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

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 […]

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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 […]

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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, […]

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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


It comes and goes in waves. Like her moods. I WILL NOT lose her to this friggin disease. She will not be taken from us for 6 months, 6 days, or even 6 minutes! Can’t I just take her in my arms, and hold her and not let go until this is all over?

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I never thought…

I’d see the day that taking Rio to his monthly Ocularist appointment would ever take a back-burner to anything else! This morning, I called them and told them I couldn’t make it, which is the first time I have ever done that in his 2 years of going there. I sit here as one who […]

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February 16, 2011 - 6:14 pm

Jill Owens - What a BEAUTY!!!!! She is in God’s hands ” THE ULTIMATE HEALER ” : ) Lot’s of love and prayers to you and the family! God has Vivia cuddled up in his arms! xo Jill

November 11, 2015 - 7:43 pm

Hannilie - otherwise. Just remember when it’s hard that you and Zameer were made to be her ptrenas, and there’s no one better for the job of loving and caring for her emotionally and physically. Your little family is in my prayers. xo

The Latest

We have an appointment tomorrow with a homeopathic doc who will examine Vivia’s levels and her diet and make some dietary suggestions based on her diagnosis. And we will become one of “those” families who can’t eat out or has to bring their own treats to parties bc we can’t eat anything commercial. But, hey, […]

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another “New Normal”

My emotions are too raw to really write about this.   But I do want to put this out there so that I can know our friends and family can be praying  for us. I honestly can’t believe this is happening, and I am trying to process it all. I debated with myself as to […]

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February 14, 2011 - 7:27 am

Kristy Chowning - A friend of mine’s son was just diagnosed this just a couple of weeks ago. Before that, I had never heard of it. We will definitely be praying.

February 15, 2011 - 10:20 pm

Freedom - Thanks Kristy. That’s so odd. How old is your friend’s son? How far along is the disease? I mean, what are his symptoms, do you know?

February 15, 2011 - 10:49 pm

Heather Davis - I will be praying for you and your family Freedom. It’s always scary when the unexpected happens and especially when we don’t understand it. Know that God places it all in front of us for a reason, even though we can’t see it yet and it seems so unfair. I’m truly sorry you have to go through this hardship and I know it hurts the most when it’s our children. WHY CAN’T it BE US???? Love you and thinking of you.

February 15, 2011 - 11:40 pm

Naomi - you are in my thoughts constantly, I pray there is relief for your Vivia..soon! i love you!!!!

February 16, 2011 - 5:30 am

Miranda - Oh Free. I am so sorry, babe. You will be in my prayers. Love you.

February 17, 2011 - 10:38 pm

Kristy Chowning - I don’t know the details but I will see if I can connect the two of you.

February 23, 2011 - 1:05 pm

So, here it is… » And Baby Makes Four - […] If you want to find out about it more, you can go here: http://curejm.com/ This is the site I have found with the most up-to-date information. There is also a short video that does an excellent job of explaining what we are facing. You can also view it on my blog here: […]

July 7, 2011 - 10:18 am

ejackson - Freedom. I finally went and searched for this post because i saw your post from today… and remembered you said something about viv on an eliot post… I don’t know how I missed this except maybe you weren’t in my facebook feed (why does facebook make these decisions for us!) I’m so sorry I did not know. I will be praying and so sorry you are having to battle this.

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