Grieving
I assume that when someone loses a child, at that point they realize that they will be grieving. Even after having a miscarriage, I knew I had to grieve the loss of the child we would never have. However, when your child survives but has lifelong disabilities, you don't even realize that you need to and will grieve.
Denial
Anger
Bargaining
Depression
Acceptance
Denial: I have a hard time discerning between denial and hope. Throughout everything there have been times when I felt like Wesley was going to be just fine. Looking back, I was somewhat naive while we were in the hospital in that it took a long time for me to realize the doctors weren't sure Wes was going to survive the first few days. I also didn't really accept the extent of his brain damage (and sometimes still don't). When they said he might have a hearing loss and needed to be tested again, I didn't believe them. I honestly believed at one point that Wes would need glasses and that would be it. But I have a hard time seeing all of that as denial. I'm sure to some extent everything we were going through was so traumatic that I wasn't really absorbing the gravity of the situation. But at the same time, we really had (and still have) no idea what Wesley's future would be like. Why assume the worst when God is capable of healing anything? I don't know where the line is between denial and hope. I would say I was pretty hopeful for most of the time in the hospital that although things were bad, they would eventually get better. Once we got home, two really hard hitting events made the reality of Wesley's future seem more grim. When the early intervention physical therapist did an evaluation on Wesley and told me he was "below the 1st percentile" developmentally for his age, I was heartbroken. I knew that his head control was bad but my limited experience with infants I guess prevented me from realizing how bad. Then the pediatrician told me he was "below the 1st percentile" in height and weight. Something about the quantitative value "below the 1st percentile" hit my mathematical mind and I realized that this was going to be a lifelong struggle. I knew that his rough start had put him behind developmentally and I knew that he wasn't growing as fast as they wanted him to but that phrase made the gravity of his situation sink in to my mathematical brain and in that, I lost some of my hope that God's plan was to heal him completely.
Anger: From there, I began grieving the hopes and dreams I had for Wesley's life. Without really knowing what his future will be, I started grieving the things that he most likely won't get to do. Those experiences that had always been in my mind as parts of being a mother; hearing him call me mommy, watching him take his first steps, seeing him make friends, taking him to kindergarten, helping him with his homework, teaching him how to drive, seeing him get his first job, watching him go on his first date, dropping him off at college, watching him get married, seeing him become a parent. All those things are maybes now instead of probablys and that just is incredibly unfair. It's not so much that I won't get to experience those things as a mother (because we will probably have other healthy children who will do those things), it's that even if Wesley wants to do some of those things, he might not be able to. I know life's not fair but I've never experienced the reality of that so harshly until now.
Bargaining: I'm not sure I'm in the bargaining stage or that I ever will be. I feel like I'm in a "fix it" stage or a caregiver stage. Maybe that's part of bargaining but right now I want to find everything out I can to fix this. I also want answers for why this happened so I can fix whatever it is so it doesn't happen again. I feel like I need to get Wesley into every doctor, therapist, clinical trial, and alternative medicine treatment that there is so we can fix everything right now. His doctors want to help him too but they are more patient about how quickly and aggressively he needs to be treated since they don't normally even diagnose kids this early. I spend entirely too many nights googling away not really finding any answers because no one knows what Wesley will be like 10 years from now. Yet still, I google away so that I can try to fix everything so we can have a life as if this "horrible thing" was a memory rather than a never ending part of our lives.
Depression: There are moments when everything weighs on my shoulders and I just feel burdened. I burst into tears on occasion without any real provocation. But, I wholeheartedly believe that the support of family and friends and my relationship with God have prevented this situation from becoming unbearable. There are times when things seem hopeless but I don't think I will ever totally spiral into depression because I know God is here.
Acceptance: Ultimately, the goal is to accept what has happened and stop seeing it as a horrible thing. I love Wesley unconditionally just how he is but I still wish this hadn't happened to him. It's hard to accept everything and be at peace with it when there is still so much unknown. I know that God is in control and His plans are perfect but right now that leaves me more frustrated and confused than at peace.
As soon as I feel like I'm done with one stage of grief, I cycle through them all over again. Some days I go through every phase (maybe within a couple of hours even). I guess this is all part of coping and dealing with the hard parts of life. From other parents I've talked to, the first year is the worst. After that, things start settling down into more of a routine (and fewer doctors appointments). By that point, most of them said they either knew what cause their child's problems or knowing became less important to them. It's encouraging to know that the rest of my life won't be spent on this emotional roller coaster (although I'm sure there will always be days).
I often feel like people are afraid to tell me anything hard that they are dealing with because they think it doesn't compare to what I'm going through. I hate that because as difficult as what we're going through is, life is hard sometimes for everyone. We all have hardships of varying "difficulty" and just because my pain is real and fresh, doesn't mean it isn't legitimate to have a hard time with a lost relationship, or becoming a new mom, or fighting illness, or anything else. I believe now more than ever that we are all in this life together (Romans 12:15 Rejoice with those who rejoice; mourn with those who mourn).
