Sunday, November 19, 2017

Weary in the fire


Isaiah 43:1-3

At 2am this morning, I began to read one of my devotionals which really struck me... Here's an excerpt:

"When you determine to take a stand in faith and refuse 
to give in or give up when the fires of life are blazing, 
you’ll make your enemy very, very angry indeed. Things 
may heat up for you before you see the hand of God move
 on your behalf. But never assess the power or goodness of 
your God by the heat of your fire.

The time that passes between the utterance of your prayer
 and when His answer is delivered is called “the testing of
 your faith.” Most people tend to give up when they pray 
and then nothing happens. Most people become negative, 
fearful, or bitter when the temperature of their fire is 
multiplied by seven. However, it is vital that you remember
 that the goodness and power of your God is unaffected by
 the temperature of the fire. "



This is all so very true... And the enemy is becoming very angry with our family right now. Things have been "heating up" more and more and I am becoming so very weary. Between the exhaustion from being unable to sleep from the steroids, and now all sorts of new crazy symptoms, it's getting hard to not give up.

I came down with thrush this week. Fuzzy feeling with white spots in my mouth, bleeding lesions, and then pain feeling like my tongue was being peeled off in strips. Thankfully medicine and natural remedies have helped this tremendously over the past few days and I'm on the mend...

The day after the thrush occurred, I began a new symptom that pretty much showed up out of nowhere as I began walking up some stairs to pick up my kids at our Friday morning Bible study. My knee locked up and it became so hard to walk and bend. I figured I had just moved it weird and continued on. It unfortunately didn't get any better and when we got home, I looked closer at my legs and found my knees were swollen and looked strange. As the day went on, the pain got worse and I had to literally limp out from radiation because my left knee would not bend without tons of pain. Unfortunately this pain has only gotten worse over the last day and I've found I have literal fluid pockets all round my knees. Apparently this can be a side effect from the steroids. It can also affect my thigh and calf muscles which is why my legs are in so much pain. The steroids are also causing swelling everywhere else and in my face as well. These steroids are just horrible! And unfortunately I have no other option as they are completely necessary to keep intracranial swelling down. So unfortunately this is just more stuff to endure over the next several weeks of radiation and being on steroids....

While I know it could be SO much worse, it was just one of those moments where that final straw  kind of broke the camel's back. This whole season isn't easy and these symptoms that keep getting added on make it so much harder. Our fire is being multiplied and I'm trying really hard to not become negative, fearful or bitter as it happens. I'm feeling physically, mentally, and emotionally exhausted and weary and so I guess this is my call out to please, please, PLEASE pray for our family. Please pray for us as we endure this fire. Please pray that we are able to continue to endure and fight and not give up. Please pray that we are able to continue to find and see joy. That we are able to continue seeing God's goodness and promises and power. Please pray for my kids as Satan attacks them each in various ways, trying hard to bring them down. Please just pray for endurance.

Please pray:
Galatians 6:9 
"Let us not become weary in doing good, 
for at the proper time we will reap a harvest if we do not give up."


 and 


Ephesians 6:11 
"Put on the full armor of God, so that you can take 
your stand against the devil’s schemes." 


and 


Romans 5:3-5
"We can rejoice, too, when we run into problems and trials, for we 
know that they help us develop endurance. And endurance 
develops strength of character, and character strengthens our 
confident hope of salvation. And this hope will not lead to
 disappointment. For we know how dearly God loves us, 
because he has given us the Holy Spirit to fill our hearts with his love."




(Also, side note. From here on out, my radiation time is at 2:45 instead of 4:00. I know many have chosen the 4:00 time to pray, and so I wanted to share this change)


I have no doubt that some of these attacks are occuring, because this morning, Ilana and Michael both take a full stand in their faith and fully give their lives to Christ in baptism at church! Because of this, I choose joy! Despite the pain. Despite the weariness. Despite the exhaustion. I am choosing joy in that these hot fires of life are NOT stopping my family from fully following our Lord. And I have no doubt it's from being covered so heavily in prayer.... So again, friends, family, and followers, thank you for all you do for us... To some of you, you may seem like a prayer is nothing. But for us. It's holding us up. Especially now where I seem to be hanging on by a mere thread... So thank you for blessing us with your prayer and your time.... Thank you for being constant encouragement to us....




