Today.......

That is all we are really promised is today right? That obviously does not mean we just live today and not plan for tomorrow but it does mean that we are to hold on to those plans loosely because they may not be God's plan.

When I lost Joshua and Jennifer I realized there was no other place I wanted to be than in God's will. Even if that meant there was a lot of pain there. That was easy to say when I did not have anything else to hold on to.  Once I allowed myself to love again at great risk of losing again then oh so slightly I let myself hold tight to the people in my life trying to control everything that is not in my control. And I lost focus on what it meant to be in God's will. Oh to look at my life on the outside you would probably think that I had it all together and completely relied on God.  Well that is not the case I am sad to say.

As we walked through the past few weeks I have been angry, completely angry and God knew it. I told him very bluntly because that is how I am with God. I know I did not even have to tell him because he already knew and he is the only one that knows me completely and still loves me anyway.
God was and is big enough to handle everything I bring to him and I am so grateful that as I bring all my junk to him he is faithful to not let me stay there. He is also the only one that will tell me to stop throwing a temper tantrum and get up and look for the good in each situation and stop letting fear rule my life.  God will only let me stay wrapped up in my anger and self pity for so long. He speaks to me in so many different ways. Through a friend that is not a stranger to suffering sending me a song that helps her in her tough times. Kutless- Even if the healing doesn't come. Or through a sermon on suffering (I wrestled with God in this one). Austin Stone, Gospel centered suffering   It was a series of these things that brought me back to the place of wanting to serve God especially in my suffering. Because how we serve him in our suffering matters. It matters to the Kingdom!  People need to see that it is not perfect people living in a perfect word but we are Redeemed, Rescued, and a Restored people living in an imperfect world because the Savior loves us.  There will be suffering! If you have not encountered that I am sorry to inform you that you will.

So I woke up on Tuesday with a different perspective and a calm spirit. And off to the new Neurologist we went. This one specializes in epilepsy. He was confused as to why the Neurologist wanted Zach on medications and why he was such an alarmist. He said the activity he saw on the EEG indicated that he was at risk for seizures but not having seizures. Two very different things. So he gave us a choice to keep him on the meds or take him off. We opted to take him off and we will watch him. We will proceed with the MRI but he feels strongly that he will not find anything. This was great news and it felt more manageable. I will say that my gut a nurse had a hard time swallowing the first Neurologist findings and I was very hesitant to start Zach on medication but I trusted this doctor and he really made it sound as it was life threatening. So I second guessed myself and did what the doctor said afraid to make the wrong decision that could potentially be fatal for my child.

Then as if that was not enough of a blessing Erick came home that very day and actually told me in great detail about his day and a sad moment he had in Science when someone asked about his oxygen. This conversation was complete with words that were not prompted and completely and freely spoken. To those of you that have walked this journey with us with Erick know that his coping mechanism is to shut down. This was a hug break through!!!

So what does Gospel centered suffering look like?  For me it is lifting my head above the waves in the storm and seeking God in the victories of today. See if I had still been angry and shut off then I would not have been a safe place for Erick to come to that day and I would have missed out on the blessing of my son confiding in me for the first time.
Does all this mean that the storm does not rage all around us as we try to keep our head above the waves? No it means in the midst of the storm we know and trust the one who hold the life raft. And sometimes that takes total trust in the only one who is completely trustworthy.

Follow up......

Today feels and sounds like every other Saturday in our house, but it's not. My heart is heavy and I am severely sleep deprived. I have not slept but a few hours each night of uninterrupted sleep in 4 days. Here is what we know.......
First Erick's health has declined.  Yes we knew it would but unless you have watched your child's health decline knowing there is nothing you can do to fix it I cannot explain the way that feels. Fortunately there is hope. We met with his transplant doctor and she wants to present his case to the medical review board on October 1st. The medical review board is made up of a team of doctors and Erick's transplant team that consist of social worker, nurse, psychologist, surgeon, child life specialist, and I am sure I am missing someone but you get the picture. They all have to be in agreement that he is ready to be placed on the transplant team. His doctor could not tell me for certain that he will be placed on the list but she felt very strongly that it would happen.
So in the meantime  he has to do physical therapy twice a week, see a psychologist, see a dietician

, see the surgeon and redo some test all before October 1st. I have mixed feelings about this. On one hand I am glad the wait to get on the list to wait for a transplant is almost over but on the other hand I am a nurse and I know the road will be difficult but the other side could  be beautiful and this child that I have only known as a sick fragile child could have the ability to run and play without getting tired. He can play the sports he loves without limitations. So we begin our journey back and forth to Texas Childrens. If anyone wants to see or talk to me you are more than welcome to join me on the road.


