Stages.

I learned about the Kubler- Ross Stages of Grief when I was in medical school.

It was always talked about when someone passes and how people cope.

I go through the stages of grief – often circulating them – sometimes out of order – sometimes in order – often hanging out in one stage and not moving to the next one.

I go through them daily.

Weekly.

Hour to hour.

Evan is here.  He’s evidence of a miracle. He’s evidence that sometimes medicine can’t explain it all.  He’s proof that something bigger is in control out there.

But, he’s not the son I thought I’d have.  This is not the life I prayed for.  This is not the world I thought I’d be living in.

So, the stages.  What am I grieving?

I’m grieving for the dreams I had for Evan.

I’m grieving for the normal that is no longer in my grasp.

I’m grieving for my son – who has battled through so much in his life – will have to battle more with craniofacial surgeries on the horizon and more heart surgeries…

Stages:

Denial – I like to live in the make believe.  Pretend Evan is ok.  I could win an Oscar for my performance daily – the one where I am acting like I love this life I’m in.  I consider our daily trips to the hospital our time to bond.  There are some days where I check Evan’s oxygen and it’s in the 97-100 range and I think maybe he’s healed and won’t need another heart surgery.  Some people in our lives- please don’t take this personally loved ones – I think are in this stage.  Often saying,”He’ll be just fine.  Look how good he looks.”  Or, “He’ll just need another heart surgery and he’ll be all fixed up.”  There is NO CURE for congenital heart defects.  NO cure.  It’s unlike cancer, unlike an illness – where there sometimes there is a miracle drug. Friends…sometimes all us heart mamas can rely on are straight.up.miracles.

Anger – I hang in this stage a lot.  A LOT.  I hate congenital heart disease.  I hate that I know everything there is to know about Evan’s sick heart.  I know so much about it – often the attendings in the hospital would have ME explain Evan’s hear to medical students and residents.  I hate that the very first question out of my mouth when we get asked to go somewhere fun, on a playdate, to someone’s house, to a birthday party, for a holiday gathering is, “Has anyone been sick?”  I hate that my daughter thinks that babies eat from feeding pumps.  I hate that when I walk into the hospital I get greeted by someone that knows me…because we are there so often.  I hate that every time Evan runs a fever, falls ill…I get ready to pack my bags for a hospital stay, fear that he’s in heart failure.  I hate that my boy doesn’t know how to eat, how to play, how to do all the things normal babies do that are half his age. I hate that I get angry at people with healthy babies. I hate that Craig tells Evan, “You don’t have to play sports.  We can do other things together.”I hate that my son – my son – has to be the inspiration for people to be better parents, live better lives.  You get it. My list can go on for miles…

Bargaining – oh yes.  I do this a lot, too.  I hold Evan and whisper to him, “If you stay with us forever, I promise you you’ll have a wonderful life.”  I ask God daily, “If you let me keep him, I will do everything I can to make sure his life is a testimony.” I just want Evan here – forever.  I’ll do whatever.  Go wherever.  Search for whomever – to give us our forever.  I’ll give up everything. I just want him to stay.

Depression – I’m here now.  Again – that Oscar for my performance of – “She’s got it all together.  Look at her go!”  I’m sad all the time.  I cry at dinner time when Evan won’t take the bottle like a normal baby.  I cry when I start to get a cold – worried about who’s going to take care of Evan.  I cry when I read about other heart babies and their struggles.  I fall deeper into this stage when I read about another baby dying, another baby on life support.  I’ve cried harder during this recovery than any other time in Evan’s life – because I’m so scared to lose him – when he looks this good, is doing this well.  I’m depressed because Evan is almost 9 months old and can’t roll over, doesn’t push up on his arms, doesn’t take a bottle, doesn’t eat normally.  I’m depressed because when he does try and do those things – rolling over, pushing up on his arms, eating – his breaths become more labored, he needs to take a break from playing because his heart just can’t handle it.  I’m depressed because he’s not normal.  Our lives aren’t normal.  I don’t even know what normal is.  And that depresses me.

Acceptance – I get glimpses of this stage every so often.  I’ve been here – briefly.  This stage is fleeting.  Often comes in waves – I hold my boy – he giggles and laughs – and I am just so happy he is here – sick heart and all.  I look at him and love on his little face and can’t imagine him looking any different than how he does now.  I love watching Iz and him play – so thankful that they have each other – and just count my blessings that I have the two of them.  I stand at the sink while I wash baby bottles and just watch Craig and Evan on the couch – as Craig talks to his little buddy about sports – and am just so thankful that our little guy is here.  So incredibly thankful – that I’m ok with our lives being a new normal – just because I have my family here.  All of them.

