Six tips to cope with your child’s new diagnosis and label
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It started as a barely noticable tick.
We thought he was just thinking so fast his brain was having a hard time keeping up.
But this “tick” continued to happen, and happened more frequently …and for longer amounts of time.
Pretty soon other people started to notice, too, and my husband and I knew something more was going on.
At his next doctor’s appointment, I mentioned it to his pediatrician, and she wanted my son to see a neurologist to rule out seizures.
Our appointment with the neurologist led to an EEG scheduled for just two days later. The technician made it very clear that our son was having absence seizures, which back in the day were called “petite mal seizures.” The neurologist called later that day after reviewing my son’s test and confirmed what we already knew.
He had epilepsy.
Words I wasn’t ready for, even though I knew them to be true before they were spoken.
Inexplicable tears poured out of my eyes uncontrollably, the weight of that diagnosis slowly sinking in.
Our little boy needed more boundaries and limitations than most of his friends.
His Sunday School teachers and babysitters would need special training and need to be more vigilant in caring for him.
He couldn’t swim or climb or bathe or go up stairs without close supervision.
To be honest, I felt like somehow I had failed as a mom. Somehow I had let him down. It doesn’t make sense, but those feelings were there.
And all of the sudden I felt unwanted. I felt like we would be unwanted. Suddenly I felt like we were all labelled with a giant tag that said “NEEDY! Proceed with caution”
And we are. We’re needy. We come with some disclaimers. But our friends and support system rose up to meet us just the same.
If you just received a new diagnosis, I can relate to feelings of overwhelm and fear. I can relate to denial. The first time my husband said, “we need to tell his Sunday School teachers about his epilepsy,” my immediate response was, “please don’t say that! He’s just having seizures. Let’s not say epilepsy.” As the words left my mouth I really did know how stupid they sounded. I wasn’t ready yet to engage the label. I didn’t want to make it a huge, scary deal. And every time I said epilepsy I cried.
I don’t know what you’re going through in every detail.
I don’t know if your child’s diagnosis is minor or will end in an earlier death. And I don’t know the full weight of all the circumstances that you’re in. But you’re truly not alone. You are not unwanted.
If you’re a parent whose child has just been labelled with a diagnosis or disability, I have a few tips to offer as someone still freshly walking through it.
Here are 6 tips for walking through a new diagnosis
1) Ask for support
Call your doctor and connect with them about support. There are usually support groups that meet locally, facebook groups, or all kinds of brochures you can have for free if reading is more of your thing.
I can’t stress this enough. If you feel overwhelmed or have a million questions, reach out. Most doctors or specialists will have a nurse hotline or someone able to explain more. Don’t just sit on your questions. Write them down as they come up and then get in touch with someone who can answer them. You’re not a nuisance.
When I called seeking support, an amazing nurse (who thanked me for reaching out, so see, not a nuisance!) walked through all the details she could think of with me. She also sent a whole package of support materials, including a comic book written to explain my son’s epilepsy in a way he could understand (Note: There’s a whole bunch of those for different conditions, so don’t hesitate to ask if they have them for your child’s specific diagnosis).
2) Let your child own their diagnosis label
My husband and I debated how much we should tell our son about his condition, but decided we wanted to be able to talk openly with him about his diagnosis. It’s his body, after all. We have seen a lot of fruit from this. Allowing your child to know what is going on empowers them. Our son is open with his friends and is able to explain his epilepsy to them, which normalizes it. That whole “we fear what we don’t understand” thing. If your child is unable to communicate yet, I still feel like there is great benefit in talking to them plainly about their needs and where they’re at. Especially if it’s something they’ll have as they grow, you might as well start now in talking about it.
3) Research treatments and options
Become an expert on all the available options, medications, or treatments so that you can ask your specialist/doctor/pediatrician about them. Use the main authority website of your child’s condition as the base and starting point. For us, that means we visit the epilepsy foundation website often. So here comes the next tip…
4) Don’t over-research and constantly look up options
It’s very easy to go down the rabbit trail of research. In some cases, the treatment options could be endless and the “googling” can keep you up late at night. Every night.
Limit yourself on your research, and try to keep the late-night binge researching to a minimum. Again, as questions come up, write them down and set aside a time to research the answers. Setting healthy boundaries is a must for yourself. Which brings me to my next point…
5) Indulge in some self-care
This looks different for everyone, but it was certainly something I failed at in the beginning. When I first found out about my son’s epilepsy, I was staying up researching at night, waking up early to continue researching, I was calling nurses and support people, I was emailing friends and caretakers, I was asking everyone for prayer, and I wasn’t able to relax. Only a few short days after the “label,” I was giving birth to our fourth child, so my attention was ripped away from my son’s diagnosis.
Self care took some time in the making after that, but it’s been really important. Doing things to intentionally take care of me helps my mental state, thus making me better able to handle some of the stresses of my son’s needs. Exercising, going out with friends, eating well, getting adequate sleep, and even throwing on a face mask every so often helps. Asking friends and trusted loved ones to give you a break if you’re able can be a huge blessing.
I found that many of my sweet friends wanted to bless me by taking my kids for a walk or have them over for a play date so that I could take care of me and recharge for an hour. Other friends helped by bringing us dinner so that I got a break from the mental stress of preparing food. And it was a blessing to them to help in some way, too. Your need for a break is not a bad thing. Invite people to help. It will actually bless them as well.
6) Try to view the diagnosis as something to work with instead of against
This is harder when the medical situtation is much more serious, but I’ve even heard some cancer patients say that working with their cancer instead or fighting something in their body actually helped their process. Viewing my son’s epilepsy as part of who he is that we’re working to change and overcome rather than something we will fight brings more peace to my son’s heart. He may be disappointed that he can’t do some of the things he wants to do, but he doesn’t hate his epilepsy or hate his body. You may find the “fight” mentality helpful, but working with my son’s body to overcome his epilepsy has been a huge shift in our stress level.
I realize it’s hard to generalize tips when each diagnosis is wildly different and specific. But I hope you hear my heart. You’re not alone, mama.
If you’ve gone through a hard diagnosis, would you leave a comment below or contact me through email? I’d love to hear your tips for how to cope, or just connect with you. If you need someone to talk to, I’d love to offer you any support I can.