In my spiritual journey I have learned a few things. I've learned that it's ok to not always understand. I've learned that it's ok to accept a lot of things beyond my control. I've learned that it's ok to have questions and I've learned that although there are some things I accept that doesn't mean that I will ever understand them.
For instance, why do crappy parents get kids? As the parent of a special needs child you may often hear, "God only gives special children to special parents." Very early on another special needs parent informed me that statement definitely wasn't true....that crappy parents often had special needs kids.......if you look around you see plenty of perfectly healthy kids with crappy parents too.....do I understand it? no. .....but I guess I have to accept it..... I don't know why a lot of things happen the way they do......It would be very easy to assume it is all hopeless.....
This is what our preacher has been talking about. .....having confidence in God....>>> there was a time in my life when I didn't fully understand that. I thought that having confidence in God was believing that he could make anything happen - while that IS true it is not at all how I perceived it. I perceived that people were teaching that if you asked faithfully enough for anything that God would grant your prayers - well, if it was something good, that is. Like, if you believed enough and prayed enough and knew God enough and prayed for someone to be well then it would happen - or if you prayed hard enough for someone else to accept Christ it would happen. After all, "where two or more are gathered in His name...." right? .....and these are both good things to ask for - things that it seems like God should want.......Thing is, that is often take out of context and what we need to understand is that having confidence in God is actually being sure of how He has every aspect of our lives already planned.....of how he gives us opportunities and gives us the choice to handle situations and decide whether we do these things WITH Him as our guide or if we try to do them on our own.
He can (and certainly has) provide divine healing - but still the part we miss is that there is more to it than that. Adam and Eve exerted their free will and committed the first sin. Since then we, as humans, are continually exercising our practice in free will and sin and understanding that God is God and He alone is perfect. He alone knows all the answers. If our earthly life were perfect would we desire eternal life? Would there be a need for God? We would have all the answers, we would have all the power, we would know all the right things to do - right? I don't believe so - you see - already God gives us one simple choice - accept the choice of salvation and have peace and know eternal life OR refuse the gift, turn our backs on Him and try to do the best we can.....and look at how hard we make that sometimes......
It's easy for us to say we accept Christ and that we're saved, but then we have all the 'buts' and 'what-ifs' and 'why me's' and 'this sure isn't the way I would do it'. We accept the gift of salvation and we know that our sins are forgiven, we know that God's way and His plan are perfect - when it matches what we envision is perfect.....
What we forget is that His plan is still perfect, even if it isn't easy - in fact, historically a Christian life on earth has never been a necessarily easy life - we forget that He knows every single detail of why things are the way they are and how they will impact every external factor. We lose our focus.....we lose confidence......because His plan doesn't match ours....
Our preacher used the example of a little boy, Hayden, in his evening message. he talked of Hayden and his family and the struggles the endure each day in his journey with epilepsy. He talked of Hayden's brother and his faithful prayers. He talked of Hayden's smile, despite the struggles. Hayden's story touched close to home.......my heart wept for Hayden and his family. I cried my own tears for our own struggles and the struggles Hayden and his family continue to bear. Right now I don't ask why because I understand it is a small part of God's larger plan.....but I still grieve for my own loss and I hurt for Hayden's family.....I grieve for them for the things they endure that other families probably couldn't ever imagine.....I grieve for them the things that they will never again take for granted - the things that others unknowingly do. I grieve for my loss. I grieve for my boys - the loss of their little sister and all that they've resiliently endured. I grieve for Stevie and the tremendous pressure of being the 'man of the family' with the responsibilty to provide for his family while trying to have to remain strong, while his wife openly weeps at drop of a hat - he lost his baby girl too - shouldn't he have the right to lose it any time he pleases too?.
No, there is a lot I don't understand. I've often said , that as a mother, Zeta would have been born healthy.......I would have never planned for her life to be the way that it was.......but when I stop and really think about it I know it was perfectly planned and that every step of her journey was not in vain......I know first-hand the good that has come of her short life. I've had the opportunity to experience life as I never have before......I know that she is healed and wearing that huge smile in heaven with her own little crown......I know that I will one day join her.