Denial
Anger
Bargaining
Depression
Acceptance
Denial: I have a hard time discerning between denial and hope. Throughout everything there have been times when I felt like Wesley was going to be just fine. Looking back, I was somewhat naive while we were in the hospital in that it took a long time for me to realize the doctors weren't sure Wes was going to survive the first few days. I also didn't really accept the extent of his brain damage (and sometimes still don't). When they said he might have a hearing loss and needed to be tested again, I didn't believe them. I honestly believed at one point that Wes would need glasses and that would be it. But I have a hard time seeing all of that as denial. I'm sure to some extent everything we were going through was so traumatic that I wasn't really absorbing the gravity of the situation. But at the same time, we really had (and still have) no idea what Wesley's future would be like. Why assume the worst when God is capable of healing anything? I don't know where the line is between denial and hope. I would say I was pretty hopeful for most of the time in the hospital that although things were bad, they would eventually get better. Once we got home, two really hard hitting events made the reality of Wesley's future seem more grim. When the early intervention physical therapist did an evaluation on Wesley and told me he was "below the 1st percentile" developmentally for his age, I was heartbroken. I knew that his head control was bad but my limited experience with infants I guess prevented me from realizing how bad. Then the pediatrician told me he was "below the 1st percentile" in height and weight. Something about the quantitative value "below the 1st percentile" hit my mathematical mind and I realized that this was going to be a lifelong struggle. I knew that his rough start had put him behind developmentally and I knew that he wasn't growing as fast as they wanted him to but that phrase made the gravity of his situation sink in to my mathematical brain and in that, I lost some of my hope that God's plan was to heal him completely.
Anger: From there, I began grieving the hopes and dreams I had for Wesley's life. Without really knowing what his future will be, I started grieving the things that he most likely won't get to do. Those experiences that had always been in my mind as parts of being a mother; hearing him call me mommy, watching him take his first steps, seeing him make friends, taking him to kindergarten, helping him with his homework, teaching him how to drive, seeing him get his first job, watching him go on his first date, dropping him off at college, watching him get married, seeing him become a parent. All those things are maybes now instead of probablys and that just is incredibly unfair. It's not so much that I won't get to experience those things as a mother (because we will probably have other healthy children who will do those things), it's that even if Wesley wants to do some of those things, he might not be able to. I know life's not fair but I've never experienced the reality of that so harshly until now.
Bargaining: I'm not sure I'm in the bargaining stage or that I ever will be. I feel like I'm in a "fix it" stage or a caregiver stage. Maybe that's part of bargaining but right now I want to find everything out I can to fix this. I also want answers for why this happened so I can fix whatever it is so it doesn't happen again. I feel like I need to get Wesley into every doctor, therapist, clinical trial, and alternative medicine treatment that there is so we can fix everything right now. His doctors want to help him too but they are more patient about how quickly and aggressively he needs to be treated since they don't normally even diagnose kids this early. I spend entirely too many nights googling away not really finding any answers because no one knows what Wesley will be like 10 years from now. Yet still, I google away so that I can try to fix everything so we can have a life as if this "horrible thing" was a memory rather than a never ending part of our lives.
Depression: There are moments when everything weighs on my shoulders and I just feel burdened. I burst into tears on occasion without any real provocation. But, I wholeheartedly believe that the support of family and friends and my relationship with God have prevented this situation from becoming unbearable. There are times when things seem hopeless but I don't think I will ever totally spiral into depression because I know God is here.
Acceptance: Ultimately, the goal is to accept what has happened and stop seeing it as a horrible thing. I love Wesley unconditionally just how he is but I still wish this hadn't happened to him. It's hard to accept everything and be at peace with it when there is still so much unknown. I know that God is in control and His plans are perfect but right now that leaves me more frustrated and confused than at peace.
As soon as I feel like I'm done with one stage of grief, I cycle through them all over again. Some days I go through every phase (maybe within a couple of hours even). I guess this is all part of coping and dealing with the hard parts of life. From other parents I've talked to, the first year is the worst. After that, things start settling down into more of a routine (and fewer doctors appointments). By that point, most of them said they either knew what cause their child's problems or knowing became less important to them. It's encouraging to know that the rest of my life won't be spent on this emotional roller coaster (although I'm sure there will always be days).
I often feel like people are afraid to tell me anything hard that they are dealing with because they think it doesn't compare to what I'm going through. I hate that because as difficult as what we're going through is, life is hard sometimes for everyone. We all have hardships of varying "difficulty" and just because my pain is real and fresh, doesn't mean it isn't legitimate to have a hard time with a lost relationship, or becoming a new mom, or fighting illness, or anything else. I believe now more than ever that we are all in this life together (Romans 12:15 Rejoice with those who rejoice; mourn with those who mourn).
I love this picture. I was trying so hard to catch him smiling and it turns out my favorite picture is where he is frowning. He looks so tough like he's ready to fight it out. Maybe a little stubborn too like "don't tell me I can't do something; I'll show you!".
You should read the story "Trip to Holland" my wife who works at University Hospital in the NICU highly recommends it.
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