Our littlest love, with us now for three months, has Osteogenesis Imperfecta (OI), also known as brittle bone disease.
Adopting a child with OI was not something we set out to do, nor was OI something we had ever been exposed to or educated about, but when Tessa Kate’s adorable picture appeared on the China Waiting Child Advocacy Facebook page in April 2015, with a descriptor of OI attached, it suddenly became a medical condition that was front and center in our minds.
The post stated that her adoption file was in the process of being prepared and that she was going to be designated to Holt International, which just so happened to be the agency with whom our dossier was logged into China. I eagerly called Holt to inquire about this child but was told that they had no knowledge of her and did not have her file. Though months had passed without a match and I continued to see the precious faces of children needing families on the advocacy pages, I decided to take a step back from “searching” for our third child and wait for our agency to match us, as had happened with our first two daughters from China.
Much to our surprise, we received a call from Holt in September 2015, where they stated that they had only just now received Tessa Kate’s file and that we were being offered the opportunity to review the file first since we were the ones who had inquired about her back in April.
Holt sent us the electronic file on Tessa Kate and, as my husband says, we were pretty much “done-for” the minute we laid eyes on her pictures. If the first picture of her shallowly prompted me to reach out to Holt for her file, these next pictures were sealing the deal. There she sat, drinking a bottle, with the sweetest little mop of black hair complete with a red barrette securing it from sweeping across her forehead.
I wanted to jump into the picture, scoop her up, hold her bottle for her and never let her go.
But we needed a reality check. OI is a serious and chronic condition. There are varying types and severities, but the reality is that just because we were going to bring her home – give her nourishing food and love and medical care – that the OI would suddenly disappear.
She had had countless femur breaks and at age three, she still wasn’t walking. We had to consider that she’d be wheelchair bound for life. Perhaps we’d need to move to a house that was handicap accessible. Certainly our four story house, built in 1928, was not fit for a child in a wheelchair.
We had so many questions… wondering what life with a child with OI might be like…
How would we keep her safe?
Would I constantly have to play bodyguard?
Our two other daughters, then ages six and four, were very active and playful.
Would they hurt her accidentally when jumping around?
We were social and enjoyed getting together with our friends and their children and our family’s posse of 17….plus toddlers and school-aged children.
How would we navigate a child with OI joining in?
Would she ever be able to be independent going to the bathroom, showering or getting dressed?
Would I break her when changing her diaper or changing her clothes?
One mom of a child with OI told me her daughter had broken her hand when pumping the shampoo bottle.
Would I spend every moment anxious about the next break?
Would I spend every free minute getting x-rays or sitting in waiting rooms?
Would my other children feel neglected because of the time I’d have to put into caring for a child with OI?
Not all of our questions could be answered but we gained so much valuable information from the Osteogenesis Imperfecta Foundation and also from individuals who shared their experiences living with OI or parenting a child with OI on several Facebook groups.
Parents of Adopted Children with OI
Osteogenesis Imperfecta (OI) Foundation
While reading factual information about a medical condition was helpful, we gained the most by talking to people who were actually going about daily life with this condition or parenting a child with OI. We reached out to surgeons, physical and occupational therapists, pediatricians, and specialists in the OI field to get their perspective. However without being able to evaluate her in person, and with very limited information on her condition, the doctors couldn’t give us much feedback on Tessa Kate’s level of severity or prognosis. From our research we knew that bisphosphonate infusions (to help strengthen her bones) and surgery to place rods in her leg bones were likely in her future.
We pondered and prayed and continued to pour over her pictures. We just couldn’t imagine walking away from her. What would her life look like if she spent the rest of it in a crib in order to keep her “safe” from breaking? That kind of existence made me sick to think about.
Ultimately we decided that if we said no to her, it would be out of fear. Fear of the unknown and fear of what price we would pay (how selfless were we willing to be?) by having a child with a disability of this nature. I don’t think it was ironic that in the months leading up to Tessa Kate’s referral, I had been claiming for myself and my family God’s word that He didn’t give us a spirit of fear but of power and love and self discipline (2 Timothy 1:7). Laying aside our fear, but certainly not throwing caution to the wind, we prayed for wisdom and chose Tessa Kate to be our new daughter.
The weeks prior to our departure for China were filled with excitement, anticipation, and anxiety about the unknown. I’ll never forget the encouraging and calming scripture spoken to us by our friend and pastor:
Ephesians 2:10 – “For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.”
There was no need to be anxious. God had prepared everything in advance surrounding our adoption of Tessa Kate. We could rest in that knowledge.
On February 22, 2016, we met our precious daughter, Teresa Katherine XiangPan VanderWerp, who we affectionately call Tessa Kate or PanPan. Under no less than five layers of clothes, was her twenty pound, delicate frame. Her tibia was bowed like a rainbow and her femur with repeated fractures bulged on one side. Her sclera was blue.
While one of our other daughter’s file turned out to be incorrect (a diagnosis of cancer) there was no doubt in our minds that Tessa Kate’s diagnosis was spot on. I was so nervous about handling her. I desperately wanted to avoid hurting her and without knowing her type and severity, I wasn’t sure how fragile she would be.
My husband was truly a gift from God the entire first two weeks we were in China and getting to know our daughter. He gently and fearlessly changed her diapers and clothes and carried her to and fro. While I felt like a ball of nerves inside, he selflessly and dotingly took care of all her needs. We let her have freedom and watched her scoot all around our hotel rooms exploring and playing with her sisters, all the while hoping she wouldn’t break.
I wanted to trust God with her health but it was a battle to do so.
