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Letter to the Mothers who live my deepest fear

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Wednesday, August 24, 2011

Letter to the Mothers who live my deepest fear

Just answer me one question, how do you go on?

If I would have been asked two years ago what my greatest fear was, I would have said, “Having an unhealthy baby.”  When you are pregnant these are the fears that occupy your mind.  When that fear was realized, I found a way to go on.  I knew it was not the end, but only the beginning of a new journey.  I knew… it wasn’t really my greatest fear.  I survived that fear… but I still have one left.

It is so crippling, that sometimes I struggle to breathe.  It consumes my thoughts at least once a day.  How do you endure the death of a child? 

This past two weeks, two beautiful people with the same syndrome as Alexander have passed on to Heaven.  I write those words from my head.  My head tells me that they are running free of all physical restrictions and are awaiting the arrival of their family in Heaven.  My faith tells my head that truth. 

But my heart won’t listen.  My heart brakes for the families of those children.  My heart rages at the syndrome that leaves so many fears.  My heart … crumbles into a million pieces as I admit my deep dark secret.  I am not as strong as I seem.  I do not know how those mothers go on.  I do not know if I would be able. 

In our small church, there are several mothers who have buried their children.  On Sunday, I sat and looked around, and my thoughts drifted to the parents – connected – to – me – through – genetics… I quietly wept.  Will I someday find myself amongst those ranks?  Who even thinks these thoughts?  Will I alienate myself because I have this fear?  Because I’ve aired it out loud?  How can I bury this fear?  Will I push myself further away from my friends who already don’t quite know what to say to me?

** My good friend (whom I ran this post by before publishing it) asked me WHY I am so scared right now.  I started to write it in this post, but erased it because it seemed too wordy.  Not only has our small community lost several beloved people lately, but other, more personal things have happened.
When I was pregnant with Alexander, we attempted to buy a bigger – 2 story – house.  Our attempts were not realized and I remember asking one of my closest confidants, “What if God is making sure we don’t sell our house because something is wrong with the baby?  What if he wants us to stay here because he knows we won’t be able to handle the stress of a bigger mortgage?”
Fast forward – we did not buy a bigger house.  That fear was realized.
A few weeks ago, there was an opportunity for us to possibly, again, attempt to get a bigger house for our family.  A larger house would also bring a larger mortgage and would commit us to a 2 paycheck family.  I prayed one prayer, “God… please let the decision to move or stay be an easy one to make.”  It turned out, that prayer was answered – the decision was easy.  The offer was not what we expected .. and we are staying.  In the back of my mind – I can’t help but think, “God knows my fears.  He knows I am week and might not be able to maintain a job if something happens to Alexander.  God is taking care of us.”  And it scares me – literally into a state of debilitation. **

I’m not sleeping. I’m literally paralyzed with this fear. I hold Alexander … and beg for mercy. I think of him constantly. And, truth be told – I don’t know how I would cope if anything happened to any of my children. And my head knows that anything can happen to anyone at anytime. But my heart worries for my medically fragile child. As each child is brought to us in prayer – death, seizures, complications …. it grips my heart.

But … really … how do those mothers go on?
There. I just poured my heart out.  Shell @ Things I Can’t Say encouraged me to do it…

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At August 24, 2011 at 7:11 AM , Blogger Shell said...

I really don't know how they go on. I guess because they don't have any other choice.

I have to try really hard not to think about it, as the truth is that it could happen to any of my kids at any time. I don't know what I would do.

At August 24, 2011 at 7:29 AM , Blogger Kristi said...

My sister is a Mom of two. One here with us and one in Heaven. My niece, Olivia, passed away at 3 & 1/2 months due to a cyst in her bowels and (they think) liver failure. This happened during the time my sister was going through a divorce and had suffered a miscarriage and resulting loss of her job (for being out on medical leave because of the miscarriage)the year before. I don't know how she goes on but she is happy and thriving 8 months after the loss. I think we all have these fears locked deep inside us and one of mine (a close second to losing one of my children) is that my husband will be killed when he's deployed. Last time he deployed I let my mind wander and figure out just exactly what I would do if that happened. Mentally I know that the kids and I would be ok and we could go on but my heart believes it will never heal if that ever happens. But I needed to have a plan. a 'what if' plan. I know who I would call first, what to do with the kids & anything else you can think of. I just needed to have that sense of a plan for the W.C.S. (Worst Case Scenario).
Good Luck & I hope you find a little peace!
@ Creative Kristi

At August 24, 2011 at 7:41 AM , OpenID joanna said...

