Tuesday, May 11, 2010

Sometimes I wonder if I'm crazy.....

With my emotional ups and downs lately, I've begun wonder if I'm crazy. One moment I'm perfectly fine, accepting that HLHS is now our new normal and accepting that our lives are forever changed. Then in the next moment, I'm mourning all of the things that will never be the same again. I haven't cried in 10 days,  but last night I lost it while looking through all of the baby clothes that I bought for Joshua before our diagnosis.

I have great days of acceptance, and then I have dark days where I feel like I'm drowning in sorrow and grief.

I can only blame pregnancy hormones so much. My emotions are so much more than just the hormones. After talking with an old boss/friend of mine, she helped me realize that I am grieving. I'm grieving the loss of what "should have been." I'm grieving the loss of being able to bring our perfect new baby home to join our family. I'm grieving the loss of not working once Joshua is here. I'm grieving the loss of what our life used to be- free of HLHS, free of worry and anxiety about the future, full of celebrating the fact that I'm still carrying a healthy and strong baby.

In trying to figure out if I am truly grieving, I found a website that talks about the stages of grief and gives a definition of grief. It fits perfectly.

Here is a list of the "stages" of grief. I've experienced each one of them, even if just for short periods of time.

Denial: “This can’t be happening to me.”
~This happened immediately. In the doctor's office, on the way home from Indy, that night before bed, the next morning in the shower. I still experience this daily as I feel Joshua kick and roll around in my belly- seemingly normal and healthy.

Anger: “Why is this happening? Who is to blame?”
~My biggest question has been, "Why did God choose us? Why Joshua? Why our family?" What did I do wrong? Is it because I didn't take my prenatals like I should have? Were the fumes from the fire in the kitchen a factor? Who's genes did this come from? Is it because I laid primarily on my right side instead of my left side when I was on bedrest? Why the hemorrhage AND the heart defect?

Bargaining: “Make this not happen, and in return I will ____.”
~This one has been a tough one and probably the one that I have experienced the least. Although, I have told God that if He decides to bring complete healing in the form of a completely healthy heart, that it would be a HUGE testamony to God's divine healing powers. It's almost as though I'm trying to manipulate God's will to include completely healing to show other's how truly powerful He is- as if He didn't already know that....

Depression: “I’m too sad to do anything.”
~ I have experienced this one more than I would like to admit. The morning after our initial diagnosis, I took a shower and sobbed gut wrenching, hysterical sobs while my children were in the next room asking their daddy what was wrong with mommy. I have cried more tears that I ever thought possible. If it weren't for Caleb and Hannah, some mornings I don't think I would have ever even gotten out of bed. I cry when I see newborns, or when expecting mothers come into my store to buy baby clothes. I cry when I look at my growing belly in the mirror. I cry reading other mother's stories of their children going through the heart surgeries that mine will have to face. I cry thinking about the life that Joshua will miss out on. This is the hardest stage for me.

Acceptance: “I’m at peace with what happened.”
~This is a hard one for me too. I do feel deep down inside that I am ok with everything. I feel like God is working and I have peace. But at the same time, I often times feel myself putting on a front in order to be "brave." People ask me how I'm doing and I say "ok" because if I say much more, I'm afraid I'm going to lose it. Somedays I do truly feel ok, but those days are few and far between. People ask how I've been so strong, and my response is that I've not been. They don't see inside my heart and head. I'm strong because I don't have any other choice. But not having a choice doesn't make it any easier.

This definition of grief, defined by Hospice Foundation of America, perfectly describes how I am experiencing my grief.
"It is best not to think of grief as a series of stages. Rather, we might think of the grieving process as a roller coaster, full of ups and downs, highs and lows. Like many roller coasters, the ride tends to be rougher in the beginning, the lows may be deeper and longer. The difficult periods should become less intense and shorter as time goes by, but it takes time to work through a loss. Even years after a loss, especially at special events such as a family wedding or the birth of a child, we may still experience a strong sense of grief."