A few days into our life as a family of five, I was sitting in a Chinese hotel lounge with Tessa Kate, playing with her and eating snacks all the while making private, anxious calculations in my head about how many more days until we’d get back to the States… how many more days until we can get her to the doctors so that they could answer my questions about her fragility, etc.
Instead of enjoying these moments with my new daughter, I was wishing the days away so that I could “get answers” and my nerves could be calmed. Then a perfect stranger walked up to me and interrupted my anxious thoughts. She introduced herself and through the course of talking with her, she shared that she was in China adopting a son who was 13 and wheelchair bound. This was not her first special needs adoption either. She was a mother to many children at home in the USA (adopted and biological) with varying needs.
I found myself pouring out my concerns about my ability to care for Tessa Kate… she encouraged me to take one day at a time. We talked about the Lord’s prayer and how Jesus teaches us to ask God for our “daily bread”… not weekly bread or monthly bread. I don’t need to, and shouldn’t, worry about the future, be it tomorrow or years from now. I’m not even guaranteed tomorrow so why worry about it? I can take each day with Tessa Kate as it comes, trusting God and asking him to provide what I need for that day to care for her and the others in my life.
Fast forward three months, and our amazing three year old (who is the size of an 18 month old – small size and short stature being markers of many types of OI) is my joy.
In the midst of the challenges of caring for her (most of which are due to her anxiety and the trauma of being adopted and losing everything she knew, and not related to her OI at all), I am experiencing true, God-given joy. I find it fascinating that I prayed for joy for me and my family and God delivered it in this twenty pound package. Who would think that one of the most nerve-wracking circumstances I have ever faced would also be what brings the most joy?
We went to our pediatrician the first week we arrived home to assess Tessa Kate’s overall health. She is very small and subsisted on a bottle diet in China. We have been working to expand her palate and provide her body with nourishing foods so that she will reach her full potential, although she will likely always be very small. She is on high doses of calcium and vitamin D administered through daily chewable vitamins.
She is very active, crawling and scooting all over… spinning on the sit and spin, riding on her feet propelled trike, and even doing full body rolls around the room. She can climb stairs – though it gives me a heart attack. She knows her limits and does not try to stand or walk. We learned that she broke her femurs while walking and holding onto the cribs in the orphanage so she is likely afraid to try again.
She is a delight to watch as she plays and explores. There is nothing like seeing a child who was deprived of stimulation, experience new and exciting things. When we go on walks, every dog, squirrel, and car is something to be exclaimed over. Baths with bubbles and toys are begged for. Accessorizing with sunglasses and shoes and pony tails is insisted upon.
She is loving life and we are loving her.
Two months after arriving home, we took Tessa Kate to an OI specialist in Chicago at Shriner’s Hospital. There she was officially diagnosed her with moderate OI. Tessa Kate will be receiving bisphosphonates intravenously this month and is scheduled for rodding surgery in late July. It breaks our hearts to think of her being in pain or not understanding what is happening to her with the surgery, but we are moving forward with her best interests in mind.
We pray that the medicine and surgery will decrease the likelihood of fractures and provide her with what she needs to be even more mobile. There is the potential that she may even learn to walk independently.
Since being home with us, she has had one compression fracture in her back as well as a micro fracture in her femur. Neither of these injuries kept her out-of-commission for long and both injuries happened while she was seemingly doing nothing.
As we get adjusted and more comfortable to her physical needs and limitations, the emotional component of having a child with a physical disability has set in a little more. Because we love Tessa Kate so much, it is hard to watch her sit on the sidelines while her sisters run around at the park and navigate the jungle gym with ease. I want her to be able to join in. She doesn’t seem to mind at this point so I try not to let it bother me.
Three months ago she spent her days in a crib so I’m sure this is a significant improvement for her. It has been exhausting picking her up and carrying her all over and I injured my back from all of the lifting and carrying so I’m learning to be more intentional about how I bend and lift and care for her.
We are also navigating new waters with balancing letting our older kids “be kids” (jumping around and playing somewhat wildly) and asking them to be careful and limit their movements around Tessa Kate in order to keep her safe from injury. She wants to join in, and they want to play with her (their relationships are so precious and sweet), but it can be very stressful for me as the full time, stay at home parent, hoping they don’t accidentally hurt her during their play.
She requires a lot of attention, more so because I provide her comfort and security during a time of huge change for her than because of her OI, and I have felt bad about that in regard to our other children. Giving myself grace and giving the older girls special time alone when possible, and knowing that this is just a season while we all adjust, has really helped. Our older daughters are learning in depth about compassion and sacrifice through the adoption of Tessa Kate.
In the three months since knowing Tessa Kate, I have really calmed down about her “fragility” when it comes to changing her diaper and changing her clothes or watching her scoot around like a race car (she’s quick). I do feel like her bodyguard when we are around other children or adults who always want to touch and squeeze her because “she’s so cute!”
I’m sure that as more time passes, I will learn even better how to handle social situations so that they are positive experiences for everyone involved. And now that I’m living the life of parenting a child with OI, I will have better questions to ask other parents who have parented a child with OI at this age and beyond…for example, how to navigate sending Tessa Kate to school and keep her safe at the same time. But, that is not for today.
Today is about loving Tessa Kate.
Teaching her that we are here to stay.
Showing her that she can depend on us to meet her emotional needs as well as physical needs to the best of our ability.
Thanking God for the joy that she brings.
Today is about praising God for the love, personality, and spunk she adds to our family.
It’s a day to answer her requests for “kishes (kisses) and uggs (hugs)” a million times over.
Today is about asking God to provide our daily bread as we care for the children he has lovingly bestowed on us and entrusted to our care.
And today is about thanking God for not allowing fear to rob us of the gift of this child.