Adopting a Child with Tuberous Sclerosis

April 14, 2015 April 2015 Feature CNS, Central Nervous System, epilepsy, Family Stories, seizures, tuberous sclerosis 1 Comments

If you have ever adopted from China before, you remember sitting at the table staring at that dreaded form asking you what special needs you thought you and your family could handle.

Filling it out seemed cruel. On the one hand most of them scared me to death and at the same time it filled me with sadness, as I felt I was automatically saying no to a sweet child who deserved a chance… by simply checking no.


While sitting there, my husband and I prayed over the list of needs. We prayed that the fear would leave our hearts, as we did not want to miss out on the blessing one of those special needs children could make on our lives. Checking off the ones we knew we were not ready and checking yes to those we thought we could, we came to epilepsy. There was one that read, epilepsy, “controlled by medicine” and epilepsy “not controlled by medicine”. I skipped over them both, feeling very sure I was not ready for “not controlled” by medicine, but feeling unsure even about controlled. But when I got to the end of the form we felt like we had said yes to so many, what are the odds that we would even get a file for epilepsy, and besides we had prayed we wouldn’t say no in fear, so we marked yes.

Wouldn’t you know it, the very first child our agency sent us was a child who had epilepsy, controlled by medicine.

Fear made its way to my heart pretty quick as I only knew of epilepsy from what I had seen on television – I envisioned our lives full of stalking this sweet child just waiting till she had a seizure! After praying over her file and having other friends pray for our decision, when it came down to it, we felt she needed parents and that is why we felt called to adopt. So we moved forward to being her home.

On the day we got our sweet girl it did not take long to realize that her seizure were not controlled at all. With in a few minutes of having her in our room she had a seizure and about five more through out that day. When we got her home we learned she actually suffers from Tuberous Sclerosis Complex. TSC is a genetic disorder that causes non-malignant tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. Like many other disorders, each case in each child varies. Some hardly show many signs or symptoms at all, some, like my Nina, are more severe. In our Nina’s case she has several tumors on her brain which cause her seizures. (See Tuberous Sclerosis Alliance )

In the beginning I struggled with being angry at China for her file being so wrong! After all, they said they did a brain scan – if that was true there was no way they could have missed her tumors right? But TSC is only now being rightfully diagnosed in the US how could I expect China to get it right? And to be completely honest, had I seen Tuberous Sclerosis Complex in her file, I know neither of us would have felt ready for that. No parent is when they hear of their child’s diagnosis. But God knew. HE knew what a joy and blessing we would have missed out on if we had said no to our sweet Nina.

I can not say this journey has been easy. I have learned so much about epilepsy and about Tuberous Sclerosis and I still feel like I am always learning something new. Nina’s seizures do not look like what you see on television (the majority of them anyway). We have spent a lot of time in and out of hospitals and doctors appointments. She had three brain surgeries back in November to have one of the tumors removed and we have a lifetime of EEG’s to monitor and figure out how to manage the seizures.

Her disorder is and will always be a part of hers and our lives. And I will be honest and say sometimes that thought is completely over whelming. But when I stop to think about what her life would have been if we hadn’t said yes, I am reminded how completely worth it all is!


Parenting Nina has changed me. It has changed how I parent, changed the kind of friend I am, the kind of wife I am and deepened my dependency on God. God has brought me sweet, sweet sisters in Christ who are walking similar journeys. Those friendships are so deep. They are more than shared laughs and trips to the mall, they are filled with joys, and sorrows, of futures and fears, of accomplishments and failures of triumphs and set-backs, and shoulders to cry on after many many sleepless nights!

I know before big hospital stays, or times when the weary journey is sweeping me out to the deep waters, my sweet sisters have a way of lifting me up and turning my eyes back to HIM. My marriage even seems stronger. Though I know it is not always the case, and some trials are harder to fight then others, my husband and I have grown even closer and deeper in our relationship to each other.

Before Nina, I was a very dependent on people, and in some ways I really still am, but when you have a child with such significant medical needs, you are forced to get tougher and to cry out to God for strength because in the end, He is the only anchor. Loving a child who is still learning to love and trust has grown me to love, despite my emotional feelings. And loving a child who has a special need that once terrified me has taught me to look at the heart. If you look at Nina’s heart you will be blown away!

Here in another sweet child who has the same disorder Nina does. This sweet three year old boy is waiting for a forever family who can love him through the hard times and the good times! Without a family to love them, and get him the help they need, children with this disorder do not stand a chance against it!

– guest post by Sara

One response to “Adopting a Child with Tuberous Sclerosis”

  1. Holly says:

    Thank you so much for your post! I’ve checked this site many times and never seen anything on TS. Our daughter from China is 8yrs old and has this crazy disorder. When we found her on the SN list she had a “well-controlled seizure disorder” but no other problems. She was diagnosed with TS four months after we came home with an MRI and thankfully she has never had a seizure- and doesn’t take any anti-seizure meds either. However she has mild autism, ADHD, and a moderate speech and language disorder. I struggled with being angry with China and then if I were honest, angry with God. But those feelings fade and we receive reassurance from Him that He will continue to be with our family daily to meet our needs. He reminds me- like you commented, that our children would not receive the care and support in China that they are able to receive here at home. One of our biggest challenges at this time is finding the best educational setting for her special learning and behavioral needs, but I know the Lord knows and will meet our need there too.
    Once again, thanks for posting. Your comments mirrored so many of my thoughts throughout the years! God bless you and your family as you walk this road He has called you to walk.

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