Tuesday, June 9, 2009

On the road again

I can go from good, calm and happy to extremely worried and anxious in a moment. The kids are eating watermelon, dripping the juice all over my life and wiping their hands on the black couch. Some days I would yell and have a 28-year old temper tantrum over such a thing, but not today. Doesn't really matter.

There are words in my life that immediately cause me stress. It's what Dr. Tim Nelson would call my "walking wounded dictionary," I would suspect. Some of the words in my dictionary include: anomaly, developmental delay, aspiration, airway obstruction, blue spell, swallow study, sleep apnea, etc. Some of these words cause such a rise in me that I feel I am visibly twitching, that you could almost see what is happening in my mind with the slightest thought.

Today, I officially and cautiously add another word to that dictionary.


In speech it has to do with the ability to have what you say understood, to be clear enough for people to understand. There are a lot of knowns with Ella: her intelligence (which is normal to high), her learning patterns, her motivation for learning. But, intelligibility is where the knowns have an end. Will anyone be able to understand her words? Will her tongue catch up and grow or will she "hopefully" learn to compensate and get most words out anyway?

This is another part of the Pierre Robin Sequence/Syndrome diagnosis. However, Ella's tongue seems to be even smaller than normal. Then again, she's smaller than normal, too.

I tell you, some days there is no end to this stuff.

Ella's speech therapist, Carol, brought it up. Kindly, cautiously, quickly, yes, but it never matters how it's said. It always feels the same. The last time that word was spoken in this house caused me to go in to an internal panic for about 2 months. I never told Nick, as I thought it would break his heart. Somehow he knew, anyway. He grieved it secretly, on his own.

I am trying to stop my mind from going down the road of her sounding like a deaf person, or signing her entire adult life. I know there is nothing wrong with that. I know it. I'm not trying to sound selfish and like my kid should be excluded from that part of life, but it is possible she can avoid it. I think I'm at "maximum capacity" as is.

A couple months ago Nick was on an appointment, a rather strange one actually, that ended in a most unusual way. Somewhere between explaining what we do and why we do it, this potential client got a message. She fought telling him the words that were rolling around in her heart, her mind, but knew that a message from God is not something to keep just for you. (Just ask Jonah, although he didn't figure that one out till he was some whale's dinner. )

She spoke to Nick about things that she couldn't have known, like his fears and inadequacies. She told him about the great plans for our life and how all we have gone through, all that we do, will be for reasons that we never imagined--something we see happening already. And for the skeptic, you could write it all off as coincidence and lucky guesses. Until she mentioned Ella.

One of our biggest unspoken fears is that her tongue won't grow, but like I said, it's unspoken. She asked Nick why we didn't pray for her tongue to grow. He had no answer; he was in shock. She said that we need to pray that her "tongue be loosed." She could never have known.

I couldn't help my mind from wandering to images I had painted in my mind from the T.D. Jakes book, Woman, thou art loosed. Often times the power to be set free is in our hands, and yet, we still stay tied up, chained to our pain. And then I thought about my own prayers, and how they have dwindled off in the last years. After our big miracle with Ella's eye, I prayed less and less for healing. I guess nothing felt as urgent as blindness. And so I got lazy.

None of our therapists tricks to get her tongue to move/grow/etc. have worked. I even took her to a pediatric dentist who helps kids that are "tongue tied." I brought that poor doctor all my hopes and dreams about her speech and feeding, putting all my eggs in his basket. But, when he gave us the "good news" that her tongue was not in fact, tied down, instead of relief, I cried. I cried at the reception desk, and the whole way to the car. I took my kids to Taco Bell and let them get a drink full of High Fructose Corn Syrup. Then, we had big expensive sugar cookies from a fancy bakery. But, junk food doesn't heal all wounds.

After our good bad news from the dentist, I realized Nick's new friend was right: I have to pray for her tongue. I'm a slow learner, obviously.

It is scary to not be able to control this, to know that I have to give it up. And in the same breath, why would I want to carry this burden anyway? Stacey, Ella's OT, told me that I need to teach Ella to pray. She can say "amen" already - something she learned at dinner with my grandparents - but now we just need to intentionally teach her to say, "God, please make my tongue grow." With His power and hers, it will be enough. It has to.

Every time we are confronted with something like this, it takes me a while to mentally sort through it and prepare. I feel like we are going on a huge camping trip and I need to pack a whole lot of stuff to get ready. It's not our first time camping, but this is a new park we have not yet explored and we sold all of our supplies last summer in a yard sale. So, we are starting over. Not to mention , I absolutely hate camping.

