Thursday, August 30, 2018

A Name Not A Diagnosis.

We have gotten so many questions with regard to Cate's "diagnosis" and how her scans were - and I have had this blog post drafted for almost two weeks now and have been hesitant to post.  Hesitant to post because (a) I don't want anyone who hasn't met her in person to see words on a page about her and come to conclusions about, feel sorry for, or label her -- and (b) part of what I share is my story - but mostly it is Cate's story - and it is for her to share when she gets to an age to share it herself - if she chooses.  So that being said I will tread lightly on the subject of a "diagnosis" and if I have learned nothing else in the last two-months-and-some-change about "diagnosis-es" it is this  - it. doesn't. matter.  The final "answer", "diagnosis", "scan" doesn't matter.  And not just in Cate's situation - but all kiddos! We met so many amazing kids on our adoption trip and each one had a "diagnosis" but not one single kid was a diagnosis.  In fact, we never even noticed. 

That being said - we have been transparent with the good, easy part of our story - and we want to be faithful to be as transparent as possible with the less-than-easy part as well.  We know God can use our story  - and Cate's miracle - to encourage someone else to step out on faith - and we want to shout His goodness to our family to anyone who will hear [read].

I'll start with just a brief recap - so that you can be just as amazed as we have been with what God is teaching us through Cate.

When we found Cate's profile back in March - we felt like she was our girl instantly. (I mean, seriously - that face!) We truly felt a connection with a picture and a tiny little grainy video.  We prayed and prayed that God would open and shut doors - clearly.  Like open them wide or slam them shut - and that we would continue to walk through the doors he opened - even if things got scary.  You know - big faith kind of prayers.  To be completely honest - her needs list was way longer and way scarier than we felt "open" to initially - but we had this weird eerie peace.  You know, the peace you pray for in those big-faith kind of prayers and yet here we were - surprised to feel it. But we felt it - and so we went - we jumped in with two feet and marched through those doors carrying the banner of "the Lord is literally paving the way for us."  And He is!

However, that peace that the Lord was paving our way didn't stop us from asking a million questions, seeking out professional opinions and taking it all with a grain of salt - because again, the peace won over the fears.  We heard the "prepare for this", "you might expect that", "this could mean this" and so we continued to investigate - but knew in our hearts that she was coming home to us no matter what.  In the meantime though, we asked for scans of her brain. Scans that we knew had been done.  Scans that we had written records of - but no actual scans.  Scans that could help us get a clearer picture of what was going on.  To no avail.  Twice before we left we asked and received a "no."  In China, at her orphanage, we were able to talk with the orphanage doctor - who said, yes, I can send them to you -- and never did.  I was frustrated - because it could have made the appointments we have had so much less invasive (i.e. no sedated MRI) and truthfully, I felt like I needed to know.  But did I really? With no scans - I just looked at this perfectly adorable, capable, hilarious, quick-learning little girl and got to know her.

(I can tell you exactly what I wasn't thinking about here as I held her for the first time - and that was anything related to a diagnosis.)

We knew - based on her file that we had received before going to China - that at some point that she had a brain injury - either before or shortly after birth that caused weakness on her right side (Cerebral Palsy - "CP"), and that she had a shunt for hydrocephalus. There were also several other scary words in her file that I can barely spell - all of them things you should never google if you are in the business of trying not to worry.  So we didn't google.  We put away the file and we got to know Cate - in all her sweetness.

The more we got to know - the more and more we convinced ourselves that the paperwork was wrong.  There was no way that she had any of those things listed - the CP, yes, because the use of her right hand is limited - and the shunt for hydrocephalus - yes, because - there is a battery sized bulge on the side of her head.  But she is walking, talking, doing everything a "typical" two year old girl would do.  Some things she is behind on - which was to be expected from being in an orphanage - but for the most part - she was ahead in every area compared to where our "expectations" were.  We had -- to the extent we could - mentally prepared for the worst in every situation.  Our biggest concern was her language and ability to communicate.  Her file was very cautious about these things in general.  From what we were told - she would only repeat 1 word - and based on her injuries we were cautioned that she could be/probably would be non-verbal or have extreme difficulty communicating.  

In China - the day we got her - girlfriend put our biggest worries at ease.  HA!  Since we have been home - she has shocked us with her language skills.  There isn't much we say to her that she doesn't understand. And she literally repeats EVERY.THING.  She remembers words - even if she isn't stringing them together properly all the time - she knows - and she is getting it.  (Side note - The funniest thing so far about her language has been when we tack someone's name on the end of a phrase - even just once - and she automatically thinks that person's name is part of the phrase. We hear a lot of "sit down, Wyatt! sit down, Knox!" and "Watch you [me], Mimi!" even though she is talking to someone completely different. It's hilarious.)