I know these things because I've accepted salvation.....I know these things because they are promised. .......I'm not standing on idol worship.....I'm not standing as a desperate mother grasping at anything to make the senseless make sense......I am standing as a grieving mom who is able to rejoice because I know that God is real....I know that Heaven is real......I stand on the promises of God, because I've already experienced too many things that are not coincidental...things that can only be explained by God.....I pay attention to the small things because the miracles are there - you just have to see them.........God is there - you just have to be CONFIDENT!
A journey of life, death, love.....
Wednesday, November 27, 2013
Friday, November 15, 2013
making it through the firsts
A while back I had the chance to sit down and really talk with another mom who had lost a child. One thing she pointed out was all of the "firsts' you would experience as a parent grieving a child. I guess I did not realize how poignant all of these firsts would be.....perhaps it's the fact that I've experienced so many of these firsts at one time lately......
Last week Trina and I (as part of Team Zeta) had the opportunity to visit a couple of families in the hospital.....This is one of the same hospitals Zeta was in.....we waited in the OR waiting room of which Zeta had her very first surgery....we visited another family in a unit in which it had been almost exactly three years to the day (only one day shy to be exact)that was the last time we were in that unit. During that particular stay Zeta was VERY, VERY ill and we actually ended up transferring to another hospital. There were a couple of the people on staff there that we left on not so happy terms with and I know the feeling was mutual - while at the same time we reluctantly left so many, many of the others. It was a superbly frightening time in our lives......the worry of the already month long traumatic stay......the worry that we were making the right decisions......the worry of what would happen if we ever had to come back to this unit......just a whole lot of emotion that I can't put into writing.....
Well, I was able to sit in the OR waiting room. It didn't bother me at all - in fact, I was honored to be there for another family in a way that others' had supported us. I actually saw one of our favorite surgeons and he took the time to talk with me at length. He even asked about the rest of my family and remembered such small details.....this is just one of the reasons he was one of our favorites. He didn't see Zeta as just a number on his caseload. He understood that she was our baby and we were her family and I don't think he ever took that for granted.
I went back to the NICU and visited with some of our friends and that was great too! We surely owe a lot to them <3
Going back to a different unit in the hospital was a little more difficult. It didn't dawn on me at the time that it would be difficult. We walked right in and I marched myself up to the desk - just to find one of the last nurses that worked during our last days there. I doubt she even knows (although she says she remembered me), but it was actually the next to last day we spent there. Zeta had been sedated for nearly 3 weeks and we were at a standstill with the doctors. I was just over it. Zeta started coughing and needed suctioning so I started to do it, and the nurse gently took it away from me......she was doing her job. I took it as another attack on my parenting skills or perhaps someone else just NOT listening to me and I just really lost it. I basically ran from the room without saying a word and left Zeta, Stevie and the nurse for 2 hours.....without a word.....without any utterance.....I ran away.....I prayed....a lot .....during those 2 hours.....in fact, I believe all that I did was pray. I prayed that God not take Zeta away....I prayed that we were making the right decisions. I prayed that people understand what we wanted, why we wanted it and what we were doing. I prayed that somehow everything could somehow be normal.....I poured out every emotion that had been kept in for so long.
When I faced the door to that unit last week all these emotions did not hit me immediately....As I walked through the doors I could feel the familiar dizziness associated with my panic attacks. I focused on the fact that I was very aware of where I was, but I also forced myself to realize that I was there for a very different reason than I was the last time. My mission was to make it to see the family that I was there to meet and to be a positive part of their experience there. The family accepted us with open arms and I was happy to see their little one awake and aware. They were full of praises for their medical team, for which I was grateful.....it also goes to show that different people have different experiences and there are so many variables that have a part in our experiences.....so in a place in which my life was very dark and uncertain - another family was experiencing joy and relief.....I've been on the other side of that too......In various units or with certain doctors our family experienced relief and joy while others were hurting or distressed or scared or felt like they weren't being heard........I think that's why it's medical 'practice' and not medical perfection......there is no way to know all about how to treat every patient and the people working there are human and have bad days or off days just like everyone else.........Why or how God so intricately orchestrated the two days I was there 3 years apart - I have no clue.....all I can say is that I have no doubt it"s part of His plan....I don't believe that anything happens by chance......
