Hard days

All too often I have people ask me if I did not want a girl. They see my four boys three of whom are adopted and assume I had something against bringing a girl into the family. I will say they are well meaning people but they do not know the pain that question causes me, simply because they do not know my history. They don't know that I would give anything to be celebrating Jennifer's 22nd birthday with her today. They do not know that even after almost fifteen years of living without her and her brother the deep pain is still there. They do not know...... and that in itself hurts.  My life has gone on, I have met new people who did not know me as Josh and Jenn's mom.  Like every parent I want people to know ALL my children. 

My biggest fear is that people would forget, that I would forget.  Of course the later was utterly ridiculous and I know that now because there still is not a day that goes by that I do not miss them. Not a day goes by that I do not think about them.

It turns out that the fear of others not remembering is also ridiculous!  I am so incredibly blessed that so many sweet friends remember. A few weeks ago I received two messages on the same day telling me they were thinking about my kids! What? Random? No I don't think so. I think God knew exactly what I needed and gave it to me. Today several friends have called, texted, and posted about my sweet daughter who they have not forgotten even if they never met her this side of heaven. 

Random? No, I think not! I think God knew exactly what I needed and has provided. I think God wants me to know He has not forgotten either. He is still sovereign! He is still on the throne and He still loves me. 

So even though there is a deep pain in my chest today and  I have a deep need to cry, I will rejoice first that I was able to be her mom. That I was able to hold her, rock her, laugh with her, cry with her, climb trees with her, and yes even argue with her. I sure miss that girl and it is hard for me to imagine her as a 22 year old. But I KNOW that I will see her again and that is what gets me through to the next day. And the knowledge that God is in control. 

REAL Parenting

Does anyone else feel inadequate as a parent? I mean really I can't be the only one right? I sit here in hopes that exposing my gross inadequacy will only give others of you out there permission to give yourself grace. If I am the only one then the light needs to be shed on that too and more therapy is needed. 

Today was one of those days when my sweet child that has sensory issues was just a bit unhappy about current changes in our schedule. Mainly that his older brother being home because school is out. He has been off the charts with aggression. I know as his mom that I need to intervene quickly so it does not escalate but lets be honest I was hungry (translated hangry) and just wanted to eat so I let it go too far. Then we both exploded. Not the best way to deal with a sensory meltdown by the way. 

It all ended with me and him sitting in his bed crying. Not my finest mommy moment. Oh and I forgot to mention all of them had been fighting ALL morning over really stupid stuff. So the perfect storm was created. It ended with me apologizing to my children. They are so use to this that they barely blink anymore. 

My husband bless his heart gets to hear all about as he walks in the door. To which he stands and in trying to be supportive just stares blankly at me as I cry and rant about how terrible of a mom I am.

surely feeling helpless and scared all at the same time. 

This parenting this is no joke.  I just hope that I am not the only one that is wondering how in the world I am going to raise these 4 boys without completely causing them to hate women because they have serious mommy issues. 

Today I am choosing to focus on grace. Just as I had to apologize to my kids I also had to apologize to the one who created them. And the same one that created them has extended grace by sending His son to die for me, a sinner. 

So mommy's raise your hand if you are frustrated, exhausted, impatient and downright feel like a failure and then look up! God loves you and there is grace extended to you! 

Hold on loosely

Holding on loosely is not something I do well, AT ALL. I have a tendency to try to hold things too tight at times. Its really easy to do and I suspect most of you do too. But today I attended the funeral of a dear friends brother. This friend got up in front of everyone and spoke the gospel with a clarity and passion I have not seen before. As he spoke about his brother and his parents experience in the hospital and the decisions they had to make it hit me. What have I been holing on too tight to? What have I been trying to control and not allow God to have? What illusion of control do I think I have? 

Its simple, everything. I have tried to carry everything by myself even though I am in a church that has a passion for community. I have kept to myself and believed the lies of the enemy. Lies like "nobody wants to hear your struggles", "you bring everyone down", "nobody really cares". 