The day came when we finally saw the pictures from her MRI.  This amazing, wonderful, mouth-full-of-words, keeping-up-with-the-other-kids, girl had a Brain Injury.  Now.  Y'all.  I barely made it through anatomy in high school because the smell of that cat we had to dissect made me sweat.  But I know what a brain is sort-of, kind-of supposed to look like.  And I knew when I saw her scans that it was not that. 

I almost hit the floor.  I kept looking at Cate and looking at her scans and thinking - this doesn't make sense.  I don't get it.  Our sweet NP and Neurosurgeon were so reassuring and so gracious and bless them for not making me feel like an idiot for doing my best to compose myself in the office and put together coherent questions. But as they explained it - her brain was injured - we will never know exactly how - (more than likely a stroke) - but it has completely rewired itself and is working "just fine"!  I kept asking - with this kind of injury - what should we be seeing her do differently.  What does the part of her brain where the injury occurred control?  Speech.  Communication. Her ability to repeat, understand, and process. All the things she has demonstrated she has the ability to do.  

To say I left the appointment so confused but so grateful - would be the understatement of the year.

I think I cried on and off for the rest of the day - not because I was fearful at this point - because she is NOT her scans.  She is Cate.  She is capable, strong, smart, hilarious and all the things we were fearful she might not be.  She is.  She is a miracle.

As Nate and I sat on the couch that night after the house was quiet and all the kids were in bed - I couldn't help but cry all over again.  What if I had seen the scans before I knew her?  What if we had been sent the scans on any one of the times we had asked?  What if God had answered all of our prayers for more information before we met her with a "yes" instead of a "no"?  What if...

Would I have still had faith?
Would I have been able to say "yes"?
Would we have gone?
Would we have seen past the fear and felt peace? Or would my tendency to worry have overtaken everything good God was trying to do in our family?
What if I had seen a diagnosis and not a child of God? My child?
What if God had given me what I wanted when I wanted it?

I'm afraid of the answer to that question.  I truly am.  Ashamed and embarrassed to even say it - but I don't know if I would have been brave enough, or if I would have trusted God enough.  I hope I would have.  But at the same time - even if  I was still able to say yes,  even if we had gone and brought her home - I would have over-examined, over-thought, read in to, made assumptions and flat out worried about her - and what she was doing or not doing or what she might do one day - INSTEAD God protected me from myself.  

He gave me the perfectly good gift of getting to know my child without any worry.  Without fear.  With just peace.  To get to know Cate - as she is - not as her scan is.  And what a perfect good gift Cate has been to our whole family.

As I was telling Nate (bless his heart) all these things as they were going through my mind - would you believe me if I told you that my phone went off?  My WeChat App.  And it was Cate's orphanage doctor.  She had sent Cate's scans.  The scans we had asked for before, during, and after meeting her.  The scans that were unable to be located.  Were sent to me - on my couch - from halfway across the world - on the same day I had seen them for myself from our doctors here.  

There really are no words.  Other than - Thank You, God - that our family can say.  There is no way that anyone will ever be able to convince me that God didn't completely protect me from myself - and how grateful I am for that can't be put into words.

We saw our neurologist the following week and by this time I had had time to process all the things I had seen - and really, how "unimportant" what he had to say regarding an actual "diagnosis" seemed to us at this point. He has been so wonderful and has reminded us constantly - "we treat kiddos, not scans".  When I told him how shocked I was actually comparing her with her pictures - for lack of a better explanation - he basically said "then don't!"  Yes, she has all the things we had convinced ourselves she didn't.  But that doesn't change her. What she is doing - and what she is going to do.

He believes that based on her pictures - her brain injury happened in utero - and that because she was in the protective shelter of her birth-momma's belly - that her brain was able to focus on re-wiring - and that her strong side has taken over function for both.  Any other option, in his opinion, she would not have lived through.  How grateful we are for her birth-momma.  For her protection over Cate's life.  For giving Cate a chance at life.  For allowing her to be a part of our family.  For keeping her safe.  We may never know her, but I hope somehow she can sense that Cate is safe, taken care of, and loved beyond measure.  

As for Cate, she is Cate.  She is a lot of things - but a diagnosis isn't one of them.  She may need help with things as she grows and matures - but I have no doubt in my mind that she is not going to be stopped.  I can't wait to see what she decides to do with her little life.  I can't wait to cheer her on.  I can't wait to share how God continues to work through her (and Skylar and Wyatt and their ability to wrap their arms around her from day one!) in my life.  I hope that if nothing else - through sharing what God has done for us - it will make anyone who reads this join us in being thankful for the miracle of life.  

Friday, August 3, 2018

When the Rubber Meets the Road....

In the last week or so - I have found myself thinking "I should share this struggle I am having..." or "I should write down how I am feeling frustrated in this moment..." and "this is the hard part I haven't shared yet..."

