Friday, September 23, 2011


Fear: a distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined; the feeling or condition of being afraid. Synonyms: foreboding, apprehension, consternation, dismay, dread, terror, fright, panic, horror, trepidation, qualm. Antonyms: courage, security, calm, intrepidity.

What are you really, truly afraid of?  I'm not talking spiders, roller coasters, etc.  Fear, deep down inside fear.

I have to be honest, I am just going to put it out there and this will be some ramblings of my thoughts.  You may think I have jumped over to the crazy/paranoid train...sometimes I feel like I may.  This fear, it is a new fear.  It may have always really been there and I have not acknowledged it but I feel it now.

I am terrified of losing Brayden.  Like, I feel it.

Developmentally Brayden has been improving, medically not so much. As he gets older, we seem to be discovering more "problems". His first year of life, he seemed to only deal with very mild seizures (and of course severe developmental delay). Now...well it would just take to me long to explain all that we manage on a daily basis.

Over the years we have seen him in the hospital more times than I can remember.  Thousands of seizures, some that seemed like he may never come out of no matter how much medicine they were giving him.  Yes, I was scared in the moment but never truly fearful.

Until this past spring when Brayden had 3 back-to-back hospital stays.  One of the hospital stays was the hardest ever.  After no food, no feeding tube, several procedures and being intubated twice in just a matter of a few days, he went into respiratory distress.  The real first time it has happened to him.  Yes, he does have some problems with his oxygen sat. when dealing with seizures but nothing to this level.

This was the first and ONLY time Jeremy has called me late in the night to tell me I needed to get back to the hospital IMMEDIATELY.

As most of you know, Jeremy does the nights at the hospital and I handle the days.  Out of the countless hospital stays and ER visits, we have NEVER called each other saying (with fear) you need to get back to the hospital immediately.

I can feel the adrenaline rush just sitting here typing about that phone call.

I do not think we were in real danger of losing Brayden at that moment.  Even though things were serious and he was in the ICU, he was still breathing on a bipap machine and not intubated because he absolutely could not breath, he was breathing some on his own just not enough.  But I have never seen his body work so hard just to be functioning.  Seeing a machine force air into your child's body, watching his chest violently puff up and down...definitely rattled me.

What I have realized is in the that moment a little ugly seed was much longer can Brayden live like this?  I know Brayden is medically fragile.  If we were living in a 3rd world country or just did not have access to proper medical care, Brayden would not have lived long.  I realized that Brayden's body goes through so much just to be functioning whether in the hospital or at home.

I have met many families that have walked similar paths and have lost their children.  I can barely stand to hear about it, it feels too close.

It doesn't help that we have had doctors start discussions with us about "quality of life"...what this translates to me is that there is not much we can do, we just manage what we can to keep him comfortable.  Then doctors surprised that he is going to school or that he even lifts his arms.  We had one doctor say "Wow, look at that!  He brought is hand up to his face!"  I am thinking, umm did you not think he could be able to do that?

The doctors have ordered tests looking for a syndrome/all encompassing diagnosis.  And I would read up about what they were testing for and always listed in the descriptions is life expectancy.  In black and white, many saying that the child does not live past "early ages or childhood".  While Brayden has never fully fit into just one diagnosis, he certainly seems in some categories one way or another.  And we had certainly had the hospital chaplains (not from our church, the ones from the hospital chapel) come in to check on us.  I know they mean well, but having chaplain come in to talk...well I have seen too many movies.

Pretty much since the day we brought Brayden home from the hospital as a newborn, I take a deep breathe and whisper a prayer before walking into his room in the morning.  I have always been worried about what I would find, never knowing what was on the other side of the door.  It would be simple things like:  Please no messy diaper since he doesn't cry to let us know and he may have been laying in it all night.  Or how much vomit this morning, please no bloody vomit, skin burning from the vomit.  Please no terrible seizure...

But those have just been worries/concerns.  This new fear is bigger, may be coming to grips with what Brayden's life is/is not.  My thoughts about this are all over the place.  Is God preparing my heart for the inevitable?  Brayden's body goes through so much to be here on earth with us, do I want to imagine him free of it all and sitting with Jesus in heaven?  Am I really trusting God to know what is best for Brayden?  If I ask HIM, do I really want to know the answer?  Is my fear really about control?

Frankly, I just do not know what to do about this fear.

This week I was reading a book discussing the Holy Spirit, specifically about Elisha.  I felt like these words were in flashing neon letters, "[His] response to their situation was not fear, but confience in God....  Fear turns into courage."

I need courage.


the deKorne family said...

This made me cry. I can't even for one second imagine all the emotions you go thru on a daily basis...praying for you...and courage and especially for that precious boy.

Searching for Grace said...

Wow! You are so brave to bare your heart with us. I understand what you are going through. Every morning I am scared to get Matthew out of bed. There are moments in the day when I think about horrible things. And then, I remember how truly blessed I am that God allowed me to be Matthew's mother. You are an inspiration! Sending prayers your way :)

The VW's said...

I can't imagine losing a child to death....and unfortunately, with a child like Brayden and Gavin, the fear of death is always lurking. I can't imagine not having my sidekick with me all the fact, the other day I was away from him for about 3 hours and I started feeling so alone, because I'm so used to always having him with me! This made me start to think about the unthinkable. I hate having this fear!

I am so sorry that you have this fear as well! I am so sorry that Brayden has to go through so much in this life! I can't understand the purpose of it all....but I do know that there is a great purpose! I pray that God will give you peace, strength....and courage! Love, Hugs and Prayers!!!

Michelle said...

My heart aches for you and I pray for the courage you need, and obviously the strength to let God have the control, but that is not easy as we are humans full of flesh bones, concern, worry, love, excitement...all of it, it's what makes us able to care for those we love. Praying for you for comfort most of all.

Courtney said...

i will pray for courage for you. especially at night when you are alone with your thoughts (that is the hardest time for me) and in the morning first thing - when you get him.

brayden is SO blessed to have such a strong, brave, loving, seeking mommy.

Anonymous said...

Honest my friend. Take it one day at a time and I love that your heart is open to the whisperings of His Spirit. I'll pray you have peace in this area.

Shannon said...

This post was beautiful. So honest. Our stories are different, but I know exactly what you are speaking about. I love you, Carrie. I will continue to pray for you and your family.

Anonymous said...

always here with you, harveys mum, anne xxxxxxxxx

Anonymous said...

I know you posted this months ago but I had to write and tell you that my heart is with you right now as I read your words. I, too, am battling fear right now as my Dad has advanced cancer. Fear from losing my brother-in-law suddenly in May and still worried about my husband on blood thinner each day.
You are a strong, strong woman and I think you are an angel.

I think of you and Jeremy and your beautiful boys often.

Miss you, Julie (Schultz) Grecian