Another first I've experienced this week is going to the funeral home in which I last saw Zeta's body.....I can't say that it was traumatic when I left the first time. I walked to the casket and looked at her and realized it wasn't her, but just her body. When I felt the emotion come I simply walked away.....I didn't linger on the fact that there her body remained. I couldn't. Stevie asked me the other night to go with him to the funeral home because an elderly lady he knew when he was young had died. I agreed without reservation....actually I didn't give ANY thought to it....until we had actually parked and he turned the ignition off when we arrived. I just sat and stared at the door. Really? You want me to go in there? Really? I didn't say those things, I just thought them as I sat frozen in my seat for what seemed like an eternity - which was actually mere seconds I'm sure. I convinced myself that it would be fine and we walked in the funeral home.....I got in the door....no problem. I walked into the parlor....we talked to some old friends....no problem. I turned and faced the front and saw the casket - though much larger than the casket I saw when I was last there. I walked toward the front.....uh-oh this was way too familiar....I looked and saw the elderly lady's body there, lifeless......uh-oh, this was way too much and way too familiar......I had the need to get away.....I wasn't crying, I didn't cry......I just had to get out.....I couldn't face it.......so I walked away, without a word, without stopping, without noticing anything else.... I realize that part of me is still running......I don't visit the cemetery very often....I quickly realized that part of it is a way that I cope....plus I know that my baby is not there. She is in Heaven and that small plot of dirt just covers a shell.
The final first I've experienced this week is talking openly about my experiences with a group of other moms. It feels like I've talked openly about our experiences hundreds of times. I write about our experiences. I talk about them individually with other people. I've talked about them with a group of special needs families.....I've even talked about them with groups of my high school students......but Wednesday I talked about it with a group of moms. It seemed a lot more difficult to do it with that group than any other time I've talked about it.......Trina pointed out that maybe it was because they were moms and they related....All during my talk I fought back tears and emotion....I felt bad because when I looked out I saw that I was making most of the moms cry too - which was far from the message I was trying to convey.....you see I believe our story is a message of hope -I just couldn't figure out why it was so bad.....I had not dealt with this much emotion in telling my story before (well except when I was trying to tell it to my preacher's wife and a women's ministry leader which still leaves me a little perplexed).....perhaps because of all the 'firsts' I had experienced prior to speaking to this group of moms.....I think maybe why I felt so much raw emotion is because I spoke to that group AS A MOM, a grieving mom who is still trying to figure out what is normal.....a grieving mom who realizes how very important the little things are and tries to never take for granted all the little things with her boys.....JUST A MOM - not a special needs mom - not a mom who watched her baby fight 3 years and was told basically from conception that something would be different with her baby.....JUST A MOM.......and what makes that different is that as a mom you want what's best for your child, but sometimes you get confused in thinking you actually know what is best and God doesn't........as a mom, you want more than anything for your child to remain with you. As a mom, you assume you will outlive your children.....as a mom, you never want to sit by your child's hospital bed -you'd rather sit by her bed at home and help her say her prayers. As a mom, you can feel cheated if your child isn't perfect....you feel guilt for not doing all the right things.....you feel worry in making sure you've made the right choices......you wonder how you can fix things....you spend your life planning your children's future.....as just a mom.
There are days when the emotion pours out. There are times when I wonder if I will ever function as a normal person again.....what I realize is that most everyone experiences some of these emotions at some time. Life is not fair. God never said it would be. If life were perfect and fair we would have no need for God - I assume we would be God......We have to have faith....we have to push others in their faith....we all have a desire for something better in life....Eternity is just that.....God takes care of you when you trust Him.....and no matter how lost or hurt I feel I know that God is there. I can be confident in the blessings I see around me and the miracles I've witnessed. I know that my God is greater than any doubt, any fear or any obstacle I will ever face. I know that my God is the one true God. I know these things because my heart has been opened. I've accepted salvation. Does that make me perfect - no, I fail everyday.....sometimes, miserably. Does that make life wonderful all the time - well, if you've read this far then you know the answer to that is obviously no......Accepting salvation makes life worth living....it makes SOME things make better sense and helps you accept the things that don't seem to make any sense at all. It makes you thirst for knowledge and try to find a way to bless others and make them know His presence. It's not something you have to earn. All you have to say is, "Yes, Lord I believe in you, I am a sinner - I know I'm not perfect, Please come into my heart. I want to be with you in Heaven for eternity."
