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 :)

Recap 2012, Goals 2013

This is a post devoted to revisiting my goals of last year and setting new ones for this year. It’s a long one, so thanks if you read it all!

Here were some of my goals from last year and how I fared:

Read Bible everyday – I didn’t do that one. I really enjoyed the first few months. But then I hit passages that were so familiar that I almost couldn’t concentrate and would get discouraged. So, I wasn’t consistent at all.

Get healthy/ lose weight – I successfully kept off 7lbs, and 3lbs keep floating on and off.  So, I’m almost there. Having had a stress fracture, my bum shoulder and travelling so much at the end of the year makes me grateful that I was able to keep any of it off!!

Book list – I didn’t finish all the books that I wanted but I read a lot this year and it was so much fun!

Finish what I start – I can’t say that I achieved all that I wanted to in this area. But it is getting easier.

Anger and expectations – This area will be a growing process until the day that I die. I can’t say that I conquered in this area, but I did have  many victories. Sometimes it was seeing it and correcting my heart before I acted on my anger or expectations. Other times was realizing my sin in the middle of it and asking for forgiveness.

Keeping the house in order – I can say that there were only a few times that I didn’t clean the house on the designated cleaning day. I think there was only one week that the house didn’t get cleaned. How is that for improvement!!

Schooling with Bentley – We did school here and there. After this summer, we officially start Kindergarten!

Staying on grocery budget – Negative. I have been really trying to work at this. I’m getting closer ;)

What 2012 taught me…

When I look back on 2012, besides seeing a whirlwind year, I see a range of emotions: connected, disconnected  joy, loneliness, and peace.

The beginning and the middle of the year went well but shortly after I got back from my trip up north, I went through a hard time. In the middle of it, I thought this must be what it’s like to feel depressed. I was completely unmotivated to do anything. I didn’t want to cook, sew, make crafts for the kids, can you imagine?! I was so confused, during this time I was doing a book study with some of the ladies in the church and the book we were going through was Because He Loves Me. It was excellent, I was learning so much about God, myself and our relationship, which is why I couldn’t understand why I was feeling so bad! One day after reading my Bible in bed, because I didn’t feel like getting up, God said, “you need me.” I thought, “Oh yeah, I need you.” I then prayed but it wasn’t for God to help me out of the “out of body experience” I was having, it was a prayer of dependence. I acknowledged my need for God and asked for forgiveness and immediately the fog lifted. It was night and day.

I have shared this experience with a few others and they have all said that travelling a lot can cause you to feel disconnected and sad. I think I was so distracted by all that we needed to get done and what I was learning that I forgot about God. The exact message of the book that I was studying. Months earlier, during one of my therapy sessions on my shoulder, there was a stretch that they told me to do. I simply needed to tilt my head back and look up. Look up. I remember how as the man was showing me, I was convicted. I focus all my attention on what is right in front of me and how I am going to get it done, that I rarely look up. God reminded me of this after I felt better. Since then, I have remember to pray with dependence and to do the stretch. I don’t put expectations on the days that I remember to pray this way. I know that just because a day went “well” does not mean that it produced fruit.

On to 2013…

One unexpected gift from the sad time last year was compassion. While I felt terrible, which was a total of a month, one of the things that I kept thinking was people live liked this?! I had never experienced not wanting to get out of bed other than because I was warm and cozy or still tired. It made me pray for Danny and my friends that struggle with depression from time to time.

During one of my quiet times, I was reading in Matthew and I was overcome at the compassion that Jesus had on all who sought him. He never turned anyone away. As I was thinking about this, God revealed the next thing he is going to teach me… compassion. I have to tell you I’m a little nervous about this one ;)

Each time God has revealed what he was going to teach me a trial comes. It seems it’s the only way he can get my attention. He always very clearly tells me what he is going to teach me.

First it was faithfulness, I got pregnant and Bentley ended up in the NICU and both of my children have ARPKD. Yet, lesson learned… God is faithful to his people.

Second, God’s love for me. This specific area of God’s love has always been weird for me, never really personal. I felt like God blanket- loved everyone. I never see how he specifically loved me. After my time of “depression,” I realized how much he loves me. He could have left me to myself, but he told me “you need me”, because he cares for me specifically. I learned that God’s love is not like human love, it is perfect and I don’t have to strive for it because I already have it. I need to rest in and be assured of his love for me.

Now let’s see…. compassion. There are so many ways that this could go, I am thinking of anything in particular, but based on the other ways that God has moved in my life, it has been pretty dramatic! I’m looking forward to this new adventure with expectation.

Goals for 2013

Being consistent.

Reading my bible consistently. Working out consistently. Eating well consistently. Praying consistently. Talking with family and friends consistently. Date night consistently. Cleaning consistently. Meeting with others consistently. Have the TV off more consistently… you get the picture! This year I just want to  preserver and be faithful with what I have going on right now.

This year, I am following the Bible Program for Shirkers and Slackers, don’t you just love that name?! It has been very encouraging. You read out of a different book of the bible everyday. I believe it takes 54 weeks to go through the entire Bible. I started on Jan 8th and have missed a total of 4 days. Three of those days were Sundays, which is always rushed in the morning and that is when usually I read. Overall, I think that this is the best plan that I have followed so far. It’s motivating because it is different everyday.

Otherwise, I’m taking it slow and trying  not to over extend myself, so that way I can serve and do things as needed!

Well, if you made it this far. Thank you very much for reading!!

