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| When I got home, Jamie & Brady were playing on the floor. Did I want to go in there and blemish his perfect world? We walked in and he knew I had been crying. I told him something was wrong with Tristan. And then I just said it. "Tristan has dwarfism." Jamie reacted how I thought he would, "What do you mean dwarfism? My family is short." I told him, "But he's disproportionately short." He just looked at Tristan trying to soak it all in. "His doctor is wrong." So I gave him a handout she had given me. On it was a picture of what the medical community calls "trident hands", but those were our little starfish fingers.That was when we knew. It was all in those little hands. It took Jamie a while to want to know more about Tristan's condition. I dove into the internet finding comfort in the beautiful happy faces of infants, children & adults with dwarfism. It is up to us to point Tristan in the right direction and make him a happy child, just like any other child. Why would that be any different? |
| Then came all the hustle & bustle of getting a defininite diagnosis. There are no dwarfism specialists in our area so we saw a geneticist. They drew blood and found the gene for Achondroplasia. That is our son's diagnosis. What a big word for such a little guy! Then came the MRI, CT Scan & sleep study, which thankfully were all essentially normal for a child with Achondroplasia. There are health problems associated with Achondroplasia. There is a 7.5% risk of death in the first year of life. This risk is associated with spinal cord compression & sleep apnea, which had already been ruled out, but it's a thought that stayed with me until his first birthday, and what a celebration it was! |
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| Tristan hit all his milestones late, as do all children with Achondroplasia. They suffer from hypotonia (low muscle tone) so they must work harder at simple tasks than does the average child. He sat up unassisted at 15 months. And stood on shakey knees the very next day. He began walking at 20 months, and continues to have daily tumbles because he is so top-heavy. They have special growth charts for children with Achondroplasia. He has stayed right at the 50th percentile for both height & weight. |
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| We feel absolutely blessed to have the experience of raising a child with dwarfism. When I look back at our initial reactions, I think any parent would feel similar to the way we did, but now it seems like we were different people then and we overreacted. I still wonder what it will be like when he realizes he's a little person. I imagine it being a big moment, but realistically it will probably be like any other passing moment. It will be there and gone, but somehow his realization will make it different. |
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| What has helped us more than anything is joining Little People of America. We joined when Tristan was 7 months old. The members are amazingly supportive! It's like a big family reunion every time we get together. I encourage anyone who has a skeletal dysplasia to join LPA. It will open your mind and your heart to a world of wonderful people. |
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