Friday, July 29, 2016

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.

Wednesday, July 6, 2016


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 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~