I’m not going to tell you it’s going to be okay because I don’t know myself.
I know that you may feel that the bottom has fallen out of your world and to an extent it has, but there’s a safety net. You will build your village, you will find people in common whether this is online or in person.
You will have a new “normal” and your conversations will change. You will be pronouncing those strange drug names easily in no time. You will find your family and friends will ask you how things are, and when you start to really unfold into the journey so far with meds, appointments, and treatments, some will glaze over and will only want to hear that everything is fine. But you will find people that want to hear and want to understand.
Well-meaning people on social media may offer you cures, milkshakes, vitamins, meditation, unsolicited advice, and tell you that their friend’s cousin’s sister also has the same diagnosis but they are much worse than your child. As competitive as this world is, this is not a competition any of us want to be in. Yes, there are people worse off than you and your child, but please do not let that invalidate your journey. Just because someone else’s child has been admitted to hospital, is on more medication than your child, or has to have an ambulance called for every seizure, it doesn’t make them the competition winner.
You may feel vindicated and relieved to finally receive a diagnosis. As much as you didn’t want this, it validates the things you have been observing (and googling). This is a normal feeling. You may feel angry and scared and want to grieve on behalf of your child for the things you think they won’t be able to do, but you will be surprised. My first thought, when I received my daughter’s diagnosis, was “Is she going to die? Will this awful condition take her from me?” Nobody can answer this, not even you, so function in the here and now.
Then there are the meds. The side effects leaflet is not your friend. I get that forewarned is forearmed, but sometimes having immense trust in the doctor and epilepsy nurse (if you are lucky to have the support of one) to know what they are doing will be enough for now. It is so scary to give your tiny precious child these medications, and I dreaded when we were introducing new meds because we went through the whole shopping list of them! But observe your child, make notes, and share your feelings. Not every medication is the right fit, and like a recipe that you’ve never made before, it’s trial and error.
Don’t lose sight of your child throughout all of this. They are still your baby, they can still do things and be children, we just have to adapt things slightly to make sure they can. Their diagnosis is a part of them but not all of them.
You will eventually sleep! Your worry levels will drop as you find your new normal. They will be higher than they were before, but in time they will be manageable. I ended up crowdfunding for a monitor for my child to alert me of events during the night. This did help eventually, but there were times when the alarm liked to randomly go off to surprise me. You may change your sleeping arrangements for a while to be near, just in case. When you settle and gather a pattern of normal, life before diagnosis will creep in again.
Your phone won’t leave your side. You will be on edge waiting for a call from school/nursery/childcare. This probably won’t change for a very long time, and this is fine.
People that haven't lived this world may pass judgment and tell you you’re being overprotective and to relax, but watching your child have a seizure, whether this is an absence or a tonic-clonic, will feel like the longest moments of your life.
Once your child has recovered from the seizure, please take time to reflect. This isn’t selfish, it is important. This is where you will learn and develop resilience and work out a plan. If need be, write yourself a checklist. Look at times during a seizure where you may have to take further action. Please also follow your seizure plan if you have one. These things will be your friend when you need the practical thoughts to take over rather than the fear and emotional ones (they come later).
I could go on and on, but I don’t want to further overwhelm you as you embark on this new journey, one that no one would buy a ticket for. You aren’t alone. You may feel you are in those first few weeks and you may want to close off from the world and not want to share this with anyone, but eventually you will. You will look back on those first few weeks and where you are now and wonder how you got through it... but you did it.
