For Life: Unexptected Treasures

June 4, 2017 Central Nervous System, cerebral palsy, developmental delays, Developmental System, Lifelong needs, low muscle tone, May 2017 Feature - For Life, seizures, undiagnosed SN 1 Comments

Adopting a child with special needs can be scary. And even scarier when that child has needs that just might require a lifetime of parental care.

In our For Life series, we are hearing from those whose parenting journey has diverged from what most would think typical. They’re parenting children who require more than what many would believe doable. And they’re doing it in a way that we consider remarkable.


I used to think it was dramatic and silly when people would share that they saw a photo of a child whom they had never before met and instantly just “knew” that was supposed to be their child. My husband and I had two biological children and had adopted two children from China by the summer of 2011 and I couldn’t relate to any such experience.

Then, one day in June 2011, God allowed me – as He so often does when I scoff or roll my eyes or say “I would never…” – to see a photograph of a Chinese child with white hair and blue eyes, sporting pigtails and dressed in yellow.

And in that very instant I felt it.

She was my child.

Someone I didn’t know had my daughter’s picture on her personal blog and was advocating for her to find a family. It was a divine moment. God had already given me many signs that He was at work behind the scenes before I even discovered “the photo”. In my other adoptions, I had experienced God’s definitive leading, but never as intensely or as frequently as I did during the summer of 2011.

It didn’t make any sense really, at least not from a practical standpoint. Our youngest daughter already at home was about to endure several surgical procedures in another state which would require a two week hospital stay and life-long management. We didn’t know it then, but that same daughter would also end up requiring open-heart surgery and spinal cord surgery within the next six months.

We had four children. We were an active duty military family on a limited budget. I was homeschooling. Our youngest daughter had some concerning behaviors that we would find out many years later were due to autism spectrum disorder. We had a full life!

But God.

He was calling so very clearly that all of our seemingly valid excuses fell apart. We requested the file of this white-haired beauty and sent it to a doctor who had extensive work experience in Chinese orphanages. She was almost 6 years old and her file had two dreaded words that probably kept many other families from moving forward: Developmental Delays.

I talked with other parents of children from China who had albinism. I researched albinism and institutional delays. I was nervous, but also firmly convicted that she was ours, regardless of the what ifs. I made up my mind to hope for the best and to believe that her shy demeanor and low vision accounted for the low test scores. I wanted to believe that she would “catch up” with time and the love of a family.

We trusted God for her future, for ours and for the finances to go through another international adoption on enlisted pay.

Looking back 6 years later, I can admit that I wasn’t really fully trusting God. I had convinced myself that because God was calling us to adopt this child, surely, surely, He wouldn’t allow her to be truly delayed permanently.

Because, well… that would be too hard.

Why would He call us to harder than we were already experiencing?

I had so much to learn.

We moved forward and step by step, God came through for us. We didn’t fundraise or apply for grants. I was very busy taking care of the children already entrusted to us. Finally, the time came for us to travel to China to meet our daughter, Jade. She was around 7 years old when we met.

The moment I laid eyes on her, in August 2012, I knew in my gut that something was wrong. Something more than we had been told about. She wasn’t walking well. Her posture was very hunched over and her tone was extremely floppy. Her ayi drug her by her arm. She was covered in bruises. Her eyes were rolled up into her head so that only the whites of her eyes were showing.

When I finally saw her blue eyes that I had stared at so many times in the photograph, they were racing horizontally back and forth so quickly that I wondered if she could see at all. She made odd sucking sounds with her mouth and didn’t respond to requests or commands from her ayi. I immediately suspected a neurological condition, but I also was concerned about her mental status.

I stood firmly on my faith that come what may, this was the child God was entrusting to me and to my husband. We signed the papers and answered the questions and it was done. We had our oldest biological daughter with us on the trip and Jade warmed to her quickly. We soon saw a sunny disposition but also lots of behaviors typically not seen in a child of her age.

We were well-versed in the impacts of institutionalization and we chose to believe that all Jade needed was time, love and exposure to new things outside orphanage walls. We brought her home to North Carolina and two months later, moved cross country to California for my husband to attend a military language school. Referrals took time, but we saw the best specialists at Stanford in Palo Alto, CA. The drive to that hospital from our home was just under 4 hours round trip and I was making it several times a week.

