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 :)

Advertisements

NYC in pictures

xo, nikki :)

SPRUNG!

We had a wonderful weekend enjoying our risen Savior and his creation! Besides spring springing, other things have sprung too!!

addyandmar
Marseille had been looking forward to holding baby A
pass by biltmore
We did a quick drive by the Biltmore house.
playing on grounds
Playing games at the Biltmore Village and farm
tulips
Spring has sprung! I love the colors of these tulips!
Bentley loving the tractor
Bentley loving the tractor
Marseille was equally excited!
Marseille was equally excited!
good ole family picture
Family shot!
Bentley and his friend D looking dapper!
Bentley and his friend D looking dapper!
Easter dessert! Hazelnut-Mocha Meringue Cake... it was wonderful!
Easter dessert! Hazelnut-Mocha Meringue Cake… it was wonderful!
Marseille's second hair cut
Marseille’s second hair cut
She likes it!
She likes it!

Danny’s aunt passed away on Friday, which was very hard on several accounts. Mostly, because she is gone, but also because for about the past two months I have been planning a HUGE surprise for Danny. HUGE. Well I had to spring my secret early due to funeral plans. Ugh. Doesn’t that sound horrible?! But it was reality. When Danny told me that he was going to put in for time off even though we didn’t know the exact day of the funeral. I had to reveal that I had called his work and took time off for him next week (this week). Then I slipped and said we are going on an airplane so this is something that we really can’t change. Danny was shocked. He was so surprised and excited! I knew that night I was going to have to tell him everything because he would be unbearable… guessing and hinting. So when he walked through the door, that evening I told him that we were going to NYC to attend a conference for parents and care givers of children with ARPKD. He was amazed and excited. I was very excited and relieved to not hide my excitement anymore! He has never been to NYC before and the conference ends on Sunday, which happens to be his birthday!

So, there is the long and short of it! This Thursday, we are headed to NYC to learn more about ARPKD and CHF and to do lots of networking…. plus see NYC!!! Please pray that it would be a great time and that we would learn lots and make connections plus that the weather would be good also safe travels. Thank you so much!!

Besides the death of Danny’s aunt, we had a WONDERFUL weekend! We visited the Biltmore, had Easter service with our church family, lunch with friends that in our eyes are family and Marseille and I got haircuts! There was much talking, laughing and silliness. I imagine one day, we will be doing lots of that with our Savior! Thank you Jesus for dying on the cross for our sins and victoriously rising again to bring us back to God! I hope that all of you enjoyed your weekend too!!

xo, nikki :)

ps- Could you also pray for Danny’s family, his Aunt’s memorial and burial is this Tuesday and Wednesday? Thanks again!!

Daily Suffering

Time for the next question: daily suffering and pain, watching your children suffer and being powerless to take it away?

I don’t really have a good answer for this one. To be completely honest, I am not a super sensitive mom. This is probably God’s blessing on me. I am sad that Bentley and Marseille have to walk through this but I really don’t think a lot about them suffering or taking it away. I am not trying to be flippant, or uncaring, I really just don’t think about it. Besides giving my children a lot of medicine each day, I really don’t view them or treat them differently. They appear normal and we live each day as I think most normal families do. I don’t dwell on why God has chosen this path for them, and I hope that because I don’t question, they won’t question it either. If anything, I pray that this disease causes them to cling to God quicker than most.

Would I love for them not to suffer? Um, definitely yes! Would I love for them to be healed? I pray for it daily.  If I could take it away I would, but I can’t and no amount of worrying or questioning is going to take it away. God has chosen to bless us with this disease, and I am not saying that sarcastically. I think Laura Story says it wonderfully:

‘Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the achings of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

~Blessings by Laura Story

I don’t know if this makes any sense! I love my children but God loves them more, more than I ever can or could. I learned from the minute, literally, that Bentley was born that my children are not mine. I have to trust God completely that He knows what is best for Bentley and Marseille and if ARPKD is what is best right now…. bring it! When Danny and I are discouraged in our situation we always come back to the same thing: it could always be worse.

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 :)

Questions

A struggling friend of mine recently emailed me some questions, and I thought that I would like to take my time in answering them. I also want to share them here. They are good questions and I hope that my answers will encourage others who are in the midst of trails in their own lives. I am not perfect, and my way of dealing with our trials is not the “right” way.

With that said, here are the questions:

– how do you balance God’s goodness with your life?

-daily suffering and pain, watching your children suffer and being powerless to take it away?

-how do you balance that with a God who loves you desperately and works all situations for the best possible scenario in your life?

-how is PKD best for the Roberts?

-how was it best when you knew marseille was going to have the same illness and future as bentley?

I will be taking the next few days to answer these in posts. I will be honest and open. If you have any questions, please feel free to leave your questions in the comments and I will add them to the list :)

xo, nikki :)

There’s a bluebird…

on our porch! A family to be exact. It has been a lot of fun to watch Papa and Momma Blue scope out our decorative bird house and choose to make it their home. The draw back to this close encounter is that they are using our back porch! Every time, Momma Blue sees us, she flies away. We want her eggs to hatch and, in order for that to  happen, she needs to be sitting on them! I’m grateful for this new little excitement! We all have had fun watching Momma Blue collect so much stuff to make her nest. Every time she went in, pine needles and twigs fell out. There was a huge pile of scraps on the deck. The kids enjoy trying to be quiet so that they will not scare them away. I was glad when she finally laid her eggs on Saturday. Hopefully, all three eggs will hatch! We’ll keep you posted!

xo, nikki :)

Papa Blue
Keeping a look out
Mama Blue
Surveying their new place
Eggs on June 2nd!
So small!
Momma Blue taking care of her eggs