November is National Caregiver Month. So for this post I want to focus on the impact this condition has had on Brayden's older brothers. If your child with IBHS has older or younger siblings, you may find that you relate to some of this.
Anxiety
It is sad to think that some one so young could suffer anxiety, but that happened to Brayden's oldest brother Ethan. Prior to Brayden's spells becoming severe, and seizures being a part of our day, Ethan was so carefree. Untainted. He really had not a care in the world. He was always happy, on the go, his sense of humor was incredible! He was a goofball! Ethan was 8 years old when Brayden had his first seizure. The change in Ethan wasn't noticeable at first. I think it was more of a gradual change as things started to spiral with Brayden's condition. Sadly, I didn't notice it right away, and didn't make the connection until time had passed.
Ethan stopped sleeping over friends houses, something he enjoyed doing all the time, from the time he was 4 years old. He would get stomach aches when it came to going out without the whole family. His personality changed. He wasn't carefree anymore. He seemed to have something on his mind, but I couldn't understand what. That sense of humor that so many enjoyed was lost.
Ethan was invited to a sleepover at a friends house, and he declined. He hadn't been to a sleepover in a year or so. I sat him down and asked him what was going on, why he all of a sudden wasn't sleeping over friends houses. He said he just didn't feel like it, he liked being home. The conversation seemed to be going nowhere for some time, but I kept prying and trying to get something out of him, because him not feeling like it, was just not enough. It wasn't him. Finally, it came out. He broke down and cried, and told me he was afraid that something bad would happen if he wasn't here. I didn't understand, and asked what he was talking about, and he said, with Brayden. My heart sank so low, I felt the thud when it hit the floor. It had never occurred to me that this was affecting him. Honestly, to this day I can't remember Ethan ever being part of the crowd, when Brayden had an episode. So I couldn't imagine, something he never witnessed affecting him like this. The truth is, Ethan wasn't around to see anything happen, he told me he didn't want to see it, so if Brayden got upset, he would leave the area, so he didn't have to see it.
Ethan is now 12, and honestly, things haven't changed much, despite my reassuring him that Brayden would always be ok. That nothing bad would happen to him. Ethan goes outside and hangs out with his friends, but that's where it ends, he still doesn't sleep away at night, unless Brayden is sleeping over with him, for instance at an aunt or uncles house. He is very careful with Brayden, and protective of him. He makes sure no one else is being too rough with him, and he has formed a bond with him that is very different than the bond he has with my middle son, Ryan. To this day Ethan has never seen a spell. I've talked about them with him, to try to ease his fears of something bad happening, by giving him an understanding of what happens, and why and how it happens (to the best of my knowledge of course), but this condition has already made such a deep mark on him that despite the efforts, he remains scarred.
Growing Up Too Fast
We all know how suffering medical illness, or serious medical conditions can cause the patient to grow up too fast. Have an understanding of things that no child should have an understanding of, such as hospitals, procedures for tests, taking daily meds, etc. But what about the siblings?
Brayden had his first seizure when he was one, which made his older brother Ryan, only two. That first seizure I was the biggest mess, as I thought I was losing him. I was frantically running through my house looking for a phone to call 911, while holding his lifeless body in my arms. Ryan being two years old, and not understanding of the situation kept repeating (in his baby babble) "ba, ba, bo Bayen" (translation: bad, bad, boy Brayden). After learning that this could very well happen again, I knew I had to get a handle on myself. At least while the spells were happening. Not just for Brayden's sake, but for Ryan's sake too. I didn't want him to see me fall apart, as he may learn to fall apart too. It wasn't easy. It was so hard, I wasn't always successful. As the spells became worse, the seizures became more severe. They changed, and looked so much more horrifying to me. The frequency at which they were happening, was draining. Eventually, I learned to stay calm during the spell, and when I knew he was ok, walk into another room, and silently cry, until I could let a good cry out in the shower, or when everyone was asleep. What happened with Ryan, was much more incredible. When Brayden had his next severe spell, Ryan sat down next to him, and rubbed his back, and kissed his head. This became the routine for Ryan. He would run from wherever he was, sit down next to Brayden and rub his back and kiss his head. "Otay, Bayen" is what he would say...(translation: it's okay, Brayden). Ryan was 2. He became a caregiver at the age of 2!
While this is a proud mom moment for me, that I have such an amazingly compassionate son, it also saddens me to think how quickly Ryan grew up because of this condition. From such a young innocent age, he witnessed the most horrifying thing happen to his little brother repeatedly day after day. He grew up. He may not have been talking much, but he understood that his little brother was suffering, and that he needed him. He understood what Brayden's shrill cry could lead to and would run to him ready to comfort. It is not fair. It's not fair that he had to be exposed to such sadness at such a young age. That he had to learn to be a caregiver at such a young age. Yes, I am proud of my Ryan, I just wish he didn't have to be exposed to this.
Sibling Caregivers
During National Caregiver Month, I think a lot of attention goes to the professional caregivers, the parents, doctors, nurses etc. Siblings are the unsung heroes in this journey. They often go unrecognized despite playing such a major daily roll in the care of a child with a medical illness or medical condition. They suffer along side their brother or sister, and care for them with a strength, and love that is incredible. They are their support, their cheerleaders, through testing, med trials, and hospital stays. They are the best distraction from the (let's face it) crap the patient has to go through. They are a blessing to the family, reminding us that this condition is only just a part of our life, not our whole life. I am so proud of my boys for how they have grown together through this. They have compassion for others, they give of themselves to those in need, and they genuinely love, and care about each other. They are my heroes!
Happy National Caregiver Month!! Remember to thank the caregivers in your life!!
~Jennifer