Sunday, November 5, 2017

1:00am Writings - My New Normal

It's 1 o'clock in the morning... But I'm up and writing. God and I seem to have an unending date every day at 1:17am! So here's this week's update!

I'm at 2 weeks of radiation down. 4.5 weeks to go...

Things I have learned... Steroids are awful. They have so many crazy side effects! But I know they are beneficial, especially in my case. With having radiation to my head, I’ve been experiencing increased swelling in and around my right eye and horrible headaches. The radiation is causing intracranial swelling which is compressing on all sorts of nerves and blood vessels, which caused me to be in the most excruciating pain I have ever been in before on Monday. I was in so much pain I told Michael I literally just wanted to die. I’ve given birth to three babies without an epidural. I’ve endured kidney stones which I think was worse than labor. I would have preferred 10 kidney stones while giving birth, over the pain I was in Monday.  That was a really scary moment for me and the rest of my family to see me in such pain.  Michael rushed me to the ER, where they gave me a shot of morphine for pain. 

The next day they decided to put me on a different steroid that’s longer release and something I have to take 3 times a day instead of once in the morning, as the previous steroid was wearing off by the time I’d have radiation and the internal swelling would occur at night, causing the pain. While this steroid seems to be working (as long as I’m taking it at very specific times), it unfortunately is wreaking havoc on my body. My body and mind is exhausted, yet I’m unable to sleep. I’ve slept about 16 hours total in the last 5 days/120 hours. I’m able to sleep from around 10pm-1am and then I’m up the rest of the day... 

In a way, it’s been kind of a blessing, because I get some things done while everyone is sleeping (like making elderberry syrup, snooze tincture - I’m willing to try anything for sleep!!, homemade bread, etc), and I get a good length of quality time with the Lord. I’ve started doing 3-4 various bible studies and I’ve picked back up on writing my book that I’ve considered writing for years. Maybe God will use this time where I may finally complete it! 

But while I’m able to accomplish so much, I know my body is becoming weary and my brain is feeling all the affects from the radiation and the lack of sleep. I’m becoming more forgetful and confused and struggling with basic concepts. It’s weird... It’s like mom brain on steroids. Literally! 

Despite all of this, I find myself just consumed with joy. I’m constantly looking for things to be joyful about because I know how easy it is to dwell in our current situation and see all the bad and I do not want to be consumed with that. I know that despite our circumstances, God is still so very good!! And we are so, so blessed by Him. 

I have some great doctors who truly care... Not many doctors ever text you throughout the week just to see how you’re feeling. What a blessing it is to have a doctor who does this for me. 

My daily radiation time has become such a huge blessing and joy for me. I’m able to sit and talk in a women’s waiting room with other ladies going through cancer. I’m the youngest one in there by about 30-40 years usually, but it’s such an encouragement for me to talk to these ladies each day and I cherish the wisdom they speak of. I go into the radiation room and am literally strapped to the table with a face mask to prevent my head from moving at all during the radiation. This time has been so amazing to me as I lay there, giving back to all those who have prayed for our family over the years and I lay there in prayer for so many people who have shared their prayer requests with me. (If you have a prayer request, I would absolutely love you to email me at michaelandamanda@gmail.com or contact me on Facebook. I would LOVE to pray for you!) 

I have found that through all of this chaos, God has drawn me closer to Him than ever before and I’m just so overjoyed and truly happy... Our whole family is constantly working on choosing joy, as well. It’s been hard for some of my kiddos who already struggle with change and depression and anxiety. This month, during November, we are really focusing on GRATITUDE for how good our Lord is and we plan to use this month to give back to Him by helping others. Whether in prayer or in any other way God sees fit - our kids are thinking and praying for God to give them ideas of random acts of kindness gestures we can do each week and they are just so excited to give to others!! What better way to prepare for Thanksgiving and Christmas than aligning our hearts to give and be thankful?

