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!