Preserving the Family - Parenting A Child With Life-Limiting Illness

Siblings play an important role in children’s learning and development. Interactions with brothers and sisters provide opportunities to learn about sharing and emotional reciprocity, to develop social skills, to express thoughts and feelings, and to practice resolving conflict. But for children whose brother or sister has a disability, such as a rare chromosome disorder, some of these sibling experiences may be different.

Caring for Siblings

Having a sibling with a life-limiting illness affects a child differently depending on a multitude of factors: the medical needs of the brother or sister, the parents’ ability to cope, etc. However, what is prevalent is the stunted attention siblings of children with a life-limiting illness often face.

The kids only share a certain amount of things with their parents because, of course, they want you to know it affects them. But they’re not going to be open to come and say to Mom and Dad, ‘I’m jealous that you’re spending all this time with my sister.’
Yes, it affects them a lot. They miss their sister, but they miss their parents too.
—Floribeth Roman, Parent, National Tay-Sachs & Allied Diseases Association, Inc.

It is not unusual for siblings to experience feelings of guilt, grief, confusion or anger—and it may be difficult for them to comprehend let alone articulate these feelings to others. But it is important to allow them to express their feelings no matter how vague. By doing this, you are acknowledging them, showing them you care.

It may also be helpful for the sibling of the child with a life-limiting illness to confide in a child therapist who specializes in grief counseling and who could be a good ear and aid. Often, a child may be able to tell things to a therapist that they might be reluctant to share with their parents. Also, a child’s understanding of his/her sibling’s illness and prognosis will change as the child develops, and a therapist can help both the child and the parents navigate through these transitions.

If you feel overwhelmed with caring for your loved one with a life-limiting illness as well as the rest of your family, help is out there! One parent shares her experience caring for her two sons, Ryan and Jake (the latter has a rare, life-limiting disease):

For five years, we hired au pairs to live with our family and provide childcare, normalcy and consistency for Jake’s older brother (and by default our entire family), while we took care of Jake’s needs. It was important to us that Ryan had as normal a home life as possible, and to accomplish that we needed a third set of hands.

If you have other children that are unaffected by a life-limiting illness, there are other resources that you may find helpful. The Sibling Support Project believes disabilities, illness and mental health issues affect the lives of all family members. With that in mind, this nonprofit organization aims to support the brothers and sisters of people with special needs.

Another great resource, Sibs is a United Kingdom charity that represents the needs of disabled people. Siblings of those with life-limiting illnesses have a lifelong thirst for information, often experiencing social and emotional isolation while coping with difficult situations.

Siblings Australia, Inc. is also committed to improving the support available for siblings of children and adults with chronic conditions, including disability, chronic illness and mental health issues.

In addition, there may be counseling programs provided by your state. Many states have such programs for children under these sorts of situations.

In our state (Rhode Island) there is a counseling program for siblings of chronically ill children. I see a tremendous amount of merit in it. The director is herself the adult sibling of a chronically ill child and will understand the anger, fear and sadness that are sometimes misinterpreted as behavioral issues in our healthy children.

Here is a link to the program in Rhode Island, but I don’t want to mislead people though as there is a significant waiting list to get accepted.
—Shannon Reedy, Director, Chase the Cure

Maintaining the Marriage

Caring for a sick and dying child really requires two parents that can work well together, and it is not unusual for the challenges associated with this incredible job to put pressure on a marriage.

Caring for a medically fragile child can definitely put a strain on a marriage, and probably the biggest thing that I can say for how we coped for it was open communication, being able to make sure that we were on the same page, talking with each other and really coming back to reevaluate and knowing that for each one of us, it’s okay for us to change our minds at any point. But we did have to talk about it.
—Michelle Wilson, Parent, National Tay-Sachs & Allied Diseases Association, Inc.

The most effective way to keep a marriage intact is through communication. It is vital to make sure you are each in support of decisions and always aware of what’s going on.

Once you establish communication and once you establish to not hold things in, then you become a team. And that’s when things get better.
Parent, National Tay-Sachs & Allied Diseases Association, Inc.

Adding couples therapy may help you and your spouse establish this vital communication. It can help you both cope with the situation, process your different opinions on approaching your child’s illness, and understand each other’s fears and concerns. Couples therapy, also referred to as Grief Counseling, can truly make a difference in maintaining your marriage.

Involving Extended Friends and Family

The diagnosis of a life-limiting illness can be overwhelming, not only for you, but also for your friends and relatives. They can be unsure of what to say, and they may feel uncomfortable because they may not know what will upset you.

So it is not unusual for relatives and friends to simply disappear just to avoid this awkwardness. Afraid of saying the wrong thing, they’ll just not say anything at all. If you sense this happening, don’t feel afraid to speak up!

You may want to ring in others in the particulars for the diagnosis: what treatments are needed, the prognosis. People may want to help, but they don’t know how. Your loved ones will likely want to support you and your family. Allow them to! Try to be as specific as possible about your wants and needs. Help them help you.

I think the best approach is to kind of educate them because they don’t know anything about our world. I mean, I can’t blame them: they have no clue, so the best approach would be to tell families and friends what you want. If you want their support, tell them, ‘I need your support. I need it this way’ or ‘No, what you said is a little bit hurtful. Let me tell you a little bit about the disease or what we’re going through.’ I think the biggest thing is communication and telling friends and family what you expect.
Parent, National Tay-Sachs & Allied Diseases Association, Inc.

But don’t feel obligated to keep your extended friends and family always in the loop, if you feel overwhelmed as it is. Relatives should be there to support your family and your decisions. If their roles change, don’t hesitate to voice your concerns.

Make decisions by yourself; you don’t need to involve everyone in your extended circle in decisions they don’t have to live with. Too many cooks in the kitchen or, in this case, the petri dish are going to make you homicidal.
—Shannon Reedy, Director, Chase the Cure