When my husband and I began our adoption journey in January of 2013 we, like most pre-adoptive parents, had a profile of sorts for the child we were hoping to adopt. We knew we wanted to adopt from China. We were hoping to adopt a girl and we knew we wanted to adopt a child somewhere between ages 3 and 6. Then came the medical checklist. What were we willing to take on? What did we feel like we could handle?
We agonized over that list and eventually we marked the things we felt comfortable with. Cognitive delay was not something we were considering at that point. I’m not even sure it was on the list.
And then one night I happened upon this face while looking at our agency’s waiting children list and something about her face just took hold of me.
She was 4 years old and her listed need was something we felt comfortable with. We asked for her file and put her on hold. We prayed over a weekend and then called the IAC to talk with them. We were fortunate that the IAC doctor had actually met her on a trip with our agency and we were able to get first hand information. My husband talked with the doctor first and called me with sadness in his voice. She can’t talk. At all.
Completely nonverbal with no known reason other than severe neglect. That was not something we had considered. It seemed to be a deal breaker. I was heartbroken. I talked with the doctor a few days later. Her listed need was mild cerebral palsy and she did seem to have some gait and balance issues but, and I still remember her words, we needed to be prepared for a child with cognitive issues. That was not even on our radar. We were sad and fearful and praying.
We also began to learn more about the conditions at her SWI. We were concerned for her. We had been told there was a video and updated pictures and when we received the pictures it showed us a child in decline. The original picture was taken just after she arrived at the SWI. A year later she was very much worse off.
We were struggling. We did not want to let this file go but could we handle this? We were granted extra time while we waited on the video to come. It would take another week and in that time of intense prayer we came to a pretty obvious conclusion. It isn’t about us. Did we feel that this was the child we were meant to parent? If the answer to that question is yes then we make the choice to parent her. We make the choice to put aside our own expectation of what this is going to look like and we say yes.
We had to recognize that this meant we would likely never have an empty nest. We had to put other people’s ideas and expectations out of our line of sight and put the Lord’s expectations for us in front of us. I kept going back to Luke 12:48. To whom much is given, much will be required. We usually think of that in material terms and certainly we are comfortable, but we have been given so much in terms of family and support and love. Much was now, it seemed, being required of us.
And then the video we were waiting on finally came. Thirty seconds of a terribly skinny 4 year old walking away from the camera and then turning around and walking back.
We were hooked. We submitted LOI and then in November of 2013 we traveled to get our sweet Sarah.
Although she was 5 years old she was an absolute baby in every way. She was clearly very delayed and completely nonverbal. She was also hungry to be touched and loved.
And she was just plain hungry!! Once home we had her evaluated and she was on the level of about a one year old. While some of her delays and behavior were typical institutional delays some were clearly lifelong cognitive delays.
So what does real life look like with a now almost 7 year old with cognitive and developmental delays? It is joyful and challenging. She is now on about a 2.5-3 year old level. She does wear bilateral hearing aids but speech progress has been painstakingly slow. She knows about 25 signs and has recently begun picking them up very quickly. She can say about 5 words and makes an awesome monkey sound.
Her receptive language is increasing every day. She is repeating kindergarten this year in a self-contained special needs class. She has become more and more certain of her place in our family and loves each of us with her whole self. We often laugh because based on pictures we thought she would be very timid and mild and shut down. Sister is LOUD and has a serious fight response when she feels threatened in any way. This is one of our biggest struggles.
However, we rejoice every day over the little things she accomplishes. She can run and climb and hop and jump. She can participate in Sunday school and VBS. She is getting better and better every day at communicating her wants and needs effectively to us and others, which has decreased her frustration level (and ours) significantly. She is still a lot like a baby in many ways but we are beginning to see the pace at which she learns new things quicken. Progress is sometimes slow, but there is progress. She will never be “typical.” And that’s okay.
What is the hardest part of having a child with cognitive delays? Can I be honest here?
It’s other people. Sarah does not look any different right off the bat. So when she makes funny noises or doesn’t respond when asked what her name is or how old she is, it makes people uncomfortable. People who don’t know her very well often don’t know the extent of her challenges and say things like, “Can’t you do more than grunt when I ask you a question?” People often assume she is going to break things or tear things up when she touches anything and rush to take things away from her. This does not go well with her serious fight instinct. People make assumptions about her.
Adults have honestly been more rude than children. I never mind a child asking why she can’t talk and I don’t mind discussing her challenges with adults. Rude, insulting comments in front of others, including other children, are hurtful and reinforce her differences to those listening. Stares don’t bother me anymore. She is thankfully unaware of them.
Our sweet girl has been through a lot of trauma and like all kids from hard places she has had to deal with the fallout of that. It can be hard for her to process and she can’t verbalize any of it and that is challenging, but what a joy it is to watch her shed that fear and anxiety slowly more and more each day. It is amazing to watch her squeal with delight when her big brother gets home from school because she knows that he will wrestle with her. It is amazing to watch her sign the names of every picture in a book.
We delight when she conquers matching pictures or drawing a smiley face. She is the delight of our house and she brings us all so much joy.
There are days that it takes my breath away that we almost said no out of fear. Fear of what adding her to our family meant for our other children, fear of what it meant for our future, fear that it was something we couldn’t handle. Isn’t that when God shows us the end of ourselves and the beginning of him? Less of me, more of Him. Every day I tell myself this. Less of me, Lord. More of you.
We come to the end of what we can handle and we let God show us what is even better. And what was best for our family was this little girl. She has stretched us and grown us. She has made me more patient and more sensitive. She has softened our hearts for special needs children and she has broken them for the fatherless. Every single life has value.
Saying yes was scary, being her mother is not. God has used this once tiny, silent girl to change us completely.