It’s been a while…
Rather than continue to vaguely describe what occurred or assume people know I’m going to try my best to attempt an update on Ailbe and what transpired last week. It feels very lonely to have little people reach out or even act concerned about what happened but that’s in true epilepsy fashion and as papa reminds me…
People don’t know.
On March 6th around 11pm at night Johnathan heard Ailbe’s breathing become irregular so he hopped up from sitting on the floor (as he does every night since baby was born). He watched as her irregular breathing led to repetitive snorting and then full body convulsing. Isla awoke from her sleep to Johnathan calling for help and told me Ailbe was hurt. Johnathan wasn’t processing fully what was happening at the time but as I put baby in his crib I rushed to the room and held Ailbe’s head to try and speak to her. Her eyes rolled back completely white and she couldn’t see me. She couldn’t respond. She was biting down so hard we thought she was going to bite her tongue or break a bone. It was beyond words to witness. I immediately called 911 while Johnathan held Ailbe and the fire department was there within a few minutes. She was still seizing. I waited at the front door to guide them up to her room and tell them what was happening while Johnathan held her. She was incoherent. They checked in quickly then rushed her to the hospital. We don’t why this happened.
We will never know.
Ailbe for the last 11 plus years has had a type of seizure called a spasm. These seizures are extremely detrimental to child development and lead to significant delays in children who have this type of seizure. However, they don’t necessarily lead to (rarely) being a fall risk or any physical harm (external). This was different. Ailbe had experienced a Grand Mal seizure, a Tonic Clonic. While people who suffer from these types of seizures can live very routine lives, typical development etc, they do have to worry about safety in the moment of the seizure, the severity of the impact one of these seizures could have on a persons life and have safety plans in place beyond a typical routine. We finalized a new plan with school today and home plan is in place. She needs monitored 24/7 for now. Until we know more.
We had never been given an emergency medicine before Friday. We never had a reason to have one until then. In hindsight we probably should’ve had one. But we didn’t know. We aren’t sure if the spasms are gone. We aren’t sure if this is the new normal. We just don’t know. The whole where this information should be is too big for comfort.
Time will tell.
Ailbe means everything to us. She has always approached her condition with grace and determination. She truly embodies strength. When things get hard, Ailbe gets braver. When things seems too much, Ailbe perseveres. When life almost crumbles, Ailbe hangs on.
Holding her head in my hands and feeling her unresponsive filled the most devastating minutes of my life. I felt numb. While we were in shock, this is the moment that mothers of children with catastrophic illnesses fear the most happening. It was actually happening. Now that it has we don’t speak about it anymore. Nobody does.
That’s epilepsy.
Someone said to me I heard you had a hard week, another person said we are here for you for anything you need yet haven’t heard a word since, another got distracted asking me about what happened just to listen into some random conversation and the vast majority said nothing.
You can guarantee honesty from me usually and I want to say I have a hard time understanding this part of things. It really hurts me. I can pretend it doesn’t, but it does. I like to think I would be the first one to help someone when they’re sinking but maybe I haven’t been and that’s why people aren’t there. Maybe people just don’t know what to say. Maybe people are hurting themselves. Maybe people didn’t know. Maybe I don’t actually have any people. Whatever the reason life gones on and while I understand that, the loniless is dehabilating at times.
Since this happened my little family has struggled to feel normal again but that’s exactly what we strive to achieve. Normalcy, no crazy wild scary moments, just regular life days. If you’re the praying type please pray for Ailbe’s continued health, pray for Isla and her sister heart and pray for no activity in Ailbe’s brain beyond her silly self.
Thank you to our family who has reached out to us, my sister Elaine who checks in on me ten times a day, my dear friend Sam and my church friends. I truly couldn’t have made it through this last week without you all.
Ultimately, what is life worth if we are not living. We could choose to hide. Move to Montana and keep her in a bubble but we are choosing to live.
More to come💜
Xo
A
mypurplepack 