All tagged Siblings
After seeing a new musical in LA about a family struggling with their daughter’s epilepsy I came home reanalyzing the affect Adelaide’s life, and now Anessa’s, has on Jackson. Once a medically-complex/disability sibling always a medically-complex/disability sibling. But just because the wheel isn’t squeaky doesn’t mean it isn’t also in need of some extra TLC.
Through the marketing of Normal Broken, I’ve had the opportunity to listen, relate, and connect with person after person who is facing their unique grief while craving a sense of community and understanding. One of these people, is Tasha Firoza Faruqui, a pediatrician and mother of three, whose middle child, Soraya, has an unknown neurodegenerative condition with no cure. Today, I ask you to sit in the dark with Tasha, Soraya, and their family. To witness their journey and send them the love and strength they need, as they survive with tears on their faces and laughter in their hearts.
I’ve dedicated more than one blog to extolling the virtues of siblings of kids with disabilities: empathy in spades, adaptability, and kindness for all, to name a few. This weekend, when dropping Jackson off for camp, I discovered another to add to the list. Now, at the time Jackson was developing this particular superpower, I was fairly certain I was damaging him for life. Turns out that could not be further from the truth.
It really has been remarkable how seamlessly Strawbaby has folded into our lives. She hasn’t even been in our home for five months and it’s beginning to feel like she’s just always been here.
She wasn’t though.
We all had prior lives that shaped us and that will continue to do so. Whenever I need a reminder of this, I need look no further than Jackson and Strawbaby’s relationship.
As we push forward on our adoption journey, I’ve continuously battled the thought that our adopted child will in some way be replacing Adelaide. Rationally, I know this isn’t true - how could they?! But, the truth is, we probably wouldn’t be adopting if Adelaide were alive and healthy. Then, after months of wrestling with this heartache, I finally came to a realization this week that brought me infinite peace.
Like any doting parent I worry about my child. I want him to have friends, to be nurtured and challenged. I want him to be kind, confident and curious. I want him to be happy. These desires are more challenging to achieve though when your child is exposed to life’s uglier truths long before you or they are ready. When that thin bubble is burst no amount of parental protection can recreate it, but all hope is not lost - the kids will be alright.
I first connected with Cindy Angulo online a couple years ago when she was a new epilepsy mama. Since then I have enjoyed watching her beautiful, strong and resilient daughter, Vera, grow into a spunky little girl. I could not have been more thrilled for the Angulo’s when they announced Vera was going to be a big sister but knew that behind the joy lay an anxiety I could only imagine. So, naturally, I asked Cindy to discuss that anxiety now that baby #2 is only days away.
Ok, so I know I wrote an entire blog post about how I refused to write about puppies just because it would make people feel better. Buuuuuuut that was before we brought one home. Since adding this beauty to our family there has been a noticeable shift in Jackson’s total body energy. This little pup is filling a hole in Jackson that I hadn’t noticed was there until she arrived.
Time has had a jarring presence in our house lately: speeding up then slowing down, each day blending into the next, not adhering to the laws of physics. I feel like I’m adrift with no land in sight. But there is one thing helping me keep my bearings amidst these rough waters: Jackson. I know everyone thinks their kid is incredible but this kid, Adelaide’s big brother, is really something else. He is my lighthouse in the storm.
Photo credit: Jennifer Loomis
We only ever wanted to have two children. That was always the plan. A) I had no interest in being outnumbered by my kids and B) while growing a child in your body is an unreal experience, the gas, aches, nausea, swelling and all the rest of it is no joke. When Adelaide was born seemingly healthy, I thanked my uterus for its service and mentally closed up shop. Then life got complicated and we were faced with a whole new set of family planning questions.
I used to envy the way Jackson could see Adelaide without the sadness that tinged my view. However, as Jackson is getting older he is gradually beginning to understand how Adelaide is different from a neuro-typical sister and it pains me to watch the sadness and worry creep into his life. There is no question that their special-needs sibling bond adds so much to both of their lives but like everything else in this parenting circus it is a balancing act. A really stinking cute balancing act, but one all the same.
Over the course of this blog I have spent significant time noting how Adelaide is different, commenting on what she is not able to do and the dreams I mourn that I once had for her. I could easily write a post about our last year in review, which would inevitably make me acknowledge all of the skills she’s lost and trials she’s faced. Honestly, that sounds fairly miserable. So, instead, I would like to take a moment to focus on all the amazing things that Adelaide is still able to do. The secret ways she communicates with us and all of the wonderful qualities that make Miss A the strongest person I know because she truly is a Wonder Woman.
