Pre-Order Now Available for, “Becoming a Medical Mom”

Pre-Order The Book

It’s been a while since I mentioned the book, but I wanted to let you all know it’s coming at long last! It’s available for pre-order right now. It’ll be released on October 15th, in less than a month. I know, normally pre-orders last longer than that, but my life is just too unpredictable to commit to a specific date a lot of times.

A “Medical Mom” is a mother of a child with medical difficulties. Typically these mothers have been through one or more hospital admissions. Their child may or may not have a diagnosis. At first they’re frazzled and unsure, but over time they become staunch advocators for their children and their medical needs. My goal is to reach the frazzled and unsure beginners and expedite their development into the advocates their children need them to be.

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The Difficulties of Being a Parent to a Child with Hypotonia

At six months our son was just starting to lift his head. At sixteen months his arms were still too week to support crawling, despite being in occupational therapy (OT) for over a year and physical therapy (PT) for three months. We did tummy time. We tried every trick in the book recommended to us. With the help of OT and PT he’s not falling further behind, but he’s certainly not catching up either.

He struggles with what’s called Hypotonia, or low muscle tone. He’s much more flexible than you would expect a child to be. He can put his feet up by his ears without even straining and he’s well over a year old. This flexibility causes him to need additional strength to keep his muscles in place, and he can’t make progress on physical milestones by himself because he lacks the strength to lift the weight of his body and head without significant assistance. Thankfully, with help he does get stronger. However, if you left him to his own devices he doesn’t work on his physical milestones like you would expect. In fact, he doesn’t work on them at all.

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Information to Share with Family Members and Friends

Some tubie parents are fortunate to have understanding family and friends. The love and support that comes with this arrangement is beyond value. For most of us, that doesn’t seem to be the case. The vast majority of parents with tubies are repeatedly told how much better of a job others could do if they were in our position. There are many things said so awful I don’t feel comfortable sharing them. No one deserves to be treated like this, much less parents of a child with a serious medical condition.

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