We are especially thankful for each of our followers, supporters, prayer warriors, family (church and blood) and friends. Your prayers have helped sustain us on the hardest of days. Your monetary gifts have helped ease the burdens of all these medical appointments. Anytime I start to worry about our finances, we get a random check in the mail or a donation on our GoFundMe and it’s just a constant reminder again, that God is good and He will supply ALL our needs and He reminds me to stop worrying!! 

I know so many have asked how you can help tangibly, and I really don’t know right now... Your support and offers truly mean a lot. Really, your prayers are so appreciated and I will try to update once a week with specific prayer needs. 

Here are a few for this upcoming week:

  • For my kids... This is all a lot to endure for them. I’m always the one taking care of them and I’m always home with them. With me being tired and struggling with pain, I’m not able to as much for them and I’ve had to rely heavily on my mom and sister and Michael. They are a huge blessing! But I know it’s hard for my kids to not see me being “normal” and to have me leave everyday for an hour or so for radiation. They’re all still reacting in many different ways to all the change and while I know it’s normal and okay, it’s hard for me to see certain ones struggling so much... 
  • For Michael - it’s hard for him seeing me in constant pain. He’s so incredible though at taking care of me. Such a blessing to have a husband that loves me and cares so much!
  • For my steroids to allow me to sleep a little longer than 2-3 hours a day and for the exhaustion it’s putting on my body to not wear down my immune system.
  • For the amazing people I meet every day at radiation. For their bodies to heal completely of each of their different cancers. 
  • For wisdom for my doctors in knowing what things to do for me, as I’m pretty much a guinea pig/experiment as they’ve never treated this before. 
  • For the deep, internal pressure in my head to subside. While the headache pain has decreased from Monday, I still struggle with the normal "dull, aching headache" I've had for the last 6 weeks. But there's now a new kind of "pain" which is more of just internal pressure. I'm sure it's from the intracranial swelling, but I'd love for that pressure to be minimal...
  • For God to be glorified through our entire family's circumstance. No matter the outcome. 

Saturday, October 21, 2017

Our Next Chapter

What a crazy few years it’s been… Two and a half years ago we had to say a painful goodbye to our son as we watched him join a new family.  We didn’t understand God’s plan and purpose and why there seemed to be such a huge twist in our adoption story. We were heartbroken (and still struggle with grief to this day), but we tried hard to trust the Lord and His timing (to read more about this chapter, you can read it HERE). 

We didn’t expect what would happen 9 months later. I will never forget that moment when Ilana looked up and I spotted the large lump on her neck. After a bunch of doctor appointments, ultrasounds and a biopsy, it confirmed our biggest fear. Cancer. Her surgery was tough. The cancer was all over in her neck. The thyroid, the muscles, the lymph nodes, around her trachea and in her vocal chord. Hearing the doctor tell us that we may never hear our daughter speak again literally brought me to my knees later in the hospital waiting room bathroom as I cried out to the Lord asking “WHY?!?” Her radioactive iodine treatment was even harder. Having a 9 year old so completely alone and isolated for 4 long days. No one could be near her. No one could touch her. No one could eat with her. When she was sick from the medication, no one could be there with her to hold her hair back as she threw up violently. When she cried out saying “Mommy, I need you! Mommy I feel so alone!” I could do nothing. 

We would’ve never imagined that 6 months after her surgery, we would find out that I had the same exact diagnosis. Papillary Thyroid Carcinoma and I would undergo the same surgery (which thankfully revealed the cancer being completely encapsulated and not near as invasive as Ilana’s was).  

Then 2 months after that began the battle of Aydan’s eye pain, caused from prior surgeries on his retina. The pain was excruciatingly debilitating. It got to the point where he could not be outside because he was so sensitive to the light and it caused so much eye pain that he couldn’t function. It’s hard for anyone to go through pain like that, but an 8 year old boy? It was awful…  1 year and 4 surgeries later he is finally pain free and his retina is finally healed and attached. 