As a side note, we experienced another first Wednesday night - our first family portraits without Zeta...I would not have done them had it not been that our church is doing a new directory.....but we were able to actually have Zeta in one last family picture and no one questioned it at all....can't wait to show them!
Last week Trina and I (as part of Team Zeta) had the opportunity to visit a couple of families in the hospital.....This is one of the same hospitals Zeta was in.....we waited in the OR waiting room of which Zeta had her very first surgery....we visited another family in a unit in which it had been almost exactly three years to the day (only one day shy to be exact)that was the last time we were in that unit. During that particular stay Zeta was VERY, VERY ill and we actually ended up transferring to another hospital. There were a couple of the people on staff there that we left on not so happy terms with and I know the feeling was mutual - while at the same time we reluctantly left so many, many of the others. It was a superbly frightening time in our lives......the worry of the already month long traumatic stay......the worry that we were making the right decisions......the worry of what would happen if we ever had to come back to this unit......just a whole lot of emotion that I can't put into writing.....
Well, I was able to sit in the OR waiting room. It didn't bother me at all - in fact, I was honored to be there for another family in a way that others' had supported us. I actually saw one of our favorite surgeons and he took the time to talk with me at length. He even asked about the rest of my family and remembered such small details.....this is just one of the reasons he was one of our favorites. He didn't see Zeta as just a number on his caseload. He understood that she was our baby and we were her family and I don't think he ever took that for granted.
I went back to the NICU and visited with some of our friends and that was great too! We surely owe a lot to them <3
Going back to a different unit in the hospital was a little more difficult. It didn't dawn on me at the time that it would be difficult. We walked right in and I marched myself up to the desk - just to find one of the last nurses that worked during our last days there. I doubt she even knows (although she says she remembered me), but it was actually the next to last day we spent there. Zeta had been sedated for nearly 3 weeks and we were at a standstill with the doctors. I was just over it. Zeta started coughing and needed suctioning so I started to do it, and the nurse gently took it away from me......she was doing her job. I took it as another attack on my parenting skills or perhaps someone else just NOT listening to me and I just really lost it. I basically ran from the room without saying a word and left Zeta, Stevie and the nurse for 2 hours.....without a word.....without any utterance.....I ran away.....I prayed....a lot .....during those 2 hours.....in fact, I believe all that I did was pray. I prayed that God not take Zeta away....I prayed that we were making the right decisions. I prayed that people understand what we wanted, why we wanted it and what we were doing. I prayed that somehow everything could somehow be normal.....I poured out every emotion that had been kept in for so long.
When I faced the door to that unit last week all these emotions did not hit me immediately....As I walked through the doors I could feel the familiar dizziness associated with my panic attacks. I focused on the fact that I was very aware of where I was, but I also forced myself to realize that I was there for a very different reason than I was the last time. My mission was to make it to see the family that I was there to meet and to be a positive part of their experience there. The family accepted us with open arms and I was happy to see their little one awake and aware. They were full of praises for their medical team, for which I was grateful.....it also goes to show that different people have different experiences and there are so many variables that have a part in our experiences.....so in a place in which my life was very dark and uncertain - another family was experiencing joy and relief.....I've been on the other side of that too......In various units or with certain doctors our family experienced relief and joy while others were hurting or distressed or scared or felt like they weren't being heard........I think that's why it's medical 'practice' and not medical perfection......there is no way to know all about how to treat every patient and the people working there are human and have bad days or off days just like everyone else.........Why or how God so intricately orchestrated the two days I was there 3 years apart - I have no clue.....all I can say is that I have no doubt it"s part of His plan....I don't believe that anything happens by chance......
