Tuesday, September 20, 2016

We are Speechless

When I wrote my post on Loving a Child Who Cannot Speak I had just exited a really, truly traumatizing week of placing our daughter in a local Kindergarten class and when I need to vent and process I write. So, I wrote. 

And maybe it was because the new tv show Speechless landed on the same week. I don't know. But the post blew up. Ya'll I'm just a regular, every day person, introverted and content in my little life. So when I checked my post stats, which I rarely even do,  I ran down to my husband and said "I'm bad at math. Is this really saying over 400,000 views? Maybe Blogger messed up its stats."

And then I went...

"Wait. People read my story? People outside of my little adoption community? Crap. Now everyone knows my struggles. Did someone comment 'Blimey'? They're not from the U.S!
What have I done???"

It's all good. I ended up laughing and answering over one hundred comments and emails and feeling a whole lot more normal in my every day life, a lot less alone. All of you helped me feel like one of you. Thank you for reaching out to me. I found a community of moms who knows exactly what my pain feels like. You empowered me to use my voice.

So  I processed all week long. What should I do? Because I'm that girl who still dreams of this world changing. What if my voice can help change it?

How about a weekly post on living the "Speechless" life? Feel free to join me. Let's tell the world how this is. This is our life and being silent and hiding doesn't really change the world. Anyone want to spark a change with me? 

Let's do this!

Here we go:
I had so many lovely people offer advice for our family. I appreciate it and I am researching many things that were mentioned to me. The thing is, we are still learning about our sweet daughter. We have not had the honor of being her mom and dad since her birth. She has been with us a short period of her life. Much trauma, abuse and neglect have marked her life. Please don't believe we are not trying to help her find a voice, a way to communicate. We are coming from behind and working to catch up. In fact, when we were given the privilege of becoming her parents we did not have all the facts. We did not know she could not talk until the moment she literally collapsed in our arms and we were left trying to figure out what was going on. We had 24 hours to give her back or move forward. I wrote about those hours for the blog No Hands But Ours. It has taken us a while to realize that she in fact is nonverbal. 

To those of you who have walked this road I know you get this. It takes time for a parent to come to grips with reality. We hope for so long, we try so many things before the grief sets in and we release our dreams and fight for new dreams. It's a process and I choose to give myself grace for the time it took us to come around and see that our sweet girl is not talking. 

Now we are looking for ways to help her communicate. We tried sign language and while we haven't 100% given up on that we have realized she is telling us "no" to that method at this point in time. We are working with the school on finding a device that works for her. It's a layered complication because she has multiple impairments, not the least of which is being blind. Many devices require vision. Like in the show Speechless, many have the options of screens and choosing words. At this point, we don't have that. But we aren't quitting. We will find the one thing that she chooses for her communication. We won't stop until she can communicate her needs to us. So, I ask for your grace and understanding while we figure this out. 

In the show Maya is a great depiction of what all of us become as parents of kids with special needs. Sure, it's exaggerated for tv and entertainment. Ahem, but maybe not by much. Her crash course in human dignity may or may not have resembled something I just said the other day. "Isn't it basic humanity to know not to place a young child in an 'extended time out' for hours of her day? Or to use a room that is not ventilated like the General Education rooms or air conditioned for that time out?" 

Schools may have lawyers and loopholes. 
My daughter has me. 

Humans take note: 
Dignity and common sense can go a long way. 

Every day we wake up and we go to battle for our rights, for her rights. 

Do you realize how that sounds? Your rights are given to you each morning. Ours are not. To have the exact same rights that you are given we have to beg, we have to file lawsuits, we have to be labeled as the "crazy mom." 

And so it goes. Day in and day out. 
Our girl never quits and she teaches us to be brave and resilient. 
We don't quit. 

I'll be posting regularly about this life with a child who is nonverbal. So check back. I'd love to tell you that every "Thursday" will be the post, but well.....special needs are unpredictable. I'm working on that. 

Be brave today, Friends. 
How about we change the world together?

Monday, September 12, 2016

Loving A Child Who Cannot Speak

I have a daughter and she is nonverbal. It is one of the most difficult portions of my life. When the tears fall it becomes a guessing game. When we miss the mark of the needs the tears become screams. The frustration that mounts for everyone is intense. That screaming can last for what feels like an eternity. What ends it? Her resignation. She has no choice but to quit. Nobody is answering her need. Because we don't even know what it is.