Do you set goal for yourself? I’d love to hear some of them if you do! Thanks for sharing!

xo, nikki :)

Stronger

Redeeming Love by Francine Rivers is a book that I listen to over and over again. It has been a book that has helped me understand God’s love for me. About two weeks ago, I was listening to the book in the morning and this particular section of the book spoke to me.

A: Do you ever get the feeling that God is playing some horrible joke on  you?

M: No, he does it to make me stronger.

A: You’re strong enough

M: I’m not strong enough for what is yet to come.

Later that afternoon, I got a call from our Endocrinologist. The Endocrinologist and the Nephrologist talked for a while and decided to end the shots. The company that was going to be helping us with the medicine decided that we didn’t meet their criteria (after we had already received approval letters) Since we don’t have a way to get the medicine, the doctors decided to withdraw the Rx.

It won’t hurt the kids to be taken off of it since they haven’t been on it very long. The kids are responding well to their thyroid medicine so that should help them grow some. Our appointment in August will begin the intentional tracking of the kids growth.

This was a huge blow. I couldn’t believe that God would have me give the kids shots, contact insurance, and different companies to try and work things out. All of which are things that I fear. But then the words of the book that I heard that morning came back to me.

He did all of this to make me stronger and to depend on Him more, to show me that He give me grace and most of all to show me His faithful love. But the thing that stood out most was I am not strong enough for what is yet to come. I can look back on this trial and know that God was in it and He will help me in what is yet to come.

So, as quickly as the shots started, they are ending. Thank you to all of you who prayed for and asked us how they were going. We felt very cared for. The kids do great with them and we have about a week and a half to two weeks left of medicine.

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 :)

Bentley’s Health


This is going to be a very short post, as I don’t have much time to write :)
Bentley genetic testing came back positive, he does have Mutated Atosomal Polycystic Kidney Disease. Unfortunately, at this time there is still nothing they can do for him right now, but continue to closely monitor him. This news is not a shock to us and we are just thankful that we know what it is. God’s kindness and mercy have been over us. At Bentley’s last checkup with the pediatrician, he had gained 2 lbs, he is now 23lbs! The doctor was totally surprised because he gained that in one and half months! This is after taking him off the nutritional drink that he had been on. His almost daily avocado smoothie is a huge part of it :)

HERE is a webinar on the disease. If you are interested in watching it. It is 55 mins long.

God has been so kind in revealing everything to us at a slow pace. Well, at least for me. All of Bentley’s issues at birth have been a direct result of this disease. It is often caught in utero, but not always. I only had one ultrasound with the Maternal Fetal Medicine and everything checked out fine, so somewhere between 22 weeks and his birth things started to change. My mind is quickly tempted to what ifs. What if I had another ultrasound… would they have caught it then? BUT God, allowed the doctors to see no sign of present danger and told me I was having a very health boy… what if they had told me I wasn’t having a health boy. I would have been devastated! To have your first child and know that he wasn’t going to have a good chance of surviving, isn’t very encouraging. God protected me from that! I’m so grateful!
Then, all of the signs for this disease were present at the NICU… underdeveloped lungs, problems with salt levels, hypertension, the use of a ventilator and NO2… why didn’t they catch it then? Well again, I see God’s hand in that. What if they had saved Bentley’s life and turned around and told us that he probably will need a kidney transplant and possibly dialysis before he reaches 10 years old. Would we have been so excited for his first days home, the first year of his life? Probably not. God has slowly been revealing things to us so that we can grow in trusting at each stage and I cannot express how thankful and grateful I am for that. Sometimes it is nice to have all the answers and know what is coming, but we were able to enjoy Bentley for a full year without any problems or complications, and God has reveled to us his disease before it is too late. Again… HOW KIND!!! What grace!

Bentley’s occupational therapy has been going so well. All of us are so please. He is gaining muscle around his stomach and it doesn’t get nearly as big and bloated. His therapist commented yesterday that all the nurses have notice that his ribcage is going back in place and his is body is responding so quickly. It’s hard work for him. He is exhausted after his workout! They all love him so much. I have met so many devoted mothers in the waiting room. Many of them have been going to therapy for years. I can’t complain one hour, once a week for eight months is nothing compared to their children. God has been so kind to Bentley. What a testimony he will have one day!

Well, that was a “quick” update on Bentley. I will have one on Marseille either later today or tomorrow.

Bentley’s Check Up

At Bentley’s 12 month NICU check up, the doctor felt that Bentley’s liver was enlarged. He felt like it wasn’t an immediate concern and asked me to reschedule a 12 month wellness check up to get it checked out. Our insurance had just been dropped by our regular doctor, so I had to find a different office. We ended up at a highly recommended office by God’s provision. At his appointment, they didn’t think that his liver was enlarged, but thought it was low. Since this was their first time seeing him, they wanted to get a couple of background things checked out. They scheduled: a chest x-ray to make sure that everything was healed, lab work because at his newborn screening there was a T4 – thyroid problem that had never been followed up on and an ultrasound of his stomach to see what was going on with his liver.

All of these tests were done last Thursday. His lab and blood work came back fine. His ultrasound found cysts in both his kidneys and it is causing his liver to over work. The liver has actually reopened the umbilical cord vein. So, the pediatric office is scheduling us appointments with a GI (Gastrointestinal) specialist and a Kidney Specialist. That is as much as we know right now.

We would love your prayers for Bentley and for us. Of course, we would love for him to be healed by God, but if treatments are the answer we pray that they would work quickly and efficiently with no damaging effects. Our desire is for Bentley to live a long healthy life glorifying God.

So far God’s grace has been abundant. He has recently reminded me of how He has been faithful, sovereign and trustworthy, and is giving us another opportunity to walk out our faith.