Another first I've experienced this week is going to the funeral home in which I last saw Zeta's body.....I can't say that it was traumatic when I left the first time. I walked to the casket and looked at her and realized it wasn't her, but just her body. When I felt the emotion come I simply walked away.....I didn't linger on the fact that there her body remained. I couldn't. Stevie asked me the other night to go with him to the funeral home because an elderly lady he knew when he was young had died. I agreed without reservation....actually I didn't give ANY thought to it....until we had actually parked and he turned the ignition off when we arrived. I just sat and stared at the door. Really? You want me to go in there? Really? I didn't say those things, I just thought them as I sat frozen in my seat for what seemed like an eternity - which was actually mere seconds I'm sure. I convinced myself that it would be fine and we walked in the funeral home.....I got in the door....no problem. I walked into the parlor....we talked to some old friends....no problem. I turned and faced the front and saw the casket - though much larger than the casket I saw when I was last there. I walked toward the front.....uh-oh this was way too familiar....I looked and saw the elderly lady's body there, lifeless......uh-oh, this was way too much and way too familiar......I had the need to get away.....I wasn't crying, I didn't cry......I just had to get out.....I couldn't face it.......so I walked away, without a word, without stopping, without noticing anything else.... I realize that part of me is still running......I don't visit the cemetery very often....I quickly realized that part of it is a way that I cope....plus I know that my baby is not there. She is in Heaven and that small plot of dirt just covers a shell.
The final first I've experienced this week is talking openly about my experiences with a group of other moms. It feels like I've talked openly about our experiences hundreds of times. I write about our experiences. I talk about them individually with other people. I've talked about them with a group of special needs families.....I've even talked about them with groups of my high school students......but Wednesday I talked about it with a group of moms. It seemed a lot more difficult to do it with that group than any other time I've talked about it.......Trina pointed out that maybe it was because they were moms and they related....All during my talk I fought back tears and emotion....I felt bad because when I looked out I saw that I was making most of the moms cry too - which was far from the message I was trying to convey.....you see I believe our story is a message of hope -I just couldn't figure out why it was so bad.....I had not dealt with this much emotion in telling my story before (well except when I was trying to tell it to my preacher's wife and a women's ministry leader which still leaves me a little perplexed).....perhaps because of all the 'firsts' I had experienced prior to speaking to this group of moms.....I think maybe why I felt so much raw emotion is because I spoke to that group AS A MOM, a grieving mom who is still trying to figure out what is normal.....a grieving mom who realizes how very important the little things are and tries to never take for granted all the little things with her boys.....JUST A MOM - not a special needs mom - not a mom who watched her baby fight 3 years and was told basically from conception that something would be different with her baby.....JUST A MOM.......and what makes that different is that as a mom you want what's best for your child, but sometimes you get confused in thinking you actually know what is best and God doesn't........as a mom, you want more than anything for your child to remain with you. As a mom, you assume you will outlive your children.....as a mom, you never want to sit by your child's hospital bed -you'd rather sit by her bed at home and help her say her prayers. As a mom, you can feel cheated if your child isn't perfect....you feel guilt for not doing all the right things.....you feel worry in making sure you've made the right choices......you wonder how you can fix things....you spend your life planning your children's future.....as just a mom.
There are days when the emotion pours out. There are times when I wonder if I will ever function as a normal person again.....what I realize is that most everyone experiences some of these emotions at some time. Life is not fair. God never said it would be. If life were perfect and fair we would have no need for God - I assume we would be God......We have to have faith....we have to push others in their faith....we all have a desire for something better in life....Eternity is just that.....God takes care of you when you trust Him.....and no matter how lost or hurt I feel I know that God is there. I can be confident in the blessings I see around me and the miracles I've witnessed. I know that my God is greater than any doubt, any fear or any obstacle I will ever face. I know that my God is the one true God. I know these things because my heart has been opened. I've accepted salvation. Does that make me perfect - no, I fail everyday.....sometimes, miserably. Does that make life wonderful all the time - well, if you've read this far then you know the answer to that is obviously no......Accepting salvation makes life worth living....it makes SOME things make better sense and helps you accept the things that don't seem to make any sense at all. It makes you thirst for knowledge and try to find a way to bless others and make them know His presence. It's not something you have to earn. All you have to say is, "Yes, Lord I believe in you, I am a sinner - I know I'm not perfect, Please come into my heart. I want to be with you in Heaven for eternity."
As a side note, we experienced another first Wednesday night - our first family portraits without Zeta...I would not have done them had it not been that our church is doing a new directory.....but we were able to actually have Zeta in one last family picture and no one questioned it at all....can't wait to show them!
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