Then there is Zach.......my heart hurts. Erick we knew what was coming and we knew it would be hard and we knew so much but this completely blindsided me! Let me begin by saying I know what epilepsy looks like in the life of a child because I lived with a brother that has epilepsy. I know he can live his life with seizures and have a somewhat normal life with some limitations. I also know my child can overcome those limitations.

So from all that you can come to the conclusion that Zach is having seizures. About 15 minutes into his EEG they came in and told us the neurologist wanted to see us before we left. Everyone knows what that means.......they saw something and it was not good. Zach was having multiple small seizures while he slept. He probably has been having them for a while. But we have no way of knowing how long. Our next step is to do an MRI to rule out anything big. And he has to start on seizure medication. Those of you that know me know how much that is killing me. These are hard core drugs and I hate them! But he is having multiple seizures at a time. Within the 20 second strip the doctor showed us he had 2 seizures one lasted 8 seconds with a 2 second pause and then another that lasted 12 seconds. And he said that was consistent throughout the test. These seizures are only happening when he sleeps and he has no idea so he is like what is all the fuss about I feel fine. And he does and he is acting fine. There have been no cognitive changes in this kid. We just know now that he is having seizures.

So it is not the end of the world. Again the nurse in me knows all too well all the things that could go wrong with seizures. So I have not slept and knowing that I will have to sleep I spent a few hours on google last night looking for a monitor. And after spending a small fortune on yet more medical equipment I see hope that I will one day sleep again.
So how are we doing?  We are a little battle worn. But there are so many positives and so many ways God has shown himself through this. I have had awesome friends rally around me. Praying for us sending encouraging messages.

Zach's cognitive ability has not changed. Erick has hope that he will one day be able to be a normal 8 year old boy and Isaiah's seizures have been able to be controlled with  a rigid sleep schedule (his seizures are different and not as frequent).  And so far Malachi is only requiring some speech therapy.
I woke pup this morning to a very loud house full of the laughter of 5 energetic boys (one of Zach's friends had a sleep over) and for that I am very thankful.

My super heros!

I know that no matter what happens God is still God!  Without my faith in that I cannot survive this. I will not let fear steal my joy of today!  I chose to still follow Christ......

Not for the faint of heart

If  you do not like complete honestly and transparency then you should leave this blog now.
Wow that opening  statement will not sell a lot of books! But my life is not full of fluff and since I have preached how important transparancey is in serving the body of Christ I have not choice but to be transparent!
This week has been hard. Those of you that know me know that because of the loss on my two precious children has left me with a burden of fighting to wait to for the next bad thing to happen. And just when I am sure I have an handle on things then lo and behold the next bad thing happens.
And within that I struggle with being transparent because I am so afraid that people will think OH what now! I feel like I am such a downer! And as I shared this with a friend this week after yet another devastating blow I was reminded of who I am. I am a child of the risen KING! Yes bad things are going to happen to good people! And it will shake your faith to the core! But that does not change who Jesus is!
I write this through a fountain of tears. Those of you that know me know my kids are my world. Having lost 4 already I am especially protective of the ones I am blessed to parent here on earth. But in that I also know that I have no control over what happens to them an that drives me crazy. Thankfully not crazy enough to be the helicopter mom I want to be and that is only because the one that is within me is greater than me.
I listened to a sermon today and it talked about how we are not to be apathetic and rely on what Christ has done in the past. I guess if I had to be honest I would tell you that is where I was. God had been so ever present in my loss of Joshua and Jennifer I was prideful enough to believe that it would sustain me through whatever I faced in the future. And that is where I stayed. Holding on to the past. Can I tell you that holding on to the past and not investing in the future is stupid! This is what I am finding out. I thought I was covered. you know as a mom of 4 you get busy. You rely on what you read in the past. Verses you memorized but you get apathetic. Knowing who the King of Kings is but really just going through the motions. Relying on the past to sustain you even though you know it is not the same lesson he is trying to teach you. I am not saying that God makes things happen just to teach you a lesson but He does use the bad things that happen in an imperfect world to shape you to look more like him.
So why such a heavy topic for my blog? Well where to start? Two nights ago my 6 yr old Zachary had a seizure in his sleep. Out of nowhere! He has never had a seizure before. He may never have another one. But as a nurse I know too much and I want every test known to man that can rule out everything that is fatal! Period! Don't care the cost just want it done! If it is just a seizure not related to a tumor or any kind of brain disease then great! I can deal with that but I need to know. And I get to be like everyone else and be on the waiting side of things. And it is not fun! SO we wait for an appointment. Looks like it may be next Tuesday in the meantime I have yelled at my husband and raged in anger against something I have no control over. Poor Russell!
In the meantime I have a child whose health is declining. We knew this would happen even before he came to live with us and we were willing to take this on. But we have come to love this child with all of our heart (and it has not been an easy road) and watching his health decline has rocked us to the core. It is one thing to know it will happen and a total other thing to see it happen to your child. We head to Texas Children's tomorrow to visit with his transplant doctors. I do not know how I feel about being this close to be listed on the transplant list. On one hand I am excited that I could see my son running and playing without getting tired and on the other hand worried that once again I will walk out of the hospital with empty arms. And what does that mean in terms of ministering to his birth mom? So a many unanswered questions!
So tonight I pray that the King of Kings will hold me tight and help me not fear tomorrow. Sometimes that is all I have left in me and today is one of those days!

