Stop, Think and Feel ~ Guest Blogging Day

Whoever is patient has great understanding, 

but one who is quick-tempered displays folly.  

Proverbs 14:29 NIV

God has been working on me and my patience as I've gotten older. He continues to show me more and more of how foolish I appear when I am angry. A recent sermon that I heard at our church was on the topic of anger and how to rid your life of anger. It was tremendous because the most important thing I gleaned from that sermon was the fact that my ANGER is ALWAYS the band-aid on top of a different emotion.  

Take for example my experience recently in trying to start a dialogue with a number of different people in our state assembly or even those in my own city regarding Rare Disease Day. I had sent in my proclamation request to the state in the month of November and had e-mailed a number of different people in the middle of January trying to drum up enthusiasm for the event. However, I found that I wasn't getting responses from anyone!

I was so ANGRY. I had that feeling of, "Of course, here we go...no one cares."

Continue reading on Comfort in the Midst of Chaos...

Patience as Patients ~ WAGR Wednesday

Photo of Janet (Ms. Jackson, if you're nasty) couresty of http://welove3t.weebly.com/uploads/4/3/9/1/4391192/207730_orig.jpg

As I sit here, my bright pink ear piece plugged into my right ear and the microphone/mouth-piece curved down along my jaw line (go ahead, picture Janet Jackson, I'm okay with that), I am listening to broken, fuzzy, pointless music and waiting (25 estimated minutes) for my call to be connected to someone at the Division of Health and Human Welfare somewhere, in some building, in some city here in the great state of Nevada.

I thought I'd take the time to write a little bit about the patience that we have to demonstrate as we meander the rocky river of life with WAGR.

I knew that moving to a different state would mean re-applying for all of Miss E's services.  I knew that we'd be going through an onslaught of "first" appointments in which we may or may not meet people who give a flying fig about a disease as rare as WAGR.  I knew that I'd be applying for a substitute teaching license and would be basically unemployed as we met our annual deductible for our health insurance and paid the bulk of our medical costs out of pocket (Thank God for HSAs!). 

I forgot, however, how much PATIENCE it takes.  

I have patience with little classmates of Miss E who are trying to learn about the syndrome that their new classmate has...can I not have patience with the doctors who are treading into new territory as well? 

I have patience with the social worker who exchanges pleasant conversation with me as she learns about WAGR in our home...can I not have patience with the person who sits in the office and has to take angered call after angered call from people who need their help just as much, if not more, than my family does?

I have patience with the pharmacy that knew us well because they had been in the trenches of medication after medication for blood pressure and glaucoma and constipation from chemo...can I not give a little of that patience to the new pharmacy here who never seems to have a correct co-pay total for me even months into this process?  A lot of information runs through a pharmacy each day.  

"Patience," I must tell myself, "You are here and teaching new people about WAGR.  Someday, when they will hear the term again, they will say, 'Oh, I remember doing this for someone with WAGR before' and that will bring comfort to another family who is diving in to the rocky river for the first time.

Well, I'm down to 10 more minutes of my (estimated) wait time.  Yay, I've used this time wisely!  Had I closed my eyes to listen to the "tin can" music, I likely would have drifted off to sleep and missed the opportunity to talk once it was my turn.  

 I'm not sure if you are aware, but I try to blog often about WAGR/11p Deletion Syndrome, and share my point of view as a mother of a child with it.  There are a lot of intricacies that accompany this genetic disorder, and they are worth laying out on the table so parents and guardians can discuss them with doctors, therapists, teacher, and even friends and family.  

To read more of my WAGR Wednesday posts, just follow this link!  

And, for the record, I just got off my call...it was 56 minutes and 43 seconds long...I had a truly nice chat with Phyllis, who was sweet as could be, and she will get my message to the worker assigned to our case...she requests 48 hours to return calls...

Patience...

Noises, and Bright Lights, and Lines~ OH MY!!!!

Oh, the joys of holiday shopping!  I don't take Evie out with me on Black Friday because she doesn't even like shopping on a regular day, let alone the biggest shopping day of the year.  However, I have had my share of long lines with Evie, and have had to take her shopping when I have no other choice.  Today's assignment for WEGO Health's National Health Blog Post Month is to tell you about the things that I have done to make the experience a little less painful for all of us.

My friend, Jenny, who also has WAGR (the same syndrome Evie has) told me that the noise and bright lights in the stores unnerve her.  Based on that information, I tried putting music on my iPhone when we would go through Target or other stores.  She and I would sing along while we walked down the aisles.  It was a tremendous help.  Even better, we add headphones when we know that the volume would need to be too loud in order to help her; so as not to offend any of our fellow shoppers.   

Another thing to remember with a person with WAGR is that she or he may have sensory issues.  Pushing and pulling heavy things can help, so I will ask Evie to push the cart (I believe in some countries this is called a "trolley").  Giving her a task keeps her busy too!  One year when we DID brave the holiday crowds, I gave her a mall-wide scavenger hunt.  I listed different stores, and various items to find in those stores.  She and my husband would go looking for the things in the stores, and she'd get to put a sticker on her tracking sheet when she located them.  Then we gave her a reward at the end of the shopping trip. 

Those are the things that help when we are on the move and shopping, but how about when we get to the lines?  Two summers ago, I got Evie and I season passes to a waterpark.  I knew that we would have a lot of lines to stand in as we waited to get on the rides, so I told her to "put on your patient pants".  Honestly, it worked.  I don't know how or why, but whenever we would drive up to the entrance Evie would say, "I put my patient pants on."  Hilarious, and adorable...that's all I can say.