I have not let myself be known. Why? I wrote this in my journal not long ago. "I am dumb to think that because I follow you [God] life is hard. I know that following you actually makes the hard easier. But you call us to do hard different, better. And sometimes I don't want to do hard right. I want to do it with my head down and in private. Hard is scary. I feel most times that Hard is my middle name. Don't people get tired of hearing just how hard my life is! That is how I feel even when I am giving glory to you. I am not good at putting on a smily face and saying yes things are hard but God is good and I feel like that us what people want from me. Not many really want to enter into those dark places with me. The place where there is brokenness, no answers just questions. The place where all you can do is survive. The place where fear lurks. The place where anger lies just beneath the surface. We are suppose to live transparently but how am I suppose to do that?"

Why do I want to do hard alone? Partly because I have been hurt, deeply by people I loved and trusted. DEEPLY! But mostly because I have built a wall. And if we were honest most of us have walls around the deep hurts, the deep struggles. What if we get hurt again? What is people as the struggle and the real you? 

I was told by two mothers today both of whom lost a child, one of buried her son today, that I know. That statement rocked me to the core. Yes I know, I know the pain of losing a child and I know the long journey on which they are embarking. I know because God walked me through that and continues to walk me through it 13 years later. But what do I know. I mean really know deep down in the core of who I am? 

I know that when you walk through something like this there is an intimacy  with Christ that is like no other. I know that you have a different perspective of heaven. I know the the Lord the rules the earth cares enough to bottle your tears. I know that even when you stand in the shadows He sees you and you are KNOWN. I know that He never meant for us to walk this alone. I know that there are so many hurting people out there, some who may be sitting right next to you in church, that need you to be real and need you to be willing to walk the hard stuff with them. But for that to happen we have to be willing to be known, even if that means getting hurt again. I know that the ultimate goal is to bring glory and honor to Him. 

I will be honest this is so hard for me. holding on tight to my feelings, my hurts, my family, the list can go on and on. My prayer tonight is that I can lay it out there. Shout out that yes! this past 3 years have been hell on earth. but I have survived, most days barely but my head is currently above water. 

I also know this.......if you hold those things too tightly then you cannot give glory to the King. 

So yes I proudly wear that badge that says YES I have lost a child, or YES I am a mother of special needs children, or YES I do mess up as a mom almost daily, or YES I am not great at this marriage stuff, and Yes I am BROKEN and an utter MESS!  I will wear those badges with honor because when I am able to admit those things and allow people to see my broken mess I allow them to see what Jesus has done through my broken mess. There are days that all I do is cry. Today was one of those days. My tears however where not for me. they were for the two precious mothers that unfortunately now know the pain I know. My tears were shed for them to honor them. Tears that come from a broken momma who chooses to honor Jesus in this big ugly mess we call life. 

So tonight I go to bed not knowing what tomorrow holds but holding on to the one that does. Because even if tomorrow holds more or even a new pain I will honor the one who knows me, ALL of me. 

And I will loosen my grip to the things I cannot control, I will be open handed and trust in Jesus. 

New journey

So it has been a while since I blogged and a lot has happened in the past 5 months.  Erick received his transplant on January 14, 2015 and things are going great. He is all healed and will be returning to school in a couple of weeks. God is good!

But that is not what I to blog about....

Many of you have asked or questioned why I use essential oils on my children. Some of you may have seen the post about essential oils and seizures that went through Facebook a couple of months ago. Several of you shared that post with me. 

As many of you know Zachary our 7 year old has epilepsy. He was diagnosed in September 2014. I opted to put him on anti seizure medications because we were going into transplant with Erick and I needed to make sure his seizures were under control. It was a hard decision. Why? because I know what anti-seizure medication can do to a child. As I sit here today writing this I am in tears. My once sweet, rule following, compassionate, funny and loving child can not control his temper. He does not sleep well at night, he is irritable, irrational and fearful. My son who has never said a hurtful word to me and has always been respectful came at me today to hit me. 
What have I done? 

The only thing that has changed is I put him on medications. 
He currently is on Keppra, this is his second medication he has tried with the same results. 

