Guest Author - Marie Stroughter

It was exactly seven years and one week ago today that I posted an article here at Bella Online about my oldest son’s diagnosis of autoimmune Type 1 diabetes mellitus. Today we received yet another diagnosis: seizure disorder (epilepsy).

When you are faced with such news, it’s such a numbing shock. While dealing with your own internal conflicting emotions, you “put on a happy face” so as not to scare your child, all the while your mind is racing with a million thoughts and questions, barely keeping pace with your rapid heartbeat.

So what do you do?

Ask questions: While in the doctor’s office, ask your practitioner for all the information you can get. Ask every question you have. Ask for referrals to support groups, educators, and classes (for parents and for children). If there is a formal society or foundation for the condition, see if your caregiver has the literature.

Reassure your child: Don’t allow the practitioner to talk over your child. Involve your child to the extent able, and make sure h/she understands and asks any questions needed. Once you leave, reassure your child. If the diagnosis is a life-threatening one, or is terminal, don’t talk down to your child and dismiss the realities, yet, do make sure your child knows that you will be there every step of the way.

Grieve: You may need a period of time away from your child to process this new bend in your parenting path. Your partner may also need this time. Your child may need some time, as well. You may see many stages: anger, fear, ambivalence - or even vacillating between them.

Learn all that you can: Follow up with the literature and referrals. Search reputable online sources for further information. Knowing all that you can about the condition can demystify it and help you feel more in control over the actual elements you can control.

Don’t play victim and don’t play favorites: Diagnoses affect the whole family. Siblings may become jealous of the special attention placed on the child with the diagnosis. Or, sometimes families go overboard the other way and allow the child with the diagnosis to feel a sense of entitlement and let them get away with anything, or spoil them. Family rules are family rules, and even a child with an illness can be civil and obey basic rules. Because his blood sugar swings due to his diabetes can make him moody or cranky, we have our oldest son check his blood sugar before settling on any behavioral consequences. If his blood sugar is very high or very low, we know mood swings are a hallmark of this. With his new diagnosis, his doctor said that the new medication can cause irritability in some children. Knowing these things helps us determine when to cut him some slack and when to keep him accountable.

Don’t talk about the condition to others ad-nauseum: The temptation is to re-hash the diagnosis with everyone. People will ask questions. Your child often will overhear, whether you mean them to or not. I sent out a mass e-mail to those who needed to know, with all of the information they needed to know. In the note, I said that I was outlining as much as I could so as to avoid prolonged discussions and questions in front of my son. Ignoring it would be weird, but to have to tell the same story over and over isn’t helpful either. If questions persist, point the questioner to some of the resources you’ve collected and thank them for their concern. Be polite, yet firm.

Create space: As a woman with ADD, I rush around a mile a minute and bite off more than I can chew in terms of commitments. I need to slow down and cut back on things that can easily afford to go. Simplify your life to the extent you are able. Friends and family will offer to help. Let them. If you are financially able to outsource routine tasks, do so. Crazy routines and chaos make for stressful living. Serious medical conditions are stressful enough without the added pressure.

Spiritual practices: If you are a spiritual or religious person, allow your faith and faith-based community to sustain you.
It’s so hard to hear the words that seem to, in a blinding, momentary flash, change your life forever. But, hopefully these ideas can help you assimilate this new terrain.