Unexpected diagnosis

It just “happens” that we were asked to adopt the now 14 year old who has been on our hearts for years. We said yes. As a family, this is who God has called us to be. We didn’t go looking to adopt again. We thought we were done. God had a different idea. When you commit to following Jesus and loving the people He puts in your life, the journey can be very different than what you expect.

We are experiencing this truth in full force with our new son, B. It was a miracle that God brought him to us and provided for his adoption in four short months. We continue to see that miracle unfold as we watch him grow and blossom in our family. We tried to prepare ourselves for what adding a teenager to our family would be like. I had prepped myself for teenage attitude, bonding difficulties, anger and meltdowns. That has not been our reality. He has blown every one of our expectations out of the water. He is sweet and kind with his new siblings. He willingly is learning our family ways and takes joy in being with us. He is learning English at an alarming rate (he learned the English for isosceles acute triangle in Math. How does he know a word that I just had to look up how to spell inorder put it in this blog post?!) He also is becoming stronger with physical therapy, and he loves s’mores, 4-wheeler rides and a good game of “Quick Cups” or “Exploding Kittens.” In general he is a happy and kind kiddo – a wheelchair rolling miracle, and I am so blessed to be a part of his amazing life.

Our expectations for our new son also did not include a diagnosis of Spinal Muscular Atrophy. The test results are in, and we are so very thankful to know the root cause of his muscle weakness. At this time, we aren’t sure what this diagnosis means for him or for our family. We are consulting with multiple doctors, looking into treatment plans and trusting that God is in control.

We would appreciate your prayers in the coming weeks as we continue to seek how to best care for B. We specifically need prayers for wisdom and guidance. This journey God is taking us on….it isn’t what we expected, but we are thankful for the unexpected joy of a teen who so easily has loved us and is a blessing to love in return and we are also thankful that we serve a God who is never surprised by the unexpected. Trusting Him.

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.

On Monday

On Monday I will become a mom again. Since this is my 6th time, you would think it would be old hat. But, there is something about it. By birth or by adoption when the time comes for a precious soul to be placed in your care, there is fear and trembling as well as joy and anticipation.

I will never forget walking the halls of the hospital in labor for Soccer Dude, our oldest. I knew my life was hours from changing. Then as I dressed him to take him out of that very same hospital two days later, I realized that I didn’t have a onesie to put on him under his perfect going home outfit. I wasn’t sure how to buckle the crazy car seat carrier thing. I looked at all the bags and stuff we had to carry to the car and panic started to set in. “I don’t know what I am doing?!” And I really doubted the sanity of the medical profession, “Do they really let me just walk out of the hospital with this kid?! Don’t they see how unqualified I am for this job as mom?!”

A hospital or a government office…the feeling is the same. We prepare for months for this (okay, a lot faster for this adoption! 14 weeks from start to finish. Our adoption agency is freak’n awesome and God has moved mountains!) We have done mounds of paperwork, I have clothes ready and a new set of bunk beds added to the boy’s room – but there is still part of my heart that is trembling.

The situation with this adoption is very unique. We know the teen that is joining our family since he lives at the orphanage in our city and attends the special education school where I am the art teacher. The orphanage gave us permission to be there when he was told that our family would be his new family. I was so super bummed to miss the meeting as I was in the States with my parents, but happily woke up in the middle of the night to FaceTime for a few moments. Isn’t technology awesome?

Hubby explained that we would like to be his new family. He gave him a photo of our crazy crew and introduced him to what his new life might be like. The news was shocking for sure – B sat and took it all in. He then smiled and said. “I agree.”

Our hearts were so full to hear those two simple words. He agrees to join us and become the newest Williams.

The few precious moments I had with Hubby and B on FaceTime were so good for my heart. I was able to tell him that I was sorry we couldn’t tell him earlier that we wanted him to be part of our family. He simply smiled and nodded.

As my knees quake in these last days before he comes home, I think back to that conversation. He smiled. He agrees. What a unique, special, ordained way to become mom.

You would think that a mom 6 times over would be filled with confidence, wisdom and strength….actually, the more I do this the more I see how inadequate I am for the task of shepherding these souls. The little things like forgetting to pack a onesie for the ride home from the hospital – HA! I know how much bigger the mistakes can get. But I also know who is in control and that His grace is the only thing that can guide me through the task of loving another person well.

Grace. That is what I am asking for in the coming weeks. Pray that God gives it to me in large doses. Pray that God gives it to our whole family in large doses. May this bend in the road of our family teach us to love more deeply and lean into his grace more fully.

Front row seat to a miracle

Who are we to be a part of this miraculous story?

We are beyond humbled and in absolute awe as we see how God is providing for Benjamin to join our family. What seemed impossible is possible. $20,000 came in to pay for this adoption in two short weeks. It is miraculous and we have a front row seat in watching this miracle unfold! Gifts from family who are being so supportive, friends who aren’t calling us crazy (but blessed!) and even gifts from strangers – God has planted the desire on so many hearts to help this teenager find family.

Thank you. I wish I had more eloquent words, because these two small words in no way can convey the deep gratitude of my heart. Your gifts….they have encouraged us. They are making the way possible. They are placing a boy in a family. One less orphan. They are blessing our family with the treasure of another soul, and they mean the difference between us being able to do this or not. Huge. Thank you.

