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Breck's Thoughts: Terrified

Thursday, August 12, 2010

I almost didn't post yesterday's blogpost.

I was hesitant.  My blog posts are a reflection of my feelings, thoughts, concerns and fears.  So, it's easy to look back over my blog posts and see patterns of how I was feeling at a certain moment in this journey.

I've been reflecting on my posts lately and wondered, "Am I writing too much about Bennett's difficulties and our struggles through them?"  Sure, this is what we are dealing with.  And this is what I am thinking about.  But I wondered, "Am I too focused on our struggles and not as focused on our hopes?"

When facing a struggle, some collapse.   Others ignore it and pray it goes away.  Then others seem to try to go right into it...to stare it down and confront it wholeheartedly. 

This is what I hope I do.

I'm a "realist."  I'd rather expect the worse outcome and be pleasantly surprised with a better outcome.

I'm a "problem-solver."  Give me an issue and I'll stay focused on it until I overcome it.

I'm a "tell-me-like-it-is" kind of girl.  I don't like surprises and want to know as much as I can about anything.

But yesterday, during my reflection of my recent blog posts, I realized that there is something more going on behind my problem-solving, realist, tell-me-like-it-is desire to confront Bennett's issues.

There is another reason why I tend to want to embrace my child's illness and long-term issues.

As I have dug deeper within my heart and peeled back the layers of noise I place in between life and my feelings, I realized that the reason why I tend to write alot about about Bennett's illness, particularly what makes his illness difficult.  This is because...


I.am.terrified.


I.am.beyond.terrified.


I.am.beyond.terrified.that.I'm.going.to.lose.him.


I had no idea these feelings were swimming within me.  But recent reflections of my writings - how I write about the difficulty of caring for Bennett, about the risks Bennett's CF causes him, about the lists of issues Bennett currently faces, indicate that I may be writing for comfort.

I want comfort.

And it is comforting to remember that my child is sick...because if I remember he's sick, then if he is taken from me abruptly, I think I believe it won't feel so painful.

I think that I have been unknowingly working on the premise that...

Healthy children don't get taken away too soon.
Only sick children do.

So, if Bennett is taken from us, then I shouldn't be quite as surprised/devastated for he was sick.

However, the truth is, sometimes healthy children do get taken too soon.  And many sick children heal and never see a death they once faced.

But underneath layers of thoughts, blog posts, coping mechanisms, daily routines, I have believed otherwise.

I'm keenly aware that CF takes lives.  And I'm fully aware that Cystic Fibrosis will likely take my own son's life at some point.

But I realize now that I have falsely believed that, somehow, if only I could keep the awareness of his potential early mortality in the forefront of my mind, I could prolong the pain should it happen.

However, it is not that easy.

For death is always painful, no matter the circumstances - whether or not you're expecting it.  And there is nothing I can do to add one second to his life.  When it is his time, it is his time.  As it will be with my own death, God chooses to give life and to take it away.  There is nothing I can do about it. 

Sure, rationally, I know that I am not in control.  But that doesn't take away that I want to try to be.

I am absolutely terrified to face the loss of my son.  And every moment that I fall in love with him more, I realize that that fear only grows...

...even when I don't realize I'm even thinking about it.

Bennett's CF causes me to face issues that, if I really thought about it, I feel about others as well.  I am terrified to face the death of many people in my life, including my soulmate and husband.  But I can pretend that that won't happen for many years, until we are in the old folk's home.  However, Bennett's CF reminds me that life is short and we are like here for only a short time.

You have made my days a mere handbreadth, the span of my years is as nothing before you.  Each man's life is but a breath.  Psalm 39:4-5

It is false to believe that my awareness of Bennett's illness will help me better cope with a early death or even somehow prolong it.  But now that I understand this, I can replace those false beliefs with true beliefs.  I must remember that God will comfort me, in time, when I need it.

For now, I must trust that God is good and will make something good out of Bennett's CF...whether he is sick or not.

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.  Jeremiah 29:11

8 Responses to “Breck's Thoughts: Terrified”

  1. Great writing. I really understand your thought process. I felt much the same way through my pregnancy with Daniel. I had low hopes because of miscarriage and I felt like I needed to prepare myself. I also didn't feel as scared when he had to have resuscitation at birth because I had never really trusted God to give me a baby anyway. Its only now that I look back that I can realize that God was protecting us both, and I was not protecting my heart from "what if and maybe" pain, I was blocking my heart out of God's love and feeling his protection and blessings of pregnancy.

