Thursday, March 23, 2017

Floodwaters

It’s dark and the floodwaters are rising. I’m swimming with as much strength as I can muster to try to reach the water’s edge. Yet, it’s as if I’m getting nowhere. I’m not moving. The current is too strong. The waves crash harder and the water rises higher. It’s up to my neck. I can’t touch the bottom. I’m struggling with keeping my head above the water, but my arms are becoming tired. I’m not sure how much longer I can stay above the floodwaters…

“Save me, O God, for the floodwaters are up to my neck. Deeper and deeper I sink into the mire; I can’t find a foothold. I am in deep water, and the floods overwhelm me. I am exhausted from crying for help; my throat is parched. My eyes are swollen with weeping, waiting for my God to help me.” Psalm 69:1-3 (NLT)

 “Get up, God! Are you going to sleep all day? Wake up! Don’t you care what happens? Why do you bury your face in the pillow? Why pretend things are just fine with us? And here we are – flat on our faces in the dirt, held down with a boot on our necks. Get up and come to our rescue. If you love us so much, help us!” Psalm 44:23-26 (The Message)

These verses have played throughout my mind so many times over the last few weeks. They reflect my not just my mind, but my heart, and I feel so much like David described…  The first paragraph is how I’ve been feeling lately. I’m losing strength and questioning where God is in all of this chaos, as we get slammed with wave after wave of grief, trauma, medical issues, and life.  When will the waves stop so I can just catch a breath? When will the waves stop so I can rest? When will the floodwaters dry up and I can walk “on land” and have a sense of “normalcy” for a bit?
These past few years have been so difficult, and while I’ve journeyed on and always kept my eyes focused on the Lord, it’s as if I’m walking deeper into darkness and am struggling to find His light in the midst of it all.

I had a breakdown moment last night, where I poured out all my feelings to Michael, questioning him where God is. And later begging God to show me that He is still here. That He is still present. Deep down I know He is there, but goodness gracious, it’s hard to remember it when I feel like I’m gasping for air every day.

We recently moved, which is a blessing. But that move comes with downfalls. You see, we moved to a ten acre property with my sister and her family. Ten kids. Ten acres. RENU Ranch. This is the blessing. The downfall is that our home is still not finished. We have been living in a one bedroom, one bath home with a makeshift kitchen (i.e. an oven, stove, and refrigerator – no counters. No kitchen sink) since December. Our kids have been sleeping in bunk beds in the living room, until recently when our house was opened up for the addition, when they’ve been sleeping in an RV (that friends blessed us with) with my mom. While I feel terrible complaining, knowing we are blessed to have beds to sleep in and food to eat and many of our problems are "first world problems", it’s gotten old. Our kids are missing a sense of normalcy. They’re missing our normal routines. They’re missing the way life was.  I keep telling them it’s temporary, but heck, even I struggle with it... Even though I know things could be much worse. 

We are hoping and praying our old home sells, but so far we haven’t gotten many showings because the housing market is a bit finicky and buyers are taking their time with newer/higher priced homes. This is a struggle and burden, as we need our house to sell so we can continue paying for the renovation/addition on the property. But so far, no “bites” and I’m stressing over finances.

Aydan had surgery #7 in January. This one was #5 for his eye. Since his prior surgeries, Aydan has had some pain and discomfort in his left eye (the one that had the detached retina), along with photophobia (extreme light sensitivity). Unfortunately, after a month, the issue was worse and he was in more pain, and we learned that the surgery didn’t take, and we were referred to a specialist an hour away. She said his case was just too complicated and that he really needed to be evaluated at Bascom Palmer (a hospital, specifically for eyes) in Miami (3 hours away). We promptly made an appointment and met with a pediatric ophthalmologist. He confirmed that Aydan was officially blind in his left eye. No vision occurred any longer. He told us that Aydan is no longer allowed to play any sort of contact sports or do anything that can result in trauma to his head/face, as he’s at such high risk of the retina detaching in his right eye.  He wanted us to see a pediatric retinal specialist to see what our options were in relieving the pain and photophobia he was having. The photophobia was so difficult that he can’t play outside much during the day unless he’s in the shade and wearing a hat because it causes such extreme pain in his eye and head. We made the appointment, which was 4 weeks away. In the meantime, we followed up with his original retinal specialist (not pediatric), who did not offer much help and made me more frustrated and confused on what the right decision is for Aydan.

