It's Music {Victories in Speech}

We've had some recent change in our home in the last couple of weeks.  We've heard speech sounds we've never heard before.  For the past eighteen months, Hannah has worked so incredibly hard at making two particular speech sounds.  It has been tedious, difficult work.  Sometimes she was up for the challenge and fought hard to do what was asked.  Other times, she'd had enough, shut down, and just plain gave up.  Sometimes the work was fun and others it was a chore.  We rode the rollercoaster of having glimpses of progress, only to find ourselves just weeks later shedding tears in what felt like defeat.  We heard tough diagnosis suggestions and sought counsel from others who know more than we do.  We went at speech therapy with gusto and other times we barely were able to drag our feet to yet another session.  Nothing she accomplishes is easy.

But then.  Then, out of the blue, as she twirled about in the kitchen one sunshining afternoon, I heard it.  One of the sounds.  Not separated from the rest of the word.  Not whispered as we'd been working with it in the past.  No.  It was voiced and it was connected to the word she was saying and I fully understood it.  And I heard it!  I was stunned.  We've recently begun seeing a new speech therapist and we had speech later that day. I expressed to her this sudden new sound I was hearing.  She probed it a bit in their session and Hannah came home singing a sweet little song fully loaded with words beginning and ending with her new sound.  And she sang it to me.  And I heard it.  The whole song.  With all the syllables and all the sounds.  I was over the moon and I have the phone full of video proof to fully document my joy.  Her surgery in the fall?  She's finally healing, she's finally figuring out what to do with that new anatomy, and she's using it!

Then, about a week later, in about the same fashion, out came sound number two!  No longer whispered and separated fully from the word after it as we'd been working on.  It was voiced, it was loud, it was clear, and I understood.  Again, we showed off to our new therapist and again, she came home singing a sweet song chock full of her new sound.  It was sweet, precious, wonderful music to my ears.

Eighteen months.  Eighteen months of hard, hard labor with  no evident fruit.  I spent those eighteen months questioning and doubting so many things.  Were we approaching therapy the right way, was she ready to tackle what we were asking of her, was the diagnosis correct, was the surgery effective, should we go to Cincinnati for further opinions, should we schedule more medical procedures to ensure everything is functioning as it should?  Often I felt like a dog chasing its tail.  Often I wanted to give up, walk away from therapy for a while, give her more time to mature.  And that's just how I felt.  I wasn't the one in the therapy room working so, so very hard.  I wasn't the one fighting the frustration of being misunderstood (or entirely not understood).  I know she wanted to give up.  And sometimes she did.  So many times it felt as though time was being wasted, progress wasn't being made, or that our attempts were futile.  Yet, God took that fight and has given her fruit.

As we've been truly relishing her victory this week in our home, I've been reminded of the Father and His relentless pursuit of our hearts.  He starts with us gently at first, like we did in Hannah's therapy.  Slow and steady.  An upbeat and tender approach. Then He digs a little deeper, pushes a little harder and starts trying to chip away at walls built up, entrenched sinful habits, and straying hearts and minds.  Often He is met with resistance.  Sometimes we build the walls taller and thicker.  At times the work may feel like drudgery and no progress or movement can be seen.  We may even backslide and seemingly erase in an instant what took weeks to accomplish.  But then He starts to hear it, faint, far off in the distance, almost hardly audible.  The quietest of "yeses."  Yes to Him, yes to His love, yes to what only He can offer.  Just a glimmer.  Tiny signs of fruit from His labor to redeem us.  And then one day, out of the blue, as only God could appoint, the walls are shattered, the straying hearts turn and as clear as the clearest of nights we utter the words, "YES, LORD."  And the work, His work, was worth the effort, worth the pursuit, worth the shed tears, the lost sleep, and the desperate prayers.  He didn't give up on us.  He pursued us and brought us to victory.

May I ever be reminded in Hannah's precious victory this week that pursuit is worth it, that victory will come in His time, and that hard doesn't mean we're outside His will.  Redemption is His and His alone to claim and He has a glorious plan as He reveals it to us. My heart sings for joy this week.  I heard my daughter utter two brand new speech sounds.  May she one day create even more music as she utters a "yes" to Him.

