My daughter was only a delicate six-day-old baby when the pediatrician’s office called and asked my husband and me to come to the office at 6 o’clock on a Friday night. He told us, frankly, that she had cystic fibrosis and followed it up with a “but people with CF are living into their 30s now”, as if those words could comfort us. At the time, I didn’t know what CF was, let alone that half of those who have it don’t live to be 37. Almost immediately, the normal baby blues turned into a deep depression. And for the next few weeks, every time I looked at this celebrated new life, the words cystic fibrosis were there as if tattooed across her forehead. I wondered how my husband or I would ever move beyond those initial feelings of guilt, anger, sadness, and fear. The truth was that we probably would always carry those feelings, but with time, we were able to put them aside and start living the most “normal” life possible.
Can’t Fight the Feelings
Those first emotions that explode within you when your child is diagnosed with a life-altering or life-threatening condition are perfectly normal and acceptable. They can exist together in the same moment or they can move through you with a swift rhythm. Either way those feelings are valid and should be accepted and faced.
* Mourn the child and the life you thought you would have. You are letting go one dream and starting a new chapter. Grief is necessary step to acceptance.
* Get angry at whomever you want to be angry with: God, the doctors, yourself, families with “normal” children. Feeling like you need to blame someone is normal. It gives you an outlet, something real that you can be angry with and yell at in place of your child’s condition, the real source of your anger.
* If you feel afraid, be afraid. This is your child’s life that you are fighting for. We all want the best for our children. We all want them to have friends, to do well in school, to get married, to have a great career and to grow into amazing, kind, compassionate, successful adults. The fears of your child dealing with chronic illness, physical and emotional pain, struggles at school and difficulties with other children are real fears. These problems may and probably will arise.
* Guilt is one emotion most people won’t understand. In reality, you didn’t cause your child’s condition, but the feeling that you are this child’s parent and this child is going to suffer in some way, plants that seed of guilt in your mind, and it is okay. I didn’t cause my daughter’s CF, but I did give it to her, after all it is genetic, and knowing that was enough for me to feel at fault.
Moving Forward
These feelings will unfortunately, live under the surface for a while, maybe for good. The trick is to simply accept their existence, however difficult that is for you and however long that takes you. The one thing that didn’t change between giving birth to your child and getting the diagnosis is that you love your child. And the act of loving your child will carry you through difficult moments and stressful times. No matter what, remember that your child is a gift and a blessing. Your child will learn from you and grow because of you.
You will come to a point where your life is okay. You will live in your “new normal” and you will be happy again. You will focus on the here and now rather than the what-ifs. Nevertheless, when those awful first feelings creep back into the forefront of your mind, you will know how to handle them. You will be a better parent because of this, and a better human being. Your child can only benefit from that.