That time of year

Time for another new leg. Little Man isn’t so little any more and continues to grow out of these prosthetic legs. In fact, this year his amazing team of docs have decided that it is time to up the game a bit. His leg needs to be higher tech in order to meet his physical needs. In other words – our active boy has outgrown the simple leg design he has used until this time.

They are now making him a sleeve made out of a thick neoprene material that will create suction on his residual limb and then lock the leg in place with a pin. It is amazing. At the first fitting, Little Man declared that it felt like he was walking on a marshmallow. He is pumped by the cool lock system and excited by the soft fit.

After his second appointment to test the new leg design, our whole family had a very special treat. Clearwater Marine Aquarium invited us to meet Winter – the dolphin who stars in the movie “A Dolphin Tale.” The timing was perfect. Little Man has been attending swimming lessons and working so hard. He was over the moon excited to meet Winter, who can swim with or without her prosthetic tail.

Clearwater Marine Aquarium went above and beyond in making our day a memorable experience. Little Man was their VIP, and he ate up the attention.

The sweet woman who gave us the tour answered all of his 100 million questions about each animal they have rescued. We got to see places where the movies had been filmed, saw the animal “hospital” and where they prepare food for the animals. We met some amazing animals – so many turtles without flippers, otters who were orphaned, eels who needed help with their symbiotic relationships, and of course Winter with no tail. Hearing each of their stories was inspiring.

But they didn’t stop there – they freely gave to our family in hopes of inspiring our new swimmer. They succeeded. Little Man’s favorite part of the day was his animal encounter with Hope. He wasn’t able to meet Winter up close because she is in intense physical therapy at this time, but he was so excited to hear how they make new prosthetic tails for Winter. Her tail is made of a neoprene sleeve similar to the leg he will have.

Clutching his new stuffed animal (a dolphin with a prosthetic tail that CMA gave to him), he said goodbye to Winter through the glass of her tank. He encouraged her to try hard in her physical therapy, and he would try hard in his swim lessons. Melt your heart sweet. He claimed it was the best day of his life. To be honest our whole family had a great day watching him feel special, celebrated, and encouraged.

Thank you so much Clearwater Marine Aquarium for taking such good care of our animals and for inspiring kiddos like Little Man.

No pity hugs, please.

I am new at this – but I am not. Maybe, I just feel new to being a mom to special ability kids because I still fumble to find the right words. I don’t think quick enough on my feet to diffuse a surprising situation, and I am still shocked over how folks will treat someone they see as disabled.

I want to start by saying that I don’t intend to rant or rave. I am not complaining, and I am not sure a blog post is the place to really help anyone understand kiddos with special needs. Inspired by this post, I realize that we have to tell the stories of our amazing kids. I really think that many people have not spent time with kiddos who might be labeled in society as disabled. So, I hope this post can serve as a peek at some of the things we face, comments that are made, and what we experience.

Little Man has spent times in and out of a wheelchair leading up to and after re-amputation surgeries. We always have to find a new rhythm. During these times, I realize anew how inaccessible the world can be to those who are immobile, as well as how unaware folks can be.

For example, there is one handicapped stall in the bathroom. Four other stalls are unoccupied, but for some reason the handicapped stall is being used. The desire for extra leg room means that Little Man has to wait unnecessarily to go to the bathroom. What stall your choose in the bathroom…it matters.

At the grocery story, children point, stare and ask rude questions like, “What is wrong with you?” – and all the while the parent stands by gawking. Saying nothing. Word choice matters. Body language matters. I so wish in these situations (Yes, I did mean to make that plural. You could change the location from grocery store to park, church, beach….it happens everywhere.) I wish I could pull the child and parent aside – smile and say- “Let’s not use those words. How about you ask us about the bandage or about the wheelchair?

At times even when comments aren’t made, folks will turn away (or even run from us) hoping to avoid uncomfortable situations or words. Like one day at the park when Little Man’s leg falls off coming down a slide. A child sees his leg flying down the slide first. She screams. Cries. Instead of helping his daughter engage and understand, her dad grabs her by the arm and literally runs. Their park visit cut short because they just weren’t sure what to say or do when my son’s leg came off at a bad time.

I am not new at this. We have been learning the language to use. Preparing our children how to be kind even when those around us don’t exactly know how to handle us. I step in to explain and hopefully help those we encounter to see the world through the eyes of our kiddos….just a little bit. Our goal is for our kids to understand that they are special, loved, unique. There is nothing wrong with them.

So, I thought I was ready. A teen in a wheelchair kinda fits with my experience.

But, not really.