Our first real family vacation

Erick was granted a wish by the Make a Wish Foundation and we will be headed to Disney World on Thursday. This is our first real family vacation since Erick has become a Gray. Needless to say the boys are super excited.  This will be Erick's first time on a plane and his first time to Disney. I am excited I get to experience some of his firsts!

It gave all of us something to look forward to after a very long day of testing and doctors appointments yesterday. As I shared in my last post Erick is getting sicker. Which we knew would happen but again it is hard watching him suffer. It is likely that Erick will be put on the transplant list within the next 4-6 months.  I know a lot of you do not understand why he would have to wait so long. The answer to that is not simple but is makes sense when you understand the process. Erick needs to use his lungs as long as he can. A lung transplant is not a cure. It is likely that he will need another lung transplant in his life time.  We are trading one disease process for another so while he is stable we keep him as healthy as possible until absolutely necessary. 

But I rest in the fact that his suffering is temporary. Once he is listed and he gets new lungs we will fight another medical condition but with far less restrictions. It is scary and all the unknowns could really send me into fear induced paralysis. And in that state I would miss out on the blessings of today. Because I know that today is all we are given. We do not know what tomorrow holds. But God does. I know He has walked before me and before Erick and he knows the outcome. I am struggling to let go of things I THINK I can control. 

So I will pack our bags and we will board a plane and all the while I will have to remind myself and Erick that fear is not of God. 

2Timothy 1:7   "for God gave us a spirit not of fear but of power and love and self-control."

Isaiah 41:10  "fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand."

Joshua 1:9 " Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”

Because if I don't we will miss the memories waiting for us.

Click here for more information on the Make a Wish Foundation.

Transparency.....such a hard concept

If you have known me for any length of time you have heard me talk about Joshua and Jennifer and the long hard path I have walked through after losing them. And I have talked multiple times about the importance of being transparent so that God can work through us to help others walking the same or similar paths. And while that is true I have been challenged on being transparent on a different level. Allowing people to know what is going on in the present and being absolutely real about where you are. So that is my disclaimer....this blog will most likely not be all warm and fuzzy. I am going to be completely transparent here.

Watching you child suffer is far worse than losing your child. There I said it!
I have wondered whether losing a child traumatically or watching them suffer is worse and now I know. At least that is how I feel right now at this moment.

Erick has been pretty sick this week. I have watched him struggle to breath as he coughed and coughed because his lungs lack the ability to move which can cause his lungs to fill with mucus. I have had to tell my child that when he coughs until he throws up that is a good thing (he was not throwing up stomach contents but the mucus that was filling his lungs, I know TMI) I watched his sweet face as he had to stay home as his brothers went swimming. Such disappointment. And I have had to have some really tough conversations about his disease and his prognosis. I have watched his face as I have had to use words like transplant, donor, and death.

The worse part of all of this is it will have to get worse before it gets better. I will have to watch him suffer and then go through a very painful surgery and months of recovery in hopes that on the other side of it he will be a healthy young boy that can run and play without getting tired and having to watch from the sidelines.

The good news is antibiotics are helping him and he is feeling better. But it has stirred up anxiety in both of us.

We leave for Disney World on Thursday. Erick was granted a wish by the Make a Wish Foundation! He is excited but very nervous too. He has never flown before and having been sick he is worried about what if he gets sick so far away from home. Honestly those are my fears too.

So in my transparency I will also tell you it has been hard for me to pray. You would think this would be an easy thing for me but it is not. I am a little angry, ok a lot! I know God put him here in our family but honestly I feel most days that I am not the best mom for Erick. Yes I have questioned God several times on this subject. I want to take away his pain, his anxiety and his fears. But I can't! There is not a single thing I can do to take that away from him. I have to hold his hand and watch him walk through it.

Now please know that I know God has a plan in this. I do!  And on the other side will be sweetness. I know this because I have walked in the abyss of pain and suffering. But today, right now, it hurts too much.

So I will be blogging through this journey. It is my outlet. If you would be so kind as to stand in the gap for us as we find out strength to fight his battle ahead of us we would greatly appreciate it.

The Storms

I have always loved thunder storms. My fondest memories of my daddy are sitting on the porch watching the storms roll in. The smell of rain, the lighting and the thunder but most of all sitting there with my daddy. My mom was afraid (and still is) and thought we were kind of crazy.