 

"Sing to him; sing praises to him; tell of all his wondrous works!"

~1 Chronicles 16:9~

Finding a Heritage {Celebrating Hannah's 4th Birthday}

This time of year is birthday season in our home.  Four children, four birthdays celebrated in the span of approximately four weeks.  A time for celebrating.  A time for extra special treats.  This is also the season for remembering, for the "what it was like when I was in your belly" questions to arise.  It's a sweet time of reminiscing and looking through old photographs.

It's something that is starkly lacking for Hannah.  The photos are few, the baby book begins at age two, and the coveted "in your belly photo" is glaringly missing.  My mama hands feel so empty, yet they yearn to offer something.

I cannot offer anything tangible, so I offer what I can with my words.  I use my voice to weave the story, her story, for her.  Her only knowledge of her beginning is what my words have to offer.  I find that as I weave the story, as I write the heritage she will carry in her heart, I am conflicted.  The burden for truth is heavy.  The silence is deafening.  There's the story I want to weave....and the story  I must weave, the one based in truth.

The story I want to tell beats hard in my chest.   I want to cup her precious cheeks in my hands and look deep into her eyes and tell her every single detail of her beginning, to paint a picture in her mind where no detail is forgotten, no fallen tear overlooked.  I want her to be able to see the sights, smell the smells, hear the sounds, and feel the soothing touch of her birth mother's hand.

But those are details I cannot offer.  My daughter deserves truth. And so in this season of remembering the truth stumbles out.  Broken and jumbled, like a stream falling over the rocky bed of a brook, disjointed and groping, finding the words and organizing the thoughts.  The truth is.....there is so much I don't know.  I don't know what her biological mother was thinking or feeling in those awful moments.  I don't know what drove her heart wrenching decision.  I don't know the in's and outs or the whys or what if's.  I just simply don't know.

And the not knowing falls like a loud thud upon our time of celebration, of remembering, of sweet reminiscing.  It hurts, the not knowing, the empty hands, the having nothing to offer, so my heart turns inward and picks up the pen of indelible ink and begins writing her heritage for her.  This is what I do know and this is what I will share.  This is what I have to offer.

My most precious, sweet Hannah,

There are so many things I do not know about your start on this earth.  I long to tell you the details of your birth and I want so badly to offer you photos of your form wrapped safely inside your mother's womb.  I want to tell you the story of how you came to be part of our family, but there is one half of that story I will never know, a puzzle piece that will always be lacking.  So instead of weaving a story about something I do not know, I will tell you all the things I do know.

I do know that you have a mother and a father here on this earth that absolutely adore you and are crazy in love with your robust laughter and tip-toe skip-hopping through each day.  I do know that your siblings fight over who you loved first when you came home.  I know you want nothing more than to grow up and be just like Gracie.  In fact, you speak often of just simply living with her forever.  I know that you like noodles and rice and have an insatiable hunger for sweets.  I know that cake isn't your thing, but icing sure is wonderful.  I know you've fought hard for everything you have gained in the short two years you have been home.  You are a voracious reader and so very eager to learn.  You skip from 13 to 18 every time you try to count to 20.  Your Lovie is your most cherished of possessions and has traveled the globe,  visited the OR multiple times, sat in the dental chair, fought hard through speech therapy sessions, and visited countless doctors' offices by your side. Yellow is your favorite color and ice cream is better with sprinkles.  A cup of ramen wins the prize over PBJ for lunch every single time and water almost always beats milk.  I know that choices are agonizingly difficult for you and it's best to keep it limited to two or three options.  You are independent and strong and like your voice (and opinion) to be heard. Your eyes beam with light when your mouth smiles and I see you thinking deep thoughts in the dark pools of your almond-shaped, brown eyes.  I know that you are my daughter and your heritage is what I humbly have to offer you as your mother.