I wasn’t prepared for everyone who really is trying. They want to connect – to include our son in conversation and to help him experience things around him. I think folks just don’t know how to do that. They look at him and wish his life was different – that he didn’t have to be in a wheelchair – and wonder why life handed him this difficult hand. (In other words – pity.)

I truly want to believe that this all comes from a very good place in the hearts of people – but there are just a few things I wish I knew how to change…..

I am walking through the store with two teenage sons. If you wouldn’t dream of patting my other teenage son standing beside me on the head, then please do not consider doing that to my teen in a wheelchair. No head pats. It also is not appropriate to push his chair for him, to offer to help with wheelchair transfers, to ask about his medical condition, to lean down into his personal space or to hug him.

(Frankly, hugging is a big deal. No pity hugs. No. No. No. And actually while we are on the subject – not pity waves, no pity hellos, and hold all pity comments to yourself.)

Why? Why do I become tongue twisted when a woman at church leans down to my teenage son kisses him on top of the head and hugs him? My son who she had never met before. My son who is in a wheelchair and can not lean away. That, my friends, was a pity hug. A hug that says I wish life wasn’t like this for you.

I appreciate the sentiment and the effort, but I really wish I had the chance to have a redo with this woman. I would explain to her that my son has strength, perseverance, and a good attitude thru tremendously difficult situations. I’d invite her to sit with us and get to know how amazing he is…just the way God made him. I have learned so many things from him. I know this woman could too – then she would be in a place to give him a real hug.

At an airport playground a boy came up to Little Man who was wearing shorts and pointed to his leg. “That is weird.” He said. My son replied….”It isn’t weird. Let me show you.” He takes off his leg and starts to hop. “My super power is that I can hop longer than anyone else.” The little boy and his brother stood and stared. I was biting my nails wondering when I should jump in myself. Then I heard the words….”Wow! That is so cool!” Before this lion momma did anything in defense of her cub, Little Man had half of the kids in the play place hopping on one leg. He did out last them all. The next hour was filled with good play. That is how change happens. Weird turns to cool. Pity never takes root. Abilities are seen and applauded.

B won’t be having hopping contests at a play place, but you can get to know him too. He enjoys conversation. You can do this by taking a step back so you can look him in the eyes, pull up a chair next to him or even squatting down next to his chair. (Not sure if I can explain, but that is all very different than leaning down into his space.) Listen to his newest tongue twister – he loves finding new ones in Chinese and now in English too. He loves playing board games and going for walks. You could hold the door for us. Let B carry your bag. He loves helping and is awesome at teaching folks new words in Chinese if you are interested in learning.

Hopping along side my one legged wonder or sitting next to my strong teen – that is where you will find hope alive. Those are the positions that make change happen. Help us write a different story – a story of open communication and seeing things from a different perspective.

update on our boys

Our borrowed vehicle is full again.  It’s brimming with bags and snacks for 7, as we wear a path between North Florida and Tampa.  But I am thankful for all of the loud voices and our space challenges.  It means that we are all together again.  I find myself taking in our craziness with tears in my eyes – thankful for all of it and thankful our season of separation has come and gone.  We survived and I now have a deep appreciation for single mothers.  Wowzers.  Parenting three kiddos on my own for 7 weeks was totally enough for me!

Granted, the last 7 weeks have not been normal ones.  With one kiddo healing from major surgery and a second who is learning how to be in a family (but his family was oceans apart) created some interesting days.  Like the day I was driving 6 hours from the hospital to our summer home and it took 8 hours because I learned our newbie gets car sick and Little Man was allergic to one of his medications!  Fun times.

But, honestly the hard days were few and far between.  Things went so much smoother than I could have dreamed.  Little Man continues to heal and is delighted with the progress that is being made on his new prosthetic.  Weekly trips to the hospital are tiring, but will be worth the effort once he is walking again.

He has been measured, casted, and chosen a color and design for his new leg.  This past week he went for a fitting – everything has been made except the outer shell.  He walked on it.  The prosthetist adjusted the rod and metal plates that make up the inner parts of the leg after watching him walk.  So cool how they can match his legs and help him walk with an even gait.  Every time we have a new one made I am amazed at the process.  One more week and we should be done.

Little Man isn’t the only one making progress.  Mo has gone from being car sick every ride and screaming in his car seat….to being a better traveler.  I wouldn’t say a great traveler, but he is doing much better.  He also is learning new English words every day – dinosaur, corn, and neck to name a few.  He often will say a new word over and over – proud as punch that he has figured out another piece in the puzzle of communicating with this crazy new family he has been dropped into.