Imagine all of your needs every single day and now imagine that you can never, not even once, tell one single person what you need. What a horrifying thing. Those dreams where you are being chased and you are scared and you try to scream for help but nothing comes out of your throat? That is her world. And we, as her parents, watch on in sheer pain and frustration. Just sign it!!! Just try to say something. Anything.

And she does. Every single day this brave soul yells out, makes sounds, tries. Not a single day goes by when she doesn't try. And her trying? It shatters me. I am her Mama after all and mamas makes things better. Don't we? Is there anything else that better describes what we do? We kiss bruises and skinned knees. We are the makers of magic and all wounds are healed by our touch.

But Me? I.can't.fix.this. 

I can't wipe away this pain for her. And the sheer terror I face every day at the thought that she can't tell me what is wrong, who hurt her, what makes her happy and that I will get it wrong is something that breaks away pieces of me every single day. 

Am I failing? No. I am not. 

Is she failing? No. Never.

It is what it is.

But you need to know how this hurts. There are people in your life who are going through this never ending grief. And they have learned how to blend in. They know how to disappear when they can't blend in and after a few times you stop noticing their absence. But they don't. They wear the guilt of escaping on their shoulders. The isolation adds to their pain. But they simply cannot take one more raised eyebrow from a stranger. Every day they are at the brink of breaking. So give them grace. 

Imagine sending your child to school or church and hoping and praying that nothing goes wrong. Imagine the stress of knowing that if something is wrong you, as the mom, will never know it. Wrongs could be committed at any moment and you won't know. The immense stress of wondering if you have chosen the right people to trust is never ending. If you are not with your child every waking minute, then that stress is with you. 

We parents of children who are nonverbal? We have every single one of us had this happen. Someone was cruel to our child. Someone was unfeeling. Someone committed a serious wrong to our child. And we caught it. Not because our child told us, but because we are these hovering parents because we must be. And knowing that we caught it strikes terror in our souls just at the moment we begin to relax. There is no relaxing. Not for us. Not now, not ever. 

And then you return home and snuggle your child and pull them close and tell them you love them. And you know you will never hear those words. And while they will snuggle you back you also know that time is precious and even in the middle of that loving moment the groaning may begin. Maybe you hugged too hard? Maybe they are uncomfortable? And it begins yet again.

You start guessing and you start getting it wrong. And at the end of the day everyone is hoping that tomorrow will be the day. Please let tomorrow be the day a grunt becomes a vowel. Let the groan become a word. Let the slapping become a sign. 

And it doesn't. Because this is permanent. It isn't going to go away. This is permanent. 
This frustration.
This fear.
This aching.
This grief.
It is a cycle. But it is permanent. 

And she never quits. This brave one? She owns me heart and soul.

So we try again. We get up and face the day. We encourage the yelling. Speak to us! Try again!! We smile with the laughter. We cringe with the grimace and hold out for that elusive hope. We learn that communication is more than words. And we learn to grant ourselves and those around us grace. And we learn how to fight better and smarter. We learn to change the laws, change the world. We learn to stand against discrimination.  And above all we know that love takes many forms. Love requires no words. It is an intangible, nonverbal force. 

And intangible, nonverbal?
That's our playground, ya'll. We own this.
We've got this. 

**I am humbled by the response and the shares this post has received. Thank you to everyone sharing this post. If you would like to reach out please contact me at keh1027@gmail.com**

Monday, April 25, 2016

The Girl Who Sits On My Shoulder

She needs you.
There is no light in her world.
She sits and waits and poses for the camera as someone takes one more picture to add to her file. They are all hoping someone will notice her and be moved to bring her into their family.

She needs to be a daughter, and not an orphan.
Her face needs to be kissed by a mother.
A daddy needs to protect her from all harm.
A momma needs to fall in love with a picture and a daddy needs to stand for her and be courageous enough to say yes.

She weighs on my heart all day long, every day.
As it turns out, I am human. I am just like you every day.
I am tired. I am worn out. I am scared that I get this parenting thing more wrong than the times I get it right.
Today my heart cannot rise to do this again. And I feel that weight. I carry it all day long.

And yet she is the girl who sits on my shoulder.
Day in and day out I pray for her.
I ask God to whisper her name into the heart of a mother and a father somewhere.
And she finds me in my dreams. .

Justice does not leave her an orphan.
Love does not pass by her picture.
The God who asks us to be the one who stops, who cares, who loves, is showing her to us today.