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  2. Very well stated and understood. I too am a problem-solving, realist, tell-me-like-it-is desire to confront my son's CF. It has helped me so much to come across other CF Mom's with such similar feelings and obstacles that I go through. Thank you so much for sharing your thoughts and feelings. It's nice to know we aren't alone.

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  3. Oh Breck, thank you so much for sharing this. I wish I could say I know how you feel, but that would obviously be false. You are experiencing now that which all of us will have to face eventually. You are right--most of us are able to put death out of our mind's for the time being--it is good to be reminded of how precious our lives are and how truly blessed it is to be healthy.

    ReplyDelete
  4. Thank you for being "transparent" with us by sharing your innermost fears. It helps us as prayer warriors to know how to target our prayers for Bennett, for you, for Brian and for Oliver. I'm very much like you - the tell-me-like-it-is, learn-all-I-can-about-it person. And aso like you, I "talk" through my feelings through writing. It helps me sort things out in my mind - and in my heart. I cannot walk in your shoes, but I can listen to your struggles and I can pray.

    I had to go to the MFCC clinic a couple of weeks ago for a sinus infection. Did you know that Bennett's magnets are clipped on the exam room doors? Everyone who works there is constantly reminded to pray - and all of the patients see his precious face. Some of us know exactly who Bennett is and that we need to continually pray for him. Others don't know who he is, but maybe they are curious enough to ask. And once they ask, maybe they pray also.

    I hate to admit my age here, but I've watched you grow up from a precocious articulate little girl who was curious about the world around her to this amazing wife and mother who handles pressures every day that I can't fathom. I amazed to see how God has worked in your life over the years - and I'm so thankful that our individual threads have been interwoven in God's Tapestry through the years. You are an inspiration and source of encouragement for me. <>< Marsha

    ReplyDelete
  5. Breck, I just came by to check on you guys. I do understand your need to figure out and be real with CF as I feel much the same way. I research all the time and am constantly trying to figure it out. Just tonight I had a person tell me he had a friend that had cf so he was well aquainted with the disease. However his friend has been pretty healthy and has already beat the average age. I left him feelings soooo frustrated, because our child's cf has not looked much like others that we have heard of. Of course there have been many that have had it tougher, but our daughter has definitely had it on the rougher side with her lungs and weight.

    Bottom line is it is tough. BUT you are right God is good. I tell myself so often that there is nothing that I can do to add a single moment to my child's life. It is God and God alone that is the giver and sustainer of life. I think you hit it on the head though, as mama's with kiddos that have struggled early. Quick background we were told an hour after her birth that our daughter might not make it out of the surgery that she desperately needed to live (MI). Then 10 days later she had heart failure, and her lungs collapsed...once again moment by moment to see if we would ever get to see her make it to day 11 and beyond-not every cf mama's had those kind of moments yet. I think those alone start us at a different point. We are faced with the fact that we may loose our child much, much earlier than we could ever hope, but once again when I start to feel that constant fear creep up...I turn my eyes upon Jesus. I pray for you guys often. Our little one had a really tough first year with lots and lots and lots of tummy troubles. She still struggles, but it has gotten better. It is still more than I can handle on my own with out HIS strength. But God is good. I also have to tell you that it does in a way get...not necessarily easier, but more routine. I remember splitting pills taking me forever, and having a spread sheet for the 36 different doses of med's a day. Now, I know it like the back of my hand (even if there are now over 65 pills/doses of stuff that she takes). You will get it.

    Be encouraged, God knew that you could and would be the best mama for Bennett. You are just what your family needs, all of them. And, yes, God does have a special plan for our little ones with CF. Tough as it is at times, it is all for His glory and our blessings. Have a glorious day.

    ReplyDelete
  6. Breck, I just came by to check on you guys. I do understand your need to figure out and be real with CF as I feel much the same way. I research all the time and am constantly trying to figure it out. Just tonight I had a person tell me he had a friend that had cf so he was well aquainted with the disease. However his friend has been pretty healthy and has already beat the average age. I left him feelings soooo frustrated, because our child's cf has not looked much like others that we have heard of. Of course there have been many that have had it tougher, but our daughter has definitely had it on the rougher side with her lungs and weight.