We are learning new things too.  We have discovered that Mo LOVES swimming.  I mean all kids like swimming, but this kid wakes up every morning and only wants to wear his bathing suit and has taken to sleeping with his puddle jumper.  Teddy bear?  No, thank you.  His new comfort thing is a flotation device.  I can’t make this stuff up.  He also likes trains, singing, eating (almost anything) and jumping around after his big brother.  His first 4 months with us have flown by.  He continues to delight us with his sweet ways and I often wonder how we have been chosen to be so blessed by these kids I get to call my own.

If this post is going to be true to its title, I should update you on Soccer Dude as well!  He is about to start an online driver’s ed course and before long he will be starting his Sophomore year of high school….say what?!  Time is flying with this one.  Hubby and I keep asking ourselves what we need to pour into him before he leaves our nest.

Today at the beach Soccer Dude carried Mo on his shoulders out into the waves to give me a break from the toddler who never wants to stop swimming.  (Such a good teenager, right?!) I watched them wrestle in the water and play way rougher than I ever dreamt necessary – laughing, sputtering water, and enjoying each other.  Love my boys.  This mom, who grew up with only sisters, is a much better person now that I play with trains, wrestle and can shoot a nerf gun.

 

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On the road to recovery

Little Man was very nervous rolling into his 2 week post-op appointment.  His surgery went really well, but the first few days of recovery were a bear.  He was so worried about the bandages coming off and what was expected from him next.

We both sighed with relief when they told us how great everything looks.  The nurse actually said, “it looks beautiful!”  Because it has healed even better than they had hoped, we don’t need to make the 6 hour drive back to the hospital again until June 14th.  They also had prepared us for the possibility of needing physical therapy, but right now his knee has full range of motion and he is keeping his leg strong on his own.

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In other words, we have an easy 3 weeks ahead of us!  I am one thankful mom. It is downhill from here. While Little Man continues to recover, we have our minds set on enjoying parks, playing outside, eating a lot of pizza and trying not to miss the other half of our family too much.  They will be joining us in 23 days.  Not that I am counting.

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The next round of appointments, starting mid June, will begin the process of building him a new leg.  He already is starting to think about what pattern he wants them to use and is also counting down those days.  This boy is ready to run again. He is having fun popping wheelies and winning races against his sister on her scooter, but I don’t believe he will be sad to say goodbye to the wheelchair.  We should have his new leg the first or second week of July.

Thank you for all your prayers.  I know people say this all the time, but I really mean it….the prayers are getting me through.  The night after Little Man’s surgery, I was exhausted and he was in so much pain.  We both were reaching our limits.  I asked Hubby, “do you really think everyone who says they are praying is?”  His simple “yes” helped me to pause, take a deep breath, and push through that night.  I also believe that it is by G0d’s grace that Little Man is healing so well.  So you guys keep praying and this mom might keep surviving!

 

I can do all things

I usually end the year by making pizza for my students at the orphanage.  Some of the teens knew something was up when I came in this week with all the contents for a pizza party.  I explained that I needed to go to the States so my son could have a surgery.  Most of the kids simply accepted my need to go and asked if I would come back – everyone except one teen.

He is wheelchair bound and unable to use his hands well.  His speech is unclear, but his mind is sharp.  This amazing teen is caught in a body that just can’t respond.  He inspires me often.  He uses his mouth to hold a paintbrush, will encourage the other students to do their best during projects when he is unable to participate, and has used his spare time learning all of the colors (and many other art words) in English during my class.  Amazing.

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After he processed that I would be gone for several months, he asked if I had an app on my phone that would allow me to call some of the local teachers.  “Then you could keep in touch.” He claimed satisfied with his plan.  I shrugged and said that my Chinese is bad and I really can’t use those apps.

He looked me straight in the eye and said, “I speak bad.  There are many things I can’t do.  Teacher, YOU can do this. Don’t say that.”  He finished his verbal reprimand saying that he would help me!

There have been several times facing this upcoming season that I simply want to sit down, cry, and tell God that I can not do this.  I can’t say the goodbyes.  I can’t travel with three kids.  I can’t face my baby’s surgery without Hubby.  I can’t be separated from half my family for this long.  Oh, my list (and self pity) could go on.

I have decided that all I need to know I have learned from disabled children and Sunday school.

Really. Who am I to say that I can’t do these things?  I can do all things through Christ who strengthens me.  We are going to do this – one step at a time, remembering that it could be harder and that Christ will strengthen us as we go.

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Not unlike my sweet student who was so willing to help his technology challenged teacher – so many of you have offered to help us through this season.  Thank you.  Every encouraging note, prayer, and gift have been deeply appreciated.  They help me to know that Father is providing for us….holding my hand every step of the way.

I have help for every leg of the journey.  A friend is driving hundreds of miles to pick us up from the airport and loan us their car.  Family is taking time off work to sit with us at the hospital.  A local church near Shriners has offered to be my community and help.  We have a furnished apartment to live in as Little Man recovers.

