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 :)

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 :)

Restless

(This was the first time I got to hold Bentley after his birth. Feb 19th –15 days after he was born.)

Yesterday, I received a phone call from a dear friend that has brought back a flood of memories. It has caused my mind to be restless and prayerful. Yesterday morning, a friend from church gave birth to a baby girl named Adah. Immediately they noticed she was struggling to breathe and called EMS.

Adah has a tear in her lung and the hospital they were at did not have the machines needed to repair this tear. They transported Adah to another hospital last night, to perform a very serious surgery in which the lungs are bypassed and oxygen is put directly into the lungs. Sound familiar? All too familiar. Though we did not have to transport Bentley to another hospital, and the extent of the tear in his lung were fixable through inserting tube to pull out the excess air being leaked out of the hole, it’s still close to home! Odd, providence, that we just celebrated Bentley’s 3rd birthday last Friday, and I was looking at all the pictures of him in the NICU remembering. Remembering the smells of the hospital, all the beeping, the large machinery, the nurses, the tubes, the doctors, the time. Now, just 4 days later, we have a family in our church going through the “same thing”.
I’m having to cool my jets, there are so many things that I want to say! So many things, that I am remembering. One of the things that came to my mind immediately was all the animosity towards those who chose to birth outside of a hospital. Every time I walked through the NICU doors I felt it. We were the gossip at the nurses station– it’s true, a year later at a OB appointment for Marseille they told me so. I questioned our choices by the comments and the looks on family members faces. These things were just as hard to endure as not having Bentley with me.
My heart is heavy for Jennifer. So many emotions and thoughts that I had when Bentley was born have become so much clearer now. I’m praying for all of them, for healing, but so much more for peace and grace. I know that all of them will come. God is so good. Even if Adah were to leave this earth and be with God, that is healing. As I continue to have a restless mind, I have a peace because He will take care of them so much more than my thoughts and words can.

Nephrology Appointment

– All blood work came back looking good
– Urine testing came back normal
– One kidney came back (the important one) fine in the blood work, while the other was high.
– Thyroid came back normal, except the hormone produced was low. They do not feel like this is causing any problems because it has been tested three times and for the most part been fine.
– He showed us the ultrasound and explained the cysts.
– The liver is measuring the correct size.

The kidneys are enlarged to twice the size that they should be. The cysts indicate that there is a problem, but they are not necessarily causing damage/ not needed to be taken care of. They are also not causing him any discomfort or pain.

Bentley has been diagnosed with polycystic kidney disease. We are proceeding with which form of this disease he actually has. It can either be autosomal dominant or autosomal recessive. This disease, in most cases, is hereditary and leads to eventual failure of the kidneys. If Bentley has the dominant polycystic kidney disease the failure usually doesn’t come until his 30-40s, but if he has the recessive form, than it could be at any time. Kidney failure results in having a kidney transplant.

Unfortunately, the nephrologist feels that it is the autosomal recessive polycystic kidney disease because there are no known cases in our family history and because it didn’t show up in my pregnancy ultrasound. Usually, it would have been detected there. Thankfully, I go to a Maternal, Fetal Medicine Office for my ultrasounds and they specialize in problem pregnancies, so I know that nothing was overlooked. Another rarity to Bentley’s case is that it has shown up so late. Only 11% of children with this disease are detected during the ages of 1-2.

The nephrologist thinks that this is more liver involvement than kidney. So once we have the appointment with the GI, both of the doctors will get together to figure out exactly what we need to do and what testing needs to be done. They could do a liver biopsy right now to figure this out, but it isn’t benign and would rather go the less intrusive route. I am grateful for that.

Thankfully, Bentley is not suffering from hypertension, so he does not have to have a kidney transplant right now. Because he has great blood pressure and is not showing signs of extreme kidney problems, they can only monitor him for now and figure out what testing they need to do.

We have a one month follow up appointment on April 30th. He wants to do genetic testing for Bentley and have ultrasounds on Danny and my kidneys. The ultrasound for our (Danny and me) kidneys are to make sure that one of us doesn’t have the disease, or if we do which form. This will help to figure out what Bentley has. Also, if one of us has polycystic kidneys we can pass it on to our other children. Dominant is a 1 in 2, and recessive is a 1 in 4.

Right now we are doing alright. We are trusting God and really feel like He is walking us through this for a reason. On the way home, we were discussing what a privilege it is to suffer for God. It seems weird to say it, but it causes us to love and trust God more when we suffer. He has set up everything for us: people who care for us and a God that is faithful, sovereign, and full of grace and mercy, plus has given us salvation. I won’t say that we don’t have our moments of tears and sadness, but God’s grace on us has been so abundant. We don’t want Bentley to suffer, but to live a life that he can serve and glorify God. I’m sure that it will get harder as we find out more and more, but for now we are hanging in there!

