Good Will Wednesday. (Special Phoebe Edition- part 2) What you can do in the fight against DIPG.

Happy Good Will Wednesday, friends! Recently I shared a brief story about my life-long friend Sarah and her sweet, three year old daughter Phoebe. If you didn’t catch the previous Good Will Wednesday Special Phoebe Edition, you can read about it here. 

Sarah and I go way back. Back to days where I had a terrible perm and was even less confident in my clothing choices than I am now. In the midst of my pre-teen awkwardness, Sarah introduced herself and we became fast friends. We’ve stayed close despite moves and distance and busyness with kiddos. Sarah is part of my circle and I am part of hers.

Sweet Phoebe with Mom and Dad.

I received an unexpected phone call from Cole, Sarah’s husband, in March.  He broke the news that their precious daughter Phoebe had been diagnosed with a rare, terminal brain tumor called DIPG. Diffuse Intrinsic Pontine Glioma. This is a tumor present in the middle of the brain stem, an area responsible for controlling breathing, communication between different parts of the brain, and sensations such as hearing, taste, and balance. Surgery is not an option. The statistics are not good. Take a few minutes to click the link below and gain a brief understanding of this tumor.

(Wikipedia DIPG information.)

Sarah, Cole and Phoebe, along with extended family and friends have handled this unbelievable trial with a strength I can hardly comprehend. I’ve been amazed at Sarah’s resolve as she treads this unknown path. They have asked for nothing outside of prayers until just a few days ago. When I received a request from Sarah in the form of an email sent out to a group of friends, I was anxious to act. When a loved one is hurting and there is little to do in the way of tangible actions, you jump at the chance to help in any small way.

The message read:

Hello all,
Sorry for the group email. A huge issue with DIPG is that since it is so rare , there is not only an lack of awareness about it but also a lack of funding for research.
I don’t usually do this type of thing , but I am asking you to take a few minutes to click on the link below to contact our congressmen about this issue. Please tell them that DIPG is killing too many helpless children already,  and we desperately  need to find a cure. We need to increase awareness and increase funding for research to find a cure.  It is very easy and takes only a few minutes.  This horrible monster needs to be stopped. Please help us out if you can. We appreciate it ! Please feel free to forward this to anyone else on our behalf.

http://contactingthecongress.org/

Thank you from the bottom of our hearts!
Sarah , Cole and Phoebe.

 

Everyone is polarized in regards to politics this year. In my adult life I have never witnessed such a divisive election. Let me state from the start, what I’m about to share and request is NOT a Republican or Democrat issue. This is also NOT a political post. I am married to a government teacher, I am the daughter of a retired government teacher and I am the sister of a government teacher. I would rather have to endure the ‘birds and bees’ talk again with my parents than discuss politics one more time.

What we have here is an opportunity to, regardless of party lines, unify our efforts to fight an ugly monster. In a matter of moments you can make your voice heard regarding an increase in funds to attack this hideous disease. Democrat or Republican, I hope you will take a few moments to engage your congressman regarding this issue and other issues that speak to your heart.

Simply click the link, select your state, select your desired congressman/woman and follow the drop-down arrow to select the appropriate topic. I included a personal message regarding my request and why I believe it is necessary.

Please know your efforts are most sincerely appreciated by my family and Phoebe’s. 

E

 

 

Tumbler to tumbler. Comparing Yeti to Walmart’s Ozark Trail. 

*This post contains affiliate links and I will be compensated if you make a purchase after clicking on my links.  This post may seem outside of the typical TickingTimeMom wheelhouse….but it was a suggestion from my husband. And I kinda … Continue reading

Traveling with small kids. Jesus, take the wheel. 

Traveling with small children is not for the faint of heart. Carrie Underwood would’ve asked Jesus to take the wheel MUCH sooner if she’d been driving four small kids across six states.

However, sometimes the sheer need to get away overrules the small voice in your head that is screaming, “DON’T do it. Stay put. Remember what it’s like to be in a confined space with your immediate family? Remember? If not, you can be refreshed by reading the multiple blog posts you wrote from last summer’s vacation. Here and here, Emily. Read these and remember.”

Life’s too short so I squelched the logical voice and began packing. My sister had thrown out what I’m sure was a sarcastic offer for us to come visit her on the east coast. She should’ve known better than to offer…..

Minute 1: The van is loaded down with every bit of loot available for children ages one through nine. Snacks, electronic devices, clothing, swimsuits, various size strollers, cooler, etc.

Minute 2: Realization that we had forgotten three things.

Minute 10: The very first “How much longer do we have?” rings from the backseat.

Hour 2: Potty break and lunch after cries of “We’re staaaaarrrrrving!”  It is two hours after breakfast. Two.

Hour 3: Back in the car for 30 minutes when three of the four beg to stop because they have to potty.

Hour 3.5: Everyone is back in the van, bathroom needs have been taken care of and drinks are all refilled so we can be sure to stop at every rest stop from here to North Carolina.

Hour 4:  These kids assure me they are not tired. No naps needed. They are too old for naps.

Hour 4.25:

Hour 6: I realize I failed to pack any shoes for my child. With exception of his water shoes for the beach, he will remain barefoot for the trip.

Those of you laughing at my oversight, the joke is on you. This one, small error is a major success given the fact that two years ago we got all the way to North Carolina before I realized I left two suitcases (fully packed) on the beds at home. I remembered the children. I did not remember the children’s clothing.

My sister did NOT live in what I would call a metropolitan area. However, there was a general store at the one stoplight in town so I was able to purchase some interesting clothes for the week. Nothing matched and the sizes were a tad bit off…but we spent 90% of the time in swimwear so it all worked out.

On the positive side of things, I will gently pat myself on the back for a traveling success. I take pride in what will forever be known in our home as the ‘vacation mulligan.’ When leaving our hometown and dealing with lots of opinions, I told the kids there was a surprise during the trip. Each child would be granted a “vacation mulligan/wildcard.” This would allow them each one chance during the trip to get the final vote or a do-over. They knew this would come into play if they wanted to have the final say in what movie we selected or if they were on their way to losing a privilege for less than stellar behavior. It was quite telling to see which kids were interested in the do-over versus the wild card.

The rest of the trip was rather uneventful minus the pulsing screaming our youngest shared with us from 10:45 -11:45 PM. He gets increasingly wild when tired. Rather than succumbing to sleep he fights it like a rabid dog. Cue Carrie Underwood.

The rest of the kids spent their 15 hours pondering when and how to use their mulligan. They were so engrossed in the gift of this do-over that none of them actually used it. Score!

We finally arrived in North Carolina and had a wonderful four days with my sister and her family. The sand and surf soothed the grievances from the 15 hour drive. Fortunately, the four days passed faster than the drive out to North Carolina. Too soon we were packing up to head home.

We are now enduring the drive back. Mulligans have been thrown out the window and candy has been thrown out parade style just to quiet the unruly passengers. Attitudes are bad because no one wanted to leave. People are fussy and crying. Even the kids.

Soul II Soul said it best… back to life, back to reality.

E

*Have you signed up for TickingTimeMom emails yet? You should! I promise to pass along all my super travel tips directly to you. Tip #1: Don’t forget your suitcases. See, I’m already helping!*