The questions you should be asking me is why is he on Keppra?  Here is a list of side effects of Keppra
More common:

• Aggressive or angry
• anxiety
• change in personality
• chills
• cough or hoarseness
• crying
• depersonalization
• diarrhea
• dry mouth
• euphoria
• fever
• general feeling of discomfort or illness
• headache
• hyperventilation
• irregular heartbeats
• irritability
• joint pain
• loss of appetite
• lower back or side pain
• mental depression
• muscle aches and pains
• nausea
• painful or difficult urination
• paranoia
• quick to react or overreact emotionally
• rapidly changing moods
• restlessness
• shaking
• shivering
• shortness of breath
• sleepiness or unusual drowsiness
• sore throat
• stuffy or runny nose
• sweating
• trouble sleeping
• unusual tiredness or weakness
• vomiting

Less common

• Bloody nose
• burning, crawling, itching, numbness, prickling, "pins and needles", or tingling feelings
• clumsiness or unsteadiness
• discouragement
• dizziness or lightheadedness
• double vision
• earache
• feeling of constant movement of self or surroundings
• feeling sad or empty
• increase in body movements
• loss of bladder control
• loss of memory
• mood or mental changes
• outburst of anger
• pain or tenderness around the eyes and cheekbones
• problems with memory
• redness or swelling in the ear
• seizures
• sensation of spinning
• shakiness and unsteady walk
• shakiness in the legs, arms, hands, or feet
• tightness of the chest
• tiredness
• trembling or shaking of the hands or feet
• trouble concentrating
• unsteadiness, trembling, or other problems with muscle control or coordination

I have italicized the ones that Zachary is currently experiencing. 

Side effects of essential oils? Some of the oils may trigger seizures in patients that are already prone to seizures. So what do we do about that? We avoid them, that simple!



I can tell you what I am doing now....looking for alternatives. And yes essential oils are a part of his daily routine and well as mine.  
In addition we are looking at diet and other more natural ways to control his seizures so that he can have his childhood back.  

So when you ask me why I use oils this is my response is this, in our family we have seen amazing results with using essential oils. We sleep better, our immune systems are stronger, my hormones are more balanced. Are oil the end all cure all? No we have also changed our diet and taken chemicals in our home. 

And lots of prayer because the same statement I made above about Erick is true in Zachary's situation too. God is GOOD! 

New Year!

I wish I knew how to feel about a new year. Quite honestly I never understood why we spend a full year doing things we need to change and then at the first of the year vow to change them. Why wait? I have been guilty of doing it until one year I decided not to do resolutions.
I am so thankful God is not like me. Next year I will lose weight, next year I will be a better wife, next year I will play with my kids more, next  year I will volunteer more, next year............

If anything about my journey through life has taught me is that we only have today, right now. We never know what tomorrow or the next hour will bring really. After the accident the railroad had to do a reenactment of the accident. One of the things that really struck me from that is the entire accident took 3 seconds to happen. 3 SECONDS!!! That is approximately how long it takes you to take one breath. In one breath my life was changed forever.

It has been 12 years since that fateful day and I admit I am human I lose focus of that and get busy and am short with my children and my husband, I want to rich through the days like everyone else....next year....we can always get to it next year right?

But what is next year does not ring in the way you want it to or think it will? Does that change who God is to  you?

This year we are facing a big surgery. I have had to stop and ask myself the question of what if you lose another child, does that change who God is to you? What if that child is not the one facing the lung transplant, what if it is your husband or worse your whole family again?  Those are scary questions for me but my answer is a resounding NO it does not change who God is to me.

And I admit I have wavered on this question for the past month. But I want to share a little story with you that helped me refocus and get my feet back under me.

