Special needs dad
Hello! So I guess I should start by introducing myself. I'm Jake and this is our first born, Eden, who has given me the most honorable role of being a special needs dad. Eden was born with a rare brain malformation called Lissencephaly, which literally means she has a smooth brain... which we had zero idea about until she was 6 months old. I have been with my wife, Nat, since we were 16, and we also have a 'neuro typical' daughter, Emerson, who is 1.5. I wanted to start sharing about our life and my experiences as SN dad as I haven't found anyone I can quite relate too, so hoping this may help someone else in a similar position. Although I'm sure you wouldn't believe it but, having a child with special needs is such a blessing, and has definitely change our lives for the better. It wasn't until Eden was diagnosed that we have been shown just how much kindness and love there really is in this world.
Eden Grace
And now to explain our life with Eden, and we might as well head back to her early arrival. Eden was born at 33 weeks (7 weeks early) she only weighed 1.6 kg - our tiny little girl, so fragile yet so strong. She never once needed help breathing, which for her gestation and weight is 👍 She spent a month in hospital, the first week in a humidity crib, holding her was kept at 10-15 minute a day max, most of those days we took in turn. It was heartbreaking but we were absolutely ecstatic and being with our first born, I didn't know I could love someone so much! We took her home after 4 long weeks and went back to our pediatrician every four weeks and everything was going as it should. At five months they noticed she had low muscle tone, which is not uncommon, especially in premature babies, so we started seeing a phyiso who assured us she would be strong enough in no time.
Loving our eden
Fast forward a month to Christmas, Eden is 6 months old and we started noticing her shrugging her shoulders every time she woke, followed by a poo and not too long afterwards she would be back asleep. Over Christmas and the NY week, these shrugs would become more intense, and her whole body would gently squeeze inwards. We spoke to a nurse on call and she advised we head to RCH. We arrived in ER later on a Saturday night, and were admitted into the neurology ward and I stayed with her while Nat headed home. No one had mentioned seizures at this stage. I was told to ring the buzzer if she had any more then 5 tenses in a row, which happened in the morning and it very quickly escalated. The nurse came in and she hit the alarm, which brought a big team of docs in, I was pushed out of the way and my little girl lay out of my reach surround by stranges and oxygen mask and meds. That was the scariest moment of my life. I was completely helpless and was pleading for it to be me instead of her. 19 minutes of hell. Thankfully, arguably the best Neurologist in Australia came in with the emergency team and very quickly recognized the seizures and calmly explained them to me when it all calmed down. He suspected West Syndrome, which is a specific type of Infantile Spasms, but we would have to wait another day for an ERG to confirm before we could start medication. Over next 36 hours Eden was seizing every few hours, aways needing 2 doses of rescue meds to get it to stop. She also had an ERG and an MRI. The Monday night we got the confirmation that the seizures were in fact West Syndrome, which ment her brain was in complete chaos/epileptic activity 24/7, which is extremely dangerous and we had to start an intense 6 week course of steroids to hopefully get them to stop ASAP. Again no one eluded to us the concerns of the cause of West Syndrome and we sort of thought we were in the clear if the steroids worked... Tuesday morning we we're ushered into a conference room full of about 8 people who all stood as we came in and awkwardly introduced themselves and their title. More Neuros. Counselors. Social workers. And one very kind nurse. The next few hours are a blur really. So many words we've never heard before. So many tears. Anger. Disbelief. Numbness. Lots along the lines of she will never walk. Never talk. Unlikely sit. We don't know how much she can see. Or hear. Seizures. Lots of seizures as she gets older. But she will get older. And 'her personality will shine through'... Nat says she was fighting the urge to open the door and throw herself over the edge. People who are taken into those rooms are never getting good news. Within an hour of getting this diagnosis spewed at us my sister and best friend walked into Edens room in hospital. They literally held us up and cried with us. Picked us up and walked us out of RCH promising to stand with us forever. Eden was discharged and we were free to leave within another hour. Wtf. My parents came to see us later that night, I broke down and wept and my dad held me, my heart was broken, I asked why? Why Eden? Why? The next few days are more of blur. We didn't remember her diagnosis. Just something along the lines of thick lining of the brain... Physically felt as though we had no strength. Walking felt impossible and breathing hurt. Really hurt. And my sister and our best friend Lou made sure we were fed. They sat with us in silence. Held us. And loved our Eden as if nothing had ever changed.
