No parent wants to imagine their child dying. It doesn’t matter if you had some warning about your child’s death; it is still devastating. No one can completely prepare you for all of the different emotions you might have. How could they? Losing a child is simply unimaginable.
Although it might seem like a superhuman task, you can—as much as you are able—try to prepare for some of the decisions you’ll need to make during the final part of your child’s life.
This page has information and advice from other parents and family members who have lost a child with a disability or special health care needs. They want you to know that you’re not alone. They have faced the pain and agony of losing a child and have things they want to share with you, in the hopes of making your journey easier. We also have tips from EMS (Emergency Medical Service) medics who offer their advice and compassion.
Grief is a process everyone goes through after losing someone important. Saying it’s a process means that it brings up many different feelings and takes time to go through them all. There are stages of grief that usually include: denial (not believing something is really happening); anger; guilt; sadness or depression; and then eventually accepting what has happened. You might go through these feelings in a different order, not feel all of them, or even feel more than one at once. You might also feel overwhelmed, scared or anxious, confused, relieved, and more.
It’s normal to have many emotions if your child has passed away or you think that they might soon. Be kind and patient with yourself. Know that all of your emotions are important to have and that it’s OK to feel them all as you slowly begin to heal.
To find counselors or groups that fit your needs, you can ask other parents, a hospital social worker, or a case manager—or you can search online. If possible, find a support group or counselor that focuses on parents of children with disabilities or special health care needs. Support groups for any parent who’s lost a child may not feel right for you. Trust your gut when picking a group or a counselor to be sure those connections feel helpful.
Remember that your partner or other friends and family might have different feelings than you. They may show their grief differently. Losing a child may bring the parents closer or put a strain on their relationship. That’s natural. Everyone has a different journey. You might find it helpful to go to counseling together with your partner as part of the grief process.
Siblings also need special support when losing a brother or sister. They need to know what’s happening and have a place to talk about their feelings or let them out in a way that fits their age. And they need that support before their sibling dies, if possible; it’s helpful when their sibling is in and out of the hospital or at home dealing with medical issues. There are some counselors who work with children who are dealing with grief. There are also support groups in some communities just for children who have lost a loved one.
Many children act differently when they go through a big change or loss—e.g., having trouble in school, having behavior issues, not wanting to spend time with friends, or not wanting to do other things they would normally do. These are signs that they need extra support. You might see signs like these for a short time or for a longer time. If you are concerned, think about getting mental health help for your child.
Our page on Finding Mental Health Resources for Children has ideas on where to start. You can also ask other parents, a hospital social worker, or a hospice worker for programs and places to look.
There are so many decisions to make when your child is very sick or you think they might be near death. Things like how and where they will spend their last moments, who will (or won’t) be there, whom you will tell and when, and the type of final arrangements they will have (like a funeral service, if they will be buried or cremated, and more). These are incredibly difficult things to plan. You might not be ready to make all of the decisions yet, and that’s fine. But if you’re able to think about some of it, you could save yourself stress and make things less costly in the future. Other parents have said that planning ahead gave them some peace of mind at the end of their child’s life and more time to focus on being together.
This is a time when your main concern should be your child and your family. Try to ask for what you want and need. Help your child to do the same, if they are able. That might mean asking certain family and friends to come visit or asking others to stay away until you’re ready. It might mean saying “yes” to certain types of help and “no thanks” to other offers. This is your time with your child. Don’t worry about other people.
One thing to think about if you know your child is near death is getting hospice care in the final weeks or days of their life. Hospice is a program set up to take care of everything your child and family might need right before and during death, usually from your own home. That includes your child’s medications, equipment, pain management, and other care. Hospice also offers support for your family – as much as you want – like connections to counselors, faith-based support, financial resources, legal tools, help understanding the process of dying, and help making end-of-life decisions. Hospice care can make a very hard time much more peaceful and less confusing.
Some people think that putting a child on hospice care means that you are giving up on their life. But the parents we’ve talked to say that hospice was an incredible support and blessing for them at a time when they really needed it. As one parent said, “It’s a way to end a life with dignity and respect.” Another said, “My advice would be to tell parents to get on hospice as soon as possible. I can’t promote it enough.”