I feel like we are just in a constant fight for getting good medical care for our children. While I’m certainly no expert, I guarantee that I know my children better than any doctor. Aydan is a boy who rarely complains of pain, so the pain in his eye and head isn’t “normal”. The light sensitivity is not “just a thing all kids have”.  Not one of my other kids have such extreme sensitivity to light that their eye shuts on its own when in any light or sunlight. Not one of my other kids have pain so bad with light that they’d rather not play outside in the sunshine. Not one of my other kids sometimes struggle to participate in activities because their eye hurts so much. Not one of my other kids have to hold one of their eyes shut while watching a movie because the television is too bright and hurts their head. This is NOT something “all kids have”.

I’ve read countless medical journals about all the surgeries Aydan has had. All the side effects. All the symptoms he’s having. Hours of research. And I’m just so confused and struggling with the right decision.  

We can either remove the band that was placed around his eye 3 years ago, which should help with straightening his eye, and hopefully help with the photophobia and “squeezing pain”. This can result in issues with his eyeball where there’s a chance he can actually lose his eye. Or, we can choose to do nothing and allow Aydan to live in pain and with the light sensitivity for the rest of his life. Either choice is difficult and a struggle. We meet with the pediatric retinal specialist in Miami on Monday, and I pray she sees our side and understands a bit more on what all Aydan is enduring. I’m not sure how much more fighting for good medical care that I can take.

Along with this, we recently had to give Max away. Max was our beautiful German Shepherd that became Aydan’s best companion and such a therapy to Aydan’s PTSD. Max loved our family too much and became too stressed (which had emotional and physical side effects on him) and became completely overprotective to the point of biting two strangers. For his safety, we had to give him to our dog trainer who could train him to be more of a work/protection dog because he just couldn't handle the stress of being a "family dog". This broke our hearts. Saying goodbye to him brought many of us to tears, but watching my sweet Aydan sob to the trainer, asking him to please take very good care of Max (leaving the trainer in tears, as well), my heart broke. I knew the outcome of what this would do to Aydan. I knew it would cause his PTSD to spiral out of control. Yet, I had no idea just how bad it would get and how bad depression would hit. My heart ached as I watched him over the next week and I struggled with questioning where God was when we had a long talk with Aydan later that week and learned of some things going through this sweet boy’s mind. Things no 8 year old should ever think or worry about. I became angry. Wondering how much more this boy would have to endure.

My heart is becoming so overwhelmed and weary. After the last two years, it feels like it’s just been hit after hit after hit. I know we've overcome even greater trials than these and yes, there have been blessings in between and I have always been great at remembering these...  But as I said before, it’s getting harder and harder to breathe when you’re already tired and you get crushed by each wave crashing down upon you.

I’ve been crying out to the Lord, especially at night when I lie awake for hours. I’ve been trying hard to remember this verse. “Cast your cares on the Lord and he will sustain you; He will never let the righteous be shaken.” – Psalm 55:22

While it promises that the righteous will not be shaken, sometimes I’m not so sure that that is true. I feel so completely shaken lately. Sometimes feeling how we can continue on and how I can muster up enough strength to endure much more. As I’ve researched it more, I’ve come to realize it means that he won’t let us be shaken FOREVER. He won’t make us endure these trials FOREVER. Eventually, He will bring us out of it.

While I understand this, it doesn’t necessarily help or make things any easier. Just makes me question more on when He’s going to say “Okay, enough! You have fought. You have endured. Your trials are done for now. Breathe and rest in Me.”

“Listen to my prayer, O God. Do not ignore my cry for help! Please listen and answer me, for I am overwhelmed by my troubles.” – Psalm 55:1-2 (NLT)

If anything, it’s comforting to know that David had so many struggles like I am. Questioning where God was. And while I’ve felt guilty thinking all these thoughts, I’ve also learned it’s okay. God loves me even when I’m upset. God loves me even when I’m questioning what in the world He’s doing. I take comfort in the fact that I know He will never leave or forsake me. Even during times where I just want to give up. He doesn’t. And for that, I praise Him. If for nothing else, I praise Him for being there always, even when I can’t quite see Him in the darkness.


Sunday, January 1, 2017

2016 - What a year....

2016. 




Wow, what a year! 

