We are now the parents of a child with Osteogenesis Imperfecta (brittle bones) and I have been surprised, amazed, and relieved to know that her label is unknown to her. That first afternoon when she was placed with us was scary. I didn't let our guide leave our room until I had taken Willow to the bathroom without anything bad happening. Her limbs are very bent and she has scars running down her thighs. She also has a 45 degree bend in both shins. I had seen pics from 6 months earlier and she then had only one bent shin so this was a shock.
I was surprised at how easily she pulled her pants up and down over her legs. She let me help her with the top but was very protective of her lower limbs. I tried to pick her up the way I was taught but she wanted me to scoop her up like a baby. I had to trust her to know what was best. I let her lead on how she wanted to move, be lifted, bathed and dressed.
I knew that I would be lifting and transferring her and that she weighed around 50lbs. After multiple times to bathroom and up and down in chair I began to pray that my back would hold out. I am getting in my share of squats everyday and looking forward to advice on how best to provide for her and me regarding this.
Though I needed to learn about her needs I also needed her to see me as the mom. She was very resistant to this and tried to manipulate on all fronts. Though I was new in the field of "mom to a child with a medical need," I was not new to being "Mom." I have had many strong willed children and I knew I couldn't let her medical need dictate our relationship. This meant I couldn't treat her behavior as if she was fragile. When we told her no and she pinched or bit, I had to gently but firmly remove her hand. When I put her on the bed to keep her from getting into something dangerous or destructive (think 2 years old) I couldn't let her know how nervous I was when she'd scoot to the end of the bed as if to jump. I was ready to leap in order to save her but stood my ground until she would recognize the danger herself and back away. Thank God. This was an important battle; if she had won, we would have been held hostage to her special need.
Since returning home she has amazed me with what she wants to do. She has asked to go to the playground, kayaking and swimming in our pond. She has tried to go down our stairs but luckily realized it was a bit too much. She loves to be outside and who can blame her since she probably never has been. She toilets herself, dresses herself, washes herself and brushes her teeth.
In our first 48 hours home, she became ill and needed to be hospitalized. This was very scary but I believe it had some positive outcomes. She had to depend on me and I learned how much she's already been through (multiple scars on her hand from IVs). I learned that even though I just met her a few weeks ago, I am still the person who knows her best and has her best interest in mind.
Her siblings have surprised me by not focusing on her abnormal limbs but rather on forming a relationship. They are learning right along with me on what they can and can't do. Life will be crazy and difficult for a while. It will never be safe or normal again but I know that I will see joy and love and for this I am thankful.
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