This latest hit caught us by total surprise.  I had begun noticing my right eye getting larger/more protruded. I was battling frequent headaches and my vision seemed to be getting blurrier. A few months went by with more symptoms and I began waking up with a swollen eyelid.  I really didn’t pay much attention to it and kinda wrote it off as stress and lack of sleep. It wasn’t until I was reading about my thyroid disorder (Grave’s Disease) and read about thyroid eye disease (TED). My symptoms seemed to fit and I decided I really should talk to my thyroid doctor about it. He referred me to an oculoplastics ophthalmologist who decided to have me get a CT scan to confirm the TED and told me to see a regular ophthalmologist to see about my vision changes.  We decided to use Aydan’s local eye doctor because we completely trusted him, and this doctor has shown us just how much he cares for our family.  This was when we first started to realize there was something more going on. He had me get an appointment with a few other eye specialists and told me to go through with the CT scan, all within the next 2 days. 

As I sat in the neuro-ophthalmologists’ office waiting to see the results of the CT scan, I never even considered or imagined that there would be anything beyond the thyroid eye disease. So when the doctor came in and told me that this was NOT thyroid related and that there was a tumor behind my eye, I was completely speechless. He showed me on the screen and explained everything to me and asked if I had any questions. I sat there, shook my head “no” and walked out pretty stunned. The next day, I was called and they wanted me to get an emergency MRI. This was when it really felt serious… After the MRI and lots of waiting and doctor appointment and a second opinion 3 hours away, we got the official results:

Most likely an atypical globoid meningioma that seems to be fairly aggressive that is wrapped around my optic nerve, which had already begun causing permanent damage to the nerve, resulting in the death of retinal cells, peripheral vision loss, blind spots, diminishing color, and overall decrease in vision.  A high dose of radiation, spread out over 6 weeks (Monday through Friday) is required in hopes that it stops it from growing any further. If the radiation treatment does not work, then that means this meningioma is likely something even more serious and our only other option is a very intense and invasive and scary biopsy/surgery with some very dangerous risks. 

As we drove home from Miami, feeling at peace about our decisions and at peace with what all will entail over the next few months, I listened to Bethel Music on my phone and spent time in prayer. As I looked up at the setting sun, I realized that the sun was no longer bright while looking at it with just my right eye.  I began to sob as reality set in… I began to pray for God’s will. For God’s purpose. That God will be glorified through every day. That He will be glorified with each appointment. And that no matter the outcome, I will always praise Him.

I’ve had people comment about how they don’t know how I can still be joyful. Or how I can still praise Him. Or how I’m not angry over all that has happened with our family over the last couple years.

I’ll be honest. Throughout the last 2 and a half years, I have been angry. I have literally laid in bed and cried out to God asking “Why?” Asking Him where He is. Asking Him why He seems to have just left me alone. So many times where I’ve felt such darkness. And I’ve become so overcome with grief that I can’t see Him and can’t fathom why He would allow all these things to happen to us.  (You can read about it in my last post “Floodwaters”). Eventually the darkness would begin to dissipate and I’d see that God WAS still there.

But this most recent twist in our story has left me thirsty for more of Him. I’ve felt such an overwhelming sense of peace that it just doesn’t make any sense. It reminds me of the verse in Philippians 4 “Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.” I’ve realized that through prayer and devotion to Him, I’ve become filled with a peace that has surpassed all understanding. 

When I ask “Why?”, I now realize that all the prior experiences in medical crises, surgeries, and such have prepared us for this moment.  In the 12 years that Michael and I have been married, we have been through 18 surgeries, hundreds (if not thousands) of appointments, and what feels like a gazillion scans/ultrasounds/tests. We have a daughter who was born with a cleft palate and only one functioning kidney with kidney reflux, who was diagnosed with a rare thyroid cancer at the age of 9 and is still battling it to this day. We had a preemie son with the same kidney issues, and who has had eye issues since he was 6 months old who had a detached retina at the young age of 5. We have a son with HIV, a heart condition and endocrinology and growth issues. We battled a difficult surprise pregnancy that resulted in another preemie child. We have battled much more than the average family, and while that really stinks sometimes, I’ve thought about what it says in Romans 5 “We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation.” And I’ve realized just how true this is. Through all these situations, we have developed such an endurance that this newest diagnosis isn’t going to knock us down.  Isn’t it better for us to endure this trial when we are well prepared to overcome? 

