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

Day 8: Promises, Promises

God NEVER breaks His Promises. So, we’re in week two of our Fast Break, already: Week one was all about “believe”. Examining what we believe, breaking down (un)belief, and realizing that our beliefs shape our world. In raising kids with Chronic/Serious Medical Conditions, this is something we must keep in check, because it is very […]

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July 26, 2013 - 1:11 pm

Sheree Negrón - This rings so true. When I first found out I was pregnant with my daughter Madison the doctors said my blood work wasn’t showing I was pregnant. Than it came about maybe I was pregnant but I have miscarried from what the doctors said. “I’m sorry Ms. Negron but we need to schedule a DNC.” I knew that I knew I hadn’t miscarried. I told the doctor I will not be scheduling a DNC, my God is already forming her in the womb. Next month we will be celebrating her 3 y.o. birthday!

July 26, 2013 - 1:29 pm

Julia Goguen - My daughter Sarah was told that the tiny little baby she was carrying was dead and that she needed a D and C. In her horrible sadness, we went to the scheduled event at the hospital. Before the procedure, there was an ultrasound done. In the middle of our despair and prayers, there was a heartbeat and we have our beautiful Sophia. Praise a faithful God.

July 26, 2013 - 5:24 pm

Sarah Halladay - So amazing! It’s not easy for me to believe this TRUTH all the time though. I have many PROMISES I’m waiting to see happen. I pray He shows me how to have faith in Him more! Thank you for pouring your heart out Free! <3

July 28, 2013 - 11:57 am

Sissy Taylor - I never realized I gave up hope for remission based on what a dr told us last year… I pray to change the damage I have done by believing them…Father forgive me.

July 31, 2013 - 11:48 pm

freedom - WOW! SO many stories like this one. AWESOME

Day 7: A Little Surprise…

Please click below on the image. This is an e-card, someone asked me to post for you all.   Enjoy the day! Rest in his peace today, knowing this word is from Him. That He is proud of you, and thankful to you. Let that sink in. Is it hard to believe? Why? 2 Corinthians […]

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July 25, 2013 - 12:51 pm

Sissy Taylor - Thank you for starting my day being humbled and in tears for my God. <3U

July 25, 2013 - 10:14 pm

Julia Goguen - I was absolutely undone the day I realized that God thanked me every time I changed a baby’s diaper. I did this service for him as he used me. He wanted these children to live and they needed someone to be there for them. He speaks to our hearts, if we listen!

Day 6: Believe, part 2. Belief shapes our world.

I know yesterday was a heavy – hitter. Analyzing our belief system is always very eye-opening, and revealing. The reason I had you look at those things yesterday, was for this reason: Belief, or (un)belief shapes our world. If we hold roots of unbelief or doubt about God, and His love for us, and whether […]

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July 24, 2013 - 5:05 am

Danielle James Tipton - I do struggle with God’s plans for Emily’s future. Ours is not only JDM, but an overlap of several connective tissue diseases. We have never really ever been given a prognosis, but to date there is not a cure. She can achieve remission, so we pray for a cure.
What I do know is that her diseases have also carried so many blessings. We have found some wonderful friends because of her issues, we have seen several miracles. Overall I know that everything happens for a reason, and usually when we have a bad run it’s okay because something better always comes along! But a cure does seem like a long shot. That is my biggest hurdle right there. And yes, I do wonder how she will cope, how she will handle it when she is older. I worry because her hands are such a wreck, her endurance is terrible, and she has a hard time with everything. I have always believed that God’s chosen people are the people that He puts the most on. I feel that perhaps she has been chosen to be one of His special people. I try not to think about the future too much. I kind of go up and down a lot.

July 24, 2013 - 1:32 pm

Freedom Goguen Martinez - I do also struggle with the very fine balance between worry and trust. And (what is my part to DO) and what is God’s part to handle. I think we all have to find that place for us, that works. I continue to search for that place, and dwell there. We are seeing another Doc this AM to determine VV’s allergies. More pricks and sticks. Prayers welcome!