Stages.

I’m sure I’ll move to another stage in the next day or so.  Often, I find myself in the “acceptance” stage when I get Evan up from his nap – so joyful as he kicks his feet in excitement to see his mama.

I’ll move in and out of these stages – weaving in and out of them – this now – becoming my normal.

Eventually – I’ll sit and let “acceptance” be the stage that I’ll call home for a while instead of the place of “anger” or the place of “depression” I often find myself in.

Someday – I pray – I’ll get to that stage of acceptance – no longer fleeting – more permanent.

Someday.

 

Comments

  1. Kim Willis says:

    Wow, thank you for sharing!! My HLHS baby will be 4 months old on Sunday. I feel the same way every day! Kaden’s birthday is on the 14th and on the 15th I remember just as well (it is the day we found out about Kaden’s heart defect). I am generally a very positive person, but it is hard when they have so much to overcome and so much uncertainity. I hate other people feel the same, but it makes me feel ok that I do feel this way. I never want someone to think I am ungrateful for any time I get with Kaden. I cherish every second, but always wonder about the what if’s

  2. Katrina Largent says:

    Czarina,
    I know exactly what you mean. My daughter is 17 months old and does not eat by mouth, she does not crawl, sit up by herself etc. I know the struggles with the emotional toll on mama’s. You nailed the feelings on the head. I hate asking anywhere we go if anyone has been sick and if someone wants to come over I have to ask them if they have been sick and if they say yes I have to say that cant see my daughter. It is very tough. I have been sick once since she was home and I wore gloves and mask in my house I know it sounds crazy but its what I had to do to make sure she didn’t get it. I just wanted to let you know that you are not alone in this struggle.

  3. Jessica Makuh says:

    I enjoyed your post. My daughter has HLHS and will soon turn 4. She is doing very well, but despite that, I still run through these stages, sometimes daily. I’ve been stuck in depression since her Fontan in July. I just want to give you hope about feeding. Lauren had an ng tube until 13 months. She refused to drink and ate very little. It took me weeks to get her to eat a cheerio. We worked with her constantly to get her to drink. I did everything I could. I spent hours everyday getting her to eat a tablespoon of cereal. I kept bottles laying around the living room in the hope that one day she would pick it up and feel like drinking. I cried in the bathroom for three years because I was so frustrated and just wanted her to eat like a normal child, but I didn’t want her to know I was frustrated, so I hid. We always tried to stay positive in front of her. We even danced and sang to get her to eat! One day, when she was 13 months old, she picked up one of the bottles, and she drank 5 oz. 5 oz! Then she did it again the next day. And the next. After one week, we removed the ng tube and she never needed it again. We continued to work with her daily to get her to eat and drink enough (it was a lot of work) and today, she mostly eats like a normal kid. I know how hard it is. Just keep hoping and believing and working at it and someday, your hard work should pay off. Good luck.

  4. Beautifully said, as always, Czarina. You and Sarah and other Heart Moms make your babies’ lives love-filled, laughter-filled, hope-filled … And yet I know that comes at a tremendous cost to you Moms! So continue to speak the truth so that others will understand a little more of what you endure as moms to Heart Babies.

    They don’t know of the lost hopes, the fear to wish for a future, the haunted feeling of “what comes next?” Others have no idea of the tears cried in solitude if they only see your brave face, so don’t be afraid to let others see as much as you are willing to share. In this way, through “honest confession,” you give us ways to “bear one another’s burdens” and to walk a part of the journey with you…you help us to see the truth in “Life is…today, and I don’t have the strength to look farther down the road for fear of what I will see.”

    Thanks for opening your heart, for otherwise, most people really have no idea of your great cycles of grief. For example, within the past month, one of my “friends” asked me when my only grandchild, an HLHS heart baby, would be “all well,” while another told me she disagreed with intervention to save my grand baby and that doctors should let Nature take its course…can you believe such comments? That is why honest blogs are essential: they raise public awareness of CHDs, and they give a face to all the Lil Heart Warriors…and to their parents.

    THANK YOU. MAY GOD WALK EVER WITH YOU ON THIS UNMAPPED JOURNEY! And from time to time when you feel another’s hand in yours, you’ll know it’s one of us, here to walk a part of the journey with you. <3