Grays 2013

Grays 2013

Sunday, September 14, 2014

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.

Saturday, September 6, 2014

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......

Wednesday, September 3, 2014

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!