July 24, 2013 - 2:10 pm

Aimee McCloskey - Its the balance of his to handle mine to manage that I struggle with most .. like you said.
And yes many days I do look at ellie and dont recognise her and the thought that jm has stolen my girl is hard to take . But my god is good and faithful and I believe in his timing she will be healed. Remission doesnt seem enough for our kids. That vrs..” you have not because you ask not “… well here we are on our knees . Prayers for you mummas xx

July 24, 2013 - 7:31 pm

Julia Goguen - You are amazing!

July 31, 2013 - 11:46 pm

freedom - She most certainly is, and so are you! Danielle, you are strong and able. Where no cure exists, we look to Him who took all diseases upon himself on the cross and we ask He be the Cure! Jesus, be the cure for our kids, we cry!

I pray that Danielle not only think about the future, but she be able to dream big dreams again. I speak courage and hope into my sister. I ask you give her a vision for the amazing future you have planned for her and for her daughter!

July 31, 2013 - 11:48 pm

freedom - Yes we are. JM WILL NOT steal your baby. She is still in there. That thing we think is here to take her out, is actually going to catapult her to another level, she need only be still with her eyes on Jesus, and her hands raised in surrender and in love to Him.
He is with you, Aimee- all the time. He has not abandoned you, or Ellie xo hugs and kissses.

Day 4: What do you need?

I wanted to talk for just a second about “What do YOU need?” I am going to share something personal here, this is why Gabe and I felt the need to seek God for 40 days for Vivia.  We have a specific issue and we need a specific answer. Lately, we have been experiencing emotional […]

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July 22, 2013 - 11:24 am

Aimee McCloskey - What do I need ???
I have no idea how to answer that…

July 22, 2013 - 12:19 pm

Julia Goguen - I need strength and wisdom as I watch my daughter, and my granddaughter go through these things. I need understanding, gentleness, and a quiet spirit and quiet mouth. I need to show my years of living with a faithful Father. I need..

July 22, 2013 - 12:45 pm

Kristine McDevitt Alderfer - I need peaceful moments during the day, to spend with scripture and prayer. I need patience to help me get through the day with joy and not frustration. I need restful, and restorative sleep, which I have not been getting. I need a squeaky clean house. 🙂

July 22, 2013 - 1:26 pm

Sissy Taylor - I need rest…real rest not go to bed and wake up more exhausted than when I went to bed…

July 22, 2013 - 2:07 pm

Bobby Barnard - I need to start fully giving my life to him. Praying daily. . Asking what he wants of me and living more for him.
I have never been one to express my feelings openly. I feel hes already changed me so much lately… more confident and wanting to get out there to help others. I think with living with JM confidence has always been an issue. Feeling like im not good enough… the lord has given me a loving family who they have truely been my best friends growing up – my mom,dad, brother and sister. Almost 3 years ago I met the One I believe god has made for me… he has been by my side and just as supportive as my family. Im sure you feel this way with your husbands but just a prayer to put out there .. even though your kids are young they will need it one day.. I pray that even at this young age god is shaping a person out there for your child as they get older. We will always need our parents but our soul mate is needed as well. That perfect someone.. sorry this is long…. physically I know my body is tired. I just want to get stronger… take better care of myself (eating healthy) physically my calcium deposits and rash hurt… just ask for comfort

July 22, 2013 - 4:05 pm

Sarah Halladay - With 5 kids I Need a break, everyday! The way I do this , is by taking time out to just sit in the bathtub or “zone” out in front of the T.V. Seriously, the best way I get rest is when I’m just with my Love. The One who embodies rest and peace is with me always, and I desire to be with Him on a daily basis. Without Him I’m at a loss.

July 22, 2013 - 7:52 pm

Sarah Gurley Brown - Julia, if I remember right did the Dr. Put your grandaughter on steroids, specifically prednisone can we talk about this soon?

July 23, 2013 - 2:18 am

Sheree Negrón - I need to remember the moment before I place my feet on the floor to talk with the Lord. A few moments to say, “Good morning Lord!” With a husband and three kids, we fail to remember our Father yearns to hear from us. I need to remember that our children are the Lords pride and joy, they are HIS kids before they are ours. I need patience sometimes with constant bickering with the age gap. I need to remember the joy in the midst of the day of business of work. I need to not worry so much, the Lords “got me” in the midst of life’s struggles.