So we could use your continual prayers.
For Bentley – For healing and that his blood pressure would stay normal and not cause him to need a transplant right now.

For us – That we would have peace, trust and clarity of mind as we meet with the doctors. That we would glorify God in this trial.

For the doctors – That God would really guide them with every aspect of Bentley’s diagnosis and treatments, if any.

For the baby that we are having – That this disease wouldn’t affect their body and that they would be a healthy baby.

My ultrasound for checking out everything and to find out the gender is next Monday. If you could pray, that if anything is unusual about this baby that they would find it. Also, that if either one of us has the disease that it would show up and be healed, so that it wouldn’t be a cycle in our growing family.

Lots of prayers to a very great God!!!

We stopped by the GI office because it was right down the hall from our other appointment. Their computers have been down for the past few days so their faxes haven’t been coming through. So, once they get the paperwork and review it they will schedule the appointment.

A glimpse into last year…

This is a long post… for me. This is more a reminder to me than an update or post.

My journal entry from Feb. 28, 2008

Well, if you can escape catastrophe four days in a row, I might have a “normal” day.

So far, we found out that our refinancing might fall through because the bank doesn’t believe that our house is worth the amount that it appraised for.

Second, my driver’s license and tag has been suspended because the computer at the DMV says that I showed no proof of insurance at the time of the accident. Which, was back in Oct and I was on the phone with the insurance company when the officer was writing the police report!

And… on Monday I developed a fever of 101.7 degrees. I had to go to the doctor’s because I developed a UTI. My fever has continued until last night.

Which reminds me, I dropped a plate on straight on my newly pedicured toe and now have a purple to nail that is going to fall off. Just great!

I really do feel like I’m being tormented. I have not seen Bentley for 3 days, which means 6 visits. I got really angry last night when I couldn’t see him. I’m just getting so tired of waiting and wanting to have him, plus having to explain what’s wrong with him over and over again. I don’t understand why we have to go through all of this right now. If the baby wasn’t enough of a problem, now the house, the car and license and my stupid fever, plus my throbbing toe! I’m tired and I don’t want to do this anymore, even though I know each day it gets closer to bringing Bentley home. I want him here so badly.

Bentley’s respiratory rate is still very high, so they haven’t taken him off the respirator yet. They have started to give him my milk again and he is getting steroids. Hopefully, this will help him improve quickly. They have agreed to let me do Kangaroo Care, which is where you hold the baby skin to skin for several hours. It’s supposed to help them nurse faster and be comforted by you. That’s why I want this fever to go, so I can start to do this! For now that is all the updates for the past 3 days.

Later that day…
Well, I just got a call from the hospital and they said that Bentley is off the respirator! He is doing great. He’s had two bottles already. They said that I can start breastfeeding whenever I come in! Yay!

Right after receiving that call Danny called me to tell me that the car should be reinstated in a couple of hours. Then, not two minutes after we hung up he called back and said the next appraiser was coming out between 1:30PM-2:30PM to reappraise the house.

God your ways are very mysterious. I can’t believe the very minute I’m complaining about my circumstances, You are already solving them. You are so faithful even when I am not. Thank you for your faithfulness and I praise you for the work you have done in our lives, mostly mine, Bentley’s and Danny’s.

Yesterday, I read some of the Psalms and one specifically stood out to me.

Psalm 13
How long, O Lord? Will you forget me forever?

How long will you hide your face from me?

How long must I take counsel in my soul
and have sorrow in my heart all the day?

How long shall my enemy be exalted over me?

Consider and answer me, O Lord my God;

light up my eyes, lest I sleep the sleep of death,

lest my enemy say, “I have prevailed over him,”

lest my foes rejoice because I am shaken.

But I have trusted in your steadfast love;
my heart shall rejoice in your salvation.

I will sing to the Lord,
because he has dealt bountifully with me.

What a difference a year makes!

Mark 9:14-29 really helped me through this time. I remember the sermon on this passage because it stuck out to me so clearly when our church was going through Mark. The point of the sermon was sometimes it gets worse before it gets better. And that was definitely true in my life. Everything seemed to be getting worse and worse. We had so many set backs with Bentley and then all the other circumstances that came up seemed to be going badly made if feel like it really couldn’t get any worse.

Thankfully, God is sovereign and I never forgot that truth. No matter the outcome of any and all of these circumstances one fact could never change. I have my salvation. Jesus Christ dying the on cross for me was more important than anything. Even if Bentley had died, I am still going to heaven. Each day, I thank God for Bentley and for his life and allowing us to walk through our trial trusting and glorifying Him.

Bentley a couple days after being admitted to the NICU.

Bentley on Feb. 28,2008

March 5th — the day he was discharged from the NICU, which was a complete surprise. (A year from tomorrow!!! God is so good!)

A few days ago! Bentley talking to Dada on the phone. He’s a bundle of fun!