Started off our year with a newish cancer diagnosis for Ilana who had just had surgery two weeks prior to the new year. A few weeks into 2016, we went through the hardest time I've ever endured as my 9 year old baby girl had to be completely isolated from everyone for days due to radiation that she had to take. She was all completely alone. Night. Day. Eating alone. Sleeping alone. Throwing up alone. Just. Alone. It brings back a sick feeling to my stomach.... 



Her bedroom, prepared for isolation - everything covered in plastic.

Part of her bedroom, prepared for isolation
Letters and gifts from friends to help keep her occupied while she was in isolation.

The bathroom - that only she could use. Covered in plastic to keep the radiation from getting anywhere else.


Coming out of isolation and getting to hug Daddy for the first time in 3 days!
She had crazy side effects from this. Bone pain where she felt like all her bones were on fire. If you gently touched her arm, she'd be in so much pain. She couldn't walk or stand for long amounts of time. Scans showed cancer not just in her thyroid, but her neck and lungs as well. She went through numerous scans, ultrasounds, med increases and labwork, which recently showed that she needed another med increase and that her cancer markers had tripled.

We found out 6 months into 2016 that, after removal of my thyroid, I, too, had the same thyroid cancer as Ilana. 

Aydan had to endure two more surgeries and struggled majorly with PTSD from all his prior surgeries and events that happened the last couple years. 



It was a hard year. Such a hard year. Yet, despite all the "bad", we had SO much good, that I'm fairly certain all the good surpassed all the bad...

Ilana was surprised with tickets to see Pentatonix by someone she didn't even know! We went on a fun journey with friends to the east coast of Florida and got to meet Pentatonix and attend one of their concerts and became new friends with this tremendously generous family. 



We were given the news that ilana was given a wish from the Make A Wish Foundation. We went on the best trip of our entire lives. To Hawaii. Hawaii had been such a dream of Ilana's. We talked about what to do one day as a family when she beat cancer. When she talked of Hawaii, I was so sad because I knew it would never become a reality for our family and small budget. But God interfered and several people had nominated her for Make A Wish. We still talk about this trip often and its referred by so many of our kids about the trip that changed us. The trip that brought us closer than ever. The best trip in the world. The fond memories will NEVER be forgotten. 






We were given the opportunity through Do It For The Love to see Hillsong, Kari Jobe, and Rend Collective in concert on their Outcry Tour. Three of our favorite Christian artists!! We even got to meet Hillsong, and that alone is a memory that still brings me to tears as they stood around us and prayed specifically for our family. It was incredible. 

With Hillsong United!

With Hillsong United!


This year we were given numerous opportunities that were priceless to our family. Along with the cool concerts and trips, this year changed all of us. 

Ilana 
has grown in so many ways. This little girl who once feared needles now confidently walks into the blood labs and stretches out her arm and gives vials of blood like its nothing. I guess blood work every 4-6 weeks for a year makes you a pro! She has matured beyond her years and grown leaps and bounds in her faith. She's our constant reminder that God answers prayers - maybe not always how we asked, but He still answers them. 

Aydan -
 has learned how to better deal with the PTSD and has overcome so much, especially with the help of our new dog (as of February), Max! He could have turned out to have a hardened heart, but no. He's our constant giver. With a heart of gold and a sensitive spirit that knows what others need and often feels what others feel.  I'm really not sure you'll find someone more generous than him. He sees others with a heart like Jesus. If there's a homeless man, you'd better believe we MUST stop and help. If you hear sirens while driving, he's usually the first to quickly announce that we must pray. Right then and there. If he sees anyone with less than him, he will literally give all he has to them. I've witnessed this constantly and it's just incredible how God is healing his heart, despite the past trauma he's endured! 
Aydan and Max!

Mikiyas... 
He continues to grow in knowledge of the Word. He knows biblical facts better than Michael and I it seems and still strives to be a missionary when he grows up! He's growing into such a handsome young man and has grown leaps and bounds in self esteem and loving himself. This is a tough thing for a little boy to grow up many years in an orphanage being told he was yucky, unlovable and untouchable. Just because of HIV. He's learned over the years of being home that these things are NOT true, but I know it still plays in his mind. Satan is realizing though, that this year, these lies aren't working so well. We started growth hormones late last year to help boost his growth because he's been so tiny and he's struggled a lot with being one of the smallest in our family, yet the oldest child. After 6 months, his heart/mind began to change and self value and heritage began to kick in. He decided that despite people's constant questions, despite people's not so nice comments, he was going to start embracing his smallness. He was going to accept the fact that many Ethiopians just aren't tall like Daddy and many are actually pretty short. He began to think of his image from God's perspective and he was finally able to love himself. The way God created him. This is something he could only get to on his own with the Lord's help! And he's grown 3" since last year, 1" being without the assistance of growth hormone shots! He's also gone from a huge handful of meds to just 4, along with his cardiomyopathy improving so much that his heart is now functioning normally!