All that said, this isn’t easy. This new diagnosis is a hard pill to swallow. This diagnosis comes with a lot of pain and frustration. I wake up every day with my eye swollen and looking like I was punched in the eye the night before. I’ve been suffering a constant headache for over 3 weeks which seems to be getting worse as the days come.  And what makes it hard is that I cannot take anything for the pain, so I’ve learned to just deal with it and I try to ignore the pain as much as I can. I AM angry that we have to endure this on top of everything else we’ve endured. But even so I choose to praise Him. I choose to. Because despite the pain. Despite the diagnosis. Despite it all… God is STILL good. I have to endure this pain and suffering, not because of the Lord, but because we live on earth. This world is a beautiful place. But it’s a fallen place. And because of this, people will endure hunger, pain, and suffering. But this is even more reason to praise God. That because of His great love for us, He sent Jesus. So that one day we don’t have to suffer anymore. One day, we will be healed and whole and pain free. Because He loves us!! Regardless of the pain the world gives me, I still have the hope and love of Jesus. Jesus is still good! This is my answer to my kids who have been asking why God is allowing so much to happen to our family. That we live in a fallen world with sickness and where bad things happen, but to constantly cling to the hope and goodness of our Lord and to remember that God can bring beauty from these ashes. 

Aydan came up to me one evening and said “Mommy, I think I know why God is allowing this tumor. There are still a lot of unbelievers in the world, right? So maybe He is going to use your tumor to bring others to Jesus if you keep talking about Him when you’re hurting. People are going to see the hope of Jesus in you and want that, too!”

So even on days when I’m angry, I will still praise the Lord. Even on days when I’m in pain, I will choose to praise the Lord. Even on days when I have nothing to say, I will STILL choose to praise Him. No matter what the outcome of this diagnosis may be, we will still choose to praise Him. Even when it makes no sense.  I’ve learned that in order to keep myself from constantly focusing on all the hard stuff in life, I have to choose to find joy in every situation. And so I praise Him for all the good that still occurs, in between the hard. 

Lately I’ve been praising the Lord for the support system He has given us. I’ve been inundated with texts, Facebook messages, phone calls and emails. It’s honestly been hard to keep up with everyone. It’s amazing. I never imagined that we’d literally have hundreds of people praying for us all over the country. We have people asking to help with the kids, asking to help us with medical bills, asking to bring us dinner, heck – even people offering to come and clean toilets! We are seriously so blessed by what God has given us – a giant body of Christ who truly loves and cares so deeply for our family…  Along with that, RENU Ranch. Our home. Living next to my sister. The whole point of RENU Ranch was for it to be a place of renewal. We never imagined we’d be enduring something like this, but living so close to family is something I’ve been praising the Lord for every single day. God has blessed me SO much and I am so thankful for all He has done for me. 

For those who have asked for specific prayer requests….
- For God to be glorified through it all
- That the tumor will shrink over the next 6 weeks of radiation and for minimal side effects
- For my kids. They are all reacting in various ways to all the chaos that has occurred over the last 2 weeks. Regression, PTSD, depression, attitudes, worry. It’s been tough and I have a feeling will get even harder in the weeks to come as mommy leaves each day for appointments
- For Michael – that he continues to trust the Lord through it all




I’ve struggled with blogging consistently, and so I’m not sure how often I’ll be able to update this through our latest journey. I will be sure to post updates in our Facebook group that originally was created for Ilana’s cancer, but now has become more of a Warriors for the Nunez page. You can follow that HERE. Another friend created a GoFundMe page to help with all the crazy expenses that will incur with this. She will post occasional updates on there, too. You can visit it HERE.


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

Monday, September 19, 2016

Thy Will Be Done

As we begin school this year, this song resonates with my soul... 