And yet, all that still seems to be not enough and so I look deeper still.    You see, there is a Father.  Your Father.  And His heritage?  He wants to make it yours.  His story?  It's broken and messy.  Painful and hard, even ugly at times.  No earthly eyes to look into that reflected His own.  A humble beginning, a broken past, a birth that appeared a scandal.  A family that made Him their own, gave Him all they could give, and began to weave the story.  His story.  And then the cross.  Gruesome and painful, tragic and so very devastating.  Darkness washes over and it seems all hope is lost.  The heritage is erased and the pen has stopped writing.  But it wasn't so.  The sun rose on the third day and the plan for redemption was made manifest.  What appeared so broken and so empty, so lacking and final, was God's greatest plan for human redemption.  Beauty from ashes.  

So my pen writes on, my story weaving continues.  Your heritage is that you are mine, yet better still, you are His.  He has a plan for you, one of deep and overwhelming redemption and joy.  Only He can fill the God sized gaps in your heart.  May my love somehow point you always toward His, that you may know His heritage and one day make it your own.

Love,

Mama

And so birthday season winds down in our home and the questions lay to rest for a while.  My heart and mind will never be far from the mother in China who gave me my child.  My heart's deepest cry is that she may also know and share the same heritage Hannah may have as a child of God.  May restoration be found in a heritage that is known.  The heritage that only He can give.

"he saved us, not because of works done by us in righteousness, but according to his own mercy, by the washing of regeneration and renewal of the Holy Spirit, whom he poured out on us richly through Jesus Christ our Savior, so that being justified by his grace we might become heirs according to the hope of eternal life."

~Titus 3:5-7~

We Know the Drill {P-Flap Surgery}

We will celebrate twenty-one months home this Saturday.  We will celebrate the day in the hospital.  Again.  Our fifth tour of the OR in just twenty-one months with us.  Far more than she should have to endure.  Far more than I've endured in my full adult life and she's not yet even four.  She proves to me time and again just why she is the fighter that she is.  She has to be.  She works hard for every word said, every syllable understood, every point made.  It's work.  Hard work.  And yet she struggles on with tremendous amounts of joy and zest.  She amazes and humbles me daily.  While I can easily feel the weight of five trips for surgery, five periods of recovery, five rounds of pain I cannot fathom, she teaches me about hope.  Yes, she's gone five times.  Yes, it is difficult for all of us.  But in it, she's walked it with us.  Every step we've done together, in the safety and security of family and I believe family is what has allowed her to boldly endure each and every time.

We will place our sweet girl back into the hands of our surgeon hero, Dr. L, on Friday of this week.  She will have a procedure called a pharyngeal flap (or P-flap).  The goal of this surgery is to work on the soft palate, adding length.  This should allow Hannah to better control air flow between her mouth and nasal cavity, thus allowing her to better control air and air pressure needed for correct speech sounds.  She's generally a bit younger than a typical p-flap candidate, but it has been fairly obvious it would be needed for some time.  She works so hard and tries to do all the speech therapists demand of her, yet she just doesn't have the anatomical structure to accomplish much of what is asked of her.  It is our prayer this surgery will provide her with what she needs and allow her to continue to grow and blossom, especially allowing her to be better understood by those outside our home.  We are told the results from this procedure can be quite dramatic.  We pray this might be the case for our sweet girl.

So, here we are again.  Soft foods purchased.  Pain meds in stock.  Arrangements made for the big kids.  School adjustments complete.  Bags packed.  Off we go.  Again.  We know our girl better now.  We know she's tough.  She's resilient.  She's way braver than I could ever be.  We're ready to tackle this one and we know God will meet us in the ways we have asked and especially in the ways we didn't even know to ask.  We ask you to cover us in prayer.  While we know the drill, it never gets easier.

Wonderful-Unspeakable-Goodness {18 Months Home}

Eighteen months ago we covered half of the earth to return home--suddenly now a family of six.  God had started a tremendous work in all of us that day.  Something unspeakable.  Something hard. Something messy.  Something so unbelievably good.  Something I simply cannot put words to.  In those eighteen months we have changed.  All of us.  We are not the terrified new family that walked through our front door eighteen months ago.  We know who we are and we know more deeply the One who created us and has worked this miracle-unspeakable-wonderful thing in and through us the past eighteen months.

