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 had many medical problems, and lived with us, until her death in May of 2011. I have chosen to use pseudonyms here to protect our family's privacy.
Why don't I find you on Facebook or Twitter...? Because overall, I actually try to avoid social media as much as possible. I don't personally have a Facebook or Twitter account, neither does TW. Twinks has one of each, but both are under another pseudonym; she was forced to create them when a college instructor made it a requirement for a class. None of us really feel the need for it, and as time goes on, we are increasingly glad that we have a very small RL presence on the Internet.
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 achieve a semblance of "normality" much to everyone's surprise.
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 personal favorite, Twinksy-Winksy...
What about your Mom? My Mom was suffering from Multi-Infarct (or Vascular) Dementia. She was smart, funny, educated, artistic, patient, beautiful, loving, and sweet, and I can only hope I am half the mother to Twinks that she was to me...
And who is The Wrench? He's my husband of nearly 25 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) who holds a valid A&P ticket 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 anyway, so it really doesn't matter, does it?
Why did you start writing this blog? Originally, because I believed that there were other quietly desperate mothers and fathers and daughters out there. I continue to blog now because it is a place for me to write, to vent, and to have conversations that might not otherwise be had. 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 in 2005, I was probably the last person in America to jump on the blogging bandwagon (and, my personal prediction that since I did, tomorrow morning something "better" than blogging will come along, and I'll have to procrastinate on that, came true: see also, Facebook, Twitter, etc.) 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, in a flyover state.
Where is The Hospital (and Hospital City) that the Twinkle went to? Twinkle went 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? 5 of them, and we love those stinkin' old furballs so much that we can't help it. There were gerbils, too but they died of old age...
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 Twinks' pain, because it is my own. I carry her pain with me - when she hurts, I hurt.
This blog was originally about parenting a child who is disabled - physically handicapped - "challenged". Whatever you want to call it.
Twinks 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.
Twinks 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. At the time I started writing here she was barely 11 years old, and so the specialists who treat her, including her Pain Management Team, were hesitant to begin prescribing adult-intended pain medication for her. Finally, Twinks has many health issues, and takes many prescription drugs for her heart, her asthma, and her immune system. Everyone involved in Twinks' care (including Twinks herself) have decided that for the moment, she is better off not using a pain medication that will possibly cause other side effects.
Twinks has custom shoes, custom inserts, and bi-lateral AFOs (braces) to help hold her feet in place, which helps to minimize the "bone-on-bone" pain that she suffers from the absence of cartilage.
As of this update (February 2013) Twinkle is successfully managing her Fibromyalgia, and is doing as well as can be expected for a busy college kid. Her pain levels mostly under control, and we (her Daddy/The Wrench) and I are hopeful that by following the recommendations of her (many) specialists, we can help Twinkle live as normally as anyone possibly can.
What happened to your Mom? She passed away on May 26, 2011. We knew shortly after she came to live with us that her condition was terminal. And as difficult as that is to write, the reality was that there was nothing we could do, but love her and care for her. Regardless of what the doctors did or tried, she continued to have "micro-strokes" on a regular basis; we simply tried to remain grateful for each day we had with her.
I am the Great and Powerful Oz... as long as I can stay behind this damn curtain...