July 31, 2013 - 11:40 pm

freedom - You bet. I pray that during these 40 days, you will receive all that you ask, and more than you could imagine.

July 31, 2013 - 11:40 pm

freedom - Peace and Rest in you, Jesus. For Sissy.

July 31, 2013 - 11:41 pm

freedom - Jesus, I speak peace over my friend Kristine. I speak life into her tired bones. I speak healing into her heart, and an affordable, trustworthy, amazing house cleaner! hey, can’t hurt to ask. 😉

July 31, 2013 - 11:42 pm

freedom - A break for Sarah, Jesus. Bless her for all she gives, let it be repaid back to her x 10!

July 31, 2013 - 11:43 pm

freedom - You’re right. He’s got this! xo

August 1, 2013 - 4:29 pm

Gilda Bertram - I know WHAT I need, I just don’t know if I have the strength or energy to take time out (most days) to take care of me! This study is a WELCOMED respite!

Day 3: That thing you thought was sent to kill you…

Today I wanted to share a powerful Rhema word I got a couple of weeks ago about JDM in our life and in my daughter’s life. A Rhema word is a really cool thing, you can get them daily if you seek God for them, or you can just get them every once in a […]

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July 21, 2013 - 1:35 pm

Julia Goguen - It took me the maximum amount of emptiness/helplessness to receive the greatest dose of trust. A most excellent trade off. That is what it took for me to believe I was loved. Not the easiest, but the best, and it came with stillness.

July 21, 2013 - 5:54 pm

Jennifer Gates - Obviously, in the still of the night, God is talking to you and using you in a mighty way. Your enthusiasm for His truth and the strength you display will be a testimony to His faithfulness. I believe Vivia’s healing is here!

July 22, 2013 - 3:58 am

Danielle James Tipton - I was cracking up at this, but I didn’t feel my word with it. However, I wanted to share one that I felt years ago that may help some others going through JDM or anything chronic or horrible.

Before my daughter was diagnosed with JDM, her doctor thought she had full-blown Scleroderma. I had to wait 2 months for lab results, and I was a mess. It turns skin & organs to stone. I was a mess, crying every time I heard SCC’s “Cinderella”. Then one day I realized that she was only on loan to me. She is a gift that we are blessed with, entrusted with, but she isn’t mine. I know how loved she is, & so I relaxed. I know that she is held.

And no, she doesn’t have full-blown scleroderma… Yet. Her doctors feel that her MCTD will turn into it one day because she does have so many symptoms. We take one day at a time & trust in The Lord.

July 31, 2013 - 10:00 pm

Gilda Bertram - Where were you when I needed this strength 15 years ago! WOW!

July 31, 2013 - 11:53 pm

freedom - Love you Jen, Thank you for always being such a support to me and Viv. xo

August 4, 2013 - 11:58 pm

Day 16: MY Promise, can be yours too… » Fast – Break 40 - […] Today, I wanted to share with you Vivia’s rhema. […]

Day 2: Musical Prayers, and Wordless Prayers?

Musical Prayers, and Wordless Prayers? When I am entering into a specific season of my life, I like to put together “soundtracks”. It is one of the keys to calming my fears and keeping my focus where it should be. There are songs that speak like a harpoon directly to my heart and my situation. […]

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July 20, 2013 - 12:24 pm

Angela Dean - We weren’t suppose to be able to have Maddie and during our infertility the song Praise you in this Storm was one I clinged to, the day we went in to find out Maddie’s diagnosis I turned on the radio and it started to play it was at that moment I knew God was in control and no matter what he held us.

July 20, 2013 - 12:38 pm

Sissy Taylor - One of Kory’s favorite songs! “Oceans” Freedom Goguen Martinez – you are speaking our journey – as we drive to Korys’ infusions each month she and I listen to KLove Radio and are having the same experiences you describe…It is so nice to have a connection like this to someone going down the same path! Thank you for sharing this and showing us we are not alone 🙂 Love to you and VIvia.

