Tag Archives: support

I’m Thankful For…

November 26, 2015 By in U.S. Thanksgiving Tags: , , , , Leave a comment

Today I’m thankful for:

  1. All of the progress my son has made with his therapy. He’s gone from not being able to hold his head up until 9 months to walking at 20 months!
  2. Having the financial resources and enough health insurance to enable us to afford our son’s medical care.
  3. Everyone who has supported me along the way. Friends, both near and far. Parents, Grandparents, Sisters, and other family members too numerous to mention.
  4. The patience and strength to handle the last seventeen months.
  5. My readers who, at the end of the day, make my writing more than just a few notes on a website or piece of paper. You are what make my thoughts and feelings come alive again after they’ve been written.

Thank you!

Planning for Thanksgiving

November 12, 2015 By in U.S. Thanksgiving Tags: , , , , , , 2 Comments

No matter what your situation, the hustle and bustle can be a challenge. Our son’s vomiting and feeding tube add an additional level of complexity. Family drama on top of it all guarantees this season will be an especially challenging one. I’m certain I’m not the only one dealing with this, so I decided to share some of the things I’m planning in order to make the holidays as joyful as possible. I hope they help, for both of our sakes.

We’re hosting Thanksgiving this year. It’s the only way to avoiding missing out on the food trying to manage the toddler’s tube feedings and vomiting. Dinner is the high point of Thanksgiving, and without me managing the kitchen it would be impossible to keep dairy and eggs out of as many items as possible. This can be as simple as pulling our son’s food out before the butter goes in, but that’s difficult to do without being underfoot in someone else’s kitchen (mostly because wherever I go the toddler is not far behind).

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My Child is Sicker Than Yours

October 18, 2015 By in Caregiver Tips & Tricks Tags: , , , , , , , , 3 Comments
My Child is Sicker Than Yours

I ignore it as much as possible, but every once in a while I stumble across a conversation involving this awful competition. It goes something like this…

“My child has hypotonia…”
“Oh, so does mine! She also has a trach and a gtube”
“Well, he doesn’t just have hypotonia. We’ve been struggling with…”

The discussion continues. By the end, the entire world knows both children’s full medical history, even if they don’t know their first names. What on earth is the point?

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Life Goes On

September 23, 2015 By in Our Family's Journey Tags: , , , , , , , , Leave a comment
Life Goes On

As some of you have already noticed, I’ve been publishing a little less frequently this past week or two. This will probably continue through early October because, well, life happens. Our son is continuing to do well. We have a lot of doctors appointments in October, but nothing we can’t handle. Unfortunately, our son’s need for additional attention and care doesn’t preclude other things from happening.

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

September 21, 2015 By in Book Announcements Tags: , , , , , , , , , Leave a comment

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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PTSD in Special Needs Parents

August 16, 2015 By in Caregiver Health and Wellness Tags: , , , , 5 Comments

PTSD (Post-Traumatic Stress Disorder) is typically heard in the context of war veterans. You can develop PTSD from any experience that’s painful or upsetting, including caring for a special needs child. How does this happen?

  • Long NICU stays where the child is on the verge of death.
  • Babies so pre-mature they need constant 24/7 care to survive.
  • Hospital admissions for life-threatening infections.
  • Finding out your child has a life-altering and lifespan shortening diagnosis and watching them fight it every day.

There are many more examples. I wanted to name just a few to make my point clear. Almost every special needs parent is at some level of risk for PTSD. They are constantly exposed to situations that are extremely stressful where the results are completely out of their control. All the while, something bad is happening to someone they love more than anyone else in the world (except their other children of course).

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