When Lamp was a baby we were sent to many doctors appointments. Yes, sent. As in, they told us where to go and who to see because we had no idea. Orthopedic surgeons–some who specialized in upper limbs and some who specialized in lower limbs–a geneticist, gastrointestinal or GI docs, and also physical and occupational therapists. Since we had no idea who to see or even why in some cases, the direction of the hospital (meaning a team of doctors) was a huge relief. I didn’t think about any of these appointments before she was born and it was nice to have hand-holding in those early months.
The orthopedic surgeon we saw in her first year seemed genuinely interested in Lamp from a medical standpoint–he and his colleagues had told us months before that they had never seen anyone like her–and my memories are of him circling her curiously, spitting off medical terminology and when I asked for clarification he’d say, “Oh that’s just a fancy way of saying…” in a condescending tone. I also quickly learned that when you have a baby like Lamp you don’t ever see a doctor. You see a team of doctors, residents, and nurses who all squish into the room anxious to see your sweet little anomaly.
We eventually moved to Texas while my husband served in the Air Force and the hand-holding to a certain degree stopped. (In another sense it continued, but that’s neither here nor there.) And so I made an appointment with the military orthopedic surgeon. I sat Lamp on his table and he just stared and sorta gawked. He was asking me all the questions and it was pretty clear to both of us that he was not the right doctor for Lamp. I felt lost. She wasn’t sick and didn’t need immediate help, but at the same time we needed direction and projection in her care.
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Wow Miggy, what an amazing blog and series you have. I am a regular reader but don’t always comment.
I love these spotlights and I have learnt so much. Reading about some of these online just isn’t the same like when you hear from an actual person living through it. Keep doing this wonderful job.
And Leah, thank you for sharing your life story with us.
Thank you Pal. I so appreciate your words of support.
Great interview— thanks to both of you!
Thank you Leah for sharing your story.
I learned a lot . Thank you both! <3
I loved reading this story. Every time I hear a person’s story, it changes me. Leah, thanks for being so real. Even though you’ve been through so much, I can feel your grace for others shining through. I love the scriptures you shared, and your heart. Thanks.
“Every time I hear a person’s story, it changes me.” YES.
Thank you Miggy. Thank you Leah. I love your story and how beautifully you captured the idea of gender being non-binary. This statement of yours… “I’ve struggled with the fight many people of faith take up over the issues of gender and sexuality. I feel it’s not a fight for them to make.” …resonates with me and I wish more people had exposure to different perspectives. THIS is one of the most powerful stories I’ve read.
I love this quote and feel it applies to many special needs families as well – “Raising [an Intersex kid] is just like raising any other kid. It’s raising the rest of the world that’s the problem.” Thank you Leah! I learned a lot from this interview.
It’s a good thing Miggy’s helping to raise the rest of the world.