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.”