I don't know how those parents survive. On Saturday we buried a three year old boy who drowned in his pool. His mom just kept screaming, "I'm sorry". She has another son who is five. I told my co worker, If I lost one of my boys the only thing that would keep me alive is my other boy.
Because of my job, death is real for me and not an abstract and I do occasionally think about it..death of my parents, my spouse, my kids and it paralyzes me. I don't think anyone can answer your question except someone who has lived through it.

At August 24, 2011 at 9:17 AM , Blogger Jennifer said...

One of my best friends had to deliver her baby stillborn. I was with her through the entire pregnancy from when she received the diagnosis until she delivered her little girl.

I didn't understand how she could be so strong and face, to me, what was a nightmare. She said, "I'll be the best mother I can to this baby for as long as God needs me to be."

It really hit me. Our children are really only on loan. Whether they be healthy or not. We are offered no gurantees of how long they will be with us. Therefore we have to just be the best mothers we can be for as long as God needs us to be. After that he will take care of the rest.

My favorite Bible verse is Isaiah 41:10, "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." And that is how you will survive. Through the strong right hand of God.

At August 24, 2011 at 9:38 AM , Blogger The Dortenzos said...

Love you dear momma friend!

At August 24, 2011 at 10:01 AM , Blogger Shauna Nosler said...

beautifully said ... I don't they do go on ... not complettely. If you get a chance to stop by my site today you might like what I wrote as well ... maybe even find some peace. Take care and keep holding your baby!

At August 24, 2011 at 11:32 AM , Blogger Tara R. said...

I cannot imagine the pain of the death of a child. It scares me too. My son struggles with several mental health disorders and I can't help but fear that one day it might be simply too overwhelming for him. Please, if you feel that it would help, talk with a trained professional. You shouldn't have to bear this on your own.

At August 24, 2011 at 11:36 AM , Blogger Di said...

I don't know how they go on. I don't think I could if something happened to my Jellybean but then again I guess you don't have a choice but to go on.

At August 24, 2011 at 2:44 PM , Blogger justin and marsi said...

you may enjoy the book "Heaven is for Real" by Todd Burpo. it's giving me peace with losing my mom. i am not comparing that at all to losing a child, but it may speak to you. It's not your average self help book, but a story of a child who visited heaven.

At August 24, 2011 at 2:57 PM , Blogger Jessica said...

This is my greatest fear. I lost my best friend at 16. I remember her mother's screams and still have nightmares of them. I almost lost my newborn 11 months ago, and am stilly paralyzed in that fear. I am always nervous something bad will happen. I think as moms, we just have to try to not let ourselves go there.

At August 24, 2011 at 3:41 PM , Blogger jen@its all about me said...

I miss my son and daughter like crazy and there isn't a day that goes by that I don't miss them like crazy, wish that I was able to turn back the clock.

Fate doesn't really give you any choice, you go on. And on the days when I couldn't stand it for one more minute I would pray that tomorrow would bring some relief from my suffering. Time eventually did, but the emptiness never leaves me.

I doubt I would have survived without my husband who despite his own grief was a rock as well as some wonderful friends and a terrific therapist.

Kristen, I too consider myself a strong woman. To be all consumed because of a child's death or illness is not weak,it is in my opinion what a mother is and does.

I hope with all my heart that your little one's fragile health improves. It is also my hope that your fear is never realized.

At August 24, 2011 at 4:38 PM , Blogger Meredith said...


I don't even have any rational reason for fear -- I haven't already been through the fire as your family has with everything that Alexander has been through, and sometimes the fear is overwhelming, and irrational.

Have you ever read One Thousand Gifts, by Ann Voskamp? She talks about that same fear...

At August 24, 2011 at 4:38 PM , Blogger Kristen said...

I just wanted to take a minute to THANK everyone who offered words of encouragement. I am praying for peace tonight. I think a lot of times - a fear remains a fear when it is a secret. I'm hoping that by airing it out loud, I can push it to the back of my mind. Marsi - I read Heaven is for Real at the beginning of the summer. I loved that book. But, it might have been one of the straws that put me down this path. My faith TELLS me that everything will be better in Heaven, so it shouldn't matter... But I selfishly do not want believe that it should be children. *sigh* So the plan is - blog my worries away. And then there is no taboo on the fear and I can once again go onto Living. Out. Loud.

At August 24, 2011 at 4:42 PM , Blogger Jessica {Team Rasler} said...

I'm sorry that your family is going through this, and sad that the friends you make through the process are not only struggling but reminding you of what could happen (not that you shouldn't make these friends - it's just hard). My nephew was diagnosed with cancer a year ago when he was 2. My sister has these same thoughts and then wonders whether she should think about it or just bury it. She was pregnant at the diagnosis and now has a beautiful baby girl. She says that she knows now that the only reason she would have to go on if she loses her son is so that her daughter still has her mama.

