Whether you have a special needs child or not, whether you just got a diagnosis or are still waiting, whether your child is a newborn or an adult; we have all heard of the 7 stages of grief. While I tried to think of words to describe what it is like to have a medically complex child those 7 stages seem to fit perfectly.
Stage 1- Shock and Denial- We got our diagnosis when we were still pregnant with our son. Every ultrasound we had brought hope and fear. We kept hoping that things would look better, but the pictures didn’t lie. Our baby was going to have lots of issues (if he even lived) and we were in shock. After he was born I remember sitting in a friends living room saying “For now, he is just like a typical 3 month old, right? None of them have a lot of head control or move around much.” They agreed but in hind sight, they were just being nice; and I was in denial.
Stage 2- Pain and Guilt- Guilt builds up when you have to leave your child in the hospital. Your arms ache to hold them and feel their weight. You feel like you are a horrible person when your child gets sick and you may even feel like it is your fault. Going back into the hospital for the hundredth time makes your heart sink deeper and deeper.
Stage 3- Anger and Bargaining- Oh the anger…So much anger. You ask questions like “Why me?” or “Why this child?” “What did we do to deserve this life?” Then you start to say things like “If you just make them better I will…” or “Maybe if I did ____ then my child wouldn’t have to go through this.” I hope this stage is short for you. I wish I could tell you that once you get through this stage you will never go through it again, but I can’t. I have gone through this stage many times.
Stage 4- Reflection and Loneliness- Life with a special needs child can be very lonely. You spend your days in a hospital or at home because your child has a weak immune system or it may be just too much work to go to the store with them. Maybe you are the sole caregiver and are forced to stay home to care for your child. People are busy and can’t make time to stop in for a visit. You may spend most of your days with your child who can’t talk or walk or communicate with you in any way but needs lots of care. This gives you lots of time to think about your situation and life. Some of your thoughts may be hateful and depressing, but they may also be warm and loving. Try to stay in the positive mind frame. Just try. That is all you can do.
Stage 5- Upward turn- This is a great stage! This is where you find a little glimmer of brightness! You may not have it all figured out but you know you will get to a better place. You know that you are doing the best you can with what you have right now. You know that if your child ends up back in the hospital that it is not your fault. You know that things may not be great or how you planned, but you will be ok. Your child will be ok too!
Stage 6- Reconstruction and working through- This is the part where you come up with a plan. It feels good to make plans for your life again, instead of being stuck in time. This is the part where you build a ramp into your home, or rearrange your house so your child (and their equipment) can have room. This is where you are determined to get out of the house and hospital, no matter what!
Stage 7- Acceptance and Hope- I hope every one of you get to this stage. I hope you learn to accept life for what it is and realize that it is not really that bad. Sure you have to get creative and have a life that is not what you had dreamed of, but there are others like you that struggle too, and you will find hope and strength in them.
Each stage is a celebration. Each new thing that your child does is cause for celebration! You will get though every stage… more than once. You will find hope and love in this world, you just have to know where to look.
7 stages of grief also!