write.

You see, I was contacted by a family that wanted to adopt Max in 2010. Three years ago, at the age of six, his vision would not have been fully developed. The eye doctor told me that now there is almost no chance that we will be able to recover any sight in his right eye. At his age, his vision is fully developed. Three years ago, he almost certainly would have had the chance to see normally. Just think, what if something happened to his good eye now? He would be blind.

See? He is focused on me with his left eye, and the right eye turns in. He's not using it.

Three years ago, surely his teeth were not rotting out of his head...or at least perhaps he wasn't suffering the sort of pain that interfered with his ability to eat. He certainly couldn't have been much smaller than he is now.

Three years ago he was likely not covered in molluscum like he was when I met him. How did he get molluscum on his butt? Do I even want to know? Three fewer years of neglect. Three fewer years of abuse. How I wish I could have spared him those three extra years without a family.

One person could have spared him those three years...

Got 'Em!

Happy Got 'Em Day, Theo and Zhen! (Can't get to my photos of Zhen right now.) Three years ago today we walked out of the orphanage with you. What a day that was! I cried buckets for the sweet kids I would never see again. Zhen nearly choked to death on a banana. We had to rush to catch the train. All of a sudden, you boys were my responsibility and I'd be lying if I didn't say I was a bit frightened. 

I love you both and feel very blessed to be your mother. It's a privilege to watch you grow and learn.  

Urgent request!

I have most of my kids back in school now and lots of things to share. Really important things. But today, I want to take the time to tell you about my friend Carissa. It's urgent!

Carissa reached out to me more than three years ago. We were both in some of the same online orphan care groups and lived in the same city. I was cautious at first. You never know what sort of creep you might have become friends with over the internet, right?

Well, Carissa did not turn out to be a creep at all! In fact, she was a huge help to my husband in 2010 while I was in Ukraine adopting Theo and Zhen. Her girls became friends with my kids. They came to the Buddy Walks with us until they moved to Texas last year.

Dear Carissa took photos at the airport when I arrived home with Zhen and Theo.  Though we were friends before, I let her into my heart that day. I had shared photos of both the boys on our adoption blog and on Facebook. However, online photos could not adequately convey Theo's poor physical condition. I had been with him daily for 5 weeks at that time, so I was desensitized to his skeletal appearance. But tenderhearted Carissa was completely overcome with emotion upon meeting my new 13 pound 4 year old son. I remember her sweet young daughters sobbing, too.

I knew that Carissa's family would one day adopt. She has a great deal of love and compassion for children with special needs. I'm so happy to say that day has come! They leave next week to meet their new child!

Unfortunately, due to some crazy adoption world people, Carissa has not been able to share much about this adoption. She has not had the opportunity to do fundraisers, opting instead to help other families in need. It shows a lot of character to assist others when you are in need yourself. I'm so proud to know her.

Carissa's family needs around $8,000 more to complete this adoption. They leave next week, almost three years to the day after we arrived home with Theo and Zhen. You can learn more about the Lanning family at the Grace Haven website HERE. You can also make a gift to their adoption fund there. This sweet family is also at the very top of the Urgent Needs at Project Hopeful.

It just breaks my heart that Carissa has not been able to share her joy and anticipation. I know how intimidating and impossible it can be to come up with the necessary funds. There is a child that is counting on us to help. Any amount is helpful at this point. Thank you for giving, praying and sharing this with others. I would like to send Carissa off to Ukraine knowing that she has our support and prayers all the way home.

Max has started weekly physical therapy. He is a high anxiety kid...one look at a swing is enough to send him into a panic. Imagine my surprise when he emerged from the PT room riding a trike! First, how on earth did they get him on it? And second, oh my wow! He is actually pedaling! The boy has some surprising skills.

We had quite a cool and comfortable July. Unfortunately, the week that we loaned our van was the week of the nicest weather, so we didn't get to go anywhere. But, as soon as the van came home we hit the zoo. Ruby got up close and personal with the tiger.

I still can't believe our momma kitty only had one kitten. He likes to curl up and snooze in tiny baskets, and boxes. Ralph loves him...a little too much. He has scratches all over his legs and hands to prove it.

Poor Jordan. He was going to get his long cast off and a new short cast put on the other day. But it seems that his bones are not healing as fast as we would have expected or hoped. He gets to keep the long cast for another three weeks. So disappointing. At least he broke it on the last day of camp back in June, so he got to do one fun thing this summer.

School started today for Rose and Jordan. It was an easy day of looking though materials. Tomorrow they start real assignments. I have low expectations while everyone else is still home for the summer, but we are going to at least try to get a head start on the year.

Chimp house

Max had his first feeding therapy session on Monday. He was evaluated several months ago, but it takes time to get a slot on the schedule.

When he first came home, he would only accept blended food. Textures were very scary! I'm proud to say that I haven't blended any food for about four weeks now. He is eating a mostly regular diet, just chopped really small or soaked in broth, juice or milk.

So, the Max's first therapy session went really great. He's made a lot of progress since his evaluation and is ready to learn even more. Next step, chewing!