When I left my children with my father in November 2002 to go visit my grandfather in Massachusetts it was suppose to snow while I was there. Joshua asked me to build him a snowman and take a picture of it. And so I did not knowing that he would never see that picture.  Once we came back home to Texas and buried my children and my father, my mother and I decided we could not stay here for Christmas and decided to go back to Massachusetts to spend time with my grandfather and the rest of our family. While we were there I was doing some Christmas shopping for my nephews and they wanted a football. I could not find a football anywhere. Then I drove by this small store and they had a basket full of balls and one football in that basket. I promptly stopped and bought the football. As I was walking out of the store the store owner said to wait he had something for me. He then proceeded to hand me a snowman. I did not know this man but that snowman gave me such comfort in one of the darkest times of my life. God used that man to let me know he had me in the palm of his hand.
This year as I was going through the holidays and asking myself those questions and really struggling with what we were facing and what we have faced this past year I went to a Christmas party with some wonderful women I have the honor of serving with. I almost did not go because I was not in the mood to celebrate but I went and guess what my sweet friend gave me for Christmas......yup a snowman. Nope she did not know the story or that I was struggling but God used her  and her gift to remind me that he has not changed. He is still the same God that walked me through the death of my children and the same God that called me to be a mom to the amazing children he blessed me with.
Some would argue that it is just a snowman but with God it is never JUST a snowman!

"What if some did not have faith? Will their lack of faith nullify God's faithfulness?  Not at all! Let God be true, and every man a liar. As it is written: "So that you may be proved right when you speak and prevail when you judge." Romans 3:1-4

Reflections

As I looked at my reflection in the mirror the past few months I have not liked what I have seen looking back at me. What I saw was a mother with battle scars that chose to stand behind the scars and be a victim of my circumstances. A mother who was battle weary and well quite frankly angry. Angry that my life has been anything but easy. Angry that my child is getting sicker and there is nothing I can do about it. Angry that he is sick in the first place. Angry that  I cannot change things for him regarding his past. Angry that a sweet innocent 8 year old boy carries around so much hurt and anxiety. Angry that God would ask me to walk a path yet again  that is hard and painful. Angry at my husband for not reacting the same way. Angry at well everyone but mostly myself.  Notice how I came right back to me?? As I reflected the past few weeks with God that is what he revealed to me. I am selfish in my thoughts and in my actions.

 I remember talking to a dad who had lost both of his children in a car accident and he asked me if the closeness to God would go away after time. My response was only if you let it.  That is where I have been the past few months. So busy with doctors appointments and worry that I had not stopped to talk to God. Or let me be really honest had not wanted to talk to God.  The result was I put all the focus on me and had a great big old pity party!

So what do I do with that? Any moms out there know it would be really easy to let the guilt of that steal my joy. But Romans 8:1 says "there is no condemnation in those who are in Christ".  So I put on my big girl panties and look outside myself.

Yes my life has been hard but it has been so amazing as well. I am so blessed to be Josh and Jennifer's mother.  I will never regret the time I was given with them. I will continue to share them with others. I do miss them everyday and it is only a pain another mother who has a child in heaven can understand and I will not ever get over it or be done grieving them this side of heaven. I have four amazing boys. Parenting children with special needs is lonely so I am thankful that God gave me an incredible husband who has held me many nights as I cried myself to sleep. Listening even if he did not understand my rants and worries.

This month my focus in on making memories and serving my family. I am blessed to have today. So I will camp right here in today, living a life of no regrets and not taking today for granted.

Thanksgiving

Thanksgiving day and we are home.  This time of year is so conflicted for me. I have a love/hate relationship with the holidays. It was this time of the year 12 years ago that my children and my father died in a horrible train accident  I still miss them every single day! Not one day goes by that I do not think about them. But this year is a bit different. This year we are home because we are waiting on a lung transplant.  We are waiting on a donor.........
Many of you know that Jennifer was a donor, not major organs like lungs or heart because her injuries were too severe but she donated tissue, eyes, bone, etc.  Even though she was not able to donate the major organs it still gives me great joy to know that someones quality of life may have been improved.  I would do it all over again and I would make the same decision for all of my children, myself and my husband if faced with that again. As strange as it may seem it was a gift for me to be able to do that for people I will probably never meet. 