In the middle of all of this adjustment period at home - the grief of losing my grandmother too soon - right before we left for China - has hit me square between the eyes.  There isn't an hour that goes by that I don't wonder why God couldn't have given her just a few more weeks here on earth with us - so that she could actually put her hands on the little girl she had faithfully prayed for for almost two years.  I keep reminding myself that God's plan is for me - not against me - and that I don't have to have the answers to this question - I just have to trust that this is His plan. So as you read this, please give me grace - there is a whole lot of emotions happening in this house!

So here it goes.  Adoption for our family has been the biggest blessing. Cate has adjusted (so far) wonderfully - and it is so easy for me to share the wonderful-cuteness and sibling love that truly is - at the end of the day - really is what is mostly happening around here.  She was made for our family - I have no doubt.

But the truth is - there is lots of hard mixed in with the cuteness, the kindness, the giggles and the sweetness.  Lots. Of. Hard.

Like watching your new daughter hit her siblings repeatedly and expecting them to do what she is telling them to do.  

Like watching her scream in the face of a person who is just trying to actually play with her because she has never been taught to share - or how to play together.

Like watching her scream over who-knows-what.

Like watching her throw herself on the floor because she isn't immediately given what she wants in response to her hitting and screaming  - and silently cursing the nannies who just moments ago I was so thankful for - because they took care of her to the best of their ability - yet completely failed to help prepare her for siblings because they let the loudest kid in the orphanage - or the "favorite/princess" get whatever she wanted.

Like sitting on the floor beside her while she is in "time out" (time in) and [patiently] waiting on her to decide she is ready to try again - even it takes an hour - which sometimes it does.

Like wondering - am I adding to her trauma if I let her cry - or tell her "no" - or don't give in to this?  Am I adding to her trauma if I don't let her have what she is wanting?  Am I making her dependent on me by doing x-y-z - or is that what she needs in this moment and I'll deal with the aftermath later?

Like having the thought "she is hurting my Wyatt" and having to catch myself and remind myself that she is mine too - and she really doesn't know better.  

Like wondering if Skylar and Wyatt are really as okay with everything as they seem - or are they just sucking it up and dealing with it and will they let it out later that they are - in fact not thrilled with how they are being treated.

Like not being able to leave the room or eye-sight line of Cate if there isn't another adult around without a full-blown panic attack happening. 

Like having to explain multiple times to my six year old that she will never be left somewhere because we can't get her the medical care she needs - even though that's how she ended up with a sister.  

Like having to explain that Cate's mom did - to the best of our knowledge - love Cate.  

Like watching Skylar and Wyatt be happy-sad over how Cate ended up as their sister.

There is a whole other level of second-guessing my mom-decisions that comes with adoption -- that I had been warned about by the moms who went before me -- but I never anticipated that level of true paralyzing fear that I might possibly add to the trauma her little two-year-old-self has already endured - or that by chance something I do could make her miss her orphanage.

There is also the fine line of providing security by providing new boundaries and enforcing them in a healthy way.  But am I doing it too soon?  Too late?  Too stern?  Too lenient?  Too much?  Not enough?  Over this but not that?  Over that but not this?

I feel like in the moments when I get so overwhelmed that the fear chokes out the joy - the Lord speaks to me - usually through Cate.  She will "sing" part of a song she hears, or randomly hug someone, gently touch my face and use the word "geeeennntle", or point to my phone and say "cheese" with that precious squinty scrunched up little face - and its the tiny bit of encouragement I need in that moment to keep going.  

Because in the middle of all of the hard - there is lots and lots of joy.

Like hearing Cate say a new word and immediately praising herself with "gooood giiiiirrruuuuul"!

Like watching Skylar and Wyatt introduce Cate to their friends, teachers and random people in the store.

Like seeing Skylar and Wyatt celebrate her every little tiny victory.

Like watching Skylar and Wyatt cheer Cate on as she attempts something new - and encouraging her to try again if she doesn't succeed.

Like seeing all three of them work together to empty the dishwasher - and watching Cate learn where things go - and seeing her become more comfortable with her home.

Like them all voluntarily sharing food (and being thrilled because it's not off of my plate this time).

Like hearing Skylar and Wyatt pray for the other kids left behind at Cate's orphanage and knowing they truly have a burden for others - and watching Cate fold her hands and squint her eyes while they pray.

It is worth it.  She is worth it.  It will take a long time to build up trust in her - she doesn't understand that family - this family  really is forever.  It won't be tomorrow - and it might not be this year - or next year - or the next year -- but I - WE - promised to pursue her, love her where she is - and do the best we can - second guesses and all - to help her know and understand love and family - and that is what we will do.  Struggle bus and all.  That is what family does.  We will continue to focus on all the happy, giggly, fun, silly, peek-a-boo, laughter and joy that is happening - and continue to trust that in time - the other will fade and she will be able to truly know the love that comes with a family.