You and your parenting partner are the primary team. A psychologist, social worker, chaplain and/or spiritual leader can provide a neutral space for talking through issues and concerns, either together or separately—or both. For some people, a trusted friend or relative who listens well makes all the difference.
Partnership and Marriage
Share
Having a child diagnosed with SNI may be the first time that you and your parenting partner are facing such extreme stress and complex decision-making together. It can take time to process your emotions and to discover each other’s coping and communication styles. Learning to understand and appreciate each other’s needs will help you stay committed to and nurture your partnership—and find greater strength and courage to go forward.
The Parenting Partnership
Having your child diagnosed with an SNI is one of the most stressful experiences you will face. Whether the diagnosis was expected or a long, drawn-out discovery, the early days are a time of adjustment that can bring up all sorts of new feelings within your relationship. Perhaps you have heard that a serious illness or death of a child can lead families to fall apart, that marriages fail. However, many partnerships survive and partners even grow closer through their unique shared experience. Know, too, that some studies show that parents of seriously ill children are no more likely to end up divorced as compared to their peers.
Families exist in all kinds of constellations. The responsibilities of caring for your other children, if you have them, may weigh heavily on you during this time. Your parenting roles may shift as you try to deal with other responsibilities and commitments, like work. You may be calling on friends or relatives to provide meals, rides or attention to other day-to-day needs. Your children may express fear, sadness, jealousy, frustration. You will want to discuss how to make certain that siblings feel seen and loved.
Healthy, helpful co-parenting relationships are also possible if the parents don’t live together. Discuss how you will work together on decision-making. Ensure that everyone has the same information about the child’s condition, and have agreed on a protocol for emergencies.
Whatever the case, it is critical that the partners are clear with each other about the goals of care for the child. If there are differences of opinion or goals between caregivers, a discussion facilitated and mediated by a clinician for example, a palliative care clinician or therapist can help everyone discuss the concerns, feel heard, and, in time, arrive at an acceptable solution.
Navigating Differences in Communication
Sometimes your differences, big or small, will make decision-making more challenging. In those moments you may feel very vulnerable. You and your partner can better support each other when you acknowledge that you are in this together, and each trying to do what is best. If you are unsure of how to communicate, or if you are worried about how your differences are affecting your relationship, a third party can be helpful.
There may be assumptions and expectations that are challenging to express and hard to hear. Your different views and/or different ways of approaching things can cause strain in the partnership. One of you may seek information; the other may not want information. One may want to think about the worst-case scenario; the other may prefer to think only in an extremely hopeful way. One may want to communicate widely to family and friends; the other may crave privacy and resent what they experience as intrusion. In most instances, one way is not better than the other. Rather, these are personal preferences. Being able to communicate your preference to your parenting partner and their being able to communicate theirs to you is important in building mutual understanding, so that you can move forward together with as much harmony and as little frustration as possible.
You may not know how to communicate your feelings and this may make you feel vulnerable. This may also be the case for your parenting partner. This is when a third party, a neutral person such as a counselor or therapist, can be helpful. This person creates a space where there’s opportunity for everyone to speak and listen to each other, and time to look carefully at a challenging issue together.
Defining Tasks and Roles
It is important to acknowledge early on that neither of you can do it all, nor be in several places at the same time. Each person’s efforts are an important contribution to the family unit. Accepting and talking about the division of labor can help a great deal. You and your partner can better support each other when you are able to openly recognize what you each are contributing, and by acknowledging that you are in this together.
Supporting each other through this journey can be challenging, but it is in everyone’s best interest. Make a point of finding time, if not together then by phone or text or video, to communicate about what is going on and how you each are feeling. Technology can also help you and your partner stay involved in real-time discussions and events at home and at the hospital, when it is otherwise not possible to be together.
Feelings and emotions about your child’s illness and the illness journey naturally arise, and can arise differently in each of you—and differently at different times. It is helpful to recognize and name them—sadness, anger, depression, anxiety, confusion, irritation, frustration, fear, guilt—but some are more difficult to share, or feel more difficult to explain. The feelings might be directed at each other, or at the medical team, or simply at the situation. You may also at times feel very angry with yourself, worried that you are not doing your best for your child, your other children if you have them, and your partner.
In this stressful situation it is helpful to keep in mind that you are both grieving and learning to navigate this new and unexpected world, and that no two people can be expected to react in the same way. It can also be helpful to remember that you may experience different feelings at different times, and those feelings may not always be aligned. The same is true for your coping styles, and for your goals for your child and family.