She is more than our fears.
She is more than her fears.
She is more than her disabilities.
She is Calina.
And Calina needs a yes today.

Please say yes.

Tuesday, January 19, 2016

He Danced With Me

We are coming up on our one year post placement meeting with our social worker. When she emailed me to make the appointment I was shocked. How has it already been nearly a year? It feels like last week. Truly.

Looking back on this year I don't even know how to put it to words. This is the year that God brought me to the very end of myself and asked me to keep walking. This is the year when everything I thought I had figured out about my life, my heart, my soul, fell to pieces. It was, quite frankly, my undoing. I was not strong enough to do this.

Last February I was handed one tiny, fragile eleven pound four year old. She called me "Mama," on the very first day, and then nearly collapsed for days to come. She couldn't walk, couldn't drink, couldn't crawl. And I thought God was asking too much. 

And then God handed me another four year old. I had loved her for years, watched her video a million times. I knew her, but then I didn't. She wasn't the same. We will never know if or when something happened to her. But she simply couldn't walk, talk, eat or drink. My heart was weeping as I was trying to hold it together while trying to bond with a daughter who could communicate nothing but growls back to me. 

I never thought of myself as weak. Until this year. I crumbled. Do not believe the lie that God will never give you too much. He does and He will. And it was too much. For the first time in my life I dealt with anxiety. I had to lift her up and tell a consulate worker that I knew this was likely all she would become. I listened to the words "wheelchair, degenerative disease, short lifespan, nonverbal." And it was too much. In the moment I looked strong, put together, holding my own. But I wasn't. I came home and days later found my emotions spilling out at all the wrong times. I have anxiety attacks that leave me shivering on the ground, teeth chattering, trying to catch a breath. 

And yet, one year later as I look back I would describe this year as the year that He danced with me. I broke in ways I never thought possible, but I felt His presence so deeply, so constantly, so abundantly that I never feared for tomorrow. I would say to him "Are you sure? I don't know that I can do this today. Help me, Jesus, because I am falling." This was the year that I was able to admit my limit, my own deep weakness and allow Him to guide me completely. The only way to describe it is to say that He took my hands and led me through a glorious, trembling dance of one year of tragic beauty.

I simply awoke in the mornings and knew deep within my soul that although the gates of hell were knocking on our doors, He was standing in my place. And I hid. I hid behind Him. To society, I am sure it seemed I was cowardly, but the truth is that I was hiding in Him. He was taking those moments and healing our family. He took tragedy after tragedy and whispered beauty back to me. He made me trust and truly believe that this was all going to be okay, regardless of the outcome. He shielded me. 

When everyone told us that what we should expect from our daughters was next to nothing, He whispered hope back to my heart. I hid and I believed in His impossibilities. I heard doctors say, "She will need a wheelchair. She will never walk." And I walked out and listened to Him, the One Who Redeems. As I tucked her into her carseat, I took her face into my hands and I said to her, "You can do this. I know you can. You will walk." 

And she did. She walked. We returned months later and she jumped in front of that same doctor. And smiles broke the faces that once offered me tissues.

Everyone said she couldn't talk. And I prayed for her to prove everyone wrong. I prayed for God to let me hear one word as His gift to me, just to let me hear, "Mama." And each night as I tucked her in I repeated one phrase to her, "You are beautiful. You are loved. You are safe. You can do this. I believe in you." And in a whisper even quieter, because it was such a ridiculous belief that I was afraid to even speak it, but yet, I believed it just enough to whisper right into her ear, "I believe you will talk. You can do this, Ellie."

And one day she took my face in her hands, kissed my lips, and said, "Mama."

I have watched miracle after miracle this year. I have seen and sat long in dark moments. One year ago I was terrified beyond my imagination. I took one moment at a time. I granted kisses when I felt fearful. I gave hugs when they didn't feel natural. I have fed so many spoonfuls of food that I couldn't possibly count them. I have lost my temper more than my fair share of times. Days were hard, but the year passed me by so quickly.

And I hardly remember anything but the beauty. Was it hard? Oh my stars, yes. Was it too hard? Yes, it was. But He came and led me into beauty. We have danced on ashes, my Friends. God on high, saw my need, and stepped down to take over when it was too much. And it was then that I saw His glory, His mercy, His love. In the middle of a world gone mad, He danced with me.