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When we met Ruby in September of 2011, we had never heard of Osteogenesis Imperfecta (OI). Ruby was 6-years-old and we had just moved to Langfang, China to work at a foster home which cares for children with OI. It really doesn't take long to look past the wheelchair, walker, bent arms and/or legs, small stature or whatever other complications from OI they might have, to see the child who needs someone to love them. They play, laugh, eat, cry, feel pain, and love just like any other child you know.
We learned that there are a few places in China who know how to care for a child with OI. And even in those specialized facilities, a child with a physical challenge and no permanent family is faced with a limiting future. OI is often referred to as "brittle bone disease", and often those with this diagnosis will need the aid of a wheelchair or walker and will experience numerous breaks and franctures of bones throughout life.
Getting around will be challenging, there is no doubt. However, the lack of family supports and a secure home, coupled with living in a developing nation, can make living with OI extremely difficult. I have learned that there is much you can give them, but there is even more that they will give you! They fill your heart with much greater compassion and understanding than you had before. They bless you with smiles, laughs and kisses. They teach you to appreciate small things and be thankful for them. Carrying them to the bathroom, as you sometimes will need to depending on their age and ongoing surgeries, they challenge your heart to see others needs as more important than your own. And they also see others needs more quickly than you might.
After we brought Ruby home, we were accepted at our local Shriners Hospital immediately, no problem. You will want to check into what medical care in your area is available. We are still learning how to find out what Ruby needs, anticipating her future needs and what is available. It has been very helpful to connect with others in our community who also have OI. They are available for a phone call, are great resources, and have even visited when we were in the hospital. There are several facebook pages that are helpful (OI Parents, Parents of Adopted Children with OI, etc) and you will get quick responses from families who have experience and/or just want to encourage you.
There has been much we have needed to learn, even after serving in a Chinese foster home for OI children for over 2 years. In the United States many things are done differently. And having a child with OI in our home isn't the same as caring for a number of children in institutional care! For Ruby, part of the healing, hope, and good attitude that she possess comes from knowing that she now has someone there to lovingly comfort and help her. Before she was our child, she would get hurt and cry pitifully, sometimes even calling out "mama, mama" over and over. She had no mother to comfort her then. I'm so honored to be her mama now. I hear her, comfort her, love her. And I receive the gift of her love and the joy of loving her as my daughter.
Ruby continues to bless us and stretch us. We didn't know how much joy would come into our lives through our 2 adopted daughters! And they are both in wheelchairs! Our lives are more difficult, more challenging and filled with more joy than we ever anticipated. When we think of our lives previously compared to now, a lot has changed and we wouldn't trade this dark eyed darling for anything!
Click the image below to view waiting children with Osteogenesis Imperfecta
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