But sitting on the other side of this is a game changer for me. I know that my prayers will not alter God will. But how do you pray for a donor when you know the terrible heartache the family is facing? I mean really know.......the deep gut wrenching grief that come with losing a child. The pain that never goes away.  The empty seats at the table. The empty hole in your heart that can never be filled. The overwhelming longing to hear their voice, smell their hair, hold their hand...

This is how I am praying for them this year. First of all Erick is stable right now, Praise God! He is home and not having to be in the hospital like many children who are awaiting transplant.  So I am praying first for the families faith and salvation. I do not know how you get through the loss of a child without believing there is a higher purpose in the pain.  I am praying that they get one more Christmas together. Losing a child during the holidays well just sucks!  And I am praying that the time they have together is a time of no regrets. That they will slow down and enjoy the holidays and time they have left together. I am praying that they have HOPE! The hardest part of all this is I know that they have no idea what they are about to face but I do. 

So today my heart is heavy for Erick's donor family will you please join me in praying for them? 

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. 

Walking the walk

Ever feel like you are all alone on a journey you are unfamiliar with?  You find yourself in a place that  is foreign, a place that other people go but not me. A place so out of your norm that you are not sure how you got here.

I know how I got here.......obedience to God's call on our life but man I feel so inadequate. Unsure of myself. I am having to face things and deal with things that I am not educated on. But boy am I getting an education. Words like lung transplant, pulmonary obliterations, pulmonary hypertension and oxygen are words I am familiar with and as a nurse I can see the signs and symptoms and I know how to treat the physical symptoms. But words like attachment disorder, anxiety, 504 vs Special Education, autism, I am not familiar with and they do not fit in a neat box. I have such a learning curve and I fear I cannot learn fast enough to not leave further damage to my already fragile children.

God has been faithful to put people in my path that understand and have gone before me and I am so grateful for that. They have helped me navigate the public school system, find resources, and prayed for me and my family.

Parenthood is hard on its best day and this is our journey.

We love what God has called us to do but if I was really honest some days I think he called the wrong person.

I know I have a lot of friends out there fighting their own battle. Some with special needs children, some with cancer, some with the death of a child, husband, wife or parent, some with struggling marriages, and so many other things.

If you are on that unfamiliar journey I want to leave you with this, it has not taken God by surprise. Thats right....he has gone before you and he has equipped you to walk this path, even though you don't feel like that is true it is. Not because I said it but because He did.  So hold on to the promise that today is temporary and the King of Kings has paved the way for you. Seek Him. Undoubtably this is my biggest challenge in the storms. To take the focus off of me and put it on Him.

These things I have spoken to you, so that in Me you may have peace. In the world you have tribulation, but take courage; I have overcome the world." John 16:33

Twenty years.......it's really hard to believe it has been that long since I first laid eyes on my first born.  It is just as hard to believe that it has been 11 years since I last laid eyes on him.  Though the pain of loosing him has softened it is still there. Still demands my attention. Continues to make me be still and acknowledge it.

I wonder what he would look like as a young adult. Would he be in college or working towards his dream of doing mission work. Or would he have gone the other way? Would he be living a life outside of God's will. Would he have a girlfriend? There are and never will be answers to those questions.

As I am still today and acknowledging the pain that is always just below the surface I am also grateful.
Grateful first of all that I had the privilege  of being his mother. Secondly for all he taught me in his short time on earth. And lastly that I will never know what his life here on earth would have been like but I do know that my precious son is living in glory with the only one who could love him more that I do. 

So I share my children almost daily. Not that you would feel sorry for me but so that  you will see the redeeming love of a faithful God. Because even when your world is stripped away from you and you can see nothing but the darkness in front of you there is a God who is holding the light in that darkness. A God who loves you just as you are.
A God who wants to meet you where you. 
A God that does not need you to "clean up" before coming to him. 
A God who placed his son on the cross to die for you sins, and for mine. 
You see I am not an extraordinary person with superhuman powers. I am just like you.......I am a sinner who can confidently crawl up in my Saviors lap and allow him to comfort me in my darkest moments. Knowing God has not taken my pain away but it certainly has made it easier to bare. 

