Secret Sisters

I am so excited about the Secret Sisters Ministry at our church. My prayer life has already drastically changed! I cannot wait to reveal my sister next year :) It has been so fun being apart of the team that put this together and I’m looking forward to being apart for as long as I can!! If you don’t know what Secret Sisters is, basically you get paired with another lady from the church and you pray for and encourage them secretly for a year. Each month you write an encouraging letter, but you can give gifts as well. I was excited to hear that my grandma does this at her church too! It has been fun to see the table on Sunday mornings filled with letters and gifts! The kids have enjoyed being involved with the idea of Secret Sisters :)

xo, nikki :)

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It’s a new year and a “new” me

I think I tripped and fell into this year and I’m still struggling to get up. It has been the weirdest transition for me. Normally, I am all about setting up goals for the coming year and am so excited to have a fresh start. But this year, I was not ready for it. I had no time to think about anything. I woke up and it was a new year.  Don’t get me wrong, I am still excited about it being a new year but frankly, I am still trying to process last year.

For me last year had many highlights, but it came with a lot of health issues and some major healing. It’s was probably the hardest year of my life but the year that has given me the most freedom. The hardest times produce some major growth, right? In a nut shell, taking soy, dairy, corn and gluten out of my diet made me feel better than I ever had in my entire life. My hands didn’t swell or ache, my feet didn’t cramp, my skin cleared up and wasn’t itchy. I could actually think clearly and had energy to make it through the day. I could tolerate the sound of my children’s voices and not have crazy outburst of anger. All of these are reasons for me to stay away from my food intolerance until my body heals. I would workout and sweat a bunch and feel amazing, so I also need to find out why my body was so stressed.  I couldn’t figure it out. Nothing in my life had changed and I felt like I had a good grasp on our day to day life. One of the major blessings of the year was that the kids were stable. I realized that that was “the problem”, like having stable kids should be a problem! It was like being in the eye of the storm,  I was inside the calm and could see the chaos around me.

In late October, one of my friends had a baby and he was in the PICU, I was actually able to visit him without feeling overwhelmed. I felt useful in the situation because I could understand what my friend was going through. Thankfully, he was healed and released quickly. But then it set in their baby was well and mine were not. Most likely they would not get better, but actually it was going to possibly get worse. It made me feel very lonely because I could relate to my friend but I had no one that could relate to me. It made me wish that I had not given away my copy of  Hearing Jesus Speaking into Your Sorrow. Shortly after these thoughts, by now it was November, I had a dream about Bentley not surviving his kidney transplant and what my life was like after him. I woke up very upset but didn’t know what to do with such a dream.  A few days after the dream, during a book study with some of the fabulous (I sincerely mean that) women in our church, we were talking about how Jesus wept for the injustice of sin and sickness. Then it dawned on me. I had never once cried about the kids diagnosis.  There was so much to do and get done that I didn’t think about processing it. I trusted God with the situation and so I felt that there was no reason to cry. Well, after 4 years of carrying all that internally my body was breaking. It couldn’t handle it anymore. Let’s just say I had to compose myself for the rest of that book study and lost it a couple days after. I cried on and off for a good week and then I felt like a brand new person. I literally felt 20 lbs lighter! I have never felt angry or questioned, anxious at times because of the waiting, but trusted that this is best for our family and that is God’s amazing grace on me.

Since this healing, I have had two dreams about Bentley having his transplants. One I am laying in the hospital bed with him reading and the other I was doing yoga in the room for him (funny, huh?) But I realize that these dreams, are so kind of God. I don’t see the dream when he doesn’t survive as a nightmare but rather as God coming along side of me and saying, “We can do this, it’s going to be okay.” And I believe that it’s true because no matter the outcome God is still God. He is good and he is loving. I cherish these dreams because they have seriously caused me not to be fearful of the transplants when they come.

So, with all that going on right before the bubonic plague the kids and I had at Thanksgiving, then hustle and bustle of Christmas, it is no wonder that I have not had time to focus on the new year. I am still recovering from the last one. I really have one goal for 2014 and it is to relish life. I want to enjoy every moment. I want more out of life; more fun, more memories, more living, more flossing, more crafting, more painting, more French studies, more friendships, more yoga, more reading, more love, more God. I cannot wait to see what this year has in store for us! As always, thanks for reading!!

xo, nikki :)

Summer?!