"I'm so confused
I know I heard you loud and clear
So, I followed through
Somehow I ended up here
I don't wanna think
I may never understand
That my broken heart is a part of your plan
When I try to pray
All I've got is hurt and these four words
Thy will be done..." 




https://youtu.be/PAmh3yvmzXs


I started another school year with just 4 kids today. Just a couple years ago, I thought I'd be homeschooling 5. 

Yet, here I am. With just 4. 

I knew I heard God loud and clear when we were presented with the complete surprise referral of adopting a second child. God told us "Yes. Bring home Eyob, too." I thought he was going to be ours forever, just like Mikiyas. 

Yet 2 1/2 years after bringing him home, God told us we needed to let go. That in order for Eyob to reach his full potential and to be fully healed and for the rest of our family to heal from trauma and PTSD, along with keeping everyone safe, we needed to find a new family for him... I was so confused and heartbroken. I didn't understand why He wanted us to do this.

As I look back over the last year, and look forward into this next year, I now kinda get it. I honestly don't know how we would've been able to endure life with two cancer diagnoses, various medical conditions, AND a child with RAD (Reactive Attachment Disorder) and severe needs. Life has been hard. So hard. And it's getting even harder as we pursue new specialists to figure out the depth of Aydan's medical needs. After a specialist visit on Friday, we found out that he will very likely need surgery in the coming months on his kidneys and ureters. We also came out of that appointment needing appointments with orthopedics for Aydan (bc of some spine/rib issues) and genetics for all three of our bios (to test for various genetics syndromes) and a kidney ultrasound for Mireya (because it's very likely she has the same kidney problems that ilana had and Aydan now has). Along with that ultrasound, we also have to do yearly thyroid ultrasounds for the younger two, to make sure there are no thyroid growths, as it's likely that the thyroid cancer ilana and I have are genetic. 

I am exhausted. I'm so weary and worn. Yet I am so thankful that we were obedient with what God called us to do a year and a half ago. God certainly knew what He was doing, even when we didn't understand. He knew what we would be facing in the coming years, and knew that dealing with those tribulations, along with the daily hourly fits and completely unsafe tantrums of a RAD child would be my undoing. He knew that this sweet child would be unable to heal in a home with so many medical uncertainties. In a home where we'd constantly come and go with appointment and surgeries and out of state travel for specialists. He knew all of this way before we did. And he ensured healing on both sides by finding the perfect family that would come alongside our family and adopt our son and instill the same Christian values that we hold so dearly in our hearts. They would love him with all their being. And would help his heart to heal and his brain to see that he was able to love again. His brain controlled his heart and because of that, the fear of love blocked all ability to attach to a mother. Yet, through God and this family, he was finally able to. He is healed. He is whole. God turned something horrible like RAD and made beauty from those ashes and helped him be able to love again. I was so confused on why God couldn't do that with me. Why He couldn't allow Eyob to heal in our home. Why He couldn't allow Eyob to love me the way he loves his new momma. But now I understand. God knew that these coming years in our family would just be too much for that trauma filled brain... And He paved the way with so many God-incidences that we knew that putting Eyob in the France family was the perfect plan. 

I still am confused on why God does what He does. Like, why couldn't he heal Eyob's heart in our family AND heal our family of all the medical problems we are facing? But then I'm reminded that we live in a fallen world. And because of that, we humans have to endure things like cancer, death, financial difficulties, etc. Just because we are believers and followers of Christ does not make us immune to the evils of this fallen world. While sometimes I feel like we've gotten more than our "fair share" of medical problems, I'm also reminded that it could be worse. And also that God is using our family in the midst of these hard times. We're able to share how we choose joy, amongst the difficulties that life throws at us. We're able to share with so many, the source of our joy... 

So... While I'm exhausted and weary and ready to just be done with appointments and specialists and surgeries, I'm also choosing joy. Despite the weariness, there's SO very much to be thankful for. 

I live in a country where I can drive to get medical care. I don't have to walk for days. I can see every specialist we need, even if it requires flying out of state. 

I live in a country where I can get (good) HIV meds for my son so that he can finally become undetectable. While he has a damaged heart, from lack of good meds in Ethiopia, I am so thankful for the ability to have heart meds that make it possible for the damage to not get worse!