The paperwork is going at lightning speed and the invoices are rolling in – every need has been met and every deadline crushed. All of our paperwork to adopt Benjamin is being authenticated this week and we hope to have it sent to China next week. (In adoption lingo: our dossier will be sent to the CCCWA and we hope to have a letter of approval soon after.) Everything is on track for our family to grow by one at the beginning of the year. 5 short long weeks.

In between mounds of paperwork and grant writing, we are preparing as much as possible. We swapped bedrooms. The girls are now in the smaller room and the boys are in a room that will hold two sets of bunk beds. (That is a reality I never dreamt for my family!) Little Man feels all grown up in the top bunk with Mo sleeping up under him. I look at the empty space under the other bunk and long for the day to have it filled by the newest Williams. I thought this journey – because it is going so fast – would be easier. The waiting has always been the hardest part for me. This adoption is being expedited – the wait is nothing in comparison, but there is just something about knowing your child is sleeping in an orphanage. I can’t wait for those days to be done.

We would appreciate your continued prayers over this next month. Pray that each step of this adoption is expedited and that we will have Benjamin home by mid-January. Pray for us as we continue to prepare…not just our home but our hearts. A big transition is ahead of us, and we know we will need all the grace and mercy God can provide . Benjamin also is facing unspeakable grief as he leaves one world behind and enters this new one. Pray for his heart – for comfort, healing, and peace.

I hesitate to even write this next part, because you have all been soooo generous, but a few people are still asking how to give and how to help us on this journey. We have been given a matching grant through Brittany’s Hope. They will match dollar to dollar every gift given towards our adoption up to $5,000 which means we will end up with $10,000. 100% of the gifts will go to our adoption as they have generous donors who cover all of their overhead expenses. So if you are still feeling led to financially help us bring Benjamin home, then a gift towards this matching grant would be greatly appreciated. You can give your tax deductible gift here。 You can also share about this opportunity by giving folks this link http://www.brittanyshope.org/seedling/williams With this grant we will be very close to being fully funded. Amazing!

Thanks again for following us on this journey. I hope our next update will be telling you that we have all of our paperwork approved and that we were able to tell Benjamin that he will be joining our family.

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.

Twists and turns along the road

Pizza and catching up with an old friend – two rare treats that came my way last week. This friend, although absent from my daily life for years, has made significant impact on my life. Just been pondering where I would have been. Just been walking down memory lane.

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7 years ago (Could it have really been that long?) we were in the throws of adoption paperwork for our little Monkey. The process was taking so very long. We watched other families get approval and travel to their sweet babies while we waited…and waited…and waited. At the same time, a natural disaster had struck in the part of China where little Monkey was living. It was heart breaking, excruciating, mind numbing…and then some.

I remember venting all my woes to my dear friend over dinner in our home. She was the special education director at the orphanage in our city. She challenged me. “Do something while you wait. It will make it easier.” That is where it started.

As I waited for little Monkey, I taught one art class once a week. One class of 8 students. I thought it would keep me busy and give me something to do rather than check my email like a crazy woman, hoping for news about our adoption. Instead, the children in my class helped heal my broken heart; they taught me to serve and to love in a way I didn’t know was possible. It amazes me.

Our journey to adopt had begun as a seed in my heart as a college student. Hubby and I knew it would be a part of our family story from the beginning. What we didn’t know – that adoption would take us on a heart journey that didn’t end with our youngest two children. Our hearts and eyes were open to the world of orphans, children with special needs and we would be forever changed.

I shake my head and laugh as I look back on those times, 7 long short years ago. I thought it was about waiting for our daughter, Little Monkey, to join our family. It wasn’t about the wait at all. I was learning about the Father’s heart.

This was a pretty big twist in my life story. I had no idea the joy my heart would glean from painting with a child suffering with Cerebral Palsy. The surprise was mine when I learned to communicate with a non-verbal pre-schooler with Downs Syndrome. I didn’t know the peace that would wash over me while holding the hand of a child with Autism. I have learned that every life has value and my life is deeper when I see God’s image in each one of His children. Pretty big stuff. It has shaped me.

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The twists and turns that my journey with Jesus has taken – they take my breath away. It is easy to see how He was leading my heart as I look back. It gives me courage for the future. I am so sure that there are more bends in the road. He is leading us down a path and we can’t see the end. I want to trust Him. The lessons He has for me to learn…they are good. The road He is taking me down…will make me better. Even when I don’t understand the bends in the path, He is good. He is leading.

Recently, I was asked to share at a conference about how and why I work and live where I do. I laughed at the request. Seriously, I am the last person that should be inspiring others on knowing where God is calling them. As I prepped that talk with honest words of ending up in a place that I didn’t expect, I was reminded again that my story with its bends twists and turns probably isn’t that unique. When we make our own plan…it is just that…ours. He has so much more for us than we ever could hope or dream for. I am living His dream.

I was so desperate 7 years ago. I wanted my waiting to be over, to hold my precious daughter in my arms. What joy to look back and see how God used that time of waiting for so much more. In this season, I wonder again. What will I see with such clarity 7 years from now.

Trusting Him in the journey. Taking one bend in the road at a time.