Tuesday, February 17, 2009

We may not have it all together... but together, we have it all.

I was in Jamestown last week because of a counseling appointment for Sam, and afterward, we took some time to browse the shops in the local mall. There was a little crafty store that sold plaques and candles and rustic-looking home decor that caught my eye, so I warned Sam and Kiki it was a "breakable" store and went inside.

Kiki immediately headed to a display for those peel'n'stick words for your walls ~ I don't know what they're called, but you know what I'm talking about. Since I rent an apartment, I don't know why I was browsing through them, but I'm glad I did. One of the sayings caught my eye and really hit home to me.

"We may not have it all together... but together, we have it all."

My family has been through a lot recently: we had a house fire in November, which meant we had to live with family for a couple weeks and then move into an apartment; Sam's been having medical issues which require several trips all over the place; Sam's also been having difficulties at school with behavior issues lately; I've had to take off from work to deal with the house fire and Sam; Kiki's starting speech therapy today; finances are extremely tight right now; my apartment isn't unpacked or settled yet... it's all just piling on and I've long since hit the point of being totally overwhelmed.

Not having the children's father around plays into it too. While their father was at first completely nonsupportive with Sam's medical issues, he's now coming around to agree that I'm right. But he's also 1,600 miles away right now too, so he's unable to shoulder any of the burden. And I have a feeling there will be more testing and trips in Sam's future as well.

This is why that quote hit home with me. I certainly don't have it all together. My house is in a constant state of disarray. My kids are frequently late for stuff because I'm so unorganized, or I forget about the appointment until the last minute (I've been getting better at that, thanks to my Palm Pilot!). We don't have a normal routine, because it's constantly being disrupted by trips and appointments.

But... we're together. We have our basic needs (food, shelter, clothing, and love) met. Sam and Kiki both know that while I'm not perfect and I forget some stuff, I'm always going to be there for them. They love me and I love them.

It's hard being Super Mom, but I've come to realize my kids don't need Super Mom. They just need me, a super mom.

Sunday, February 1, 2009

Idiopathic Toe Walking and the Shriners

Sam and I just got home from another trip to Minneapolis to visit the Shriners Hospital. My son has idiopathic toe walking, which simply means Sam walks on his toes. His orthopedic specialist prescribed serial casting (articles on serial casting are coming soon!), which involved six weeks of casts and traveling back to Minneapolis every other week to get them changed. But now, Sam is out of the casts and into AFO braces (again, articles are coming soon!).

I am so glad he is out of his casts! What a pain in the butt those casts were. Not only were they stinky, Sam was downright lethal with those casts. He killed several toys by stepping on them, much to Kiki's dismay. She learned very quickly to keep her toys up off the floor!

Sam's treatment would not have been possible if not for the Shriners. The Shriners pay for everything, including the transportation (in our case, Amtrak) to get to the hospital and back. Any medical devices (such as wheelchairs, braces, etc.) are paid for by the Shriners as well. The doctors there are the best and the whole atmosphere is geared toward making children comfortable. I'm so thankful for the Shriners. They truly are blessed people.

Because Sam's idiopathic toe walking and the Shriners (and even Amtrak travel!) have become such an integral part of our lives, I've written several articles on the subject:

Idiopathic Toe Walking: Definition, Symptoms, Causes, Diagnosis and Treatments
Do you have a child older than three who constantly walks on her tippy toes? Does your child bounce when he walks and runs? Is she unable to press her heel to the floor? These are all signs of idiopathic toe walking.
Click here for more...

Children with Disabilities: How to Deal with Teasing in School
If your child has a disability, he will encounter teasing in school. These are some steps to take to curb the amount of teasing your disabled child will have to endure.
Click here for more...

Shriners Hospitals for Children: Frequently Asked Questions
As my son was a recent patient at Shriners Hospital, I've been asked several questions in regard to the care at Shriners Hospitals for Children.
Click here for more...

Who Are the Shriners?
Okay, Shriners drive little red cars in the parade and wear funny hats. But what are the Shriners really about?
Click here for more...

Amtrak Train Travel: 10 Essentials to Pack in Your Carry-On Bag
There are ten essential things to pack in your carry-on bag while traveling Amtrak. Read on to discover what's in my bag...
Click here for more...

I have several more articles on the subject of train travel and more specific articles on serial casting as a treatment for idiopathic toe walking coming up. I'm also planning on writing a couple about AFO (ankle-foot orthotic) braces. I will post those articles when they are published. Thank goodness for Associated Content ~ I'm so happy to be able to share what I know and help others who may be going through this same thing.

I don't often request anything from my readers, but this time it's that important to me to break my own rule. During our last trip to Shriners Hospital, Sam saw a neurologist. After asking us several questions, the neurologist determined that since Sam's father also toe walks, it was important to him to be able to evaluate him to avoid having to run several tests on Sam. After discussing this with my ex (who, by the way, lives 1600 miles away), he learned he has a neuro-muscular disorder called Charcot-Marie-Tooth Neuropathy Type 2 that runs in his family. His aunt has it and so did her mother. It's similar to muscular dystrophy ~ MD attacks the muscles, and CMT attacks the nerves that control the muscles. While CMT can't be diagnosed until late childhood/early adulthood, I have a sinking feeling that this is why the neurologist wants to evaluate and diagnose my ex-husband. Please keep Sam in your thoughts and prayers. Send him positive vibes. Whatever your faith is, remember Sam. Please.