My husband and I were very lucky to get pregnant with our daughter fairly easily. In fact, I was so surprised when we found out we were pregnant that I think it blocked my mind from being able to worry about everything that could go wrong. I knew motherhood would be hard but I was thinking more along the lines of lack of sleep, breastfeeding, tantrums and picky eating. I never considered medical issues. I had a fairly easy pregnancy and delivery so we left the hospital thankful for a healthy baby and ready to figure out how to be parents.

Unfortunately, things were not as ideal as we expected and  we were hit with health issue after health issue her first few months of life. She was jaundiced as a newborn and required follow up bloodwork that our pediatrician didn’t do in office. It was our second day home and back to the hospital we went. She had breathing issues and was diagnosed with laryngomalacia. Some of her bloodwork from right after birth came back abnormal and we had to take her to CHOA at nine days old for a blood draw with strict instructions not to Google what an abnormal test meant. She struggled to gain weight. She had reflux. She had torticollis and needed physical therapy. She needed a hip ultrasound. She was hospitalized for two nights at five months old for dehydration from a stomach virus right after she started daycare. We were fortunate nothing was a major issue but it was hard not to compare our situation to friends and family with babies and wonder why no one else seemed to be experiencing what we were.

After the stomach virus, things started to calm down a bit and I felt like we found our groove of not constantly receiving bad news or specialist referrals at pediatrician appointments. However at nine months old, things changed for us forever. We had been dealing with a sick baby again and she started acting strange around bedtime. We spoke with our pediatrician and a neighbor that is a nurse and were told to go to CHOA based on her actions and how she looked. On the way there, she spiked a 105 fever and had a febrile seizure in the car. My husband drove Mario Kart style on 285 while I called 911 and panicked in the backseat with her. We pulled up to the ER and rushed her inside where they put her in a trauma room to stabilize her. Once she was stable, the ER assured us that febrile seizures are common and harmless and sent us home that night. Follow ups with our pediatrician led to more abnormal blood work and another trip to CHOA a few days later with strict instructions not to Google why they wanted her to have more thorough bloodwork done. It ended up being tied to a kidney issue and another specialist referral. The febrile seizure was horrifying and we were traumatized, but also hoping it had been a fluke because she was so sick at the time.

Unfortunately, our daughter had another febrile seizure with a common cold at 16 months old where we were again told it’s common and harmless and sent home. She then had a severe seizure completely out of nowhere that required CPR at 18 months old. This seizure was abnormal and we spent the night at CHOA and were referred to a neurologist. The neurologist prescribed rescue medication due to the severity of the seizure and started running tests. Our sweet 1.5 year old had an in office EEG, a 24 hour at home EEG, a sedated CT Scan and we were all swabbed for genetic testing. Thankfully everything came back normal but it left us living in fear of having no idea why this was happening and when and if it would happen again. At 23 months old she had another febrile seizure at daycare and was diagnosed with the flu at the hospital. A few months later she had another severe seizure out of nowhere. When the ambulance got to CHOA, she was rushed to a trauma room. While the nurses and doctors worked on stabilizing her, a chaplain came into the room to be with us. She said it was standard protocol, but it will forever be one of the scariest moments of my life. We spent two nights at CHOA after this seizure where she underwent more testing. Due to the severity of her non febrile seizures, she was officially diagnosed as epileptic and we began daily seizure medicine.

The trauma from what we’ve seen and been through has done its damage. We have to consider her condition and have her rescue medication on us wherever we go. Any illness with fever is still terrifying. Seeing the school phone number pop up on your phone is essentially an immediate panic attack. We see friends going on frequent date nights or couples trips, but for us, leaving her is stressful. We have to trust babysitters to be able to recognize if something was off, give daily medications at the right time, and be comfortable with seizure First Aid/CPR and potentially giving emergency medicine if it were needed. It’s a lot to consider. Fighting anxiety and PTSD is almost a daily challenge. When you desperately need support because your kid has seemed a little off lately and you’re worried it could be a sign of an illness or a seizure, or you’re stressed because you have to take your kid to get bloodwork done again and you hate that for them, or the intrusive thoughts are winning and you can’t stop the flashbacks from your traumatic moments, it can feel very lonely. There is enough about motherhood that is already so hard without adding health issues to the mix. It has felt impossible at times but we keep moving forward.

While we have had a very scary first five years of parenthood, I am happy to report that currently, daily seizure medication has helped and she has been stable since the spring of 2021. We still have to go through yearly neurological testing and blood work but thankfully she continues to have clear results on all tests. We are hopeful this is something she will grow out of. She is now a 5.5 year old Kindergartner and she’s thriving. She wants to be a teacher/artist/fashion designer/Taylor Swift when she grows up. Her bravery and resilience are inspiring. She handles everything she has to go through with a smile on her face and just moves on like it was nothing. She has no idea how much she has overcome and how strong she is. One day, I hope I can be just like her.