That is a pretty amazing list.

With each of those things in mind, I am going to say goodbyes with confidence.  I will trust that Moe will be filled with peace as we travel.  I won’t worry in the waiting room and I believe our family will thrive during this season of separation.

Through Christ.

By His own hand He leadeth me.

The decisions we have been making over the past weeks haven’t been easy.  Ironically, the hymn our family has been working at memorizing together is “He Leadeth Me” by Dr. Joseph H. Gilmore.  As we move forward one step at a time, we feel blessed to serve a good Father, who even had our homeschool curriculum present us with a hymn that reminds us that His hand is leading us even when life feels out of control.

He leadeth me. O bless-ed thought! O Words with heavenly comfort fraught!

I need that reminder as I pack up the youngest three members of our family preparing for a journey to the States that will not include their dad or siblings.  For sure, a two month separation would never be what we would choose (especially right after an adoption) but as we have pr@yed and talked to Little Man’s doctors we feel confident that this is what we need to do.

Little Man, Little Monkey, Moe and I will leave for the States May 8th.  We will land in Tampa, Florida where Little Man will have a bone reduction surgery on May 11th.  He then will have follow-up appointments over the next month.  6-8 weeks post-op they should be able to start making our guy a new leg.  He is looking forward to that.  He hasn’t been able to walk for three weeks and he already is tired of us pushing him around in the stroller.  He asked me to pack his old leg so that he would have it when he came out of surgery.  It wasn’t fun to explain to him that surgery wasn’t the only step towards getting him walking again.  The awesome thing about our Little Man – He has a joyful spirit and doesn’t let much get him down.  He has been telling everyone that he is excited to have surgery because the hospital has a great playground and the food in the cafeteria is wonderful!  That’s our boy.

Hubby and the oldest two kids will join us in the States as soon as the semester is complete – sometime the end of June.  We haven’t even left yet and I am already counting down the days. We then will all return to our Asian home the end of August.

Surgery isn’t the only thing that will keep us busy while Stateside.  We will be working at getting Mo’s immigration paperwork filed, will apply for his new American passport and be getting him a visa to return with our family to Asia.

We would truly appreciate you lifting up our family through this season.  So many transitions, goodbyes, and emotions will fill the weeks ahead.  Please specifically lift up:

  1. Me as I travel with an immobile kiddo and a two year old who has never done this world wide travel thing.  So thankful for Little Monkey who is one of my biggest helpers!  I know she will make the task much easier and more fun as she chats with me along the way.
  2. our new little guy…may Moe handle all of the transitions and continue to feel safe and loved in our family.
  3. for Little Man’s surgery and healing process.
  4. think of Hubby as he continues to teach his classes, finish homeschooling Soccer Dude and Roo, and keeps our home running while I am away.
  5. and last but not least, for our family dynamics and relationships.  Two months is a long time.

I know we travel a lot and our lives seem a bit on the crazy side….but really we are a family who enjoys pizza and movie/game night every Friday, shopping at the same veggie stand, and sipping hot chocolate and reading a good book equals an exciting night. Can I say routine?  The next four months are going to shake us up a bit – pr@y for us.

Out of this world

IMG_2523Little Man has his new leg and it literally is out of this world!  It fits great, looks cool, and he is walking more than ever.  We are so thankful for the folks at Shriners hospital for all they do to help our guy live to his full potential.  They bend over backwards to helps us crazy people who live half way around the world and travel in for medical care.  We are blessed to have them as our medical team.  In their great care for our guy and setting up what he will need next, his doctors let us know that he probably will need another surgery next summer.  It shouldn’t be as big of a deal as his bone reduction last summer, but due to his super growth, bone spurs are something we will have to look forward to.  We are keeping that in the back of our minds, and thinking that we may have another summer stateside in the near future.

Once Little Man was running on a new leg we were able to check a few other things off our to do list this summer.  Dental appointments down.  Eye exams and new glasses.  Soccer Dude’s follow-up and a minor outpatient surgery is done. Lots of grilling, a bit of camping.  Many lovely visits with friends and family in the memory books. Another year of homeschool supplies loaded into suitcases. The grand finale was two days of travel.  We are now home and can I just say….there is nothing like sleeping in my own bed!

It has been a busy summer! Now we are ready to settle back into our day to day lives.  We are taking the next week to rest and get over jet lag then we will start at it again.  Hubby can’t rest for to long – He has a trip scheduled for Thursday to look at the new campus in our city.  His university is moving!  It might prove to be a crazy fall with many new twists and turns as the university gets settled in their new location.  We will keep you posted as it develops.

Thanks for lifting us up this summer.  We are so blessed to have the support of so many!  Blessed.