However, when the lines are extraordinarily long, I would use a couple of word\games to keep us occupied.  I call them "Going on a Picnic" and "Going to the Zoo".  One of us would say, "I'm going on a picnic and I'm bringing apples."  The next person will say the same except they have to bring something that starts with the letter "B".  "Going to the Zoo" is quite similar.  "I'm going to the zoo and I'm going to see an aardvark."  Again, the next person names an animal with the next letter of the alphabet.  It's a good time waster, and it's amazing how much it exercises one's brain.

For smart phone users, or people with iPads, the MadLibs app is fabulous.  There are some free madlibs, (I rarely purchase anything on apps). Madlibs are educational as well since it requires knowledge of nouns, verbs, and adjectives.  The people around you will enjoy listening as the story is read back.  Trust me. 

When in doubt, the best thing I can do for Evie is create a 1, 2, 3 plan just like Dora the Explorer would.  "First we have to get by the grumpy old troll, then we go to Tico's tree house, and that's how we'll get to Rainbow Rock."  Of course, in non-cartoon life this sounds more like, "First we have to get a heated mattress pad at Kohl's, then we'll pick out something "Bucky Badger" for a gift exchange, and that's how we'll get to Target for all of our basic needs." 

My last "tip" is about bathrooms.  We have made many, many a trip back to my hometown which is a good 4 1/2 hour drive from where we live.  I ultimately came to the decision that stopping to go the bathroom at a restaurant is MUCH more reliable than stopping at a gas station.  When you consider the standards that restaurants are expected to meet, they HAVE to be higher than a gas station, so despite how busy they may or may not be, the bathroom in a restaurant will likely top the cleanliness range of a bathroom at a gas station.  I'm not saying this is a certainty, but the odds are in your favor.  (Now that I said, "The odds are in your favor" everyone is thinking of the Hunger Games...which makes me think that some public bathrooms really are like the Hunger Games...You're fighting over limited resources like toilet paper and paper towels, hoping to rest somewhere that the "elements" won't take you down, and the most important thing you need to find in the bathroom is a clean water source.)

And, on that note (Don't forget to tip your wait staff, I'll be here all week!), I'll say "Happy Thanksgiving Eve".  Tomorrow I get to write about the things for which I am the MOST thankful.  Oh, the suspense, the anticipation...I just can't wait!

Patience, Faith and the Tension before I Fly

A saint's life is in the hands of God like a bow and arrow in the hands of an archer. God is aiming at something the saint cannot see, and He stretches and strains, and every now and again the saint says, "I cannot stand any more." God does not heed, he goes on stretching till His purpose is in sight, then He lets fly. Oswald Chambers, My Utmost for His Highest

Sometimes, I really feel like God stretches me. When people say He won't give you what you can't handle, I say, "Oh, He will...He gives you so much more because He wants you to have to rely on Him." So, this description of an archer staining and pulling back to create the tension and to generate and bind up all that energy as He prepares to unleash the arrow in the direction of His Will...well, to me it's just plain poetic and comforting.



When you consider an arrow, stretched back, aimed, teeming with all that kinetic energy of tension to be unleashed...there's no stopping that act once God has put the arrow into motion. And, with His will being perfect, then we know that nothing can stop His will from being carried out. So, it makes incredible sense that He would need to pull and twist and create such energy within us to snap us into motion.



This is exactly what I have felt over the past year'ish timeframe...something stretching within me...something pulling and twisting and tensing inside. Am I fulfilling my purpose, am I moving in the right direction, am I the best me that I can be, am I moving others toward God or away from God? Haven't I asked these questions before? Why can't life get easier? Why am I still searching? Why am I still hurting? Why am I still disobeying???



I want answers, I want happiness, I want solutions...I want results, I want to fix the things I've done wrong and help others see what they have done wrong. I don't want to hurt people, and I don't want others to hurt me! I want to stop pushing against God's will because when I do, it creates havoc in my life and the lives of those around me.



How can I reconcile these emotions? Only by remembering that the Bible also tells me that my soul will cry out while here on earth as it's yearning to be in Heaven, where it was designed to be. You know how you see a piece of art, or a piece of clothing, or even a person at an event and you think, "Hmmm...that seems out of place..." Well, in a sense, we're all out of place. We're all spiritual souls bound up in earthly, human, sinful bodies just groaning with the need to be joined once and for all with their Creator.



I am so ready to hear that sound of "whish-swoosh" as God releases my arrow and shoots me in that direction...imagine a razor sharp head of the arrow slicing through the air, and anything else that stands in it's way...the feathers on the tail of that shaft guiding and directing the arrow toward it's final purpose and destination...What excitement, what energy~what a sight it will be when I reach the end of the journey and can say..."Oh, Lord, my God, my Shepherd, my Shield...you designed me, protected me, broke me down and strengthened me, found me when I was lost, carried me when I was unable to walk...Thank you, thank you...what a perfect plan...I couldn't see the beauty in it until just now..."



Will this tension be released tomorrow? I doubt it. Will my current state of "blech" be resolved before the end of this year? I don't know! But God has promised me that I will be a victor "Because I [thou] hast kept the word of His [My] patience." Revelations 3:10 So, until that day...until that day...I will wait...