Drinking is still a struggle. Thankfully, Max is doing better with a cup. This is a sippy cup with the stopper pulled out. The liquid runs out because he has no idea how to suck. So sad, but way better than drinking from a spoon like he used to do...and like the kids in his old grouppa still do. I have to laugh when I remember giving him juice from a spoon on our long haul flight home from Ukraine. We do what we must, right?

In other news, our school books have started to arrive...which is why my living room looks like a chimpanzee house, if you've ever witnessed one after the apes are given boxes or paper to play with! It is great sensory fun to play with the gobs of brown paper stuffing that we find in the boxes of books. This is the aftermath.

I worked on some school enrollment forms today. I scratch my head sometimes. Due to paper costs, I was asked to sign a release saying I would accept an online school district handbook instead of a printed one. However, they kindly included a printed handbook in both of my packets! Also, there was eight (8!?) medication release forms in each packet. I didn't need any of those 16 pieces of paper. So much for paperwork reduction.

We are in for a fun year. Some of my kids start school on August 13. Some start on August 28. Two different district schedules are bound to drive me insane. If I worked outside the home, it would be disastrous. God willing, we will find a place for all of our children in our home school district one of these days.

It's good.

Sundays are hard. Just plain hard. I love going to church. I love to meet with my brothers and sisters. But by the time I get everyone up and fed and clean and dressed and out the door, I'm usually feeling cranky and mean. I find myself asking questions like, "Is it worth it?" and "Is this a season? Will it get easier?"

After church today, the families and volunteers involved in our special needs ministry met for lunch and a discussion about sensory processing disorders. The room was nuts, mainly because of my kids. But, because I was in a room full of people who "get it," I didn't get anxious like I normally would.

Do you "get it?" By that, I mean, do you understand that kids with different needs and challenges are not something to fear? Do you understand that people with different needs and challenges have a complete range of feelings, emotions, hopes, fears and more? Are you uncomfortable about people who are different?

Today I heard a story of one of my boys' teachers/nursery workers. This person was afraid of my son with Down syndrome at first. Growing up, this person was never exposed to anyone with special needs. Kids like mine were kept separated from "normal" kids. This person must have panicked the first time I dropped my boy in her class. I was oblivious, of course.

Thank God for my wonderful sisters at church who have stepped up to help my kids get the most out of their church and Sunday school experience each week. Over the past few months, thanks to our awesome helpers, this particular teacher/nursery worker has had their eyes opened to the miracle of watching my boy come alive, learn to interact with other children, and grow in faith. No fear anymore. He's just another kid now.

It's hard. But it's worth it.

Maybe it's not easy, but it's good.

My life these days.

I sat down to write this morning. But, the floor under the desk was dirty under my bare feet. So naturally I grabbed the broom and started to sweep.

Of course, one can't just sweep a little area. One must get into each corner, push the dining chairs aside, toss the stray toys into a basket and such. Once the dust and dog hair was swept up, and since I already had the broom out, I swept the back patio as well, so the kids could play outside.

Of course, I had to pull a few weeds and set up the umbrella that had been blown over by the ever present Kansas wind. As I grabbed a puppy by the collar to stuff the rambunctious thing into his kennel so the children could come out, I noticed that some naughty child had locked me out of the house. Ha! My life.

Today is the last day of ESY, extended school year for Theo and Max. This is the last of my relatively quiet mornings for the next month and a half. How I have not been able to sit down and write much for the past five weeks disappoints me. Someone or something always needs my attention, and when it doesn't, I don't care to lift a finger to even type.

Jordan broke his arm at camp a few weeks ago. I have finally come to accept that I was not cut out to be a doctor. As much medical knowledge as a person can accumulate and access, there is nothing that can prepare for the vision of a caved in arm. You are either born with the capability to handle that or not, it seems to me.

Ralph is getting a full and independent educational psych eval. We met with the doctor earlier this week. Ralph was a rock star as usual. She was baffled that our school district is recommending a special ed classroom for him at all. But they are. And that's where he'll be this year barring some miracle. So I keep fighting for him.

The hard thing about having children with special needs is not the children with special needs. The hard thing is dealing with a world that is fearful and not accepting. Everyone who has dared to get close to my kids, dared to love them, dared to step into our world will tell you that they are better people because of it.

Theo saw a really sweet (and capable!) eye doctor recently. She said that she loves to see kids with special needs because they force her to think outside the box and get creative. I guess not everyone wants to work that hard.

Theo and Max do not start school until the end of August, almost a full two weeks after everyone else in our school district. Why? Simple. Theo and Max are being shipped to another neighboring school district this year. Their program was moved to our district last year...and moved out again for the next. What is the logic in that? In addition, the two district calendars do not coincide. There are 50+ days over the course of the school year where one district is in session and the other is not. If I were working outside the home, I would have to take months of vacation time, just to care for my school aged children. Gotta keep fighting for them to go to school with their neighborhood friends...and brothers and sisters.

Well, the dog got out...and someone needs to potty...