Mireya....
This has been a tough year for her. So many changes. So many appointments that she went to with us and she's not at the age to understand any of it. She's regressed a bit in some areas and separation anxiety has kicked in a bit, but my goodness, she's always such a joy. She's been the one holding Ilana's hand during bloodwork, helping distract ilana from nervousness at appointments. Constantly making our family laugh with her goofiness on hard days. And on days where I struggle a lot with what in the world God is doing and question where He is, she usually is right there, sits in my lap, squeezes me tight or wipes my tears away. And that's when I remember. God is there. God gave us Mireya. When doctors said there was no more chance of pregnancy, she denied all odds and was conceived and fought to eventually be born completely healthy. She is our miracle. God still does miracles and this is why we have Mireya (whose name means miracle)! And she's not just a joy to us, but to SO many others. When she spots someone (usually an older man) alone anywhere we go, you'll usually see her flirting for his attention, and once she's got it, she won't let go and she becomes joy for someone else during that entire time. To see her having a whole conversation with an elderly man without a care on what's going on around her is just the sweetest, most precious thing. I hope she never loses that. 



Michael and I... 
We have grown closer than ever throughout all these trials. It's crazy to look back and see what all we've endured and suffered over the last 11 years of marriage. And to see ourselves today, stronger than ever. It's crazy how God refines us in the fire if we allow Him to. Michael has been my constant rock and it's been a true blessing that he's been able to be there with me for every surgery for the kids and me, along with every cancer appointment for ilana. His job has been truly amazing and they blessed Michael with an unlimited amount of time away for cancer appointments or surgeries that would NOT count against his vacation or sick days. Not many employers would ever be so generous, and we are so incredibly thankful. I can't imagine doing any of this without Michael there with me...





Me.
 I've struggled a lot and questioned God and wondered where He is at times.
 Despite the constant hard, I've always found my way back to Him and realized that He is in control. That His ways are perfect. That He is GOOD. 

Cancer sucks. But God is still GOOD. 

Watching your child while in complete isolation from everyone for days is harder than anything you've ever imagined. But God is still THERE. 

Watching your child struggle with PTSD and dark thoughts is heartbreaking. But God is still THERE. 

Watching your child go through what seems like countless surgeries is exhausting. But In Him, you receive rest. 

Going through surgery yourself and finding out you have cancer, too, feels defeating. But God always answers prayer. 

Struggling with the ups and downs of having no thyroid, sometimes being so absolutely exhausted its hard to get out of bed or you find yourself falling asleep from sitting longer than a few minutes, or a migraine so bad you cannot move for hours, or weird and unexplained aches and pains... 

It truly seems unfair, at times. 
But God. 
God is still GOOD.
 This year, my faith has grown stronger than ever. What Satan meant for harm, 
God used it to pull me closer to Him. 


2016 was one of the hardest years ever. 
But my goodness.... 
The love and support we've received has been truly incredible and for that I am grateful.  

I hope and pray that 2017 brings continued hope, healing, and restoration. 
But no matter what, I know my hope is in Him. It is always in Him. 
And I'm confident, His plans are perfect. 

I'm excited about one of His plans coming to fruition in this new year....

We finally moved and have began something we have dreamed of for a long time... 
Living more with less. 
Minimizing.
 Downsizing. 
And homesteading with my sister and brother in law and their six kids on ten acres. 
We are living tiny. Super tiny! 

Learning more about living together as a family of six in a tiny home has been interesting as we wait for our home to sell and an addition to be built onto our one bedroom one bath home. I honestly am loving it, though. Our kids are learning to be thankful for what we have and realizing what truly matters.

 I can't wait to see what God has in store for this property and our "family compound" and cannot wait to give Him all the glory as we start this new adventure of homesteading on this ranch with ten kids on ten acres (and will try to blog more on our adventures)!  

Happy New Year, friends....
 I pray 2017 is full of hope and that you feel God's unending love for you... 



Love, 
The Nuñez Family