Don’t feel guilty

I wrote this post yesterday.  I worry about offending someone with this post. I hope with every fiber of my being that these words don’t hurt anyone, and that they are ok. I love the parents I have met along the way whose babies haven’t made it so much- and I don’t ever want to hurt them… I have been reflecting about the difference between being sad and feeling guilty.. and just letting go of the guilt.. but I will always be devastated when a little one loses their fight.

******************

There are 2 paths to becoming a CDH parent. You either know it going in, because at an ultrasound appointment someone notices an “abnormality” and then you spend the remaining weeks of your pregnancy processing this information however you do that. For some parents it includes  researching, praying, reading, crying, writing, blogging, praying, talking, crying, laughing, crying, getting hope from survivor blogs, trying to avoid the angel stories, but then reading them anyway, and praying. That was pretty much a quick summary of my 20 weeks.  For each of us, we prepared differently. There is no wrong or right.. there is just what is right for you.

There is another group that doesn’t find out what CDH until after the baby is born. It takes them by surprise. They went into delivery expecting a healthy baby. Sometimes the CDH is discovered immediately as the baby goes into distress after birth…. or in even rarer cases – it is not discovered until days, week, months later. But most parents with undiscovered CDH discover it close to birth.  They have to process while their baby fights for life. This is another journey.

And then each set of CDH parents end up on one of two paths.  It’s always comes down to life or death. Angel or survivor.

Finley survived. I will be thankful, grateful, and awe struck every day of my life about this. For those of us that have survivors, each baby loss is such a powerful reminder of what could have been. It is easy to feel guilty. To wonder – why did my baby make it, when so many others do not. Survivor guilt. I haven’t met a survivor mama that hasn’t struggled with these thoughts and emotions.

I don’t know the why. None of us does.  I can’t speak for a mother who lost her baby, but I don’t think any of them want the survivor-mamas to go around feeling guilty. We each have our own path, our own journey.  For a birth defect that claims an average of 50% of those effected – I think those that survive – not a single minute should be wasted feeling guilty. That was not your path. Your baby made it. That is a miracle, it is amazing, you should not feel bad rejoicing from the hilltops.  If your baby is a survivor  you are allowed to celebrate that without guilt. I think I have finally come around to believing this.

That doesn’t mean that our hearts don’t break with each loss.

That we don’t sob at our computers, iPads, and smart phones when we read of another baby whose battle is lost all too soon.

But I think it is time to say it outloud – Don’t feel guilty. Say it with me, “I don’t feel GUILTY that my child survived.”

It’s ok to be happy that your child survived, while being sad that others haven’t.

My heart is broken today with the loss of Esther. Her parents have written a beautiful testimony to God during their journey and are such amazing people. Please continue to pray for comfort and peace for them. All day, my thoughts and prayers keep coming back to them. They continue to glorify God on the day and days after their child went to be with Jesus.  I have never met Rhonda and Jason – but I love them so very much.

CDH has brought so many incredible people into our lives. That is one of many blessings for us. I don’t know many of the why’s… but as I have said before.. I know we are blessed to be a blessing.  So I will focus on that.

“To everything there is a season,
a time for every purpose under the sun.
A time to be born and a time to die;
a time to plant and a time to pluck up that which is planted;
a time to kill and a time to heal …
a time to weep and a time to laugh;
a time to mourn and a time to dance …
a time to embrace and a time to refrain from embracing;
a time to lose and a time to seek;
a time to rend and a time to sew;
a time to keep silent and a time to speak;
a time to love and a time to hate;
a time for war and a time for peace.”

 Ecclesiastes 3:1-8
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7 thoughts on “Don’t feel guilty”

  1. Amen! So beautiful and so true! I am blessed to see you cherish your daughter and the life she was given. What a beautiful example.

  2. I was thinking about Esther this morning and you and I was sad. And I was thinking about just this thing you are writing about and I wanted to call you and ask how you are feeling…and I am happy that your wrote this today. Because I am so proud of all you are doing to bring awareness to CDH but I know that with that comes reminders that aren’t happy. But you guys are blessed and should feel happy for that every day. And keep fighting because you make a difference. Love. Love. Love.

  3. Thank you Liz for your message..u open many eyes of hope in this message. Blessings to you and every other family experiencing/ or whom have already endured a baby in distress of any kind

  4. As a family member of a CDH angel, you are right, we don’t want survivors to feel guilty about the path their journey has taken. For the surviving families, please don’t feel feel bad for sharing your stories. They are what gives new families hope. There will be days when we will feel sad, that’s normal after such a big loss, but it’s the survivors & angel stories together that show everyone it’s so worth the fight!

  5. For me, it is sometimes hard to rejoice in my blog posts when I know a family that has just lost a baby is following my blog. I feel like in someway I may be hurting someone or feel I might be perceived as rubbing it in their face that I have a sweet little boy and they don’t have a baby anymore. Is this the guilt you speak of? I completely understand when you say, ” I have never met Rhonda and Jason – but I love them so very much.” The connection and the empathy that comes from following another’s story is so great, that is until the end result is different. Then you know you and the other family have diverged on two different paths and it can be difficult to reconnect. It is easy to encourage someone along when their baby is fighting, but once they pass on, I feel like my words may seem more empty to the other family because I got to take my baby home and what do I really know about loss anyway.

    Thank you putting this topic out there. It is a very strange dichotomy of emotions that is hard to talk about because we are so afraid of offending and hurting one another, but I think most are just good intentioned and just don’t know the right things to do or say at times.

  6. I have survivors guilt still – all the time. For example, when I sign a post of a baby still fighting, I sign it Mom to Dakota, RCDH survivor. However, once the baby dies, I fell like that would be wrong and bring pain, so I sign it CDH mama. Then I feel guilty about that. I agonize over it. But one thing, one of the most important things I have learned from being a CDH mama-is that people who are experiencing loss want you to say something, even if that something isn’t perfect. They want us to remember their babies, which I do, and they want their lives to mean something – they mean so much to me. So I bumble and try like we all do to say the right thing, sometimes, I’m sure, saying the wrong one.

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