Our New Normal [s] » Our little family's realization, that there is no normal

The world lost one of its true heroes…

Mr. Yesue, my eighth grade teacher, and friend, was indeed an extraordinary man. It brings tears to my eyes to read all the beautiful memories of this beautiful man that are being posted on his Facebook memorial page. He’s the kind of guy who makes you believe that all things are possible. He’s the kind […]

View full post »

July 13, 2011 - 4:02 pm

kristen - Whoever wrote this hit the nail right on the head. Anyone who may read this story who didn’t know him will be able to understand what an amazing person/teacher he was. You are greatly missed Mr. Yesue. Thank you for being you and believing in all children.

July 14, 2011 - 12:04 am

Sandi - To the man who could have you on the edge of your seat while he told a story or having you laughing hysterically by the faces he made. You will always hold a special place in my heart Mr. Yesue. You have touched so many lives, and you probably never even realized it. May it bring your family peace and joy to know that so many of your past students still reflect upon their memories of you so fondly, a true tribute to the person you were. Sleep peacefully Mr. Yesue and thank you for sharing your life with us.

August 15, 2011 - 5:56 pm

Pete - I never had the privilege of meeting Mr. Yesue. If only we could clone him and have his clones in our current school system the world would be a better place.

Share the Burden

So many of our friends and family have offered to help and asked how, and I thank you all so much. With much thought and consideration and (humility) I  have put together this list of things I have thought of. First of all: Please join us in prayer for believing for these specific things for […]

View full post »

July 7, 2011 - 12:13 pm

Leta - we have an old nintento ds lite that we are not using that you may have.

February 8, 2012 - 9:45 am

Juanita Pannocchia - thank you for your beautiful photo documentary, I can send you some UV arm bands that will detect when its time to apply more sunscreen. these are very helpful when she maybe at school, youth trips, etc…
One of my daughters was diagnosed with JPM/JDM/Lupus.. her senior year in high school. At the time she played varsity soccer all 4 years, not to mention community soccer since she was in the first grade, loved to swim, dance, attend concerts, love long distance running, being with her friends, and most of all with her family. I could tell you of the time before she turned 10, one of her birthdays all she wanted was to have cake and ice-cream with just her family. Her father and I didn’t know what to think so we still invited some of her friends, she still had an awesome time but after wards she still asked for just her private party. We were happy to give her that wish. When Casey said she justs want to be with her family that is what she wants, from her heart.
Casey was 17 when she was diagnosed, her freshman year in college, (biology major pre-med) Casey had to take a medical leave, she couldn’t walk across campus, couldn’t even hold her head up. she would lay in bed with her computer and attend her classes. Determined to continue. A heart of pure GOLD.
We lost our beautiful Casey to this monster of a disease only 17 months of her diagnoses. 6-10-89–3-23-09 ALWAYS AND FOREVER IN OUR HEARTS.

please let me know where to send the arm bands if you want God Bless and we will find a cure!!

February 18, 2012 - 10:57 am

freedomg12 - Juanita, I am so grateful that you found our little page! Thank you so much for sharing your story. I am so sorry for the loss of your sweet angel. My heart is breaking.

“You will never know how much you believe something …

… until it is a matter of life and death. If you think of this world as a place intended simply for our happiness, you find it quite intolerable: think of it as a place of training and correction and it’s not so bad.” – CS Lewis

View full post »

June 9, 2011 - 9:14 pm

Megan - Love you guys so much and pray for you 4 all the time. You are such a source of inspiration for so many of us Freedom!

Trip to Holland

I didn’t write this, but I had to share because I have never come across something that describes our experience better than this. In case you were wondering… it’s short, and lovely. “I am often asked to describe the experience of raising a child with a disability – to try to help people who have […]

View full post »

June 8, 2011 - 3:25 am

sherala - what a beautiful way to let others have a sense, however small, what it feels like to have the journey changed.

June 8, 2011 - 3:30 am

sherala - what a beautiful way to give others a sense, however small, of what it feels like to have the journey changed on you.
Thanks for sharing.

the road less traveled…

…is scary. Well, It’s Wednesday, and we did not admit Vivia to the hospital for treatment. We have been going through a lot the last couple of weeks, and we still don’t feel a “peace” about doing this treatment path. The doctors could not be more vehemently opposed. The specialists seem to think this is […]

View full post »

So, here it is…

I wanted to let you guys in on something that has pretty much rocked our world in the last 3 weeks because we could sure use your prayers, and I know you’ll probably be hearing things, so I’d rather you hear it from me directly. Before I say anything, I also want you to know, […]

View full post »

February 23, 2011 - 3:16 pm

Megan - Thanks for a full update. Its good to know how to specifically pray!! Lots of love and hugs~

February 23, 2011 - 3:28 pm

Laynie - Freedom – I am praying! I’ve had the privilege of meeting Vivia once and she is a bright, charming, young lady. I also speak LIFE. xx

June 7, 2011 - 1:31 pm

Carla Nason - Praying for you all! Shawn and Kayla and I love you dearly and we know that God’s plans are higher than ours. One word of awareness…do NOT claim the “rashes.” Don’t speak “Vivi’s rashes” or let her say “my rashes.” Change your verbage by saying “The rashes” or “those rashes.” A wise friend of mine once corrected me because I used to say “‘my allergies’ are bothering me.” He told me, “Those allergies don’t belong to you so don’t claim them. By putting “My” in front of that sentence you are claiming them as yours.” I never thought of it that way. So ever since then, I don’t claim ailments and attacks. I know that allergies are a far cry from this attack but the principle is still the same. Love and prayers to all of you!!!

June 7, 2011 - 2:22 pm

Eduardo - Vivi, we think of you every day and we know that you will recover quickly. You are blessed with a great family and friends that will support you all the way. Stay strong sweetie!

June 7, 2011 - 2:36 pm

freedomg12 - Thanks @Carla, that is a great truth! We also believe in not *claiming any part of this with our words, and I thank you for the reminder!

June 7, 2011 - 4:35 pm

Jenna - Praying for you guys.

June 7, 2011 - 7:04 pm

Brian - thanks for sharing your journey with us. we will stand with you to see her healed.

June 7, 2011 - 8:54 pm

The bourgoins - Sign us up for prayer chain!

June 8, 2011 - 12:51 am

Andrea Myers - You are ALL near and dear to my heart. I think of sweet Viv every single day and lift her up to the One who can heal her. I pray this brings your family closer to eachother as well as to our Maker. My parents are also in prayer. Thank you for sharing and I will read everything you post. Love you Free!!!!!

February 28, 2012 - 6:22 pm

Kat Hayduk - Glad you have found the video a good resource to share- my partner and I did it. We heart Cure JM. Please know that most kids achieve remission, including our perfectly healthy nine year who was diagnosed 5 years ago and has been off all meds for three years now. Aside from occasional redness on his skin after a hot bath or too much time at the beach (we are just extra diligent about sunscreen and hats, but don’t keep him out of the sun), he’s perfectly normal and healthy. We just visit his doctors once a year now. I know some other folks aren’t so lucky, but the odds are way on your side- especially since it’s mainly isolated to her skin. Hang in there, but don’t let it define you (or her). I was obsessive about it for the first while and that’s normal, but I wish I spent more time looking at the best case scenarios and not the worst. And, do everything in your power to go to a Cure JM event sometime- they’re awesome! Also, our son is now really into science (and microbiology in particular) and I think that’s because of all his experiences with JDM. Hugs, Kat

C o n n e c t
C a t e g o r i e s
A r c h i v e s