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

As an addendum: A Huge, yet simple revelation about fear

As an addendum to yesterday’s post 5 thoughts about fear- I want to share a HUGE revelation with you.   This is really deep, and really huge, yet very very simple. So, I ask right now, that anyone reading this, by the name of Jesus – this revelation would be imparted. Some things are not […]

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September 6, 2013 - 11:57 pm

Julia Goguen - This is what my friend Sarah Gurley Brown has been sharing for a long time, love that girl. Also, I learned that whatever I feared HAD TO COME MY WAY. There was no other way for me to see it, and be free. For
God to give me over to my fears felt like abandonment, however, when I came out the other side without being able to change or control things, I learned that to be free from fear was to walk through the middle of it, come hail or high water and see that in God, nothing that was of value was lost. Also, when I faced a lifelong fear, like losing my sisters, I was on the verge of fear returning into my soul like a spear. BUT GOD WAS THERE AND PEACE CAME OVER ME. This is the peace that passes understanding, for my sister was still gone and I was still heartbroken, yet I rode on a wave of peace that I was loved and somehow, everything was going to be all right. Went right past my consciousness and intellect and calmed my soul and saved my sanity. WOW, now that is the true example of the word AWESOME.

Hope & Letting Go….. Guest Blogger: Kristine Alderfer

So humble yourselves under the mighty hand of God, that he may exalt you in due time. Cast all of your worries upon him because he cares for you.  1 Peter 5:6-7 When Katherine was diagnosed with Juvenile Dermatomyositis in 2010, we were in a fog. Our daughter, who was only 3, had been showing […]

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September 6, 2013 - 1:28 am

Sarah Halladay - I”m in awe with people like you, Kristine and Freedom Goguen Martinez! My issues pale in comparison. I know God has a plan for each of us, and our lives should glorify Him no matter what. Thank you both for sharing what He is doing and has been doing in your lives. It’s truly remarkable!

September 6, 2013 - 2:07 am

Stephanie Lantz - This was touching and so beautifully written! You and your family are amazing!:) <3.

September 6, 2013 - 3:08 am

Freedom Goguen Martinez - Love this woman, Kristine McDevitt Alderfer sooooo much! Thank you for sharing your heart and your insight with us all in this raw and transparent post- Kristine. xoxo

September 6, 2013 - 3:19 am

Janice Volkers Nelson - Oh Kristine, dealing with the biggest fear of any mother becoming a reality, your testimony is something I want to hang up in my house somewhere for inspiration when life blows my mind. Let Go and Let God. Yes.

September 6, 2013 - 8:33 am

Aimee McCloskey - Love it Kristine !!

September 6, 2013 - 1:44 pm

Linda Pritchard - Beautiful, I love when God allows us to feel His presence! Your life inspires me so much!

September 6, 2013 - 2:42 pm

Sissy Taylor - I want the feeling of hope to return…I must be learning patience right now…Hope was here and I think about it but I am not “feeling” it anymore…I say I am hopeful but it is not truthful it is fleeting…Praying it comes back soon. Thank you Kristine McDevitt Alderfer or such an inspiring post and sharing your story. So happy about your brother and hugs to your 2 beautiful girls. xx

September 6, 2013 - 6:28 pm

Tonya Amble Felhofer - Oh Kristine McDevitt Alderfer – thank you for writing this blog and for sharing it! I think your words are “hope-filled” for so many people. You and Alan, Katherine & Caroline are a truly inspiring family and you are touching others with your story of love, commitment, and hope in God and in each other. Blessings to you all. <3

September 10, 2013 - 1:17 pm

Kim Poston Miller - Thank you Kristine McDevitt Alderfer- for being so open and honest. For those who haven’t been there, it is a glimpse into our world, for those who have it is a reminder of how we need to keep the faith and keep our hearts open to hope. Powerful from either perspective.

September 14, 2013 - 1:43 am

Julia Goguen - As opposed to everything is “going to be alright,” I suggest that with the God of Love on our side, “Everything IS, IS, IS ALRIGHT.” our EYES NEED TO ADJUST TO His KINGDOM REALITY IS ALL.

The thing about Fear: well… 5 things.

Before we move on to other things, I wanted to talk about the elephant in the room – FEAR. We’ve all felt it. The moment we see a tiny red mark on our child’s cheek, or they say, “My arm hurts” or “Im tired”- those of us with children conquering chronic life-threatening illnesses know that […]

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September 5, 2013 - 1:41 pm

Sarah Halladay - This is so good Freedom Goguen Martinez! Thank you for sharing the wisdom God has given you. For me fear is like a fly that must be smashed!

September 5, 2013 - 3:01 pm

Sissy Taylor - Love Love Love – thank you Freedom Goguen Martinez 🙂 I really look forward to these.

September 5, 2013 - 4:49 pm

Kim Poston Miller - Fantastic post…worth waiting 3 weeks 🙂

September 5, 2013 - 6:46 pm

Jennifer Sloane Lappin - So easy to fear. Something to overcome. Great knowing God is there to help us.

September 5, 2013 - 8:19 pm

Moggie Pritchard Mackubin - Thanks I need that!

Don’t Be Surprised

Behold, I have refined you, but not as silver; I have tried and chosen you in the furnace of affliction. Isaiah 48:10 (Amplified Version)   Gee, thanks! Sometimes I think that we, parents of children overcoming weird conditions or affliction, if given the choice, would choose a different life for our little ones. But, alas, the […]

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September 5, 2013 - 12:15 am

Crystal Evans - Great insight Gabe.

