Treading the tricky path: Being around parents of a child with a disability or multiple health conditions

Me: A woman who gave birth to a child when I was 36 years old. A parent of a child born with multiple health conditions. A social work professional with 20 years of work experience. A social entrepreneur who co-founded Ginny’s Planet in 2019 to simplify and trigger conversations on empathy, diversity, disability, and inclusive practices.?

You: You may be a parent. You may not be a parent. You may have been able to breastfeed. Or may not have. You or your child may have undergone several surgeries. Or may not have. You may have had a pre-term baby. Or not. You may have visited the hospitals and doctors 100 times already, even before your child turned one. Or maybe not.

Whatever may have been your journey, it is yours. It may equip you for what is going on in your life. But there is no guarantee that it will equip you to provide solutions to others. You mean well. You want to help. I don’t have accurate answers. But here is what I can say based on what I felt.

1. About breastfeeding: Yes, everyone promotes it and it is good for the child. But breastfeeding, the volume of milk production, and so on: all these topics are not really meant for a public discussion about the mother or with the mother unless she feels comfortable about it. Please remember, not every mother is able to breastfeed for various reasons. The last thing they need is a judgment on their ability to breastfeed!
2. When you suggest new doctors: Yes, this one is always tricky (even when you are confident that you are saying the right thing!). Before you suggest any doctors for the mother and/or child, do check: If they have been going to someone already. What are their feedback and experience till now? Are they really looking for a new doctor? It is possible that for some parents, life has already been packed with hospitals, doctor visits, and tests of several kinds. It is possible (and rightly so) that they are actually hoping to catch up with rest rather than visiting a new doctor.
3. Visiting families at the hospitals when they are getting a treatment done: Please know that it is not about what is convenient for you or what makes you feel better. It is about what is better for the child and family in the hospital. If you are not sure how to offer help, ask the family. For more pointers, I would suggest reading this.
4. My pain vs your pain: This one probably takes a long time for people to overcome, if at all it is possible to do so. Of course, everyone has something going on in their lives. Everyone needs some or other kind of supportive space and some validation off and on. It does not help when you compare the problems, or when you label people to be in the ‘victim mode’. It also does not help to compare the disability certificates and check if the percentage of disability for one child or person is more or less than yours. As I mentioned earlier, whatever may have been your journey, it is yours. It may equip you for what is going on in your life. It is not a competition.
5. Right for me & hence right for you!?: In spite of the number of children you have raised or how old you are, you are (most likely) not the primary caregiver for someone else’s child. Not everything from your life will apply to someone else. The way I may want my child to learn may not align with what you think. The way I deal with everyday things may be different from the way I do things. We may be gearing up for challenges & realities that may be different from yours.
6. Phone calls vs Messages: For the first three years of my son, my phone was always on silent mode (it still is most of the time). I would respond to calls and messages when I could. Someone may prefer phone calls over messages. It is not necessarily the same for everyone else. And not returning calls/messages has nothing much to do with you. It is more to with the level of energy one has left and what one wants to do with it.
7. Ask, don’t judge: It is easy to judge others, especially parents. If you want to know how they are, ask. Their answers, however, may depend on several things. For example, how much time do they have, how much energy do they have, what else are they trying to manage when you ask this question, what kind of relationship do you share with them, and so on? Sometimes, it seems easier to say, ‘we are fine’ instead of giving long answers about how life is.

The fact that you read this post means that you are a concerned friend or a peer. Be around. You are needed.?

Think of other ways in which you can support children with health conditions and their families. I would recommend contributing to this fundraiser for supporting the wonderful work of an organization — Child Heart Foundation (CHF). CHF was founded in 2013 with the mission to provide support, care, and resources to children and their families affected by congenital heart defects (CHD). I know this organization closely and my son, born with a large VSD (and other conditions), was treated by the Cardiologist at CHF.?

Please contribute to HERE to help with the treatment of children born with life-threatening heart defects.?

*This is an updated version of the note I first wrote on 7 Jan 2020. You can find the previous version HERE