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.  














3 comments:

nolespirit said...

Thank you for sharing your story Carrie. It's so incredibly heart warming!!!

Unknown said...

Carrie, I may not know you as well as others do but from what I do know these are some conclusions I feel. 1. The scans would not have changed what you feel. You went into this adventure being led by God. It seemed to me that nothing would have changed the direction you have taken because of the faith you have in God. 2. Cate is a blessing to you and she is blessed to have you. God picked her out for you because He knew that she needed someone with a tremendous amount of faith and love. 3. Had the scans come to you prior to your trip across the pond, it wouldn't have changed a thing. You had your heart set on Cate. In fact, in my opinion, it would have probably changed in the way that had your faith deepening the love you had for this angel. Isn't it interesting that the scans just conveniently showed up when they did? 4. Any medical issues that Cate has or will have had the greatest physician watching over her and no one can change that. 5. She is learning fast and easily which should tell you something. Like, with the love you all feel for her, she has the perfect people, (parents, brother, sister, family, friends and Father) watching over her 24/7. You both went into the process knowing that you wanted to adopt a child. No where in this decision did I hear you say "we want a perfect, healthy, beautiful, etc etc child". You wanted a child and you both prayed for God's guidance. PERIOD. And finally, no amount of scans will tell you 100% what her future will be like medically. Only God knows the plan He has for the adorable Cate. Relying on God is the only path that is guaranteed. Loving Cate as well as Skylar and Wyatt is the job of mommy and daddy. You and Nate have the intelligence needed to educate her. The doctors in the USA are better doctors than doctors taking care of children in an orphanage in China. (Again...my opinion) Actually, I could have left China off and just left orphanage on that statement. Money seems to talk. Lastly, Cate has a wonderful brother and sister who had no way of knowing that she is in any way different, medically, than they are. They still welcomed the beautiful new sister unconditionally. This is a blessing. You and Nate have taught them well. Our lives have been blessed starting with our grandparents up to and including our parents. This will pass on thru Cate, Skylar and Wyatt's children. Keep up the good work! I am proud of you! Love you all!

Unknown said...

Carrie, I may not know you as well as others do but from what I do know these are some conclusions I feel. 1. The scans would not have changed what you feel. You went into this adventure being led by God. It seemed to me that nothing would have changed the direction you have taken because of the faith you have in God. 2. Cate is a blessing to you and she is blessed to have you. God picked her out for you because He knew that she needed someone with a tremendous amount of faith and love. 3. Had the scans come to you prior to your trip across the pond, it wouldn't have changed a thing. You had your heart set on Cate. In fact, in my opinion, it would have probably changed in the way that had your faith deepening the love you had for this angel. Isn't it interesting that the scans just conveniently showed up when they did? 4. Any medical issues that Cate has or will have had the greatest physician watching over her and no one can change that. 5. She is learning fast and easily which should tell you something. Like, with the love you all feel for her, she has the perfect people, (parents, brother, sister, family, friends and Father) watching over her 24/7. You both went into the process knowing that you wanted to adopt a child. No where in this decision did I hear you say "we want a perfect, healthy, beautiful, etc etc child". You wanted a child and you both prayed for God's guidance. PERIOD. And finally, no amount of scans will tell you 100% what her future will be like medically. Only God knows the plan He has for the adorable Cate. Relying on God is the only path that is guaranteed. Loving Cate as well as Skylar and Wyatt is the job of mommy and daddy. You and Nate have the intelligence needed to educate her. The doctors in the USA are better doctors than doctors taking care of children in an orphanage in China. (Again...my opinion) Actually, I could have left China off and just left orphanage on that statement. Money seems to talk. Lastly, Cate has a wonderful brother and sister who had no way of knowing that she is in any way different, medically, than they are. They still welcomed the beautiful new sister unconditionally. This is a blessing. You and Nate have taught them well. Our lives have been blessed starting with our grandparents up to and including our parents. This will pass on thru Cate, Skylar and Wyatt's children. Keep up the good work! I am proud of you! Love you all!