I live in an area with clean water. 

I have a pantry and freezer and fridge filled with food and ingredients that will last us months. 

I have hot water. A washing machine. A dryer. 

I have a bed. A pillow. A blanket. 


And you know what else that I'm thankful for?!

 I'm thankful that we got some great news from Ilana's doctor this morning.

*** Ilana's cancer markers have gone down!  ***

They're still detectable, but they have miraculously gone down!! This is HUGE! This is something we are celebrating and praising God for!!! I am in tears for some (finally) good news!!


Our life sure isn't easy.... But I'm choosing joy in all of His plans. 
Whatever our future holds, 
Thy will be done...

Wednesday, September 7, 2016

Cancer. A curse... or possibly a blessing?


This month is not only childhood cancer awareness month, but it's also thyroid cancer awareness month. As we traveled home recently from Pennsylvania after visiting CHOP (Children's Hospital of Philadelphia), I sat on the plane in deep thought about our past year. I just so happened to sit next to a kind, elderly couple. The woman asked us if we were on vacation, so I briefly explained that we were coming back from CHOP because of our daughter's thyroid cancer. This woman had just recently had an ultrasound on her clavicle due to unusual swelling. Swelling in her neck and clavicle that's been there for several years. They found thyroid nodules on the ultrasound and told her to seek a specialist. Coincidence that we sat next to each other? I think not. I told her how important it would be for her to find a good endocrinologist and made a few recommendations for her and further explained our family's story. I told her that I would pray that it was nothing and hoped all would turn out okay.

That got me thinking more as we continued our journey home... The last 9-10 months have been hell at times. Watching my 9 year old go through a cancer battle. Going through an invasive surgery, countless bloodwork, enduring complete isolation for what seemed like forever as she struggled crying out for Mommy, yet I was allowed no where near her for an entire week. There were days when I was just so exhausted from the countless appointments and worries that I struggled with getting out of bed. And then just over 6 months after my daughter's surgery, I was having my own surgery to remove my thyroid, thanks to papillary thyroid carcinoma. The same diagnosis as my daughter's.

It's crazy. Insane, really. Looking back and remembering all that our family has endured. And yet, as much as I remember the pain and the hard stuff, I find that what most consumes my mind are the blessings during this journey.

I look back and I see just how many have followed our journey and lifted us in constant prayer since I first discovered the lump on Ilana's neck on November 9.  I look back and I remember that the day of Ilana's surgery, dozens of people gathered in our church to pray on behalf of Ilana, joining the hundreds across the country. You guys blessed us! I remember looking straight into the surgeons eyes and telling him that he had hundreds praying for him and his team, and he looked back in amazement. As if he's never heard that before. You guys blessed him! I look back and remember while Ilana was in isolation and I cried out to God asking for relief because I couldn't do this, that's when a countless amount of people stepped up to sign up so Ilana was covered in prayer every hour of every day until she could finally be around Michael. It left me in tears to see and as I look back and remember and write about it, I'm brought to tears.

I look back and I see the journey that Ilana has been on and how much her faith has grown. I see how much I have grown. How much my faith has been stretched and strengthened. How our entire family has grown and changed and grown closer. These trials have refined our family and we've realized that while this last year (or few years, really) have been so. stinking. hard... we see just how God has blessed us amongst the hard. I've begun to figure out how to find God in the midst of the darkness (which may be the title of my book I may write someday...). I've realized that His hope will always be there. And that is huge. No matter what our future holds, our hope in Him will always win.

And because of all of the hard, we've been able to use it to bring God glory. We've been able to share this hope in Jesus with SO many people. We've been able to help other families going through similar situations. I was able to talk to the woman on the plane and share the hope we have in Jesus when she talked about how hard our life must be. Yes. Cancer is a curse. Cancer is horrible. I wouldn't wish it on ANYone. But. Because of cancer, we've been able to see and witness so many blessings. We've been recipients of so many blessings. And ultimately, we've been able to share about Jesus during our pain. God is good. SO good.