Take Time to Grieve and Express Your Emotions.
The emotions that you will face are multifaceted: perhaps you will feel sadness, for the loss of the life you had envisioned for the child, for yourself and for your family. Perhaps you feel angry, full of resentment that this terrible incident had to happen to your child. Or perhaps you feel jealous, looking at other “normal” families who seem to have it so much easier than you.
Just as with any loss or hardship, all of these emotions are real—and normal. The entire period of caregiving for a child with a brain injury can be difficult, but perhaps the most difficult time can be at the beginning, when you first face the stark realization that your child has this injury and the effects it will have on your life and your child’s life for months and years to come.
And it is imperative—whenever you feel these emotions and grief—to allow yourself to grieve. Recognizing the hardship and the emotions and the loss is important to processing the situations, your family’s new realities, and your future. Expression of grief is thus not only normal, but it is also constructive: true feelings that should be expressed so that you can work through them to be a better person to yourself and to your family.
Find Your Support System.
For many caregivers and parents of children with brain injuries, their first line of support is their family and friends. Speaking about your feelings, as well as the feelings and emotions of those around you, is a healthy practice for tight-knit families. Whether it is venting your frustrations about your hardships, sharing your joys, or complaining about medical insurance—articulating these feelings out loud can be helpful for everyone to move forward.
But with the source of your grief at home, many caregivers and parents also find that it is important to seek support outside of the family unit. Remember that you can also reach out to health care professionals and mental health care professionals, who are trained to support you and your unique situation.
Support Groups for Children and Families with Brain Injuries
As you are facing your grief, remember that one thing is for certain: you are not alone. If you need confirmation of this, just look up support groups in your community for children with brain injuries and their families. For example, numerous organizations around the country help support children, families, and caregivers regarding cerebral palsy from brain injuries. Some of these organizations can even help advocate on behalf of your child and your family, provide help finding medical assistance, help answer questions about care and home life, and of course provide emotional and psychological support.
If you are not able to find a support group immediately in your neighborhood, there are also online support groups for parents and caregivers of children with brain injuries. There are parents, sisters, caregivers, and loved ones of children with brain injuries around the world going through a similar situation as you are—and you can find them in a few clicks of the mouse.
These online support groups can also give you the change to branch out and get support outside of your home life and be exposed to the varied experiences of others around the world. These groups can be found on specific support group sites, as well as social media sites such as Facebook. With many of these groups, you can remain anonymous in asking questions if you would rather your identity not be shared. Some groups even involve physicians to help answer your questions regarding medical care and medicine.
Another resource online is parenting and caregiver blogs. Others who have gone through the same or similar journeys as your own have written about it—their triumphs, their low points, information about caregiving and medicine, and personal stories of their family path. Usually, you can interact on the blogs through the comments section. And who knows—perhaps you will be inspired to start your own online journal of your family’s journey raising a child with a brain injury.
Know When You Need to Seek Help.
When you are the parent of a child with a brain injury or cognitive disability, you may want to take the burden on yourself and battle it out alone: but you need to remind yourself that you cannot do this alone, and the resources for support.
Whether it’s your family, your friends at the coffee shop, a psychologist, a personal trainer, or an online blog—remind yourself of your support system, and make sure that you use it. Because alone you can survive your grief, but with the support you can foster a stronger, healthier and happier life for both you, your child, and your entire family.