Hospice is a way that your child can die peacefully. It gives parents time to say goodbye to their child on their terms without the sirens, police, or EMS. A hospice worker is there to handle making phone calls and other next steps. Without hospice, families can face additional stress. These are discussed more in the Legal Rules section below.
To find a hospice program in your area, you can ask at the hospital or look on the [Texas and New Mexico Hospice Organization website.
Another thing to think about is if you want to put any advance directives in place. Those are plans in writing that explain what you (or your child) want to have happen in an end-of-life situation. A living will is a letter explaining these plans and decisions. A Do-Not-Resuscitate (DNR) order means that you decide that you do not want medical professionals (like EMS medics, doctors, or nurses) to use certain lifesaving measures if your child has a medical emergency. You write out exactly what you do or do not want done.
There are 2 different types of DNRs. You can create one to use while your child is in the hospital. It’s important to create a new, different type of DNR for when your child is at home. That is called an Out-of-Hospital DNR order. You can also order a special bracelet or necklace that shows your child has an Out-of-Hospital DNR called an OOH DNR ID device. Emergency responders like EMS can only follow Out-of-Hospital DNRs. If you only have a hospital DNR, they usually have to call your child’s doctor before they can stop trying to save your child’s life.
The Texas Department of State Health Services’ Out-of-Hospital Do-Not-Resuscitate program page has everything you need to know about these DNRs, a form you can use to create one, and how to order an OOH DNR ID device. Texas Health and Human Services has a page on advance directives, including living wills.
It’s important to know that you can change a living will or tear up a DNR at any time if you change your mind or your child starts doing better.
If your child has a medical emergency at home and it leads to their death, there are things you should know about the legal rules that emergency responders like EMS and police need to follow.
First of all, when you call 9-1-1, it’s important to try to talk as calmly and clearly as possible about what’s happening and what you need. EMS medics must try to save the life of any person having a medical emergency unless they are given paperwork like an Out-of-Hospital DNR order or see an OOH DNR ID device. So, the sooner you can say that you have this type of DNR and show proof, the better. They want to respect your plans and wishes for your child as much as you do.
It is best to have the original signed and notarized copy of any important paperwork, like a DNR or medical power of attorney, as well as the phone number for your child’s main doctor and information about your child’s medical history. These are some of the legal tools you might think about putting in place to support your child. They can all go into your care notebook so that they’re easy to find when you need them.
If you know that your child could die soon or have a life-threatening emergency unexpectedly, it’s a good idea to ask their doctor for a fast way to reach them. You might need them to talk to EMS or the police. You might also be interested in asking the doctor to explain the process of dying to you, so you can be more prepared for what it looks like.
Even if you do have an Out-of-Hospital DNR or other advance directive paperwork, an EMS medic might decide that they will not follow it if they see signs of trauma or abuse to the person having an emergency. If you only have a hospital DNR, the medics will need to talk to your child’s doctor before they can stop trying to save their life.
When any person dies outside of the hospital and does not have hospice, the police need to look into the situation as if it might be a crime scene. This is something they have to do. The police will probably ask you questions, maybe ask to talk to your child’s main doctor, and maybe want an autopsy (i.e., a medical exam after death) for your child. Once the police are done, they will send your child to the medical examiner’s office or to a funeral home you have requested.
With all of these people around asking questions, it can be confusing, stressful, and hard to watch. The best thing you can do is try to stay calm, speak clearly, and have a plan or list of people you can call for support.
You can also ask the police or EMS for a victim services worker who can come and explain things to you and help you find support. That person is trained in helping people who are in crisis or emergency situations figure out how to understand what’s going on and decide what to do next. They also can connect you to community resources and programs you might need.
In the moments, days, weeks, months, and years after your child’s death, keep taking care of yourself and getting support as you and your family need it. You might find that sometimes you want to be around other people. And other times you need space or time alone. Feelings may come up by surprise; something might trigger (set off) old emotions. Know that you did your best to love, support, and take care of your child. You made their life as full as you could, even if it was short. After spending so much time focused on your child’s care, it can be hard to let go of all of that. But you can learn to live in a new way and eventually move forward.