Posted by: Patient Advocate Summer Katz, M.A., NCC, LMHC
Over the years, I have experienced a lot of really incredible things. I have participated in great adventure and excitement. I have also felt much sadness, as well as grief. Reflecting briefly on my childhood, the first thing that makes me smile is the support of my dad. From encouraging the successful completion of each school grade, to acknowledging the benefits of having a peer group, and ultimately being that unyielding rock during my ‘second chance at life’ transplant operation and recovery – my dad really deserves all of the credit. I am proud to say that my dad taught me about ‘valuing what you have.’ While I certainly struggled in dwelling on the frustration of pain or unwanted circumstances when I was younger – I can say that it is our continued, positive father-daughter relationship that keeps me appreciating the benefits from all that I work for (in the pursuit of my goals and in relationships).
One of the things I know I’ll never be able to genuinely understand is how it must feel as a parent of a child with a chronic illness. I know that each parent responds differently to seeing their child go through life with unwanted symptoms and incurable deterioration. I empathize deeply with these parents, and as I think of my own, I know that the experience has had its moments of overwhelming uncertainty, fear, and frustration.
The parent has to take on so much responsibility; maintaining the safety and security of the child, and ultimately making sure they offer the best guidance and support for what the child needs in order to grow into a happy and healthy person. When the diagnosis of an incurable health condition is given, this desire turns to disappointment only because the parent certainly was not expecting the child to have to live life with observed and perceived limitations or distractions on that road to health and happiness.
With this, parents go through their own process of grieving, as they no doubt experience sadness, anger, and even certain versions of bargaining (that is, having thoughts of, “If I only do this, then that will happen…”) in reflection of the initially anticipated arrival of their “perfect” little bundle of joy. The dream of perfection is quickly shattered when the cards are dealt and the parent learns that they will now additionally be responsible for a life including worrying about medications, treatments, and medical interventions; as well as symptoms, side effects, and potential exacerbations of the condition.
I also recognize the impact to the siblings. Brothers and sisters can easily experience jealousy and frustration in seeing their chronically ill sibling receive extra attention, regardless of whether it is for the purposes of receiving their medical care. Some participate greatly in their sibling’s care, and the experience may offer increased empathy and compassion; however others can withdrawal, blame and act out due to a sense of comparison and emotional competitiveness or resentment.
Over the years, many options have been made available for the person directly suffering from a chronic condition. Consider options such as support groups, camps, and the variety of books and readings that cater to self-help. It seems that the primary focus of the facilitator, or publisher of these resources, often refers back to the person with the issue or diagnosis, which may be yet another reason that so many siblings can quickly decide that they feel left out or cast aside.
Interestingly enough, there are more and more outlets for inclusive support. It simply takes effort on the part of the parent, as well as the willingness of the well sibling, to engage in these opportunities. I am mentioning this to suggest that life can often be benefitted by engaging in such resources.
Throughout my life, I have known great loss. Many of my loved ones have died and I have also seen others fall victim to the tragic circumstances in their own lives. I was also recently reminded yet again of the frailty of life following the passing of another family member. When this happens, it tends to make you reflect deeply on what is truly important in life; focusing on the meaning of the bigger picture.
As I write this blog, I acknowledge the impact of unresolved grievances due to these losses, while ultimately desiring “an easier life.” And I certainly validate how family members and the relationships that we have with each other can become a source of frustration, going back to that desire of wanting something better.
However, I believe the goal in coping within the family, certainly in any case of loss, is to commit to participating as a team. The possibility of recognizing acceptance and ultimately welcoming peace is enhanced by doing it together. Recognizing that we do not have to go through these losses (i.e. unmet expectations and unresolved grievances) alone, makes for a quite powerful opportunity to come out the other side of the struggle knowing that we have the support and love of one another.
I have so much appreciation for my family. I feel their support constantly, and I also know how important it is to make an effort to offer that same support for their needs too. As I mentioned the relationship with my dad, I value the reciprocation of our efforts. I certainly try to apply the same concept in all of my relationships; what I put in, I get back – and what I get, I offer the same in return. This makes for a very loving and supportive dynamic.
What are you doing to engage with your family? How do your efforts enhance your relationships?
I’d like to hear your thoughts in the comment section below, or please consider joining our CF Connections Virtual Support Group once each month from 11:00 a.m. to 12:00 pm EST at https://www.facebook.com/groups/CFConnections/. Just send an email to firstname.lastname@example.org and I’d be happy to give you more information and help you get started.
Here are a few specific resources to encourage healthy coping for the family:
- Cystic Fibrosis Moms blog https://www.circleofmoms.com/cystic-fibrosis-moms
- Tools and Tips for Parents of Kids with CF https://www.happyheartfamilies.com/TipsForCFParents.html
- For self-care as a caregiver https://www.disability.gov/can-take-care-caregiver/
- Article for parents with children who have a chronic illness https://www.parents.com/parenting/better-parenting/advice/parents-and-chronic-illness/
- Siblings of children with chronic illnesses or disabilities https://www.healthychildren.org/English/health-issues/conditions/chronic/Pages/Siblings-of-Children-with-Chronic-Ilnesses.aspx
- Caring for siblings of seriously ill children https://kidshealth.org/parent/positive/talk/sibling_care.html#
- Coping with Loss: 115 helpful websites on grief and bereavement https://www.mastersincounseling.org/loss-grief-bereavement.html
*Disclaimer: This blog is provided for informational purposes only (including brief topic exploration or reflection) and should not be used as a substitute for professional mental health or medical treatment. ** All listed resources have been provided for supplemental reading only, and the Cystic Fibrosis Pharmacy nor Summer Katz, M.A., NCC, LMHC is neither affiliated nor endorsing the aforementioned published material.