September 5, 2013 - 1:57 am

Aimee McCloskey - Love it !

September 5, 2013 - 2:24 am

Julia Goguen - This is my son, in whom I am well pleased.

Day 25: I’ll TAKE courage

How does one become courageous? What does one do when needing to be brave? How do you attain this place called “valor”? When researching verses that talk about “courage”. I found some very interesting things. These verses don’t say “Have Courage.” Or “Be Courageous”. Maybe some of the newer versions will put that in, but […]

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August 13, 2013 - 1:02 pm

Sissy Taylor - <3

August 13, 2013 - 5:17 pm

Kristine McDevitt Alderfer - Thank you Freedom. We are going through some things too and I am going to choose Courage. It’s the only way to go. So thankful for my faith at times like these. Hugs to you my friend. Oh how I wish that we could meet for coffee (or wine) right now.

August 14, 2013 - 2:27 am

Moggie Pritchard Mackubin - Thanks! I needed that! Moggie

Day 24: The Courage to NOT DO anything

Do NOTHING. Psalm 46:10 “Be still and know that I am GOD.”   One sure thing about this blasted disease Juvenile Dermato-myositis, JDM, is that it is unpredictable. And up to date and up to a point, unknowable. So what do we do when our hopes for improvement get dashed by familiar, scary, expectedly unexpected […]

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August 12, 2013 - 5:29 pm

Freedom Goguen Martinez - He did better about this than I did, yesterday! 🙂

August 12, 2013 - 8:43 pm

Aimee McCloskey - Hugs and prayers guys xxx

August 12, 2013 - 9:32 pm

Julia Goguen - Maybe that “still-ness” comes from falling into the realization that there is nothing left for us to do but wait. That strangely peaceful place where responsibility is given up because we have come to the end of our resources and must wait for God to move or all is lost and he will cease to be real to us. Because, He will, he will move, he will show up because He is Real, because he is sssssssso faithful, and because he is LOVE.

August 12, 2013 - 10:58 pm

Sarah Halladay - I can’t imagine having to go through all this! Your faith is going to be gigantic if it isn’t already! Prays for you all.

Day 21: My help comes from Him, and occasionally a glass of wine.

I guess closing out this week on disappointments would not be complete without something fresh to report on, and a few tests. And what a perfect segue into our week dealing with FEAR and COURAGE! Tonight, I found a stash of pills (about 14 or so) that VV is supposed to have been taking in […]

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August 9, 2013 - 11:55 am

Freedom Goguen Martinez - Never made it to the wine, but last night was a game- changer.

August 9, 2013 - 12:00 pm

Aimee McCloskey - Wow ! Thanks for this x

August 9, 2013 - 12:23 pm

Laura Barnwell Waisnor - Love the update! Something good will come of this!

August 9, 2013 - 1:23 pm


August 9, 2013 - 1:24 pm

MarkandErika Matuszek - I am crying reading this. So proud of you and her. You are a courageous woman! I am so blessed to be your friend and to have the opportunity to pray for you and your family in this season. #heisgood

August 9, 2013 - 1:31 pm

Julia Goguen - The “eerie calm” the Peace that Passes Understanding, The moment of face to face realization of just how powerless we really are, realization that we use our “might” and anger to try and build walls of safety around ourselves. That moment when we are totally dependent as little children with no options left but to wait and see. That’s when we are so empty of self that God gets to fill us with his comforter completely. In that moment, It is well with my soul. Cherish them, they don’t come that often and they are very hard earned. What a gift.

August 9, 2013 - 3:20 pm

Sissy Taylor - Love, Love, Love this! I love those kind of moments when the calm won…
I LOVE this 40 days as EVERYDAY I get a new perspective on an old thought – THANK YOU!

August 9, 2013 - 3:23 pm

Kristine McDevitt Alderfer - That brought tears to my eyes – that she would come out to you and say that. Also, that she turned to God in her time of crisis. Even a 7 year old can experience a crisis. I am in awe of your calmness in handling this and in your ability to turn it over to Christ. I work on this every single day. Not always successfully. Thanks for being an inspiration.

Day 20: Of disappointments, setbacks and beat downs – Part 3

My Pursuit What does it mean? This is the 21st Century, after all. We are reading this in a blog; thanks to this amazing technological development we call social media. There no armies to fight, no Amalekites, no Philistines, no Ziklag, no burning ruins… Our chase as a family is different than my pursuit as a […]

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August 9, 2013 - 4:24 am

Julia Goguen - 🙂

August 9, 2013 - 11:52 am

Freedom Goguen Martinez - I’m fastening…

August 9, 2013 - 3:14 pm

Sissy Taylor - Love that TED talk too! You are SO right -we look at “those” people in church – guess we had better “be” one of them 🙂 Thank you AGAIN!

Day 19: Of disappointments, setbacks and beat downs – Part 2

Yesterday, we talked about bitterness. My recipe for a great “Cuba Libre” calls for a little bitterness (Angostura Bitters to be exact), but only two drops. Other than that, bitterness in our lives is not a good thing. You know yourself and you can tell better than anyone which path you have chosen after your […]

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August 7, 2013 - 9:06 pm

Julia Goguen - This blessings I receive from this man doing everything he does with excellence is a situational gift from God due to the battles he fights. God is faithful.

August 7, 2013 - 11:49 pm

Sissy Taylor - Thank you – I love hearing the “dad” side of this.

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