I wrote this last year for other grieving parents. Sometimes I still need it myself.
Dear Grieving Parent,
Dear Grieving Parent,
It is not because you were not worthy of your cherub - you were and are. You are so worthy that you have been entrusted to carry on your life's goals and theirs as well. You are so worthy that your cherub chose you to be his or her mommy and daddy during their short time here. You are so worthy that you were blessed enough to be the parent of a living angel... a child placed on earth to touch the hearts and lives of so many people. So much love and so many lessons put into such a short time. Not everyone can comprehend that great blessing and that great responsibility - but you were chosen.
It is not because of your faith or doubts. It is not because you didn't pray hard enough or because not enough people prayed for your cherub. There are cherubs who have had 1000's of people around the world praying for them... and they did not survive. We have had cherubs whose parents do not believe in religion and they have survived. Your prayers for a miracle were not refused. You have received miracles too... even though they may not be the one you wanted most. Prayers can sustain us through whatever CDH throws as us, helping us to make the right decisions, bringing us peace no matter the outcome.... and they can lift us up and carry us through grief.
It is not because you made a bad medical decision or did not fight hard enough for your child. Your cherub had a whole medical team fighting for them along side of you. You made all the best decisions that you could for your cherub. You were and are the best parent to your cherub that you can be. There are 1000's of healthy children who do not have parents who would fight for them.... your cherub was blessed to have you as parents just as you are to have had the opportunity to be a parent to your cherub. If CDH has taught us anything it is that it plays by no rules. Children with no diaphragm and little lung can survive while children with 2 full lungs might not. It has taught us that lung function is not the deciding factor. It has taught us that sometimes the best care in the world is not enough.
It is not because you couldn't offer your cherub the support or resources needed for a special needs child. It is not because you lack patience or skills. We have grieving members who are doctors, nurses... we have parents of survivors who were teenagers themselves. We have grieving members who are amazing, amazing parents and we have parents of survivors who have lost custody of their cherubs. We also have many, many parents of survivors who are amazing and prepared and ready to be wonderful parents to their cherubs. CDH does not care who is ready, who is able, who is best qualified to care for a cherub and who is not.
It is not because you didn't love your cherub enough. If love could spare babies from CDH, this horrible birth defect would not claim one more life. CDH shows no favoritism. It shows no prejudice. It truly is the luck of the draw who survives and who does not. It does not mean you are better or worse than anyone else. It is not fair. Your cherub did not chose to leave you. But they did chose to spend their time here with you. They did not choose wings over feet. They did not chose Heaven over staying here with you.
There is no good answer to why your cherub did not survive... but there are hundreds of answers as to why he or she should have. At CHERUBS, we all know the pain of CDH. The pain and grief of having a child born with a severe birth defect... some grieve over the loss of a healthy child as they struggle to deal with CDH in their surviving cherub and the loss of a dream. Some grieve a never-ending grief of losing the dream and the life of their cherub. But we all grieve, we all have questions that we may never get answers to.
We have all lost a lot. So many parents are grieving the losses of their babies right now. The CDH community has lost so many babies that we have all prayed for, loved from afar. But we have gained a lot too. So have the family members, friends, and even strangers. Each cherub has left their mark on this world and left it a little better than they found it. That is more than most people do in lifetimes that last decades. We should all should follow such beautiful examples as these children have left for us....