This post is shamefully overdue, but I’m not going to make excuses of why I haven’t blogged in a while because I only have one: I haven’t felt like it.  That is the truth. My health has been the main reason I have not felt like it. So, instead of using this blog to “complain” about how I feel or the lack of feeling, I just stopped blogging. I was so tired and hormonal that the last thing on my mind was keeping up with the blog.  Which isn’t really fair because that is how many of you find out about the on goings of the kids. (Btw, I am doing much better now. I have cut a lot of stuff out of my diet and working out regularly to help manage stress.) Time is also factor, but you can make time for things, right? So, putting that aside I would like to update you on our life… if you are still interested ;)

The summer has gone by way too fast, but I would be lying if I didn’t admit to being overly excited about this upcoming fall. I am turning 30 and my old soul is so excited!! I actually had the thought, ‘Wow! I am going to be 40 is 10 years. That is so cool!’ I know, I know… I’m weird. Any way, back to this summer. I feel like we just survived.

-We had my grandparents, my parents and my sister come by in the late spring, which was a lot of fun.

-It rained most of the summer, so we didn’t get out too much.

-My dad came back through for business and celebrated Marseille’s 4th birthday. Yup! No babies here! I cannot believe that she is four. She woke up on here birthday and said, “I’m four, I am not 3 a-n-y-m-o-r-e!!” Went to the Children’s Museum for her birthday.

-Danny’s parents made a day trip here to have a birthday dinner with us for Marseille.

-I went paddleboarding… If I lived near water, I would want one sooooo badly. I loved it!!

-The kids went to FL with my parents and Danny went to Chicago for business and I had a wonderful stay-cation.

– We too various hiking and picnic trips. Especially trips to the Biltmore.

– Brought the kids to the train fountain downtown and let them play in it.

-My sister came for a quick visit before heading back to FL

– Went to the zoo as much as we could, and fed the ducks and ducklings a couple times too.

-We did the summer reading program again, but the baseball game got rained out… not sure if I am going to do the library one anymore.

-We had a few doctor appointments early on in the summer and everything is looking good.

-We started homeschooling the last week of August. The kids are loving it, and I am loving the structure in our day.

-We just had a family vacation for just the 4 of us. It has been 3 years since we have done that and it was fun! We went to Charleston, and ended the week with a couple days in Charlotte, so the kiddos could hang out with their grandparents. Danny and I went to Carowinds for the day.

And now, we are at the present moment! I’m sure that I am forgetting stuff… but that is what happens when you wait so long to post!! I will try to get some pictures together and post them later a long with some news that needs another post… no we are not pregnant!

xo, nikki :)

Nephrology Update

Last Wednesday, the kids had their Nephrology appointment. It went well, nothing to report. The Dr. thought that the kids were looking good and ordered blood work. I had waited to do the Endocrinology blood work because I knew that the Nephrologist was going to order some too. I made the appointment for the blood work and prayed we would make it on time. We almost didn’t because there was an intern with the Dr. and it always takes twice as long. We are a special case and the Dr. likes all the interns to learn about us. Anyway, we made the blood work appointment without a minute to spare. The kids did really well even though I put the “numbing cream” on a couple minutes before we walked through the door! Bentley didn’t cry at all! We haven’t gotten the results back yet, but I will update the blog when I do! We went to Chick-fil-a to celebrate getting through the blood work! We were going to go to the zoo too but I had a couple errands to run. On Friday we went to the zoo and it was a beautiful day!!

I don’t know if many of you experience going to the doctor’s very much, but a very surreal thing happened at the past three appointments. Pretty much all the staff remember us and called us by our names as we walked through the door. I knew this day was bound to happen since we see most of these people every three months. But I guess the surreal part was that they were excited to see us and noticed how the kids had changed. One of the nurses that has been with us from the beginning, rejoiced with me because Marseille gave a urine sample, which Marseille hasn’t been able to do for the past two years! It’s interesting to see how these people become friends because they are helping us through our journey. Just some random thoughts :)

Here are some pictures from the zoo. We only saw about a quarter of the zoo because the kids had to go to the bathroom and I promised them they could play on the playground!

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The lemur plopped down to enjoy the sun!
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The Elephants :)
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The park and the zoo go hand in hand!
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Spring is here!
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The kids were sad that the goats were enjoying the sun and not coming up to them!
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Mom take our picture here!

xo, nikki :)

God’s goodness vs. my life

Here is my emailed response to my struggling friend that asked this question: How do you balance God’s goodness and your life?