One of the biggest things my daddy taught me was not to be afraid of the storms. The storms are needed to keep things alive.

The same is true in the storms of life. Now I know many of you are like my mother right now and thinking I am crazy but bear with me.

Tonight I had the honor of watching on of my very dear friends bear her soul in front of a room full of women. Do you know how much courage that took? She was speaking to women who may or may not have a relationship with Christ. She not only shared she was transparent and in her transparency she moved a room full of women to the throne of Christ through tears and laughter.  Her story is full of storms.

My story is full of storms and I venture to say most of us have storms we have survived (sometimes barely).

Why are these storms important? Because they bring life. Not physical life but spiritual life. Just like the rain provides life for the earth our storms provide life for our souls. While we are weathering the storms we most likely will not see the blessings on the other side as we struggle not to drown.  But on the other side of the storm is glorious freedom. If we allow it to it brings us closer to Christ as we realize he is our shelter in the storms.

My husband and I have been walking through a storm of our own (ok maybe more than one storm) and we have been blessed to have a couple willing to walk through the good, the bad and the ugly with us as we rage against the waves. Do you know how freeing that is to have someone willing to look at your junk and love you anyway? Sadly most of us don't.

We weather the storms alone..........nobody ever knowing.  We pretend to have it all together.....and inside we are dying. We tell everyone that God is good and we are doing great.........and in reality we can hardly stand to be in the same room with our spouse. We do it alone,that was never the way God intended it. He made us relational for a reason. So we can help weather the storms.
Tonight as my dear friend shared her storms I saw chains of bondage in other women being broken as I looked around a tear filled room. Many women never having been truly seen as what they are.....forgiven children of God.

So tonight I sit at the throne thankful for the transparent people in my life. Their storms were are necessary to bring themselves and others closer to Christ.

So as I sit here watching the storm roll in I am thankful to my daddy for teaching me not to be afraid of the storms. And thankful to my heavenly father for never wasting my pain and teaching me just how necessary the storms are to bring glory and honor to the kingdom of Christ.

Today my baby girl would be graduating from high school. It is hard to believe that she is not here even after all this time. As I have spent this past year watching her friends walk through their last year in high school it has been bitter sweet. Many of her friends parents are friends of mine. So while I am so excited for them I am so sad for me. 

I miss her and it is hard not think about what would have been. What would she look like? What would she be like as a young lady? What college would she be attending? So many whats and no answers.......

Jennifer Danielle Perez

When my grief was fresh and I lived daily in sheer agony because the wounds were so deep and people would say things like, "she will never have to suffer", "she is in a better place", or "she is protected from the evil of this world". While all of that is true it still does not soothe my wounded heart.  I miss her deeply! I want to hold her, smell her, and hear her voice. It is not sheer agony on a daily basis anymore and I am able to enjoy what God has blessed me with but my reality and the reality of every parent that has lost a child is it still hurts deeply. Yes even after 11 years, it hurts! 

But here is what I know to be true. God is sovereign! God is merciful! God is my comforter! God will not leave me! God is faithful! 

Without the truth before me I would not be able to bear the pain of the past. And I would miss out on so many incredible blessings. 

If you are a parent that has lost a child and are new to this journey hear me when I say, it is suppose to hurt this bad. You cannot see anything before you right now only what  you have lost. You do wake up every day and face fear, anxiety and anger. You do wonder how you are going to go on without your child. You do want to die so the pain will stop and you will see your child again. You do want to scream at every person you see that their family is in tact. You do spend every waking hour wondering how you are going to survive. Then the next day comes and you do it all over again.  Hear me when I say you are NORMAL!  You are not going crazy! You are a parent that has suffered great loss. NOTHING can prepare you for that. 

But also hear me say it will get easier. You may not be able to open your bible or even pray. But know that you have a Savior that is standing in the gap for you praying for you. 

And then there will be days like today that hit you like a lighting bolt and your heart is bleeding once again. But this time you see hope. Hope that tomorrow will be a little easier. Hope that God is not done writing  your story or your child's story. That's right even though your child is not here their story is still being written and you are a key component of that story! 

Today Jennifer was remembered her short life here on earth is still impacting people and I cannot tell you how much joy that brings to my heart.  See God is not done writing this story and he will write it with or without me. I personally want to be a part of Jennifer's story as it is used to change people and change the world. It has certainly changed me.

So in my pain I am honest, transparent and I don't wallow in it but I acknowledge the severity. Why? Because I love her so deeply that I cannot help but hurt and I love God so deeply that I cannot help but to crawl up in His lap and allow him to comfort me as he uses me and Jennifer to further his kingdom.  I cannot help another parent walking through this if I am not honest about my pain. If I approach you and you think I have it all together your wrong. I still depend on God to get me through every day.  

Today I am leaning heavily on Him as my heart longs to be with her again and as I ponder the "what would shave beens" of my reality.