Thursday, February 9, 2017

Day 9 - Mary-Kate Martens

When words fail...

I've been sitting here a while, trying to put into words something meaningful and relevant from what I'm living out every day.  Every now and then I pull together a piece that I think is worthy of sharing.  But in recent months...years, really...I've found myself writing the most incredibly profound things in my mind...while I'm driving or showering or trying to sleep.  When I'm at the keyboard?  Crickets.  Especially when it comes to these magnificent stories of adoption our family has been given.

After enthusiastically volunteering to once again write for this year's "28 Days" series, I seriously considered taking a pass, convincing myself that, quite possibly, I had nothing to say that anyone needed to hear.  You know.  One of those situations where it sounds like a fantastic idea until it comes time to execute? But that Divine nudge. It just wouldn't go away.  So, after much pecking and backspacing, here is my offering.

You might have read about my daughter, Mary-Kate, here over the last couple of years.  In 2015, I wrote from herhospital bedside as she recovered from surgery.  We had just returned from China at the beginning of November.  She had received a palliative surgery in China, and, at 20 months old and the size of a 9 month old infant, her blue lips and fingers told us long before her first exam here at home that she was long overdue for her full repair.  What I didn't know just four short days after that surgery was that it would be a very long eventful month. 

first cardiology exam
november 2014

february 2015

Last year I shared a little more about what I had learned from the whole surgery and hospital stay aspect and, also, some about the effects of trauma on our baby girl and her development, specifically her speech.  What I didn't share is that we knew she was positive for DiGeorge Syndrome.  We'd found out a few weeks after being discharged from the hospital from one last round of blood tests run before pulling her lines.  I'd resisted a genetic panel up to that point, but I finally decided I would just have it done while they had access.

march 2015

I think I was so resistant to the idea of genetic testing because I didn't want her to be labeled.  By family. By friends.  By schools.  DiGeorge Syndrome, also known as 22q Deletion, can be a very scary thing.  I'd been advised by the first cardiologist we saw that testing for it wasn't really necessary or going to change anything.  That we would treat her heart defect the same.  That she didn't seem to show any other serious signs of the syndrome that would cause concern or require treatment.  If I'm completely honest, though, I will admit that I was reacting more than a little to what a family member had said upon seeing her referral photo...that she suspected a syndrome of some sort and asked if we were sure we wanted to adopt a child that might have serious health issues beyond a heart defect.  I wanted to stick my head in the proverbial sand and just move on.  What I didn't do is listen to that little voice in the back of my mind that reminded me information is power.  I should do that more often.  That voice of mine is smarter than I give her credit for sometimes.

referral photo

So here we are another year later, and, as far as her heart health is concerned, our girl is in great shape.  Her once enormous VSD that was termed mild-to-moderate after surgery is completely closed! She has continued to take sildenafil for mild pulmonary hypertension, but her cardiologist plans to wean her off of that after her next echo.  And she's gained a solid five or so pounds and grown several inches in the last year.  Although she's still in the first percentile on weight and pretty tiny for someone who just turned four years old.

home two years
october 27.2016

As I was putting thought into what I would write about for this year's post here, I knew it needed to include some of our experience with apraxia.  And I knew I needed to share what we've learned about DiGeorge and its effects on our girl.  Technically defined, apraxia is a neurological condition where damage to the brain causes difficulty or inability to control muscle movement.  When it affects the ability to speak, it is termed apraxia of speech.  It can be present from birth and is typically traceable to brain damage or, in some cases, a syndrome or genetic defect.  It can also be caused by a traumatic event. 

If you do a little research on DiGeorge, it won't take you long to find a list of statistics, one of them citing that "the majority" will have speech and language disorders. This is where statistics about this syndrome and I part ways a bit. Because I don't believe that my daughter's speech issues are as much related to her syndrome as I think they are related to trauma.  When Mary-Kate came to us, she was able to repeat all sounds and was distinctly using them in words.  Her ability to do so and use more than two sounds on a regular basis is no longer there.  The marked change came after her code and fourth intubation following her surgery.  And tests did not reveal brain damage from the code.  The encephalopathy that ensued was, without a doubt, trauma-based. Combined with her sleep issues and hyper-vigilance, it is no stretch of the imagination that she struggles with PTSD.  

And I'll just add a little aside here.  In last year's post, I wrote that she hadn't slept through the night...or in her own the 27 months we'd had her.   Clearly, I was struggling from sleep deprivation when I wrote that because we'd adopted her only 15 months prior to that.  NOW I can say that she still wakes each and every night, some more than others, and hasn't slept through the night...or in her own the entire 27 months she's been in our family.  So there's that. Lord, help those few brain cells I have left function properly.  I mean, math.  It's not that hard. 