The first year Jade was with us we saw 3 different eye doctors – none of whom agreed on her visual acuity. We bought glasses and then were told they were making her vision worse, so we took them away. She got fitted for AFO (ankle braces for support to assist with walking) and she was tested for Hermansky-Pudlak Syndrome and Chediak-Higashi, both of which were negative.

She began physical therapy, speech therapy and occupational therapy. She also had aquatic therapy and hippotherapy. There wasn’t a day of the week that I wasn’t driving to therapies, to specialty care visits or to the pediatrician for one of the little girls. Did I mention that I was also homeschooling?!

Jade didn’t know even the basics, so we began with colors and shapes and counting and ABCs. She learned slowly, but was persistent. She was content to be doing what her siblings were doing. She suffered incontinence of both bowel and bladder, which we didn’t understand for a child her age. A sedated MRI showed several areas of damage to her brain along with areas of her brain that simply didn’t form.

She was diagnosed with cerebral palsy and hypotonia (low muscle tone). Later, we noticed that she was having several seizures a day that appeared as “staring spells”. She then had a tonic-clonic seizure during the night so she was admitted for an EEG and diagnosed with seizure disorder. Another problem that plagued our girl was epic nosebleeds that took almost an hour to stop with much blood loss as well as easy bruising. It took 3 pediatric hematologists in 3 different states before she was diagnosed with “unspecified bleeding disorder” which basically means that they don’t know exactly what to call it.

After her first year home, her physical therapist discovered that she has uneven leg length which was contributing to her unusual gait. She began wearing shoes that were adapted to correct the discrepancy.

In her second year home, she was speaking more English and one day, I covered up her dominant eye and asked her to tell me what she saw. “Black. I see black.” Another pediatric ophthalmologist confirmed then that Jade is completely blind in her left eye – no vision at all. How had the others missed it?! She had grown blind many years before we met her. The doctor told me that had we caught it when she was a toddler, we likely could have saved her vision in that eye. Heartbreaking. Her right eye has very low vision, which is at the worst end of the spectrum for people with albinism. Her estimated vision is about 20/800.

In her second year home, I had her evaluated at the local elementary school with an IEP evaluation. That was the first time anyone ever said to me frankly that my daughter is intellectually disabled. I was informed that her delays weren’t actually delays, but rather permanent disabilities. I was crushed. I felt so much sadness for her and for me and on top of that, I felt ashamed that I was so disappointed.

The life I had expected for us all had just vanished as quickly as a diagnosis. I became angry with God and distanced myself from Him. I could not accept that this was real. My daughter was blind with cerebral palsy, intellectual disability, mobility challenges, bleeding disorder, bowel and bladder dysfunction and seizure disorder. And none of those things were “fixable”. How could that be right?!

I confided in a handful of people, many of whom simply could not relate at all to my emotions or experiences. Some told me that if I had more faith and prayed more earnestly that my daughter would be healed. I wondered if it was somehow my fault because I wasn’t faithful enough. That doubt haunted me.

I didn’t know where to turn. I was in California – far away from friends and family and my husband was gone from dawn to well past dusk for school and other military duties. I felt isolated, hopeless and so ill-equipped for the task of mothering Jade. Bless her. She is the sweetest and most gentle child you could ever have the pleasure of meeting. None of this was or has ever been her fault. I just felt so alone, so overwhelmed and so angry that God had dragged me into that place of despair.

I was confused and hurt and I didn’t know what to do with all of those feelings, so I did my best to stuff them away. After almost 2 years in California, my husband received orders to serve on a hardship tour (meaning without his family) in South Korea. I chose to move to Tennessee near another military base that was close to my extended family members for the year of solo-parenting. The children were transferred to Vanderbilt for their medical care.

I made the difficult decision to enroll the children into public schools for the first time. Jade was re-evaluated and placed in a self-contained special education classroom. She refused to speak at school and regressed in her toileting progress, however she enjoyed the routine of school very much. At the end of our year there, we were sent to yet another state where I have been homeschooling for the year. In August of this year, Jade will be attending a public school where she will be working on life skills with other students her age. She is ready. I am not!

