The Lucky Ones: Adopting a Child with a Visible Special Need

November 13, 2016 birthmark, Family Stories, hemangioma, phakomatosis pigmentovascularis, port wine stain, Vascular System 2 Comments

The Lord uses many avenues to speak to the hearts of his people and call them forward to adoption. For some that call comes from the Bible and teachings of the church, for some that call comes through knowing people who have adopted, some people meet the vulnerable in orphanages and fall in love, and others struggle with a longing for children that cannot be satisfied.

Eleven years ago, we were expecting our first child and navigating our first difficult pregnancy. It was the cross that we bore in that season of life. Sometimes we carry our cross with grace and strength, but sometimes the weight of that cross brings us to our knees. The weight is unbearable and weariness takes hold. And we show our vulnerability.

In that challenging pregnancy, fear of what the future would bring took hold.
Fear of how our family would grow, knowing the challenges before us, crept in.
There was no pregnancy glow.
There were no plans for maternity photos.
There were no emergency runs to satisfy ice cream cravings.

There were prescription medications.
There were nights on the couch.
Days of fighting to stay hydrated.
There was a husband cleaning up vomit and doing everything to keep the air scent-free.
There were weekends in the hospital getting IV fluids.

But God… God can make all things beautiful. He brings beauty from ashes and joy from suffering. Only God can do that. It was in that dark and bleak moment that my husband first proposed growing our family through adoption in the future. It was a gentle suggestion.

He planted a seed that we nurtured and dreamed of for 10 years.
We prayed and discerned.
We continued to talk about the “someday”.
We struggled with infertility, miscarriage, and two more difficult pregnancies.
We read books on adoption.
We took extra notice of families who we met that had adopted.
We welcomed two more biological children.
We survived 27 months of pregnancies with Hyperemesis Gravidarum.
We grew as a couple.
We grew in our faith.
We loved our three children.

But there was a voice that kept whispering, “There is more.”

We don’t know many families who have adopted. Neither of our extended families have grown through adoption. We knew a sacred few — a family from the pool, a family from baseball, another family from swim team. Those families confirmed the call for us. Those families just living life, drew us in. The beauty that resonated from their very being, to our hearts, was life giving. Their presence, their witness, their light were just the encouragement we needed.

On August 8th, 2015 we were traveling home from a family vacation, listening to an audio book on Marriage and it was then that God said, “You have a daughter just waiting for you.”

We both felt strongly that there was a fourth child that God had planned to be a part of our family. That was the day we began our journey to our daughter.

Adoption forces you to look in the mirror.
It forces you to see your strengths, faults, and fears.
It forces you to change — to be more like Christ.

You are being called to be Christ to your child. You are being called to walk out onto stormy waters and trust that God will provide the Grace to navigate the unchartered waters. In those very tough moments of self-reflection, all our fears surfaced ten fold. But our love for her life was so much greater than all the fears.

On March 27th, 2016 we submitted our Letter of Intent for a 15 month old, chubby baby girl, with a contagious giggle, living in Ningxia, China. Her medical file diagnosed her with “Extensive Congenital Hemangiomas”.

We reviewed her file with our International Adoption Clinic. Her labs and stats all reflected a very healthy and thriving child. Her videos showed a happy baby with no visible developmental delays. There were a lot of unknowns as we were unable to see most of her “special spots” and we didn’t truly understand what the real diagnosis would be, but we knew that this baby was ours and we were hers.

It was a beautiful sunny day with clear blue skies the morning of July 25th, 2016 in Ningxia, China. Shortly after 9am, Alexa Mei was brought into the conference room at the Ningxia Children’s Welfare Institute and was placed in my arms.


lieser


In that moment, grace, mercy, and love flooded the room and our hearts, as we greeted our daughter and allowed her to grieve the tragedy that brought her to us. As I rocked her and wiped her tears, her daddy, brothers, and sister watched as her soul was born.

Alexa’s medical file described her little body to be covered in hemangiomas, but we had no idea what that really meant, or what that would look like. That evening in the quiet of our hotel room, we undressed our precious daughter for the first time to bathe her and put her jammies on.

This was the beginning of seeking truth in diagnosing our daughter. Her little body did not have any hemangiomas. The majority of her skin was blue in color, with some port wine stains. She looked embarrassed and pointed to her “special spots”. I bent down and kissed them and told her “Beautiful. Wo ai ni… we love you HeHe!” And with that, we saw glimmers of smiles as our words of affirmation began to transform our daughter’s view of herself.

Alexa’s orphanage is a One Sky institute. Her nannies were trained well and loved her well. She attached quickly and bonded to each of us in the weeks that followed. Much of that was due to the practices of One Sky. We came home and were soon at our International Adoption Clinic for evaluations and consults with Dermatology and Ophthalmology, seeking an official diagnosis in order to provide the best medical care.

The doctors told us that developmentally and physically our daughter was very healthy. We were given the official diagnosis of “Phakomatosis Pigmentovascularis Type II”. A genetic syndrome that includes the combination of port wine stains and Mongolian spots. The syndrome can have neurological, ophthalmic, and vascular complexities.


lieser4


At this time our sweet girl is not displaying any symptoms of these. As she gets older and remains symptom-free, the likelihood of her developing complications lessens. She will be monitored by specialists twice a year for any changes, but most likely the greatest challenge that our girl will face will be the social implications of looking different.

We praise God for the blessing of her life and her health, but we know that challenges may arise. Things may get more and more complicated as she gets older, possibly not medically, but emotionally. The reality is that many kids who are adopted reach a point where they resent “the different”. They get tired of people always noticing that they are adopted. Our sweet girl shares that difference with all adoptees, but also a physical difference of having “special spots”.


lieser1


There are many people who love differences and appreciate the unique hand of God. There are even some people who will not even notice her differences, as they truly see the beauty of our daughter. Fortunately those people are the majority. Unfortunately we have already encountered a few people who, for many reasons, cannot see beyond differences, and do not appreciate them.

Those people who feel that there is something to pity, or something to fix.

Our daughter is beautifully and wonderfully made!
She is not broken.
She does not need pity.
She does not need to be fixed.
She needs love, unconditional love.
She is a miracle of God’s hand and a perfect gift to our family.

Our future will be a balance of being mindful that while we don’t see the differences, others might and they may ask questions that are intrusive or rude. They may make comments that irritate us and upset our beautiful girl. While we want her to be strong and confident, we don’t want to become indifferent or minimize the challenge before her. We are not naïve to the fact that navigating the teen years is challenging for everyone, but navigating the teen years when you look different is tough.


lieser3


Our challenge as parents is to raise a daughter with confidence and a self-esteem that can overcome the comments that hurt.
To instill in our daughter the unconditional love of Christ.
To teach her that her “special spots” are the kiss marks of angels that helped bring us together.
To instill in her the knowledge that different is beautiful and unique is pure gift from the Lord.
To radiate the light of Christ that draws people in and calls them forward to adopt.

Pray for us, dear friends, in our journey as our story will continue to unfold.


lieser2


For now we love all four of our kids, and we tell our sweet China babe that her life is a miracle that has shaped all of us to be more like Christ, for we are the lucky ones who have been asked to be her forever family.

– guest post by Jill



2 responses to “The Lucky Ones: Adopting a Child with a Visible Special Need”

  1. Erica Ryan says:

    Our first daughter is also from Ningxia and has a hemangioma! She is 6 now and a true treasure! Congrats.

  2. iram says:

    Beautiful heart, beautiful family

Leave a Reply

Your email address will not be published. Required fields are marked *

© 2019 No Hands But Ours

The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.