TWENTY YEARS........................

catch up

It has been quite some time since my last blog entry. A lot has happened in our family since the last post. 


This year has been especially hard for me and especially wonderful. Isn't it funny that you can have sorrow and excitement all at the same time?

Joshua would have graduated this year. I knew this was going to be hard but I thought by the time it got here I would have it all together. And many of you if you were honest are thinking that it has been 9 years I should have it together. The reality of loosing a child is every great thing in your life is laced with sadness. And no we never really have it all together, I am not sure this side of heaven that I will ever have it all together. I have enjoyed seeing graduation pictures on facebook and I appreciated all the invitations to graduation that came in the mail. I really did rejoice with all of you and honestly I thought I would be there in the crowd cheering your sweet kids on. But I simply could not do it. I could not sit in the crowd a bereaved mom, knowing that my son was not walking the stage that night. So if  I hurt anyones feelings by not being there then I am sorry. I am guessing however that I was not missed and did not ruin the celebration. 


This year also has marked great joy and excitement in our family as we finalized adoption on Isaiah Scott Gray! What a joy this sweet boy has been in our life. He is now 15 months old, walking and getting into everything! He is healthy with the exception of some lingering lung issues which are being controlled by medication. He is a fabulous little brother as well as a great big brother. That's right in January we welcomed a sweet 2 month old baby boy named Melachai into our home. We are fostering Melachai and are not sure if we will be able to adopt him or if he will go back to his mother. It's been an interesting journey. Melachai is now 8 months and crawling and following big brothers all over the house. Now you know why I have not blogged in a while. 


Russell and I have crammed a lot in our mere five years of marriage but we are content in walking this journey together. I am married to a wonderful man who supports my ups and my downs. He may not understand me most of the time but he is my biggest supporter and cheerleader. I am a blessed women. God sure knew what he was doing when he put us together. 

November 30, 2011.

 Nine years ago I was changed forever. I will never be the same as I was before loosing Joshua and Jennifer. That is not bad thing but most of the time I feel displaced not really fitting in anywhere. The friends and life I had as a single mom with two children all faded away. Some freinds stayed around but eventually they all returned to their lives with their children as it should be
.
It left single with no children which I did not really fit into that group either since I did have children just not here on earth anymore.

Then I met my wonderful husband and we were blessed with two wonderful children both under the age of four. I'm no longer in my 20's or my 30's for that matter so I really have a hard time finding common ground with mother's of preschoolers when I feel like a mother of teenagers.

Now all of this may sound crazy but this is just another reason why this journey has been so difficult.
I struggle to find my place in life.......perhaps it is because we are not made for this world. This life is only temporary...............and oh how I long for eternity.

A time to reflect

This morning it is raining, finally.  We are in a drought and the rain is desperately needed here.  And finally we are getting some relief. I love the rain, when I was a child I use to sit on the porch with my daddy and watch the storms roll in. Turns out that one of the most valuable things my daddy taught me was to not be afraid of the storms.

Tomorrow is Jennifer's birthday and I miss her so much. She would have been 16, hard to believe. I miss her smile and her silly banter. She challenged me more than any of my boys have. She was very much like me and sometimes that was not a good thing : ) I miss her laugh and the way that she use to talk non stop.

This time of year is especially hard for me and with each passing year it is hard for different reasons. Of course the obvious unchanging one is that I desperately miss my children and my daddy, that will never change this side of heaven. Nine years ago I would have never dreamed I would be where I am today. I did not see how life would go on. I could not see past a day much less think about years. 

I love where God has me and ironically sometimes that makes me feel guilty. Now before I get a multitude of emails telling me how crazy that statement is let me assure you I know it is not rational.  But grief is not rational. And grief is not something you "get over". With each passing year I learn a different facet of grief and I am blessed with the lesson it leaves me with. As long as I am still learning it means that God is still active and alive in my life.