Each year of being Jade’s mother has changed me. I can now look back over these past almost-five years that I have known her and been charged with caring for her, advocating for her, teaching her and nurturing her and see that God wasn’t absent during my seasons of darkness.

He was at work all the time.

The miracle that I wanted – for Jade to be healed of all of her physical disabilities – hasn’t happened. What I can now see is that an even greater miracle has taken place: I have been changed! God has used Jade to slowly change my heart. Jade isn’t suffering. She isn’t in pain and she is happy and content with her life, just the way it is. She doesn’t long for sight, or for intellect or physical prowess. Nope. She is content to be exactly who she is.

She has taught me so many life lessons and I am still learning. In all of the moments of cleaning diapers well past when I expected to be finished with that season of life, God was whispering to my heart, “I see you My child. I am allowing you to serve Me in this humble way. I promise that even this will work for good in your life.”

In the many moments of bathing my girl, dressing her, fixing her hair, putting on her shoes, slathering her with sunscreen, helping her into the car seat, pushing her in her medical stroller, wiping her face, wiping her nose, cleaning up her blood, sitting in waiting rooms, taking notes as I discuss treatment options with specialists, discussing goals with therapists, adapting life to help her to be more independent, in all of those moments and so many more, the Father was at work for good.

My initial expectations were that I would have to work hard to help my daughter to catch up, but I hadn’t allowed myself to believe that she might not. I hadn’t initially wanted to have a child for life. I didn’t intentionally choose this life. I had selfish ideas about retirement and relaxation.

God had so much more for me than what I had dreamed up for myself.

What I am learning is that while there is much work in raising this treasure, there is also much reward. God chose to allow me to have so much more reward than I was expecting! There is hidden treasure along the journey of special needs parenting. God continually uses my daughter to remind me that He loves His children – not because of our abilities to perform – but because each one is made in His image.

Jade continues to teach me about acceptance and forgiveness and enjoying all the little things that I would otherwise be too busy or hardhearted to notice. She gets so excited about the simplest things. She doesn’t have preconceived ideas about people. She gives freely and receives graciously. Her favorite things in the world are family members, food and Bible stories. She isn’t worried at all about what tomorrow might hold. She loves worship songs and is excited for Heaven.

She is everything good in the world, unencumbered by selfishness, greed, comparison, envy or revenge. She forgives instantly and wholeheartedly. She laughs in a deep voice that comes from her belly. She never complains about all the things she can’t do. She exclaims loudly without worrying what others will think when she experiences something that delights her.

This girl has so many things that make her life difficult, but she is completely content just being herself, exactly as she is – blind, with cerebral palsy, intellectual disability and other medical challenges.

Once, when she and her siblings were taking a “survey”, she was asked. if she could, what she would change about herself. Her answer: “Nothing. I like me just how God made me.”

She has arrived while I still strive to trust God so completely with who He has made me to be.

I don’t yet know what life will look like in 10, 20 or 30 years. What I do know is that when the time comes, God will give us what we need at that time, and not before. God knew from that first glance at an advocacy blog post the challenges that she and we would face. He also knew that He had overcome them all.

It is truly my honor to get to care for Jade. Today. Tomorrow. And for all the days to come. God is blessing me with eternal treasures that I didn’t even know to even ask for. I am no longer the woman I was 6 years ago.

I am so deeply thankful. I could have missed this. In ignorance, my fears could have kept me from knowing the profound gift of loving one of the sweetest treasures God has ever created.

If I could go back in time, I would adopt her all over again. The only thing I would change would be my attitude and my perspective. God has graciously given me time and new perspective.

If God is tugging at your heartstrings, asking you to consider adopting a child who might be “for life”, my best advice is to trust Him. He’s a good Father and He gives us such good gifts.

– guest post by an anonymous mama

One response to “For Life: Unexptected Treasures”

  1. Penny says:

    Beautiful article – thank you! A good reminder to love and celebrate our children exactly where they are.

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