A family of six for eighteen months.  It is only by His powerful-unspeakable-wonderful work that we are here.  We bask in His love and goodness to us through this weaving together.  Only His creativity and imagination could let this be what it is.

Blessed beyond belief.

The Bravest

This girl?  This little pint sized dynamo?  She went to speech camp throughout the month of July (two days per week for two hours at a time over the course of three weeks).  I was admittedly skeptical.  I feared the separation issue.  I doubted there would be progress.  I just simply hoped it would help speech therapy to be fun again.  Perhaps awaken her spark to work hard at it.  Maybe help me sort through my own set of "issues" surrounding the therapy, give me a little insight, shed some much needed light.

How did she do?  Nailed it.  Rocked it.  Was the coveted pea sized participant at camp.  All the girls wanted to take her home.  Mama?  Totally proud.....and a little surprised!

Did she cry?  A little.  Did she act like she wanted to go and then baulk when we got there?  Sometimes.  Overall did she enjoy it?  I think so.  Would we do it again?  Yes.  It was a worthy investment.  The progress was limited, but the intensity and frequency of this camp did allow us to see a tiny glimpse of fruit from her labor in speech therapy.  I had a conversation with the director of the camp on the second to last day and it was likely the most encouraging conversation I've had about Hannah and her progress in speech.  Everything she said made sense and assured me we are headed in the right direction.  Hannah is a fighter and she is trying so very hard to conquer all these tough speech sounds, but her palate is just not allowing her to do all that she needs to do.  Despite the difficulty, rather than grow frustrated, Hannah just battled through each session she had at camp and tried with all her might to do what was asked of her.  That is all a Mama can ask!  I am so proud of her and all she accomplished at speech camp this summer.  It was long anticipated and definitely a good thing for her at this juncture.

And now?  It's creeping into August.  We went back to school today in the Burri home.  Summer is drawing to a close and while we spent the summer busy, we're back into full throttle.  Ballet starts back up, AWANA resumes classes, our co-op is back in session, and it is time to dive back into "regular" speech therapy and all things medical for Hannah.  The break in June was good enough to make me consider it again next summer for all of us. 

As we enter the first week of August, we will find ourselves back in the operating room for Hannah.  I've been a bit in denial about this upcoming surgery since June.  I just don't want to put her through all of this and honestly, up until my conversation with the speech camp director, I was doubting a bit about the path we were on.  I have peace now and our fabulous Dr. L has smoothed my ruffled feathers more than once and reassured me that what we are doing is necessary and of utmost benefit to Hannah in the long run.  So we press forward.  Another set of tubes, a tonsillectomy, and some photos of her vocal chords await us next week.  We welcome your prayers.  We know she'll do great.  Why?  Because she's proved to us time and again that she's the bravest.

Resting

It has been a while since my last post in late April.  I'm taking my trusting and resting declaration quite seriously and it has been so needed--and so wonderful.  When you have a child with a unique set of medical needs, it is really easy for it to consume you.  All of you.  It sort of slowly creeps in and suddenly you find yourself in this place where it is all you think about, all you talk about, and all that occupies your thoughts.  It gets hard to see up or down, left or right.  It becomes difficult to make decisions or to put one foot in front of the other.  The water gets incredibly muddy.

Medically speaking, the months of April and May were some of the most challenging months we've dealt with--for me most of all.  Tough decisions.  Feeling lost at times.  Not knowing where to turn for information, support, or to ask questions.  Wondering if the right thing is being done at the right time.  I cried a lot.  I prayed a lot.  I doubted a lot and yes, I let worry overcome me far too many times.  I felt crippled too often, completely unable to make any movement.

Things just sort of worked out for us to take all of the month of June off from all things medical.  Of course, I say, "just sort of worked out" knowing full well this time of rest was orchestrated for us by a Father who saw my distress.  We had a regular dental appointment and one appointment for a second opinion during June.  That's it.  No therapy, no follow up appointments, no one telling me something new or adding on a new diagnosis.  She needed it.  I needed it.  The big kids needed it.  We've just had summer days stretching before us with our most pressing and important appointment being the planned trip to the newest playground in town and when to splash in the wading pool outside.  Glorious.