In real life and in my analogy.

And so once again I find myself, sitting at the heals of The Great Physician, asking for what the world says is improbable. I have faith she will be healed. I know someday that her tongue will be loosed and she will talk to her friends on the phone for hours. She'll probably have a $500 cell phone bill her first month having a phone. We will probably ground her and make her work to pay it off, doing filing in our office and volunteering her to spend her weekends for the next 3 months at the homeless shelter, so she sees how fortunate she is. Then, we'll tell her about how it is a privilege to have a cell phone, not a right and that we will have to seriously consider if we will give it back to her or not. She will yell at us in her loudest, most intelligible teenage voice, about how it's not fair.

All the while, laughing to ourselves, knowing how fortunate we are for her words and screams, more than any other parent before.

**If you would be so kind, I ask that you pray for this. We are praying specifically that her tongue will be loosed; that it will grow. That this will be all that she needs to help her be able to eat normally and safely and talk clearly. Thanks. :)**


Liz said...

I love that last big paragraph about the $500 cell phone bill. I'll pray that you get one of those b/c of Ella someday! (o;

mama love. said...

Cute blog! Thanks for your comment on mine. :o)

Prayers for improved speech and loose tongue!

mama love. said...

Oh, neat! How'd you get the "links" on the side bar? I'd love to have that for my posts I tag!

Mi ch ele said...

*praying for Ella*
*praying for Angie*
*praying for Nick*
*praying for Owen*

sending lots of love and good thoughts your way!

I realize it is NO comparison, but my nephew has speech issues. No one (not even myself) can understand him. My wonderful (sarcasm) sister still to this day refuses to get him speech therapy. She felt it would follow him through his life and people would make fun of him knowing he had speech therapy. No, he is now 12 and still no one can understand him. She still refuses to see it, because they who are around him the most understand everything he is saying so she thinks his speech is fine... she still refuses to help him.

My point to that is that YOU are trying. YOU will succeed! You will find an answer and God will figure things out for you. It might take time to work, but those who love Ella will always understand her. And in the end it will be those who are close to her that need to understand her. You just have to have faith. :o)


ps- i hate camping too!

crystal said...

I will be sure to pray for ella!I know for me I would get fearful because I didnt have any answers to what was going on with Lillie!I would wonder if she was ever going to grow and why Lillie was not growing!The only thing that Gave me comfort and got me through was knowing that God created Lillie and knowing God created her for his purpose and that he has a perfect plan in creating Lillie the way he has!It gives me peace and I trust knowing that Lillie is in his hands!
Ella is so presious and God has a perfect plan and your sweet presious daughter is part of his plan for your family!I will be praying with you that Ella's little tonge will grow the way it needs to grow in order for her to thrive in the way her body needs to be thriving!I wanted to encourage you with this quote by a unknown person:)As you wait for answers from doctors or wait for Ella to do certain things with her tonge growing,body,speech,growing ext!I found it encourageing to know that Iam not just going through something terrible but that it is not in vain and that God has a plan for each one of you!we may not see what Gods Doing and we may not see the end of it all!Its such a blessing to know we have a God who cares for every little thing in our lifes and that we dont carry the burden of having a child who is sick alone but that God helps us through and carrys this load with us as we seek him through our trials:)Hang in there girl and I will be praying for you and your family!thank you for sharing your feelings and your familys journey through this life altering medical condition!

Waiting on God isn't about the suspension of meaning and purpose. It's a part of the meaning and purpose that God has brought into my life. Waiting on God isn't to be viewed as an obstruction in the way of the plan. Waiting is an essential part of the plan. For the child of God, Waiting isn't simply about what I"ll receive at the end of my wait. No,waiting is much more purposeful, efficient, and practical than that. Waiting is fundamentally about what I"ll become as I wait.God is using the wait to do in and through me exactly what he promised. Through the wait he's changing me. By the means of the wait he's altering the fabric of my thoughts and desires. Through the wait he's causing me to see and experience new things about him and his kingdom.And all of this sharpens me, enabling me to be a more useful tool in his redemptive hands."

Amanda said...

thanks for your comment on my blog! your little boy is so cute! luv your blog background by the way

mama love. said...

Thanks for the tip!

janefilms said...

hi I'm new here and trying to catch up, but I am praying for a loosed tongue for Ella, and knowing that it is Already done. The cell phone bill's gonna be a doosey!