July 20, 2013 - 1:24 pm

Julia Goguen - It was considered to be geekie in my day to be part of the Glee Club and in the Chorus and Choirs. All the world around me was dangerous, mentally, emotionally, spiritually and sometimes physically. I learned early and well to protect myself with an illusion of control. However, when standing in the midst of other voices, sometimes hundreds, my outer self with all its boundaries and walls were appropriately dissolved and I melted into a sea of being and hope in the future which was like described,” without boundaries” and artificial controls. In those moments I soard, equal to anyone and anything. In those moments God rocked me in his love. Is it any wonder he calls us to get outside of ourselves and worship?

July 20, 2013 - 1:30 pm

Julia Goguen - Freedom, I am humbled by who you are.

July 20, 2013 - 2:06 pm

Sheree Negron - Months back when Madison was first hospitalized “Healer” by Hillsong became my song of choice that I played over and over in her room. I remained in prayer how the Lord used Madison when she was in the womb and he was continually using her. Using her life as a testimony to bring others closer to God. There were alot of times as she slept I prayed over her and the tears would overflow. Your words today speak so much truth even in our life.

July 20, 2013 - 2:58 pm

Sarah Halladay - Wow! God’s hand is so very present with your family! I pray that everything Vivia and your family has been through will bring Him great glory!

July 20, 2013 - 3:27 pm

Kara Molfetta - WOW….Beautiful, just beautiful !!…Moved me to tears…Thank you for this Freedom xoxoxo

July 21, 2013 - 2:37 am

Danielle Tipton - I could have written this post. This is exactly how I have felt so many times. I find the way home is hardest because it usually seems like we get bad news with almost every Shands visit. I end up processing while my daughter sleeps, very often in an emotional breakdown. It is a mixture of being grateful for a good infusion, that she is still with me, and for all of the blessings that we have had bestowed upon us, combined with the emotions of the visit.

I have always felt that music was very healing. I was another drama geek, involved in every play, chorus and drama class possible! I live music. Aside from “Praise You in This Storm”, we have several other songs that are go-to for us. Not long before we got her port, Mandisa’s “Stronger” hit the airwaves. That became a prominent soundtrack in our lives. She loves Britt Nicole and Natalie Grant, Heather Williams, Frannie, of course. Britt Nicole’s “The Sun is Rising” off of the Gold album has gotten me through so many days. It echoes in my head on the difficult days, and gives us hope.

July 31, 2013 - 11:52 pm

freedom - Love this. We all have so much in common. Isn’t it nice to be able to combat the lie that NO ONE ELSE knows what you’re going through!

July 31, 2013 - 11:52 pm

freedom - Yay! More liquid prayers… haha

August 8, 2013 - 10:34 pm

Day 21: My help comes from Him, and occasionally a glass of wine. » Fast – Break 40 - […] I choose to rest in “The Great Unknown” like in that song Oceans I posted the other day, “where feet mail fail and fear surrounds me- he’s never failed, […]

Day 1: Why 40?

Believe for the Unbelievable. Parenting children with chronic illness can seem like a hamster-wheel cycle of : tedious daily regimens, small breakthroughs, exposure to a “trigger”, fear, more fear, panic, hopelessness/disappointment, then back to tedious daily regimens because this is all the control we feel we have. We run hobble along on this treadmill-to-nowhere for endless […]

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July 19, 2013 - 7:47 am

aimee - Great reminder of the weapon’s we actually have.. feeling powerless/helpless is exactly what having a seriously ill child is like.. its like drowning! So easy to be consumed by the facts that we forget God is above them and we are not powerless ! When life is touched by jdm it is a defining moment… choosing (sometimes moment by moment )to let faith not illness define that existance is the challenge .. love this Freedom !Beautifully written xx

July 19, 2013 - 11:39 am

Bella - When you talked about God not being a jerk who picks you up for a date and drives to the middle of nowhere and kicks you out by yourself, I realized that was exactly how I had felt in my darkest trials. I now understand that it is a reaction to the conditioning of years of unmanly behavior surrounding my life. Very good break through. thanks for sharing the challenge! I believe god has plans for the good of our loved ones blessed with special “messages.”

July 19, 2013 - 1:36 pm

freedom - @Aimee, have you ever watched the comedian, Jim Gaffigan? He is SO FUNNY- and he did a skit about how life with children is a lot like drowning. I was crying laughing so hard!!!
In his latest, called Mr. Universe.

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