These questions are so impossible and they have shaken my faith to the core. I'm glad you have yours to help and guide you through.

At August 24, 2011 at 5:21 PM , Blogger Heather said...

I hope that you are right that a fear remains a fear when it is a secret, and that by sharing your fear, it will lessen its hold on you. Different people fear different things, and it's almost never rational. Keep blogging your worries away, and I will pray for peace and sleep for you.

At August 24, 2011 at 5:43 PM , Blogger championm2000 said...

I am touched by your post, and I can't offer you any words of wisdom. Having children was my greatest blessing, but it also led to the greatest anxiety of my life--how could I bear it if something happened.

Like you, writing has helped.

Hang in there.

At August 24, 2011 at 8:27 PM , Blogger Hilary said...

Love you!

At August 24, 2011 at 11:07 PM , Blogger Grumpy Grateful Mom said...

I also have such a strong faith that my child would be OK if they were to pass on, but it is still my worst fear. I'll add to your prayer for you to be at peace right now. And saying a prayer for your sweet little guy.

At August 25, 2011 at 6:39 AM , Blogger Leslie said...

I just came over through SITS, and my heart is breaking for you now. While I can't give you any real advice, the only thing I can think to say is that God may allow something so heartwrenching and painful to happen in order to provide for some other good. I don't pretend to know what, or to understand His's just the only thing I can think of. In the m

At August 25, 2011 at 7:11 AM , Blogger The Blonde Duck said...

Stopped in through SITS! Along with fearing I'll be a terrible mother, this is one of my biggest fears.

At August 25, 2011 at 11:05 AM , OpenID pmlevitt said...

It is hard to know what to say, except I think losing one's children is unimaginable and terrifying. Having been through lots of losses of all sorts in recent years, I can understand the fears that come along with worst case scenarios, and you have additional challenges to manage that I cannot imagine. Bless you and I wish the best for your family and peace for your heart.

At August 25, 2011 at 2:26 PM , Blogger Heather H said...

I am so sorry you are having to live with this (very real) fear. I have no idea how these mothers go on...I don't know how I would go on if something happened to my daughter.

For myself, speaking a fear to someone seems to lessen its hold on me, and I hope this helps you too. If not, have you considered counseling to help you deal with your fears and get control of them?

At August 25, 2011 at 4:41 PM , Blogger GingerGirl said...

Every now and then my mind goes there. Every now and then it lingers there a bit longer that I would like. Then I realize that by living in the world of "what if" or "and when" I am not living in the "here and now." I am not living in "the moment" with my child. I am WASTING the time I do have with them. Then I shut down that fear and run and hug them as long as they will let me before they squirm and wander away to play. And, if my heart is especially full, I will bribe them back with the sound of me digging out the mixing bowl and rattling the measuring cups, and I bury my fears for while in cookie dough and laughter, and I join in the creation of a few more memories to warm my heart for when "that day" does finally come. But, I will not waste today.

At August 25, 2011 at 5:54 PM , Blogger Jennie said...

Like Shell said, they go because they have no other choice. I don't know how they do it though, I really don't. That fear is so debilitating, like you said. My heart just goes out to you. I can't imagine living with that fear every day. You are so strong and I admire you so much for what you deal with. Thanks for sharing.

At September 29, 2011 at 2:40 PM , OpenID fromthebungalow said...

I can't even imagine. I've known people who had to bury their children, and it's devastating. I can't imagine living on if I lost a child. The only thing that might keep me here is my other child. Hell, even when that "child" is a 60-year-old cancer patient who is survived by her mother, it's devastating.

I'm thankful every day for my boys' presence in my life, and all of the unique characteristics they bring with them.

At September 29, 2011 at 7:22 PM , Blogger Deb said...

Since my mom died last year, death has been constantly and sometimes oppressively on my mind. At first I thought it was just my mom's death that had me worried, but then I realized it was more than that: the combination of her death and being a parent.

When Li'l D was even littler, I told Ba.D., "If anything happens to him, that is it. I am done." I stopped saying that after a few months, but I'm always a little suspicious of great joy--how long can it last?

A few weeks ago, I went and checked on Li'l D while he slept. I could neither see nor hear nor feel any indications of breath. He was cold, and didn't respond to my touch or my voice. When I threw him over my shoulder, he stirred a little, but I spent the whole night fretting.

I'm trying to focus on the joy I have now, because this moment is all I have. But it's easier some times than others, and always tempered by great sadness at the thought that any parent, anywhere must face that tragedy. I wish I could do more than pray for peace.

I hope you feel a little relief at having posted this. I usually feel better after posting something I'm struggling to post than I did before, although obviously this isn't the kind of thing that just goes away magically by having written about it . . .


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