More Than We Ever Expected…

May 18, 2019 albinism, developmental delays, Developmental System, Family Stories, global developmental delays, older child adoption, orphanage realities, Skin Conditions 7 Comments

We entered into this adoption full of hopes and dreams just like most people. However, we also understood the realities, especially when adopting from China. We knew the gambles, had read all the blogs and books and articles we could get our hands on.

We knew to expect the unexpected… or so we thought.

We had considered adoption many years before, but being a military family that moved around a lot we decided it was maybe not a good scenario for a child who may need solid ground for a while. So we put it on the back burner.

But in February of 2016, as we completed retirement paperwork for my husband to retire from the Marine Corps, God gently tapped us on the shoulder and reminded us that adoption was still in His plans! After prayer, talks with friends who had adopted, and more prayer, we officially submitted an application in April 2016.

We completed the medical checklist and were open to a good many conditions. The one thing we didn’t feel sure of was taking on a child who would need lifelong care or was severely medically fragile. So in August of 2016, when we were presented with a file of a six year old little girl whose medical condition was albinism, we were almost relieved. This condition didn’t seem too scary. We researched albinism and contacted an IAC doctor to review her file.

For all intents and purposes, she seemed to be fairly healthy. Yes, she had albinism which meant the accompanying low vision, photophobia and nystagmus. We knew the risk of skin conditions. The need we would have for constant sun protection, etc. We were prepared to deal with that and felt comfortable saying Yes. That first photo of our little girl showed this fair little angel, Sitting on the steps of the orphanage with a buzz hair cut and mismatched clothing. Her eyes were sad but she was rocking a smile that melted my heart.

So we said Yes. This was our girl.

In her file and the subsequent updates we received over the next year, it stated that she was slightly delayed and because of her age did not yet attend school. We asked specifically about her eye sight and they sent us a video showing how she could walk across the room and pick up a small apple off the table with ease. It also showed her going down the stairs of the orphanage (much too quick for this momma’s heart I might add!) on her own, using the hand rail. Again, it appeared that her vision was not too horribly bad and she was very mobile!

Maybe we were the ones blinded and only seeing what we wanted to see, but I don’t think so. I have reviewed the three videos over and over again and still barely see the signs: the signs that there was much more to her “delays” then her file stated.

August of 2017 arrived and it was finally time. Time to fly to China and get our precious girl! We received our daughter on day 5 of the trip. We traveled to the Children’s Welfare Center with our travel group where we would all be brought our children. One by one, each family received their child. Each child having a different reaction to being handed over to their new parents and commencing their new life.

At long last it was our turn (our daughter was the last to arrive). In walked our girl with her orphanage director. She was smiling ear to ear and gave us big hugs. She then proceeded to run around the room playing with all the toys. Not a single tear shed from her, no panic or melt down. She was just joyful.

By the time we got back to the hotel, my husband and I both knew there was something “wrong”. Something different. The lack of emotion (other than joy) from her was because she truly had no understanding of what was happening.

She was frenzied and wild. Didn’t seem to understand our gentle commands (which we stated in Mandarin) and it was obvious that even the simplest of tasks (turning on a light switch) were beyond her. Just after lunch we attempted to lay her down for a nap, as was her routine in the orphanage. She laid there literally shaking. Not out of fear, but out of excitement (or adrenaline, we aren’t sure which).

Within the first couple of days, we felt like the rug had been pulled out from under us. This child was not the child we’d read about. She was much more delayed and almost, dare I say, mentally challenged. Even our guide noticed it and asked if we knew ahead of time. When I stated that we did not and had only expected “typical” orphanage delays (she was now 7 years old and had been in the orphanage for 3 ½ years, so we assumed she would function around a 5 year old level), the guide took it upon herself to call the director. The response we got was that the children at that orphanage are not worked with…. essentially they are fed and clothed and that is about it.

My mommy gut said it was more, but we let it go. As shocked and upset as we were, this was our daughter and we were not going to turn our backs on her now! She had already lost one family in her young life, we would not have that happen again. We just prayed, leaned on the support of our fellow travel group and relied on our guides to assist when they could. It was a long 2 ½ weeks in country. I was anxious to get home with her where we could start a routine and start figuring out who our girly really was.

Fast forward to today. She has now been home 19 months. Our sweet girl – who is still to this day just full of joy – is now 9 years old but functions at the level of a 2-3 year old. She does not speak in clear sentences and speaks only in rudimentary two word groupings with lots of babble in between. She has no concept of math or numbers or counting. She can’t read but can recognize the letters of the alphabet! She can’t do zippers, buttons or snaps. She is truly a toddler in a 9 year old’s body.

After numerous medical appointments – and a fabulous developmental pediatrician who agreed that there was more to her delays than just neglect/institutionalization – we were able to get extensive genetic testing done. My momma gut was on target as usual! There indeed was more to her medical story. It turned out that our sweet girl has a rare and fairly “new” genetic neuro developmental disorder called FBXO11 disorder (it doesn’t even have a fun name). It explains so many of her delays and behaviors.

We still do not know what her future holds. Our reality is that she may very likely live with us forever. One of our “fears” when we completed that medical check sheet back in 2016 is now a possibility. But God knew what he was doing. This child has rocked our world, turned it upside down. There are days that bedtime can not come soon enough… but the joy she exudes on a daily basis is just amazing. Everyone who spends even just a few minutes with her proclaims that she has so much joy and is a blessing to be around.

We refer to her as our beautiful little earthquake… she shook our world up in a beautiful way.

Our unexpected was truly unexpected. It rocked us to the core. I wouldn’t change a single thing though. Not a single minute. Take that leap of faith, beyond the unexpected, and trust your Momma gut when things seem amiss. Fight for these beautiful children and the rewards will come back ten fold.

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7 responses to “More Than We Ever Expected…”

  1. Angela says:

    So beautiful! Thank you for sharing !

  2. Tara DuBose-Schmitt says:

    We are living your life; our daughter with “developmental delays” actually has Williams Syndrome. She is indeed a toddler in an 8 year old body, joyful but relentless. It is not a Hallmark movie.

    • Jen says:

      I am so glad to have friends who “get it” and whom I can lean on when we have those days that just make me want to scream. I pray that you have a good support system too!! We have to stick together because NOBODY else understands our lives!

  3. Sherri Ledford says:

    Great message from a momma’s heart. Johanna is a lucky girl to have you as her momma. I’m proud to say you are my sister!

  4. Beth Renko says:

    Thank you for sharing. So happy for you all! God has a special place in heaven for you and your husband. God Bless you for not giving up on this sweet beautiful child. God knew you were the right family for her! She’s just so happy and beautiful!

  5. Hayley says:

    She is such a sweetheart who deserves to be with a family who loves her very much!!! God made her special and he loves her very much!!!

  6. Shelby Watson says:

    I saw Johanna on SBSK and I fell in love! You guys should do vlogs on YouTube like “SixBlindKids“ and “Angie and Ruby!” I’ll be your first subscriber.

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