Even though my loss has not been a physcial loss, a death, I do feel like I am truly experiencing grief. This blog has been a great way for me to work through some of my loss. Sometimes I feel like I can express myself better in writing than I can in words. Writing brings on less tears than talking does.

Thank you friends for listening, reading, and offering words of comfort. Thank you for helping us through these times. Thank you for letting me "process" how I need to process without questioning my motives. Thank you for loving our family and supporting us through this.

If you are interested in reading more about grief and the grieving process, check out this website. It has great information on grieving and how to help someone through the grieving process.


Anonymous said...

I found out about my baby girl having HLHS at 23 weeks and 4 days. She is 2 1/2 years old now and we are looking at having her Fontan this summer/fall. Reading your thoughts on grieving brought it all back to me...I share so many of your same problems and feelings. I still grieve. You don't know the world you are about to enter. I didn't have a clue although I tried to research and meet as many other heart kids as I could. HLHS has consumed me and our family. I hate HLHS. I find myself jealous of the HLHS kids that are doing great and are "normal" but most HLHS kids are struggling just like mine. Most have g-tubes, most have lung disease from ventilator use, most are in and out of the hospital multiple times and most haven't made it. I'm sorry if this all sounds negative but I feel doctors tend to sugar coat things to put it nicely. I asked our surgeon during our consult when I was pregnant if he would tell us when enough was enough and he said he would not torture her. It was a big fat lie. Doctors do not quit until the body is in complete organ systems failure. You are not morbid for thinking about all the what ifs. Please consider contacting Now I Lay Me Down To Sleep. It's an organization of photographers that donate their time and resources to parents of babies like ours. We did and they are the most treasured images I have of our girl.

Alyssa Canada said...

Thinking of you Jill...

Leah said...

Jill. Miss you guys so much, even though we are only a few blocks apart. Prayers are said for you all daily. Love you!
Love you posts, so raw, so geniune, so necessary. Glad you are able and willing to share it all glad it helps you process.

Tina & Skyler. said...

I wanted to let you know that my 13 month old son has HLHS. I found out the day AFTER he was born. Yeahh. No one had any idea until after he was already here, which I think made it harder. Skyler was sent to Children s Hospital of Michigan when he was 1 day old, only a few hours after I found out about his HLHS. He had his first surgery 10 days later; He came home 6 days after that to make a speedy recovery. He went in for his second surgery at 51/2 months; He was there for 13 days. He got addicted to the sedation medication and was having withdrawals. They finally got him weened and he got to come home. He ended up back in, however, because he got sick and became dehydrated (Something that can happen to anyone.). He went back in to Children's in January for a routine heart catheter and they noticed that his left lung artery is closed, so they decided he needed yet another surgery. Skyler actually goes in tomorow for his 3rd (unplanned)open heart surgery. His doctors say that he is one of the BIGGEST cardiac babies they have EVER seen. Its not impossible for you to have a healthy baby. My little man is completely healty other than his HLHS. Dont let anyone make you think different...

Id be lying to you if I said that I didnt wish I could take his place everyday.
Id by lying if I told you that I fear every minute of everyday that his HLHS could take him away from me.
But, Ive learned to cope with these fears and to enjoy each day as it comes with him.

kirsten michelle said...

Yep, yep, yep. This all sounds familiar. Though you have the stages down, I've written about this too: the ups and the downs, the disbelief and anger and denial and acceptance and all of it. It's such a messy and unpredictable ride. And I totally get the whole thing about it not being strictly hormonal. No doubt those fuel the fire, but the fire would be there even without the hormones exacerbating it.

The day after the initial diagnosis, we went to Target where in the space of about 5 minutes I saw 5 or 6 happy little baby boys. I couldn't handle it. I ran out of there weeping.

It's nice to find someone else who is as open as you are about her grieving process, about letting go of what you had planned and hoped for. I resonate with pretty much everything that you said: I've never cried so hard or so much in my life; I'm reaching down into myself for tears in places so deep, I didn't know they were there.

Yep, I resonate with it all.

Here are a couple pieces I wrote on my blog (before Team Ewan came to be!!) about my own process:

so much to say

Heart hugs to you, sister!! With God's help, we can do this.

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