Monday, July 18, 2005


(original post: 07/18/05 - updated 07/17/08)

Answers you didn't even know you wanted, to questions that you didn't even know existed...

Who are you? I am a the mother of a child who was born with many medical problems. I am also the daughter of a mother who has many medical problems, and now lives with us. I have chosen to use pseudonyms here to protect our family's privacy.

What does "creeping towards normal" mean? It means what it says. We (our little family) are creeping towards normal all the time. Every now and again we actually get to reach out and touch it!

Is it Twinkle? Or The Twinkie? Or Twinks? How many kids are there? Just one. Her nickname started out as Twinkle, however our friend Art Lad "renamed" Twinkle as The Twinkie, in honor of one of his favorite snack foods. When she started to blog, The Twinkie chose that as her pen name. Twinks is a deriative/pet name for The Twinkie. You may also see other mutations/iterations such as: Twinkster, LaTwink, Twinkette, TwinkleToes and my new personal favorite, Twinksy-Winksy...

What about your Mom? My Mom is suffering from Multi-Infarct Dementia. She is still beautiful, loving, and sweet, however, she is quite literally losing her mind...

And who is The Wrench? He's my husband of more than 20 years. He's also my rock, my hero, my boyfriend, my lover, my best friend. Sometimes I abbreviate him as "TW".

What company does The Wrench work for? Sorry. That's classified information. As you will gather through a close reading of this blog, he is a certified wrench (a mechanic) in the aviation industry. Like Our Friend Chuck, The Wrench works for a Really Large Airline (although not the same RLA as Our Friend Chuck)

What company do you work for? Sorry. That's classified information also. I "retired" before Twinkle was born, and do only the occasional odd consulting job nowadays.

Why are you writing this? Because I believe that there are other quietly desperate mothers and fathers out there. Sometimes in the middle of the night it is comforting just to know that you are not alone.

What all is wrong with your kid? :::taking a deep breath::: Here's the short list, of the major health issues that Twinks has been diagnosed with:

  • Asthma
  • Arrhythmia/PVC's (Premature Ventricular Contractions)
  • Bilateral Tibial Torsion
  • Bilateral Femal Antiversion
  • Bilateral TEV Deformity (Clubfoot)
  • Leg length discrepancy
  • FMS (Fibromyalgia)
  • Scoliosis

Why did it take you so long to start a blog? Ha! If you only knew... There is great irony in the fact that I am probably the last person in America to jump on the blogging bandwagon (and, my personal prediction is that since I have now done so, tomorrow morning something better than blogging will come along, and I'll have to procrastinate on that) Actually, there are more reasons than I have time to post, and you have time to read. I finally settled on Blogger one night, and jumped in with both feet.

Where do you live? In the suburbs, just outside a major metropolitan area, somewhere in the middle 9/10ths of the country.

Where is The Hospital that Twinkle goes to? Twinkle goes to a specialty children's hospital that is located approximately 400 miles from our home. It is an eight hour drive door-to-door. Again, to protect our privacy, I will not name the exact location of this hospital, although I will tell you that it is one of the Shriners Hospitals For Children. (FYI: There are 22 Shriners Hospitals in the U.S. for children.)

How many cats do you have? Two of them, and we love those stinkin' old furballs so much that we can't help it. There are gerbils, too...

How can you let Twinkle suffer? Why don't you get her some pain medicine? Reading this blog, one might presume that Twinks is in inconsolable pain 24/7. The reality is that I write about Twinkles' pain, because it is my own. I carry her pain with me - when she hurts, I hurt. This blog is about parenting a child who is disabled - physically handicapped - "challenged". Whatever you want to call it.

Twinkle has good days, and bad days. When I started this blog (July 2005) she was in and out of her wheelchair. She could walk from the kitchen to the bathroom. She couldn't stand for more than about 15 minutes at a time, or walk for more than about 10 minutes at a time before she had to sit down.

Twinkle has already had so much over-the-counter (think children's Tylenol) pain medicine that she no longer responds to most OTC pain relief products. Because she is at the time of this writing 12 years old, the specialists who treat her, including her Pain Management Team, are hesitant to begin prescribing adult-intended pain medication for her. Finally, Twinkle has many health issues, and takes many prescription drugs for her heart, her asthma, and her immune system. Everyone involved in Twinkles' care (including Twinkle) have decided that for the moment, she is better off not using a pain medication that will possibly cause other side effects.

As of this update (July 2008) Twinkle is successfully being treated for Fibromyalgia, and is responding as well as can be expected. Her pain levels have dropped dramatically, and we (her Daddy/The Wrench) and I are hopeful that between treating the FMS and following the recommendations of her (many) specialists, we can help Twinkle live as normally as anyone possibly can.

What about your Mom? Well, her medical condition is essentially considered to be terminal. And as difficult as that is to write, the reality is that there is nothing to be done. Regardless of what the doctors do or try, she continues to have "micro-strokes" on a regular basis; we simply remain grateful for each day we have with her.

I am the Great and Powerful Oz... as long as I can stay behind this damn curtain...

1 comment:

ciara said...

thanks for sharing :) i think you and your husband are doing a great job parenting.