Share the responsibilities 

  • Share caregiving tasks so no one feels overwhelmed. Make sure that you both know how to do important medical tasks. 
  • Encourage your child to go to both parents for support so that they feel free to talk to either one when the need arises. 
  • Be present and face the illness together. Both parents need to accept the reality of the situation and be able to attend appointments. 
  • If one of you is struggling to adjust, reach out for help. 

Stay connected 

Share your feelings and your worries: don’t be afraid to ask for what you need. Remember that your partner can’t read minds, you need to ask! Don’t forget that you are both looking for the same thing: the best for your child. 

Parents often devote all their time to their child’s illness, leaving no time for themselves and allowing this to become “the new normal.”  

Try to: 

Communicate openly and often. Questions to reflect on together: 

  • How does the illness affect us as a couple?
  • What can we do to strengthen our relationship?
  • What do we need as couple under our present circumstances? 

Share feelings and ask for support when you need it. 

Use “I” statements to avoid blame during conflict. 

Make time for each other, even if it’s just a quick check-in or a shared cup of coffee. 

Plan regular “date time” to reconnect and focus on each other. 

Train caregivers on daily routines and emergency care so you can fully relax together. 

Put the illness in its place 

Don’t give it more time than is necessary, nor less. Find the balance. Try not to center all your conversations and activities on your child. Your lives are made up of other elements outside of the illness: friends, relatives, hobbies and dreams. 

Your relationship with your partner is not defined by the introduction of PH into your family. And like any challenge in life, pulmonary hypertension can strengthen the family bond. In fact, in a recent PHA survey the vast majority of caregivers said it had done just that. One caregiver noted, “I think we have both become better people because of everything we’ve been through.” Another said, “Pulmonary hypertension has strengthened our marriage.” 

Thanks to PHA parents and the National Spanish Association of Pulmonary Hypertension.