    Bottom line is it is tough. BUT you are right God is good. I tell myself so often that there is nothing that I can do to add a single moment to my child's life. It is God and God alone that is the giver and sustainer of life. I think you hit it on the head though, as mama's with kiddos that have struggled early. Quick background we were told an hour after her birth that our daughter might not make it out of the surgery that she desperately needed to live (MI). Then 10 days later she had heart failure, and her lungs collapsed...once again moment by moment to see if we would ever get to see her make it to day 11 and beyond-not every cf mama's had those kind of moments yet. I think those alone start us at a different point. We are faced with the fact that we may loose our child much, much earlier than we could ever hope, but once again when I start to feel that constant fear creep up...I turn my eyes upon Jesus. I pray for you guys often. Our little one had a really tough first year with lots and lots and lots of tummy troubles. She still struggles, but it has gotten better. It is still more than I can handle on my own with out HIS strength. But God is good. I also have to tell you that it does in a way get...not necessarily easier, but more routine. I remember splitting pills taking me forever, and having a spread sheet for the 36 different doses of med's a day. Now, I know it like the back of my hand (even if there are now over 65 pills/doses of stuff that she takes). You will get it.

    Be encouraged, God knew that you could and would be the best mama for Bennett. You are just what your family needs, all of them. And, yes, God does have a special plan for our little ones with CF. Tough as it is at times, it is all for His glory and our blessings. Have a glorious day.

    ReplyDelete
  7. Breck, I just came by to check on you guys. I do understand your need to figure out and be real with CF as I feel much the same way. I research all the time and am constantly trying to figure it out. Just tonight I had a person tell me he had a friend that had cf so he was well aquainted with the disease. However his friend has been pretty healthy and has already beat the average age. I left him feelings soooo frustrated, because our child's cf has not looked much like others that we have heard of. Of course there have been many that have had it tougher, but our daughter has definitely had it on the rougher side with her lungs and weight.
    Bottom line is it is tough. BUT you are right God is good. I tell myself so often that there is nothing that I can do to add a single moment to my child's life. It is God and God alone that is the giver and sustainer of life. I think you hit it on the head though, as mama's with kiddos that have struggled early. Quick background we were told an hour after her birth that our daughter might not make it out of the surgery that she desperately needed to live (MI). Then 10 days later she had heart failure, and her lungs collapsed...once again moment by moment to see if we would ever get to see her make it to day 11 and beyond-not every cf mama's had those kind of moments yet. I think those alone start us at a different point. We are faced with the fact that we may loose our child much, much earlier than we could ever hope, but once again when I start to feel that constant fear creep up...I turn my eyes upon Jesus. I pray for you guys often. Our little one had a really tough first year with lots and lots and lots of tummy troubles. She still struggles, but it has gotten better. It is still more than I can handle on my own with out HIS strength. But God is good. I also have to tell you that it does in a way get...not necessarily easier, but more routine. I remember splitting pills taking me forever, and having a spread sheet for the 36 different doses of med's a day. Now, I know it like the back of my hand (even if there are now over 65 pills/doses of stuff that she takes). You will get it.

    Be encouraged, God knew that you could and would be the best mama for Bennett. You are just what your family needs, all of them. And, yes, God does have a special plan for our little ones with CF. Tough as it is at times, it is all for His glory and our blessings. Have a glorious day.

    ReplyDelete
  8. Breck, I just came by to check on you guys. I do understand your need to figure out and be real with CF as I feel much the same way. I research all the time and am constantly trying to figure it out. Our child's cf has not looked much like others that we have heard of. Of course there have been many that have had it tougher, but our daughter has definitely had it on the rougher side with her lungs and weight.
    Bottom line is it is tough. BUT you are right God is good. I tell myself so often that there is nothing that I can do to add a single moment to my child's life. It is God and God alone that is the giver and sustainer of life. I think you hit it on the head though, as mama's with kiddos that have struggled early. Quick background we were told an hour after her birth that our daughter might not make it out of the surgery that she desperately needed to live (MI). Then 10 days later she had heart failure, and her lungs collapsed...once again moment by moment to see if we would ever get to see her make it to day 11 and beyond-not every cf mama's had those kind of moments yet. I think those alone start us at a different point. We are faced with the fact that we may loose our child much, much earlier than we could ever hope, but once again when I start to feel that constant fear creep up...I turn my eyes upon Jesus. I pray for you guys often. Our little one had a really tough first year with lots and lots and lots of tummy troubles. She still struggles, but it has gotten better. It is still more than I can handle on my own with out HIS strength. But God is good. I also have to tell you that it does in a way get...not necessarily easier, but more routine. I remember splitting pills taking me forever, and having a spread sheet for the 36 different doses of med's a day. Now, I know it like the back of my hand (even if there are now over 65 pills/doses of stuff that she takes). You will get it.

    Be encouraged, God knew that you could and would be the best mama for Bennett. You are just what your family needs, all of them. And, yes, God does have a special plan for our little ones with CF. Tough as it is at times, it is all for His glory and our blessings. Have a glorious day.

    ReplyDelete

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