I would like to start this by saying I hate this post. It has been swimming in my head for weeks and I have done everything in my power not to write it. Now, however, it is all that is left. It is not the type of thing that I normally write. I have only written one other post that felt like this, and I hated that one too. I needed to write the other one for my own healing, but I’m not sure why I needed to write this one. Hopefully someone out there finds meaning in it.
To all of the parents whose children were diagnosed just before or just after birth,
Feel free to mourn. When you found out you were pregnant you made plans. You had expectations. You pictured a life with a child. A child you had imagined to be a certain way, meeting certain milestones at certain times and now, thanks to Down syndrome, or cerebral palsy, or spina bifida, or any number of other things that I can’t even imagine, the baby you had pictured is now gone. A new baby, one you had never even imagined, has been left in it’s place. This new baby may not feel like yours. It may be hard to even look at this new baby. Don’t worry, this is normal. It is also temporary.
You have to take the time to grieve.
The child you imagined is gone. This is a loss you will carry with you. You need to cry for that child. You need to say goodbye. You need to mourn. People will tell you that you need to be strong. They will say that this new baby needs you even more. They will expect you to fall in love with the new baby. That will happen. In time. After you mourn.
So feel free to have a funeral, to write a goodbye letter, to blow bubbles into the air, to do whatever you need to do to let go, before turning to this new child and saying “Hello, little child with the new name, new face, new abilities, and new, amazing destiny!”
To all of the parents whose child was diagnosed later,
Feel free to get angry. It is not fair. Your world was just flipped upside down and, through no fault of your own, will never be the same. It’s not fair that you were not prepared for this. It’s not fair that your child has to walk a different path. It’s not fair that you are now expected to work harder. It’s not fair that you now have to advocate for your child, and it’s especially not fair that you have to see other parents, parents with seemingly perfect children, drift through life easily, complaining about things that you can only wish were normal.
Whether it is something as clear cut as a food allergy, as vapor as autism, or as overwhelming as muscular dystrophy you have the right to be angry. You can no longer expect that your child will adjust to your world and you must now enter theirs. A world where you must constantly adjust your own routine. A world where you must fight doctors to make them see your child as a person and not a case. A lonely world where friends and family simply do not have a clue. A world that you don’t want to live in, but your child cannot leave.
So feel free to scream and yell and cry. Feel free to get angry at those of us who could never understand. Feel free to curse the diagnosis, to hate the doctor who gave it, and to be disgusted by those of us who will never have to live through it, before turning to your child and saying “It’s going to be okay. I’ve got this for you. You are exactly the same beautiful, amazing, wonderful person you were yesterday. We just now know that there are tools to make things even better.”
To all of the parents whose child’s diagnosis is terminal,
Feel free to take everything you need. No parent should have to lose a child. No parent should have to plan a child’s funeral. You are living all of our greatest fear and your terror is ours. We want so much to bring some light into your darkness, but know that nothing could come close to the light your child is. Ask for anything. Ask for 24 hour companionship or ask to be left alone. Ask for everything to be delivered to your home, or ask us to take you away. Ask for everything we have, or ask for things no one could ever give.
The pain you are feeling is the deepest possible. Whether your child was still in the womb, or a senior citizen, you do not deserve to walk through their death. You do not deserve to feel this pain. You do not deserve this emptiness. You do not deserve this unanswered desperation. What you deserve is to enjoy this child for the rest of your life. You deserve to hear their laughter. You deserve to wipe their tears. You deserve to have them care for you in your old age.
So take whatever you need to help you get through this unimaginable pain. Don’t worry if it seems normal; there is no normal for this situation. Don’t worry if it’s appropriate; there is no appropriate for this situation. Don’t worry if it makes sense; there is no sense in this situation. Take what you need so that you can turn to your child and say “Your life has meaning and I will carry you in my heart, if not in my arms, forever.”