While Bentley was still in the NICU, I remember a specific time when I was in the store and I questioned God’s goodness to me. Upon check out I noticed that People Magazine’s cover story was Christina Aguilera and her healthy baby boy. I was angry as I looked at her  face with her newborn. I questioned how God could give her a healthy baby and not me. I was the christian!

Thankfully, my thoughts didn’t last too long as I reminded myself, that I was the christian and I have hope. My greatest need has been taken care of  and I will be in Heaven one day, where every tear will be wiped away and all the pain I was feeling would cease. God is good. No matter the situation, I have hope!

I realize now that as I write these words, I should have praised God that Christina Aguilera had a healthy baby. I could have thanked God that she was spared from grief and for the precious miracle that her son is. I could have prayed for her salvation…. because I am a christian!

Fast forwarding a little bit. I’ll never forget the day that the results came back showing that Bentley’s kidneys were polycystic. I was giving a sewing lesson after I had gotten the news. The mother of my student was encouraging me and reminded me that none of us are guaranteed tomorrow. That statement of truth has helped me so much. I have come to realize that I only have grace for today. I need to cherish today and see God’s goodness in today. I know that this can sound like a lot of fluff, but I have come to realize that leaning and trusting God is the only way that I can get through my troubles.

As I remember who I was and who I am now, I see God’s goodness. It has only been through my circumstances, God’s strength and the Holy Spirit that have changed me. That is how I can look at my children’s disease and see God’s goodness. I THANK God for it because without these difficulties I wouldn’t be who I am today. I wouldn’t know God and love God the way I do without these trials.

My greatest need has been taken care of on the cross and through the resurrection of Christ. I stand on the promise of the day that is drawing near, when the good work that was started in me will be brought to completion and all pain and sorrow will cease. When I will see God and be rewarded for my obedience and hardship <<crazy>>>. I will be with the One I love!

The promise of Heaven is how I balance God’s goodness and my life.

I love you, friend. Keep fighting the good fight with endurance. Do not give up hope because we have a glorious hope. He will give you the strength that you don’t have to walk through this extremely tough trial. 

For the moment all discipline (trials) seems painful rather than pleasant, but later it yields the peaceful fruit of righteousness to those who have been trained by it.  Hebrews 12:11

The effect of righteousness will be peace and the result of righteousness quietness and trust forever. Isaiah 32:17

Keep sharing your heart, letting people pray for you and stand on His promises! God loves you most! Don’t doubt His goodness!

xo, nikki :)

Sobering thoughts on Sleep


There are just some days when I feel like I could sleep all day long. I was reading in the Valley of Vision — a favorite — and came across a prayer on sleep. I hope that one day I can have such a holy mind. It reminds me of 1 Peter 1:13,

“Therefore, preparing your minds for action, and being sober-minded, set your hope fully on the grace that will be brought to you at the revelation of Jesus Christ.”

The Puritains sure knew how to connect so many things in their life to preparing their minds. Even something as seemingly innocent as sleep.

Here is the prayer:

Sleep

Blessed Creator,

Thou hast promised thy beloved sleep; Give me restoring rest needful for tomorrow’s toil; If dreams be mine, let them not be tinged with evil. Let thy Spirit make my time of repose a blessed temple of his holy presence.

May my frequent lying down make me familiar with death, the bed I approach remind me of the grave, the eyes I now close picture to me their final closing. Keep me always ready, waiting for admittance to thy presence.

Weaken my attachment to earthly things. May I hold life loosely in my hand, knowing that I receive it on condition of its surrender; As pain and suffering betoken transitory health, may I not shrink from a death that introduces me to the freshness of eternal youth. I retire this night in full assurance of one day awaking with thee.

All glory for this precious hope, for the gospel of grace, for thine unspeakable gift of Jesus, for the fellowship of the Trinity.

Withhold not thy mercies in the night season; thy hand never wearies, thy power needs no repose, thine eye never sleeps.

Help me when I helpless lie, when my conscience accuses me of sin, when my mind is harassed by foreboding thoughts, when my eyes are held awake by personal anxieties.

Show thyself to me as the God of all grace, love and power; thou has a balm for every wound, a solace for all anguish, a remedy for every pain, a peace for all disquietude. Permit me to commit myself to thee awake or asleep.

What a heavenward perspective on sleep!