As I reflect on the past I cannot help but be grateful for the present. God has blessed me by showing me restoration in my life. When I look at my two sweet boys and remember my three sweet babies in heaven I am reminded of how much God loves me.

A time to listen

As many of you know we decided last year to become foster parents with the desire to foster to adopt if that was God's will. We started the process back in November 2010 and for me it has been a long difficult road, one I was not prepared for. While I have given my testimony many times over the years there are certain things that I have not felt lead to share except when God puts me in one on one relationships with other women to encourage them. Many of which all occurred before my relationship with Christ, some of my own bad choices, others I had no choice in and all of which brought shame to me. And once I understood that God, the creator of my soul, did in fact love and did in fact want a relationship with me wiped that slate clean. I had not dealt with that guilt and shame since I understood who Christ was and how much He loves me.
Until I had to write it all down on our paperwork to become licensed to foster/adopt. I realized after I had my life laid out on paper for people whom I did not know to read and decide if we would be good parents that I did not look good on paper. And in walked the enemy! I gave him the crack in the door he had been looking for for years. I have been a Christian for 18 years now so you would think that I would have seen this attack for what it was but I did not.
As we reached the final stages of our process I felt as though I had been judged my what was on paper and that I was not "good enough" to foster/adopt. I felt like the people who were looking at my paperwork were seeing all the bad in my life and making judgements based solely on that.
All the while God had a plan, a beautiful plan that I did not realize because I was too busy feeling sorry for myself and for the first time this side of my relationship with Christ I was riddled with shame which in turn made me angry.  I know in my heart that God covered my multitude of sin with the precious blood of Jesus but I was not feeling it.
As we were not so patiently waiting for our licensing process to be final some dear friends of ours got their first placements as foster parents. I have to be honest and say when she called me all excited I sat and hurt deeply thinking again what was wrong with me? Why did they not call me? Was I not good enough to be a foster parent? I know she heard it in my voice even though I tried to sound excited for her. I hung up the phone and cried myself to sleep. I really did want to be excited for her and her family but I was so caught up in my self pity I stole some of the joy from her and sad to say was not a good friend.
Just when I was about at rock bottom. I was sad and quickly moving into depression and quite honestly thought I was loosing it. That is when God stepped in....... I received an email from a friend whose child was friends with Joshua. She told me that her and her son had talked about Joshua and she just wanted to let me know that he was not forgotten. For those mom's out there reading this that have lost a child you know after 8 years what an incredible gift that was to me! She was afraid that she had upset me but just the opposite is true. God used her email to show me that just as he had written Joshua and Jennifer's story he was still writing mine. And just as He was still using their lives to impact others He was wanting to use  my life for the same purpose. I just had to be faithful to follow his lead. It was just what I needed just when I needed it. It reminded me that I am a child of the King and that my creator loves me enough to want to use me in His beautiful story.
We went to our friends house the day they got their first placement and when we left there I knew that those children were exactly where they were suppose to be and that I had to be content where God had me even if that meant that we would not have any other children in our home.
Then came the call, we had no idea we would get because we were still waiting for the process to be finalized. We were asked my our case worker if we would consider taking a 2 month old with medical needs. The baby was still in NICU but would be released soon. Without hesitation Russell and I said yes.
 Now the funny part of that story is when we first started the process I said I was not interested in fostering we just wanted to do straight adoption, no infants and no medical needs. I was selfish in my reasoning for all those and God showed me throughout the classes that I was really trying to take control of what He wanted for me. Of course I believe God has a sense of humor and gave us an infant to foster that has medical needs.
We were allowed to go up to the hospital to do feedings and bond before he came home. And the minute the nurse placed baby Isaiah in our arms I knew we were exactly where God wanted us to be. We feel in love with him even before we met him.
We were blessed enough to bring him home and while we do not know what the future holds for this little guy we  know that we are blessed to be part of the story. And we will love him as our own for as long as God will allow us that honor. He is doing fabulous at home and big brother is incredibly protective of him and simply adores him.
We know that God has a plan for Isaiah 's life and we are excited that He chose us to be his parents for however long that may be.