We may be 17 months into this journey, but I still feel very much the rookie.  I don't know how to advocate without getting emotional.  I struggle to weed through medical opinions to figure out what is really necessary and how pressing issues really are.  Are they really big problems?  Or are they just really big inside my head?  Where I once used to put full trust into the hands of the doctors we work with, I find myself more frequently second guessing, doubting, or going back for additional reassurance.

I've realized in the past couple of months of hard medical stuff that I am incredibly passionate.  I am passionate about my daughter.  I am passionate about her needs and her story.  And in that passion I can become easily frustrated, distraught, and angry with professionals who just don't seem to "get it."  I forget this is daily life for me, but it isn't for them.  I want them to "get it" and "get it" fast.  I see them as professionals and I don't want to be teaching them, but that's what I often find myself doing.  And then I doubt myself and what I'm teaching.  They question me or challenge me and the doubt comes back.  It created a cycle of doubt, fear, worry, anger, frustration, anxiety....  It just wasn't good.

The reality is, she's my daughter...by birth or adoption...God ordained me to be her Mom and in that calling, He equipped me to know her better than anyone else.  So in my resting, I'm drawing myself back to that basic concept.  God called me to be her mom.  He knows just what I need to mother her, to make decisions for her, and advocate for her.  Though I feel horribly inadequate, I'm the one He saw fit to do this job.  So I will do it.  With boldness and courage, knowing He has my back and so long as our decisions are based on His leading, they will always be the right ones.

I have loved our month free from the medical and therapeutic, but it is soon time to get back in the saddle again. And big things are coming.  More surgery this summer and another procedure on the horizon by the end of the year.  None of it easy.  None of it pain free.  None of it without a cost, side effects, or risks.  But we rest knowing we are with the Lord, right where He wants us, right where He needs her. He is a good, good Father.  My mothering will fall short, but His Fathering is always perfect.  So we rest.  Right there.  In His goodness and perfection.  We may traverse hard, but we won't climb the mountains alone.

 "No, in all these things we are more than conquerors through Him who loved us."

~Romans 8:37~

It's Complicated {Trusting and Resting}

Today Hannah and I spent the entire morning and most of the afternoon visiting audiology, ENT, and plastic surgery.  It was a long day and would have been difficult for any adult to endure.  Hannah attacked it like a champion.  I couldn't have been more proud of her and the way she handled all that was thrown at her today.  It was a lot.

My brain is to capacity and swarming to overflowing.  We went seeking answers to a few things.  I was hopeful.  So hopeful.  Maybe too hopeful.  There is this deep longing within me to know...really know the answers to these questions.  I want to know so I can go about the business of fixing. Sadly, after our day of appointments there is possibly less knowing than there was prior.  All I can say right now is it's complicated.

Yes, I am disappointed and frustrated, but I am slowly beginning to see the bigger lesson there is in all of this for me.  It isn't about knowing.  It isn't about fixing.  It is about trusting.  Fully trusting to the point of complete peace and true, soul nourishing rest.  I have things to learn here.  This thing about trusting and resting.

I don't need to know.  I don't need to fix.  Because my hope rests in the Almighty, All Knowing Father.  He is her Creator.  He knows the answers I don't.  He knows the fixing that is needed and when and how it will come and while there may be things He is developing in Hannah in and through this, it is very obvious He is after my fully trusting, resting heart. 

It's complicated.  The answers aren't right there.  The answers aren't coming easily or naturally and I'm confused about what to do.  So I will seek Him.  I will seek to trust and just simply rest and let my Father be the One to worry about knowing and the business of fixing.

I didn't get answers today, but I did get to spend a whole day with my girl.  And you know what?  She's pretty great.  For now, I will just be her Mama and leave the complicated stuff to our Father.  It seems He is in the business of knowing and fixing and He is deserving of every inch of my fully trusting Mama heart.