Physically, we do have some other issues that stem from DiGeorge Syndrome. I will reiterate that this syndrome has an extremely wide range of symptoms and affectations that can occur, and I won't attempt to cover them all here.  For Mary-Kate, we know it most likely led to her heart defect and to the incorrect development of her ears.  It also affects her T-lymphocyte level, stemming from an under-developed thymus gland.  A lowered immune system affects her ability to fight off viruses, bacteria and fungal infections.  Hers is about half that of a normal T-lymphocyte level.  Which means we must be extra careful in exposing her to everyday germs.  It also means we must closely monitor any immunizations she is given and that she can never receive any "live virus" shots such as MMR. 

Another consideration with DiGeorge kids is the development of autoimmune issues.  Autoimmune means the body attacks its own immune systems.  In Mary-Kate's case, she has been diagnosed with Hashimoto's Thyroiditis.  It sounds scary, but it simply means that her thyroid gland no longer works or never developed and that she will likely take thyroid medication for the rest of her life.  It isn't scary to me at all.  Hypothyroidism is fairly common and treatable, and I have lived with it myself for more than twenty years.

Reading down the list of things that can affect her health or the challenges she might face in the future, I can easily get sucked in and start thinking about the "what if"s.  After a long restless night of listening to her cry out in her sleep or a long day of her needing to breathe my oxygen for me, or sometimes both, I feel worn. But then I look at her.  And I don't think about any of that when I do.  Written limitations and expectations fall away, and instead I see a little girl who embraces life in the face of her own fears. 

I see one of the most amazing gifts I could have never asked for. 

black widow and judy hopps
october 31.2016

If you're still reading, here's where it gets good. 

Truth? Yes, Mary-Kate requires more than the average four-year-old in some respects, but she's absolutely normal in most.  Our day-to-day is not always easy, but even on those not-so-easy days, it's also pretty wonderful because it usually comes with hugs and kisses from a little girl who wanted nothing to do with me when we first met.  THIS GIRL.  She teaches me so very much.  I've shed a few tears in thinking about missing out on all the funny little things she might be saying if she just had her words.

And, repeatedly, she's reminded me that love speaks volumes without requiring a single syllable.

our birthday girl
february 2017

That something so simple as a heart on any one thing - which, by the way, stops this kid in her tracks every time - is another chance for her to point to it and tell me she loves me.

As in she waits for me to affirm that she loves me. 

That hearing her say things like, "Me, NOO!" for "Me, TOO!" when she wants you to know she is all in and ready for our next adventure is just as sweet as anything any of my other kids have ever said at this age.  Maybe more so.  And, oh, her giggle.

february 2017

Back in October, baby dedication Sunday rolled around again at our church.  It was the first chance we'd had as a family to participate in this event, and a glance at the calendar told us it was the right time.  Not only was it my husband's birthday, but it was also the second anniversary of the day we left for China to adopt Mary-Kate.  So we emailed and asked that we be added to the list.  Our church's lead pastor knew that Mary-Kate was adopted and that she'd had heart surgery.  But he didn't have any other details about her health or that she is mostly non-verbal.  He didn't know that her daddy prays daily for her to find her words. 

The pastor prayed individually over the babies being dedicated and presented each with a card with a personal verse of Scripture that God had led him to for that particular child.  He later shared that the verse he selected for Mary-Kate was one he had never chosen before.

"Now, Lord, consider their threats,
and enable your servants
to speak your Word
with great boldness."

Acts 4:29

By itself, this is kind of an odd choice for a baby dedication verse.  I'm guessing that there were more than a few raised eyebrows in the crowd.  I wouldn't know for sure because hearing it brought instant tears to my eyes.  And my husband's, but don't tell him I told you. I think God spoke volumes to us in those few words.  We can, and will, do everything we can to advocate and provide for our sweet girl and to get her the help she needs.  I can, and will, do my best to honor it all through my own testimony.  But an arsenal of therapies and research and clinics and treatments and blog posts is nothing in comparison to the reminder that our God loves her even more than we do and that He is able to accomplish great things through her, with or without her spoken word.  Of course, I pray that someday I hear her chattering away like most every other kid.  But even if not, I have peace in knowing the story that is her life, written by Him, will speak His Word with great boldness.

Perhaps best when words fail.

facebook: mission:mary-kate


Andrea Olson said...

Thank you so much for sharing, Cindy!

LisaE. said...

Thank you so much for sharing! Having children who say very little, I understand completely! She is definitely one in a million!

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